Life On The "T" List...

March 8, 2012 - World Kidney Day!

2012-03-08T10:27:00.000-08:00

I was trying to come up with something witty for today, since today is World Kidney Day 2012! But I know it is more of a day to poingnant and somewhat direct. Now, if you remember, on World Kidney Day 2011, I had yet received my new kidney...so the significance of this year's World Kidney Day takes on a whole new meaning for me.

This time last year, to be honest, I had no idea what a little two pound organ was fully capable of. I knew I was sick, but I didn't know how sick because kidney disease is a very slow progressive disease. But as you have read from this blog in the past, once the transplant occurred, my life had changed, and not in such a slow, subtle way that kidney disease had changed my life over the previous 5-8 years - this was dramatic !

It was as if the surgeon, when he transplanted Tommy's kidney into me, just flipped a switch - I instantly had more energy because Tommy's kidney started working immediately!

But as happy as I am today, and as relieved and fortunate to have gotten a second chance at life, there is still a certain sadness still. I was one of the lucky ones...I got the second chance. Do you know, that yesterday, on average, 18 people died in this country because they were waiting for their second chance.

Now, 18 may not seem like a very big number, but when you pair it with the 18 people who will die today and the 18 who will die tomorrow, it adds up. Soon that 18 turns into 126 this week, and 504 this month, and 6,570 this year - no, wait, we had a leap day this year, so that is an additional 18, bringing up to a total of 6,588 !

The 18 who will die today are in no way anonymous...they are someone's mother, or father, or sister or brother, or aunt or uncle, or a cousin, or a co-worker, or someone you sat next to in church, your child's classmate, a father trying to provide for his family, a single mother raising two little kids. Those are 18 people who did not have to die.

Do me a favor, take a look at your friends list today on Facebook. Think of what it would be like to lose 18 of those friends today - devastating. Then another 18 tomorrow.

But, fortunately, it doesn't have to be this way - not at all. And there is a very simple solution, and it is all through a simple act of kindness. And that is to become an organ donor. If you are renewing your licence, just check the box that asks you to become an organ donor - how easy is that? Really, it can't get much simpler. You can also go online to: www.DonateLifeNewEngland.org , or www.organdonor.gov . Or, here's another way, if you know of a relative, or friend, or co-worker, or someone on your Facebook friends list, that needs a kidney - get tested.

How great would you feel if you saved someone's life today ???!!!

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org, www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

February 10, 2012

2012-02-10T18:13:00.000-08:00

This past week I had an incredible opportunity to tell my story at Harvard Medical School.

It all started back in June of last year…several days after the transplant, Dr. H. walked into my hospital room, grinning ear to ear because I was doing so well. We were talking about my labs and how well my new kidney was doing and how I was feeling. Then Dr. H. says to me, “I would love it if you would come and speak to my class at Harvard.”

I was floored, but of course I immediately said yes. I said yes without any hesitation, which is incredible in and of itself because I am one of those people who usually cringes at the thought of speaking in public. I have never considered myself much of a public speaker…I have always been the shy one doing all of the work in the background. However, over the last several years, I have been forcing myself into situations that call for some form of public speaking, trying to get myself through this fear.

I think one of the reasons, or probably the single most important reason, I agreed to do this was because of the subject matter – Diabetes and Kidney Transplantation. I have lived with Diabetes now for about 41 years, 28 as a Diabetic myself, and the rest of the time growing up with Linda being a Diabetic. And, of course, then there is Kidney Disease and the resulting transplant – kidney disease I am fairly new to (about eight years or so), and the transplant I am definitely a newbie, just having the transplant eight months ago.

Fast forward to this past Monday. Dr. H. had invited me to come early so that I could sit in on her minicases class, as well as another lecture, and then I was due to begin my lecture at 11:30. It seems like I have been in and around the medical field all of my life because of Diabetes, so it was interesting to be sitting in a class at Harvard listening to Dr. H. talk to her students about the effects that potassium has on the kidneys…similar to the many discussions Dr. H. and I have had over the years, so it was great that I could sit there and know what was being talked about.

After the minicases, Dr. H. and I walked over to the auditorium (called an Ampitheater at Harvard). I guestamated that there were approximately 200 seats in this ampitheater, and when we walked in for the first lecture it was about 1/3 full, and Dr. H. turned to me and said, “Don’r worry, there will be many more here when you speak.” And sure enough, when I got up to speak there were…it wasn’t completely full, but it felt like it.

So, as it comes time for me to get up, Dr. H. begins to introduce me, and she starts out by simply saying, “Our last lecture is…” and for a brief second I zoned out because as I heard those words “last lecture” I immediately thought of Randy Pausch at Carnegie Mellon University delivering The Last Lecture in 2007. If you haven’t seen it, it is well worth watching, I have watched it several times and read the book, The Last Lecture, that followed.

I remembered how Randy Pausch handled himself during this lecture, knowing he was going to die because of the pancreatic cancer that he had been battling for so long. He stood there with grace and poise and humility, as well as a great deal of humanity, and in the instant that Dr. H. uttered those words upon introducing me, and I immediately felt at ease…not because I was about to deliver a lecture on par to his (which mine was far from that, trust me), but because I saw part of myself in him.

During his last lecture, Randy Pausch said something that has stuck with me ever since…he said:

“The brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people.”
― Randy Pausch, The Last Lecture

With my Diabetes and Kidney Disease, I have encountered many brick walls, and I have always been determined to not only get to the other side of the brick wall, but to obliterate the brick wall in the process. So, a talk in front of 100 to 150+ people should be a piece of cake (sugar free cake at that!)

As I walk up to the podium, I have one additional fear to overcome, and again, I don’t think I am alone in this fear – tripping ! Trust me, I’m sure if you do a search on YouTube, you would be able to find plenty of examples of people tripping on their way up to give a speech or presentation, and the last thing I wanted was to trip on my way up there at 11:30, and then have it posted on YouTube by 11:32 and then have it become an internet sensation by the time I was finished speaking. Thankfully, I did not trip, nor do I think the students I was addressing would have done that anyways.

As I got going, and after I got rid of the “cotton mouth” feeling, I felt very comfortable. I was a pleasure and an honor to be telling my story, because my story involves so many people, but in particular Linda and Tommy, who have been instrumental throughout my life. I was also able to give the students a firsthand look at someone going through a kidney transplant, and blasting through that brick wall to show them what it is like on the other side, and how important organ donation is.

However, one of the best parts of the whole lecture was the genuine interest the students had in Tommy and his well being. Tommy saved my life, and I am very happy that they were able to recognize both sides of the transplant process.

To Dr. H., thank you for the invitation…I hope I did you proud.

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org, www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

January 11, 2012

2012-01-10T21:28:00.000-08:00

It’s been a while since you have heard from me. As you may know, my mom had been very sick, fighting cancer, so my attentions have been with her and helping her in her last days. At just after 5:30 on the evening of December 27th, mom succumbed to cancer.
But I am not going to dwell on the sadness, rather I would like to tell you a story about something that happened that really touched my heart in moms last days.

The story actually begins back in October. I had received an email from the website www.rockscarlove.com . For those of you who know, you know Rock Scar Love is a fantastic website run by Amy Tippins. According the websites banner, “Rock Scar Love is inspiring passionate lives through clothing. We celebrate sexy scars, the lessons they teach us and the strength they create.” But in October, Amy added a hand-made crystal awareness bracelet, made with Swarovski Crystals.

I remember I was sitting with mom when I received this email, so I pulled it up on her iPad so that she could see a better picture of it since I could enlarge the picture on the iPad. Mom took one look at this bracelet, one word slipped from her lips: “Beautiful!” I then asked her if she would like a transplant awareness bracelet to commemorate mine and Tommy’s transplant surgery earlier in the year, and she said yes, and asked if I could get it for her for Christmas.

Fast forward to mid-December…moms condition had degraded to the point that we had hospice overseeing her final days, and they had been with her for about a month. Needless to say, I had lost track of time, of days, of everything. Suddenly, its December 15^th and I am holding moms hand when I realized that I never ordered the bracelet that she had wanted.

I immediately sent an email to Amy Tippins explaining the situation to her and I asked her if she could help expedite the bracelet so that I could give it to mom for Christmas. I was asking a lot of Amy, especially just before Christmas, and she could have easily said that it was too difficult to get it to me in time for Christmas. But she didn’t, rather she and Rock Scar Love came through big time !

Hospice had been telling us most of the week that mom was close to death, so I was hoping to get the bracelet in time. I received moms bracelet on the 21^st. By this time mom’s condition had continued to deteriorate, she was no longer speaking with the exception of a word or two every now and then. It was unclear how much mom was understanding what was going on around her. But something interesting happened when I went to put it on her...now mind you, she is in and out of consciousness, and while still asleep, she lifted her left arm off the bed, sort of as if to tell me "please put it on this hand." I placed the bracelet on mom’s wrist as she slept, but I still spoke to her and told her what I was doing and what I had put on her wrist. Sometime later that day mom awoke slightly as I was sitting beside her on her bed. What happened next was absolutely incredible to me (excuse me for a second here while compose myself…)…

I had not immediate noticed that mom was awake, but then she lifted her wrist towards her face, and with her eyes half open looked at her bracelet, and in the next motion, mom reached out and put her hand on my arm. It was as if mom was saying thank you and that she liked her new bracelet – at least that is what I want to believe.

The kidney transplant awareness bracelet looked absolutely gorgeous on mom, and I couldn’t have been happier to have been able to give it to her just days before she passed away. I owe a huge thank you to Amy Tippins and Rock Scar Love (www.rockscarlove.com) for allowing me the opportunity to do this one last thing for mom. I would actually urge anyone who wants to spread the word transplants, that you visit Rock Scar Love and pick yourself up a t-shirt or two, and even take a look at the awareness bracelet.

This whole situation actually reminded me of a Christmas song by the group NewSong released back in 2000 called “The Christmas Shoes”, and subsequent movie of the same name staring Rob Lowe in 2002. The chorus of the song goes like this:

Sir, I want to buy these shoes for my Mama, please
It's Christmas Eve and these shoes are just her size
Could you hurry, sir, Daddy says there's not much time
You see she's been sick for quite a while
And I know these shoes would make her smile
And I want her to look beautiful if Mama meets Jesus tonight

It’s that last line that gets me, and sort of reminds me of my situation with mom. In a sense, I wanted mom to look beautiful if she met Jesus that night.

As I said, the bracelet was beautiful on her, and she looked stunning when she met Jesus and got to see my Dad and my sister, Linda, who had both previously passed away before her.

I Love You, Mom…Thank you for everything…You Lived a Full Life !!!

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org, www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

December 13, 2011 - Six Months And A Promise To Mom

2011-12-13T19:12:00.000-08:00

Six months ago, I was looking out at the world sort of through a prism. A prism, as you know, takes what we see and distorts the original image many images…many different images. And depending on your view, you may not like what you see, but then again, what you are looking at could be a beautiful kaleidoscope.
Six months ago, I was awaiting a life changing kidney transplant. My Diabetes had ravaged my body into near submission. But as I had been taught by my sister, Linda, before me, Diabetes may be able to take a few good swings at me, but I was damned if I was going to let it kick the shit out of me. My fight with Diabetes has been similar to that of the fictional heavy-weight prize fighter, Rocky Balboa, and his epic fights with Apollo Creed and others.

For those unfamiliar with Rocky (from the original Academy Award Best Picture winner in 1976), he was a down on his luck fighter who got a shot at the big time in a fight with Apollo Creed. The fight went the distance. But we learned a lot from Rocky as a person, not just as a fighter. However, his life outside the ring and his life inside the ring, in many ways, paralleled each other. Rocky had heart and desire, and a will to win no matter how many times he was knocked down.

Later this month, I will mark my 28^th year with Diabetes. I have taken some pretty severe punches from it, the need for bypass heart surgery, eye surgery and neuropathy to name a few. But this latest punch, kidney disease and the need for a kidney transplant, I took was probably the most emotional for me.

I knew if I did not get the transplant I was headed for dialysis…and I mean no disrespect to those that have been through dialysis, or are currently on it, but I was scared of it from what I had heard from other patients, and I knew, at least in what the statistics show, that getting a transplant before the need for dialysis tends to have a longer success rate for a transplanted kidney.

But it was emotional for me because Tommy was donating one of his kidneys to me. I think I was more scared for him getting the surgery than I was for me. Then there was Christine, who had supported me helped me get ready for the surgery. But the most emotional part of it all for me was seeing what mom was going through as a mother seeing her two sons in surgery at the same time, one helping the other to live.

Six months ago, I remember seeing mom being wheeled into my room in her wheelchair (paralyzed on her right side from a stroke several years ago) by Jodi, Linda’s best friend and someone who has been like another sister to Tommy and I.

Fighting back tears, I said. “Hi Mom.” And she simply said, “Hi Michael…you did it! You both did it! I am so proud of both of you!”

Fast forward to today…today I had my six month check-up with Dr. P. We talked a lot about how I was feeling and how my labs have been over the course of the last six months. But there was nothing clinical about our discussion. Throughout the whole appointment, Dr. P. wore a smile from ear to ear because she was genuinely happy as to how I was doing.

Over the last six months, I have experienced many of the ups and downs of post transplant life…thankfully, mostly ups. I had an appreciation for life before, but I have an even greater appreciation now.

Aside from the quality of life that I now have, one of the more positive things that has come from this whole experience, is the friendships that I have formed, particularly through this blog. Your experiences, your words of encouragement have meant a lot to me. I hold a very special place in my heart for all, but especially for one, who I now consider part of my family. She has not had the experience of a transplant, and I hope to God that she never has to, but she has helped me with my Diabetes as I have with hers.

Just as I have had many great experiences over the last six months, like the prism I mentioned, there are many positive images, but there are some images that are not as positive.

Six months ago, I was ecstatic to see mom when she came into my room. Today, I am ecstatic to see mom every day because I know there may not be many of these days left for her as she has been fighting off cancer. Mom taught me how to have a fighting spirit. She has accepted that she is in a fight that she cannot win, but she will not let the cancer know that.

Mom…it is my promise to you…that I will continue to fight. I will take every punch thrown at me and if I am knocked down, I will get back up and continue to fight. You fought for Linda and I with our Diabetes, and I will not let your fight be in vein. I promise, I will fight as you taught me, whatever form that may take – be it with my own Diabetes, protecting my new kidney, my heart, my eyes, my nerves; be it through supporting others and educating others in Diabetes and kidney disease; be it through whatever means possible.

Mom, six months from now at my one year anniversary of my new lease on life, I know you may not be with us physically, but your spirit will be in our hearts. Thank you for everything you have ever done for me. Thank you for walking with me this far into my life. Please know that you have been an indomitable inspiration. You have given me the tools to continue, and I hope I make you proud the rest of the way. Mom, I promise to continue fighting for me, as well as others.

Mom……Thank You and I Love You !!!

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org, www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

November 24, 2011 - Thanksgiving

2011-11-23T23:17:00.001-08:00

Giving thanks is something that many of us take for granted until we are slapped in the face with a real life changing event. If things are going well, we sometimes forget to stop for a moment and think about how we got to this great place.

So today, Thanksgiving, I would just like to tell you about a few things that I am thankful for, and I invite all of you to share, if you wish, what you are thankful for as well…

I am thankful for:

· A second chance at life because of Tommy. On June 7^th of this year, Tommy gave me that second chance when he donated his kidney to me. As I have said many times here, all I can do is say thank you for the amazing selfless gift he gave me.

· My family. They have been there every step of the way with me.

My wife, Christine. For all of the love and support she has given me through all of the ups and downs of this year.

· My friends. I have met or been introduced to so many wonderful people around the country to around the world. I am very fortunate to have you all in my life.

· Mom. I am thankful to have today to spend with her. She may not be with us much longer, but none of that matters today. Today will be a day to try and make her as happy as possible.

· Everyone who reads this blog. Thank you for taking such an active interest !

I wish you all a very Happy Thanksgiving !!! May your day be filled with family and friends who are special to you. Giving thanks may only take but a mere few moments, but it lasts much, much longer than that, perhaps a lifetime !

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org, www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

November 14, 2011 - World Diabetes Day

2011-11-14T08:14:00.001-08:00

Today, November 14^th, is World Diabetes Day.

I consider myself to be a fairly well informed Diabetic. I try to stay abreast of all things Diabetes. I want to know how others are treating their Diabetes and living with it every day; I want to know if there are new advances to get excited about – unfortunately most of those advances are in the equipment that we use, such as glucose meters or insulin pumps; and I want to know anything and everything else I can learn about Diabetes, meaning, I want to be a sponge and soak it all up.

But in the interest of full disclosure, this Diabetic, living with the disease now for nearly 28 years, I have to admit I was unaware of World Diabetes Day, let alone that November 14^th is set aside to play host to this day. For a long time, I have been acutely aware that November is National Diabetes Month in the United States, but for one reason or another, World Diabetes Day escaped me. So, as I am just learning about it, I think it is a good exercise for all of us to become more aware of this day and what it means, if you don’t mind me indulging a bit.

According to the International Diabetes Federation website, “World Diabetes Day (WDD) is celebrated every year on November 14. The World Diabetes Day campaign is led by the International Diabetes Federation (IDF) and its member associations. It engages millions of people worldwide in diabetes advocacy and awareness. World Diabetes Day was created in 1991 by the International Diabetes Federation and the World Health Organization in response to growing concerns about the escalating health threat that diabetes now poses. World Diabetes Day became an official United Nations Day in 2007 with the passage of United Nation Resolution 61/225. The campaign draws attention to issues of paramount importance to the diabetes world and keeps diabetes firmly in the public spotlight. This year sees the second of a five-year campaign that will address the growing need for diabetes education and prevention programmes.”

So why November 14^th specifically, you ask (as I did). Well it is for a very good reason, in fact. As it turns out, November 14^th marks what would have been the birthday of Frederick Banting, who along with Charles Best were the discoverers of insulin in 1922.

The slogan at the top of the International Diabetes Federation website is: “Act On Diabetes. Now.” This is a very important statement. It applies to all of us, Diabetics and Non-Diabetics. It is a call to action for Diabetics to realize what type of control they are in with the disease and improve that control, even if your own Diabetes management is going well, because, unfortunately, Diabetes is a Merry-Go-Round that we cannot get off. And for Non-Diabetics, this is an opportunity to become more informed and more educated about Diabetes – about risk factors, about complications, and how to support family and friends living with Diabetes.

For me, today is a day to honor and pay respect to those that I know and don’t know who wake up every morning and go to bed every night hoping and praying for a day when there is a cure for Diabetes. It is also a day for me to honor and respect those that have had the opportunity of a pancreas transplant and are living without the thought of needing to take shots or take a bolus in their pump to cover a meal with insulin. And today is a day to honor and memorize those who lived everyday with Diabetes and are no longer here with us.

Today, I honor, respect, and in some cases, memorialize:

Linda Burke – My sister, who passed away, at the age of 24 in 1989, due to complications from Diabetes. A part of Linda is with me every day helping me with my Diabetes. She was and still is, a great teacher.

Norman Burris – The father of a very good friend, who lived with Diabetes for many years, before passing away. He was a great source of inspiration for his family and friends, especially to his daughter.

Elizabeth Fallows – A high school classmate of mine who passed away several years ago, who was a Diabetic from a very young age.

Eric Harrington – A neighbor when I was growing up, who lives with Diabetes today.

Cora Rodych – A Diabetic living in Canada who has received a kidney and pancreas transplant, and has been doing well with her Diabetes since receiving her new pancreas.

Christine Burke – My wife, living with Type 2 Diabetes since November 1998.

Reyna Almond – A very good friend, living with, and succeeding at managing her Diabetes well.

All the Patients at Joslin Diabetes Center in Boston, and all of the patients at similar clinics across the country and across the world – We are all in this together !

And I would be remiss, if I did not thank all of the many doctors and nurses, as well as our family members, who have helped us all learn to deal with and help manage our Diabetes…Thank You !!!

If you, or someone you know is interested in learning more about Diabetes or organ donation, please contact: www.diabetes.org, www.joslin.org, www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

October 21, 2011

2011-10-21T13:00:00.000-07:00

Tomorrow, October 22, 2011, marks an important day around the country. No, it’s not a national holiday, but with as much success each year since its inception in 1992, perhaps it could be someday, you never know.
What is this special day, you ask?

It is Make A Difference Day! A national day of giving back. A day where everyone has a chance to step up for their communities. Perhaps you and a group of friends get together to help clean up a park so kids can play safely; or putting together an event where you help the homeless, perhaps in a soup kitchen…the ideas are endless.

But I have an idea that many may not have thought about but I would like you to consider, talk about with your family and friends about, and then take action. It is a personal decision, but once you make that decision, it is so easy to accomplish, and what you get out of it is almost too difficult to put into words.

The simple act of kindness that I would like you to consider on Make A Difference Day is becoming an organ donor.

This is not a day to throw a whole lot of numbers at you, but suffice it to say, there are many, many people around the country and around the world in need of a life saving act of kindness. You may even know people in your communities, in your cities and towns, where you work, where you take your yoga or Pilates or Spinning class, or they may even be your next door neighbor, all of whom may need a kidney, a pancreas, a liver, or a heart.

As you know, I was the recipient of a donated kidney earlier this year, from my brother, Tommy. I was one of the lucky ones. Had Tommy not been a match, who knows where I would be today – probably joining many of the thousands on dialysis, waiting and hoping for the phone to ring.

And that wait, for those that do not have a ready, willing and able donor, can be excruciatingly long – not months, years. And from what I am told, there are similar wait times for people needing other the other organs mentioned, as well.

Perhaps you have had a family member or dear friend receive an organ from a complete stranger in order to keep them alive, so you could celebrate more birthdays and holidays with them. Well, if that is the case, and you haven’t done anything about it…this is your chance to step up, man up, woman up, and pay it forward.

If you want to make a positive change in your life AND in the life of someone else, then stop putting it off until tomorrow, because tomorrow sometimes never comes for some people. Make a difference in someone’s life…make a difference in your life – become an organ donor !!!

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

September 30, 2011

2011-09-30T10:27:00.000-07:00

26 Million !

26 Million…this is how many people just in the United States have Kidney Disease…26 Million!

I have to admit, before actually being diagnosed with Kidney Disease, which as you know was brought on by my Diabetes, I knew very little about the disease as a whole…or, and perhaps more importantly, how many variations of the disease there is. Some of those variations I have already touched on in earlier posts.

I want to tell you about another form of the disease, a form that has not received a whole lot of attention at all. In fact, I am willing to bet that there are a good number of people who have Kidney Disease in general, and those who read this blog specifically, that may not even know this form of kidney disease even exists. I also want to tell you about a special event being held in a couple of weeks with regard to this disease.

The form of Kidney Disease I am talking about is called Membranoproliferative glomerulonephritis (MPGN). According to emedicine.medscape.com: Membranoproliferative glomerulonephritis (MPGN) is an uncommon cause of chronic nephritis that occurs primarily in children and young adults. This entity refers to a pattern of glomerular injury based on characteristic histopathologic findings, including: (1) proliferation of mesangial and endothelial cells and expansion of the mesangial matrix, (2) thickening of the peripheral capillary walls by subendothelial immune deposits and/or intramembranous dense deposits, and (3) mesangial interposition into the capillary wall, giving rise to a double-contour or tram-track appearance on light microscopy. If you are aware of MPGN, you may also know that there are three separate types of MPGN, Type I, Type II and Type III.

You may have also seen MPGN Type II referred to as Dense Deposit Disease, or DDD. WebMD explains Dense Deposit Disease (DDD) as a rare kidney disease that stops the kidneys from correctly filtering waste from the blood. The name is descriptive of the electron-dense changes that transform the middle layer (lamina densa) of the glomerular basement membrane (GBM) in a segmental, discontinuous or diffuse pattern. The glomeruli are the filtering units of the kidney. Blood flows through very small capillaries in each glomerulus where it is filtered through the GBM to form urine. When DDD is present, deposits in the GBM lead to disruption of kidney function. Because damage to glomeruli is progressive, about half of all persons with DDD experience kidney failure after living with their disease for 10 years. The development of kidney failure means that dialysis or transplantation must be started.

I am singling out MPGN Type II for a very special and personal reason. You have seen me mention before that I have a great relationship with all of my cousins, to the point that they feel more like brothers and sisters rather than cousins. If I could have been the only one in our family (immediate and extended) to ever have been affected by Kidney Disease, that would have made me very happy because that would mean that no one else in the family would ever have to live a day worrying about kidney failure, dialysis, or even transplantation.

Unfortunately, that is not the case. My cousin Tommy, and his wife, Rose, have two beautiful children – Brenna, who just began her freshman year at college, and Tommy Jr. (The names Tommy, Jimmy and Michael are very common in our family…it is pretty funny sometimes to see someone (especially my mom or Aunt Mary) call out any or all of those names at a family gathering and have what seems like twenty people turn around and respond).

Tommy Jr. is 15 this year, and a sophomore in high school. But about four years ago in 2007, Tommy was diagnosed with MPGN Type II/DDD. Tommy loves school and got involved in SADD (Students Against Drunk Driving) and Junior AOH (Ancient Order of Hibernians) last year. His interest and talent in art continues to grow and he will continue with art classes at school. Baseball is still his favorite, playing as much as he can throughout the year. He played for the Freshman High School team this past year in addition to 3 other teams. It was a very busy spring and summer, his travel team winning the coveted Pennsylvania State Championship 14U Title. After a few weeks off, he is ready to start Fall Ball this weekend.

Looking at Tommy, much like many others who have Kidney Disease, you would never know that he and his family deal with this disease every single day. There is the constant regimen of medications and diet. There are no days off. But what you see in Tommy, is not so much of a person that is sick, but of young kid trying to enjoy every day with his family, friends, teammates and classmates. Much of Tommy’s life is like every other 15 year old but there are many things so different because of the disease. While he is one of the lucky ones so far, there are many battling much worse symptoms. His daily medication has many side effects…still most troubling to him is growth deceleration. He continues a sodium restricted diet and though he is used to it by now, the daily reminder of being different is always there.

This is Tommy with the logo he made for his walk.

One of the sad truths to this rare form of Kidney Disease is that approximately half of all children with DDD/MPGN II will go into kidney failure between 8-10 years after diagnosis. These children will require dialysis or transplantation in order to stay alive.

Two of the things I remember vividly as I was being rolled into the operating room for my transplant…one was of my brother, Tommy (see I told you there were a lot of Tommy’s in our family) going through surgery to help save my life; and the other was of Tommy Jr., just wishing that there would be a cure for his form of Kidney Disease, so he wouldn’t have to experience full kidney failure, dialysis or even the possibility of needing a transplant.

Which brings me to another sad truth of MPGN II/DDD, is that funding for research for DDD is extremely limited. So, Tommy, with the help of his family, aunts, uncles and grandparents, started to raise money for DDD. This year he will be participating in Tommy Kane’s 4^th Annual Walk/Run Benefit for Kidneeds, which will be held on October 15^th – just a couple of weeks away.

Tommy would like to raise as much as he possibly can for his disease, and this year he has set a goal of $8,000. Unfortunately, Tommy has a ways to go in order to reach his goal. So, I would like to ask all of you to consider helping Tommy reach his goal. I realize things are tight for everyone, but even if everyone contributed a just $5, $10, or even $20 (a week’s worth of coffee at Dunkin’ Donuts, or any other coffee shop), that would go a long way in helping Tommy reach his goal.

Tax deductible donations can be made online at: http://www.active.com/donate/TommyKane2011 (Visa, MasterCard, American Express, Visa Debit, and MasterCard Debit all accepted), or you may mail your donation to Karen Williams, 45 Inverness Road, Holbrook, NY 11741. Make checks payable to: Kidneeds, Greater Cedar Rapids Community Foundation.

If you are also within an hour or two drive of the Philadelphia/Bensalem area and would like to participate in this event registration begins at 9am for the 5K Run/Walk (3.1 mile), which will start at 9:30 am, followed by a 1 Mile Fun Run/Walk starting at 10:00 am. Tommy’s walk will be held at Neshaminy State Park, Pavilion #1. The park address is 3401 State Road, Bensalem, PA 19020, which is located at the intersection of State Road & Dunks Ferry Road. It is easily reached from the PA 132 (Street Road) Exit off I-95.

Please do me a favor…please pass along the link to this blog or the Facebook page to everyone in your address books/contact lists. I would like to call attention to Kidney Disease in general, and MPGN II/DDD specifically. I would love to see Tommy reach his goal, that would be a tremendous accomplishment, and he would be doing his part to reduce that number of 26 million affected by Kidney Disease! On behalf of Tommy and his family, I want to thank you for helping him raise these funds and reach his goal. If you would like additional information about DDD, please visit: http://www.medicine.uiowa.edu/kidneeds/index.htm

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

September 26, 2011

2011-09-26T10:00:00.000-07:00

Well it finally happened. I knew it was just a matter of time. But like most, I guess, I was hopefully trying to put it off as long as possibly could, and now realizing I wish I could have put it off for good. It was inevitable, especially since my immune system is pretty much shut down now so the anti-rejection meds can do what they are suppose to do, and that is protect my new kidney.

What happened was, I got my first cold since having the transplant back in June. No big deal, right? Or so I thought. Now, I know we have all had colds. Most of the time colds are harmless, they just make us miserable for a couple of days, three, maybe four days, tops. Then we feel better…no sniffles, no headache, no more achy feelings, no more itchy, scratchy feelings in our eyes or throat…it’s all gone, almost as if it were never there in the first place. Only that didn’t happen in this case.

Nope, that didn’t happen at all. I did everything I was suppose to do…I called the transplant center at the beginning of the cold to see what over the counter medications I was able to take that wouldn’t mess with my anti-rejection meds. Then the cold lingered and lingered and lingered. Then at about day four, I called the transplant center again and said that I was feeling better, overall, but I just can’t shake this nagging cough. I then suggested a chest x-ray because of my history over the last five to ten years. I said that I am probably just overreacting since this is my first cold or respiratory event since the transplant. Betsy, the transplant coordinator, said it is better to be safe than sorry. She then asked if I could get the x-ray done with my primary, Dr. M., that way I wouldn’t have to come all the way into Boston for what would be a very quick appointment.

I called Dr. M. and she put the order in for a chest x-ray…the x-ray was done, and sure enough, what was once just a simple cold had turned into a small spot of pneumonia on my right lung. The Radiology findings report read as follows:

“There is mild accentuation of interstitial markings as compared with prior chest x-ray of 5/11/2011. May represent mild fluid retention. There is some question of some focal increased density in right third anterior interspace. It raises the question of super imposed infiltrates. No other interval change since prior 5/11/2011.”

I contacted the transplant team and told them of these findings and said that Dr. M. suggested a shot of Rociphin and follow that up with an oral antibiotic. The transplant team ok’ed the shot of Rociphin and said that they would consult with Dr. P., as to how to proceed beyond that.

Dr. M’s office was open late on this particular day (Thursday), so I didn’t have to wait until the next day to get this course of treatment started. After I checked in at the desk, I was then called to go into an exam room. The nurse followed me in, and with her she had the syringe filled with the medication and an alcohol swap. So as the nurse was verifying my name, date of birth, etc., I begin to roll up my sleeve so I could get the shot in my arm. She then turns to me and says, “Oh, no…DROP ‘EM !”

Inside I’m saying to myself, “OH SHIT!” Now, I have never had a problem getting a shot or giving myself a shot, after all I have given myself somewhere in the neighborhood of 20,000 injections of insulin before I went on the pump. But if there is one thing that I hate, it’s getting a shot in the ass…and this particular shot hurt like hell !!! It still hurt two days later. You know the type of shot I am talking about…it’s not shirt and thin like most normal shots. No, no, ney, ney…this one is like the size and length of a javelin, and it feels like a javelin jabbed into your ass.

Needless to say, the following day, the transplant team also suggested putting me on a ten day course of Levaquin. And that is where I am right now. I will have a follow-up chest x-ray later this week to see if the pneumonia is resolving, which I hope it is.

I guess the lesson that I have learned here, is that in post-transplant life, everything that was once simple, such as a cold, may not be so simple, which I am now more than sure that most post-transplant patients are well aware of.

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

September 18, 2011

2011-09-18T12:50:00.000-07:00

I was re-reading the post from last week where I talked about Dad, and a few more memories crept to the front of my mind.

Particularly, when we would take a ride into Boston from the South Shore. Dad, would sometimes take us with him if he had to check out a job that he was going to be doing for someone the next week, to determine what he would need for materials and man power. I vividly remember during those rides he would say to us: “Look up there, I did that one”, as he would point to the John Hancock Building referring to the fact that he helped build that building. And this would go on as we drove around and about the city…Dad’s mark, or stamp, if you will, was everywhere – he literally helped to build the city of Boston, and he was damn proud of it!

Dad was also very involved in his church, Holy Family Church in Duxbury. If there were three things that Dad was very proud of, that set his legacy in place, sort of his own version of the Holy Trinity of the Father, Son and Holy Ghost (Dad would always say Holy Ghost as opposed to Holy Spirit), was his Family, the end result of the work he did, and his Faith.

Dad had a lot of faith, and was very involved in the church, from Parish Council to being an usher at the 10:00am Sunday morning mass, to being a part of the Building Committee when it came time to build a new and bigger church for the community. In fact, it was with the new church that the three arms of his Trinity came together one day in a sort of Perfect Storm for him, and I wish I could find the picture of it to show you. One day when the new church was nearing completion and getting ready to open, Dad, with Tommy helping him (Family), laid the cornerstone (the result of the work he had done) on the new church (a symbol of his Faith).

But one day long ago, it was brought to Dad’s attention, that there were senior citizens in town who wanted to attend church, but did not have a means of getting there. As soon as Dad heard this, he began to show up at the Senior housing complex every Sunday morning before the 10:00 am mass and squeeze as many seniors into his car (sometimes truck – that was a sight to see!) and off to church he would go, and then he would return his “girlfriends” (as he use to refer to them as) home afterwards. At first, it was one senior, then two, before long it was four, sometimes five, seniors he would bring to mass every week.

This selfless act continued for several years. Suddenly, there were days when there were too many “girlfriends” to fit into his car. At which point he began to ask for help, and others from the parish stepped up to help these seniors.

These two nuggets from Dad’s glory days got me to thinking about what one person can do. What can one person accomplish when they are part of a larger group with a common goal. Obviously Dad did not build the City of Boston by himself, he was one of many. He did start the effort to bring his “girlfriends” to mass every week, and built it up so that there was a small team of drivers.

What can one person do?

Well, one person can do many things. And when it comes to Diabetes, if that one person is me or you, there is so much that we can do, such as educate, advocate, and provide support and friendship. Let’s take a look.

Educate

With me, for the longest time, when it came to my Diabetes, I just wanted to hide in a shell and not give anyone a chance to ask me questions about my Diabetes. I had some distorted belief that if I did not talk about it, somehow no one would ask about it, or ask those questions like, “Why are you going to the bathroom a lot?”, or “How did you catch your Diabetes?”, or “Why do you do that finger stick thing so much?” or “Are you allowed to eat that?” or “Can you do your Diabetes thing (or stuff) somewhere else?” or “My grandma had Diabetes, and she ate cake all the time, why don’t you?” or “Will you die if you eat this candy?” or “My mom knew someone who died once from ‘beetes’, how long do you have to live?” or, well I could keep going but you get the point…and I’m sure you could probably add to this list as well.

But there was a point, maybe about fifteen years ago, when I was at work…I remember this vividly… the main office of the company that I was working for at the time was a converted house, so I was sitting in the kitchen getting something to eat, and it was about two in the afternoon, when the secretary, Helen, came back to ask me a question. Helen said, “Would you mind talking to a gentleman that comes to the office nearly every day about Diabetes, since you have had it a long time and it seems like you know what you are doing?” For a second, all I was focused on was that backhanded compliment. Then I snapped out of it and said, “Sure.” How could I possibly say no the secretary (nowadays referred to as Office Manager), after all she was the one who was the glue that held the company together – all secretaries/office managers are like that, they are the ones that really keep all companies afloat and running smoothly…forget the presidents, CEO’s and managers, it is most definitely the secretaries.

So, I am thinking Helen is going to bring some salesman who calls on the company to sell office products or something like that. No, what I see come around the corner was a man dressed in brown shorts and brown collared work shirt – it was, Jim, the UPS® guy !!! Of course it was, who else comes to the office nearly every day?!

Jim walks in and I invite him to take a seat, which he replies, “Thank you.” I said to him, “So, Helen tells me you have some questions about Diabetes.” Jim seemed a little nervous, and said, “I don’t want to take much of your time, but yes, I have a few.” “Great”, I said, “Fire away, I’ll answer what I can for you.” And it was at that instant, that, at least when it came to Diabetes (I was still tremendously shy for almost every other part of my life), that it seemed as if I had stepped from the shadows and realized that it was ok to talk about my Diabetes.

Since that day, I understand and appreciate that if someone is asking a question about my Diabetes or Heart Disease or Kidney Disease, that it must mean that they are curious for a reason and that I should, to the best of my ability, share them an answer based on my experience.

It’s not that I am obligated to share my experiences now, it’s that I want to. It’s ok to want to keep your Diabetes experiences to yourself, but for me it has been a freeing feeling. To know that I am able to help someone is a great feeling. People ask questions for reasons we may never know – they could feel like they are showing symptoms of Diabetes, Heart Disease, Kidney Disease, Neuropathy, you name it; or they may have a family member with one or more of these disease and want to know what that family member is going through…it is something we may never know.

Nowadays, and nearly every day, you can’t turn on the TV or radio, or open the newspaper or get an email in your inbox, that doesn’t have something with Heart Disease or Cancer. The American Cancer Society and the American Heart Association does a fantastic job of getting in our faces about signs, symptoms, personal stories, etc. In fact, I have called a particular business more than several times and if I am ever put on hold, there is a reminder in the recorded message for women to schedule their annual mammograms…its brilliant, because you are a captive audience. But I dare you to look, let’s say over the next week or so, and notice how often you hear or see commercials or adds for something related to cancer or heart disease – this would include calls for support, like walk-a-thons, runs, etc.

Diabetes, in my estimation, does an ok job educating the general public about the disease and the diseases the spring from it, like heart disease, kidney disease, blindness, nerve damage (particularly in the feet), but it can always do better. And for it to do a better job of educating, we may need to take it upon ourselves to make others aware.

Advocate

I feel that one way Diabetes can be moved more to the forefront is if we all do something to advocate for the disease. I know there is a small segment of the Diabetic population that regularly advocates for Diabetes research and funding.

There may be a general feeling among most of the Diabetic population that says, ‘yes, I am going to do my part, I am going to write letters, I am going do this, or do that…” What happens? Life happens. The kids start screaming, or you need to get dinner ready, or you have to drive Bobby or Susie to soccer practice; or there is a big project at work that is taking up a huge chunk of your time, and you are barely getting any sleep, let alone spending time with your family.

I get all of that. I even include myself in that category of those that say they are going to do something, but never end up getting around to it. We have to do better, myself included. I don’t want to ever have to depend on insulin again, unless it is being made by my own body. Before I went on the pump, I estimated that to that point, I had given myself something in the neighborhood of 20,000 insulin injections over the years – and I know there are others out there that have been living with the disease for much longer that could double, triple or even quadruple my number.

There is something wrong with that…That is not right. We need to stand up and fight for ourselves, and fight for all of the Michael’s, Linda’s, Christine’s Reyna’s, Mary’s, Jim’s, Cora’s, Dina’s, or _________ (insert your name and names of others you know). We need to fight so that we get to see a cure in our lifetime. Just think of the ripple effect a cure for Diabetes would have throughout the world – FEWER people with a risk of heart disease, FEWER people requiring dialysis or kidney transplant (or both), FEWER people losing their eyesight, and FEWER people losing toes or limbs due to severe nerve damage.

Support and Friendship

When I first started this blog, I was talking about my upcoming kidney transplant, there were two people who shared with me their experiences of what they had been through or were going through – Cora from Canada and Dina in Kuwait. I got other words of encouragement along the way as well, but it was Cora and Dina who seemed to help put me at ease a little (as much as possible), and that is something that I appreciate so much more than I have ever been able to tell them.

Several months ago, I was contacted by a wonderful, but scared, woman from Kansas, whose name is Reyna. Reyna has had Diabetes for a short time, but has already had to deal with nasty complications that many of us have gone through (or hope to put off for as long as possible). Reyna was scared, and I got that, I understood…and since that day back in July, we have been working together to help her regain control of her Diabetes, which she is doing a great job of and that I am very proud of her for.

And that, in a nutshell, has what this blog has become, people helping people, whether they are next door, several states away, or half way around the world. As I am sure most of you are aware, you can’t deal with Diabetes/Heart Disease/Kidney Disease/Blindness/Nerve Damage alone – we have to help each other…and when you do you never know what support you can provide and what incredible friendships you can forge!!!

Where Do We Go From Here?

Dad was one part of his family…but he could not make it work without Mom. Dad worked many facets of the construction business…but he was most proud of the end result of a job. He was one man who wore many hats (or construction helmets) over his career, but he could not do it without everyone else who worked those jobs as well. Dad was one part of a building committee and parish council of his church and impromptu transportation coordinator for his “girlfriends”…but he couldn’t have accomplished what he did without other members of the church.

I started out with the basis of what one person can do, and Dad did a lot that a son, a family and a community could be very proud of. And like Dad, we have our own sort of Trinity, and like they use to say on the old TV show (and the more recent movies) ‘Mission Impossible’…”If you choose to accept it !”

What To Do…

· Educate – Talk about your Diabetes, and the fact that you have needed, or could need, a kidney transplant because of it, or have needed bypass heart surgery because of it, or you have lost vision in your eyes because of it, or you have lost feeling in your feet because of it (and subsequently could need or have needed amputation because of it). Let others in on your experience…soon they may turn those dumb questions into smart, well thought out and compassionate questions. You could also let them know about this blog. In fact, I dare you to forward it to everyone in your address books (and all of those contacts to do the same) and they can all follow us on the Facebook page by “Liking” Life On The T List, or following it on blogger.com from this link: http://michaelburketransplant.blogspot.com

· Advocate – Again, this is an area I personally have to work on myself. We can contact our local Diabetes chapters and ask what we can do to help them with their efforts. We can also get on the phone or e-mail and contact our local, state and federal representatives and senators and tell them they need to step up to the plate for funding for Diabetes research for a cure. To get you started, here is a link to the Federal Congress: http://www.congress.org/congressorg/directory/congdir.tt .

· Support And Provide Friendship – This is as simple as it sounds. There is someone out there just like you that is feeling the same things you are feeling, experiencing the same or similar things you are thinking…when they enter your life, help each other out !

By ourselves, we can be quite powerful…but when we play our own version of the old telephone game – you tell one person, they tell someone, they tell someone, and so on and so on, we become an extraordinary powerhouse and we can accomplish extraordinary things !!!

That, my friends, is what one person can do…we are all capable of it !!!

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

September 11, 2011

2011-09-11T09:22:00.001-07:00

Today, America stops to remember and honor the 2, 977 lives that were lost on September 11, 2001 (and on subsequent days due to injuries or illnesses sustained that day), when America was attacked by terrorists.

It has been ten years since that fateful day, but for many it still feels like yesterday. There were husbands, wives, sons, daughters, aunts, uncles who perished. And lest we forget the firemen and police and all of the first responders and rescue and recovery workers who gave selflessly of themselves for the sake of others.

When it comes to the Boston/New York rivalry in sports, I am right there rooting for the Red Sox, Patriots, Celtics and Bruins. But today, there are no rivalries. Today we are one. Today I am not rooting for the Red Sox to come back in the standing and take the American League East from the Yankees. No, today, I am rooting for all Americans…Today, we are one.

I am also rooting for all of the children who never had a chance to see or grow up with their fathers, as they were born after September 11, 2001

I am also rooting for a very special young lady, or at least her spirit. Her name is Christina-Taylor Green. If that name sounds familiar, it should. Christina-Taylor was a victim in the shooting of Arizona Representative, Gabby Giffords earlier this year on January 8th. Christina-Taylor was born on September 11, 2001. In the midst of the country being in turmoil, there was a little bundle of hope coming into our lives. Even at such a young age, it was said that Christina had aspirations of wanting to go into politics. I can only imagine the spirit she would have brought to the political world.

Christina-Taylor may have been a victim of that shooting in Tucson, AZ, but she still lives today because of a courageous and brave decision her parents made. Christina-Taylor’s parents made the decision to have some of her organs donated, saving the life of a young girl in Boston. Christina-Taylor had thoughts of making a difference in the world…in my mind, she did…she allowed another little girl to keep living.

As we remember all of the victims September 11^th, and their families, as well as Christina-Taylor and her family, if you are looking for a way to honor them, do so by donating blood or signing up to be an organ donor…the life you could save could be your son or daughter or mother or father…or it just might be someone you have never met, but will have a lasting bond with. Please consider donation today as a tribute of remembrance.

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

September 6, 2011

2011-09-06T14:34:00.000-07:00

Today, I saw Dr. P. It was my three month post transplant follow-up appointment, one day shy of my actual anniversary.
I don’t want to say that the appointment was monumental, although to me it sort of has that feel. But, no, I will save that word for a greater anniversary date…maybe I will pull it out for the one year anniversary, that may be a little more appropriate. Today, I will stick with the word significant, that seems to fit nicely.

Reaching this point is significant for me for so many reasons. For one, Mom has gotten to see me live through the surgery and recover well from it. She once said to me, when there was a question whether or not Tommy would be able to donate or not, she said, “I know there is a kidney out there for you if Tommy can’t do it, but where will it come from, and more importantly WHEN will you get it?”

I was at such a huge loss for words…All that slipped my lips was, “I don’t know.” That was the first time I had seen any hint of resignation from her, it crushed me. I just had to get up and leave the room.

So, Mom, I dedicate tomorrow, my three month anniversary, to you. You have been a rock in our family for so long, stood by all of us on good days, bad days and really shitty days. Thank you for not giving up or giving in. I feel comfortable speaking for Tommy and Christine when I say thank you for everything.

Mom and Dad on their wedding day, June 1963

So, back to the appointment…Dr. P. comes into the exam room with a huge smile, and says “congratulations on your three month anniversary”. I thanked her and then she threw out that question that I spoke here about earlier this Summer – “So, how are you feeling?”

I could feel a huge smile come across my face as I said, “I feel good”, resisting the urge get up and yell out those same words like James Brown use to. Instead, I just said, “No, that’s not right, I don’t feel good, I feel GREAT!” Dr. P., now beaming, said, “That is so wonderful, I am so happy”.

And before she could say another word, I jumped in and said, “It is so amazing how well I feel today, as compared to three months before the surgery, or even six months before.” I explained to her that, especially in the last two years leading up to the transplant, that felt like crap (I wanted to say like shit, but I was trying to keep it somewhat professional), only I didn’t know I was feeling like crap because everything felt normal at the time. I don’t know who was happier, Dr. P. or me.

I remember hearing from Cora (in Canada), who follows this blog, well before the surgery, and she told me that I really wouldn’t believe the difference that I would feel after the surgery…and she was soooo right. I just never knew how sick I was before because kidney disease is such a slow, plodding disease that you don’t notice that you are really that sick.

Mom, again, thank you. There are a great many people that I have to thank, and one day I hope to personally do so with each and every one of them – for their love and support for me, and Tommy, and for the same to you and Christine. Some say it would be impossible to thank that many, but that is a challenge that I gladly accept.

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

August 30, 2011

2011-08-30T17:35:00.000-07:00

July 2, 1941. To many, that date probably doesn’t have a whole lot of significance. But to me, however, it does.
On July 2^nd in 1941, one of the greatest men to ever walk this planet, in my humble opinion, was born. Thomas Burke was the first child born to Thomas and Margaret Burke. Thomas was proudly raised in Knock, County Mayo, Ireland. Thomas would later become known to me simply as Dad.

Dad came to the United States at the age of 17 with my grandfather, who we affectionately called Poppop. The remainder of the family would follow with Mommom (my grandmother), and Dad’s other two brothers Bernie and John, and two sisters, Helen and Mary. They would all eventually settle in Somers Point, NJ (maybe 20 minutes to a half hour from Atlantic City, depending on who was driving and whether or not you timed the traffic lights correctly).

Dad learned to work and work hard by emulating Poppop. He was introduced into the world masonry before leaving Ireland, and continued with that line of work when he arrived here in the United States. Masonry can be tough, grueling work, but Dad enjoyed it, at least that is what he made us believe. It allowed him to provide for his family, something he was extremely proud of.

Dad was the strong, silent type. He reminded me a lot the character Sheriff Buford Pusser from the 1973 movie Walking Tall. Although, Dad never carried a four foot hickory club. He did however, fight for what was right, and tried to do what was right for his family, church and community at large.

One of Dad’s greatest assets, was the fact that he was a great teacher…although, I will admit, at the time, living his lessons, may not have been the most enjoyable…but looking back, they provide some very fond memories.

One in particular that will stick with me forever has to do with math homework. Dad had a brilliant mind. From his experience being out on the jobsite, and reading plans, he had a knack for figuring many things out in his head. I may be sitting at the dining room table after dinner working on my math homework (and I am the world’s worst when it comes to math), and I would be struggling to find the answer…Dad would come along, look at what I was doing and say something like, “the answer is 42”, or something to that effect. I would then ask how he got that, and we would just say – “it’s right there in front of you.”…”yes, but I need to use this formula”, I would say…and he would come back with, “You don’t need this convoluted formula.”

This would going on, back and forth for a while, until I would just say…”ok, I understand it now”, when, in fact, I really didn’t. Amazingly, when going over the homework the next day in class, Dad always seemed to have the correct answer!

Dad taught me the meaning of hard work, and if I really wanted something, I would need to put the time in to get it. Being a bricklayer (a mason) was in his blood, and it was a way for him to also make some extra money for the family by doing small jobs on the weekends – jobs like fireplaces, chimneys, outdoor brickwork – essentially anything brick or block related that a homeowner or small business owner would want to rebuild a part of their house or business. I learned everything from how to mix mortar, to laboring, to bricklaying, and that at the end of the day I would be paid a fair wage for the amount of work and hours that I put in. There was no easy way to earn money working with Dad, you got what you earned, which was fair.

I also learned something about Dad from the other bricklayers and laborers that he employed on the weekends, and that was, as hard as he made them work, they had a tremendous respect for him. Not only was he a fellow bricklayer or a boss to some, he was a brother (or, in some cases, a father figure) to them. He cared for their families and how they were as human beings. If he knew someone was in a tight spot for money, and he had an opening on a small job on the weekend, he would be the first to jump in and say, “Do you want to earn a few bucks on Saturday?”

He also had a lighter side to him as well…it wasn’t all work on the weekends. There was a time where he got tickets to a Red Sox game, and he took myself, Tommy and one of Tommy’s friends to Fenway Park. These were great seats, on the first base side, just to the home plate side of the Red Sox dugout about eight to ten rows back.

At one point during the game there was a foul ball by Rick Burleson, the Red Sox Shortstop at the time, that was hit off the façade above and behind us. As most people do at baseball games, everyone tries to catch the ball hit into the stands. Like any kid my age then, I was maybe 12, I brought my glove with me, with hopes and dreams (like any kid) of catching a foul ball. So, the ball hits off the façade and I lose it in the sun, but like everyone around me, I stick my hand up to catch it. I was absolutely floored when I looked in my glove and saw the ball resting there in the webbing. As any kid would feel, this made my day, my week, my year, MY LIFE! After the game ended, Dad said, “let’s go!” And we headed towards the dugout…he was trying to get Rick Burleson to sign the ball for me. Unfortunately, he didn’t, but looking back on that day, I love that Dad tried.

I also have great memories of Dad taking me fishing. When I was younger, we would go to the Powder Point Bridge in Duxbury, Massachusetts. I will say that Dad was amazing at building a wall, fireplace or chimney with brick and mortar, but when it came to tying a hook to a fishing line, let alone baiting the hook, Dad needed a little practice. But that would not stop him from taking me to fish, mostly for flounder. I don’t think we actually ever caught anything, but the time we spent together was priceless. There were times when we had the fishing line cast out into the bay and we would just sit there waiting for a hit on the line…both of us silent and looking out towards the water (ok, I was a little small, so I would climb up on the side of the bridge), very few words were spoken, but we had the greatest time. How could I not have a great time, I was with my Dad.

It was this view of life, and the way he lived his life, that would help him become the backbone of our family and help Mom raise two kids with Diabetes and another that has grown up to be just like him in many, many ways.

Unfortunately, I can remember all too well spending time in hospitals for either childhood Asthma or Diabetes. But Dad was always right there – always – even if you were asleep and didn’t know it. He would often stop by the hospital very early in the morning, well before the posted visiting hours, and stay for a little while, and just sit with me, holding my hand while I slept. He would then slip off to work, to some jobsite where he was building the face of Boston one brick at a time, or one block at a time…put in a long day and then return to the hospital, often before going home and just sit in the chair next to the bed. There were times when I would look over at him and he would be asleep in the chair, but I didn’t care because he was there, and that’s what counted for me. And each time before he left, he would lean over and give me a kiss on my forehead and then say something like, “See you tomorrow.”

As I mentioned before, Dad was the backbone of our family. One of the main reasons for his strength, was his faith. Dad had a deep rooted faith in God and there wasn’t much, if anything at all, that was ever going to shake that tree. In fact, he once took Linda to Lourdes, France and to the Basilica in Knock, Ireland (he also took me here), looking for a miracle to cure his little girl. And although they returned home with no miracles to speak of, I’m not entirely sure that was really the case.

You see, to me, Dad was really the miracle for us. He wanted the best for us – the best medical care, the best schools, the best that he could provide literally working his fingers to the bone. He was the one who built our strength.

Dad told me that it was going to be a hard road with Diabetes, but he also made me believe it was going to be a long road, and he meant that in a good sense. Meaning, he wouldn’t allow me to give up fighting, despite what we saw the disease do to Linda. When Dad spoke, you did nothing but listen. It wasn’t that he commanded that respect, but he instead earned it from you, and you gladly gave it. So when he told me this I listened very intently.

On September 11, 2005, Dad was the one in the hospital this time, arriving there several days before with an infection. It was later in the evening. Tommy had just left to take Mom home after visiting, and Christine had stepped out of the room. The lights were turned down low. Dad was failing, his organs were shutting down. This time, it was me who was holding his hand, telling him it was going to be ok. But I also added, “it’s ok to let go now.” And I think I made some crack about Red Sox losing to the Yankees that day, but also said it didn’t matter because he had seen the Red Sox win the World Series the year before. I then said to him that Tommy and I would look after Mom as best we could, and again said that it was ok for him to go.

About a minute later, with tears streaming down my face, much as they are right now, a nurse entered the room and shut off the monitors and said that all of his organs had shut down and a doctor would be in soon to confirm. With that, I leaned over and kissed Dad on the forehead, and said “Thank You.” I was thanking him for the life that he gave to Mom, Tommy, Linda and I; as well as to Mommom and Poppop, Aunt Mary, Uncle Bernie, Aunt Helen and Uncle John, and to his many uncles, aunts, cousins, nieces, nephews, fellow bricklayers and parishioners he would see at the 10:00 o’clock mass every Sunday morning at Holy Family church.

Dad was only around briefly when my kidneys began to fail. He knew that someday I may need a transplant, but at that time, none of us knew when that might be. It may sound a little strange to hear, but when I entered the operating room this past June, with Tommy already in surgery, there was a certain peace that I felt. Some might say that it was the pre-surgical drugs kicking in, which it very well could have been…but, in a sense, to me anyway, it was Dad (as well as Linda) being there with me like he been so many times before.

Dad, thank you…thank you for the miracle that you were. I love and miss you.

Dad enjoying himself at Mine and Christine's wedding.

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

August 17, 2011

2011-08-17T10:46:00.000-07:00

As most of you can tell by now, Linda was pretty special in my life. Linda was probably my first real hero…ok, so Jim Rice from the Boston Red Sox was maybe my original hero when I was ten…but when I knew better, it was Linda. She put up with a lot, not only from Tommy and I (playing the role of annoying little brothers), but in her struggles with Diabetes and how she pushed through those struggles to realize her dream of becoming a nurse.

Linda after receiving her Nursing Degree from Simmons College

But several years before she graduated nursing school, she used her keen intuition and her many years of experience with Diabetes, and saw something in me that I was not going to like, nor would she want me to experience.

To this day, I still don’t really know how, but something told Linda, or was nagging at her, that she should start testing my blood sugar. At first, I just thought it was novel…she was in her first year of nursing school, and she was going to be using me as some college mad-scientist experiment. Then, it started to hurt, all of those damn finger pricks. After a few days, I wanted it to stop, but Linda would have none of it. This constant testing would go on for two weeks, leading up to, and through, Christmas. Linda, of course, had a suspicion that I was either developing Diabetes, or already had it.

On the morning of December 28, 1983, I went to work. I had a job at Sweetser’s General Store – at the time, it was the oldest operating general store/retail store/food store in the country. It was actually a pretty cool place – I worked in all of the departments, produce, bakery, grocery, and the liquor department…you name it – except for the meat department, they were very particular about who used the meat slicer…it is for that reason that today I still have all ten fingers! One time, I was up in the old storage attic, which in the old days was used to store bails of hay that were sold and hoisted down onto waiting carriages below. And while I was poking around up there, I came across several boxes of receipts, and I was amazed that most of them were dated in the late 1600’s/early 1700’s.

So, on this particular morning, when I went to work, Mom was going to be calling Dr. Gaynor, our pediatrician. She did so, and by 9:30 she was at the store looking to take me down to see Dr. Gaynor.

I sort of had it in my head that this was going to be the case. In fact, I remember not wanting to talk to anyone or be around anyone, so I volunteered to go to the upstairs stock room and put away the weekly Coca Cola® order that had come in.

I was in my own little world, secretly hoping that I wouldn’t have to go see Dr. Gaynor. Then reality struck…as I was taking cases of club soda and ginger ale off the conveyor belt and stocking them neatly, I heard Charlie, the store manager, yell up to me saying that Mom was here. As I poked my head around the corner to look down the stairs, there was Mom standing with Charlie, and Mom telling me that we had to go see Dr. Gaynor. I said that I would be right down, and I stepped away from their view.

I went back to the area of the conveyor belt where I was working and just stood there for what felt like an eternity, but in reality was only about 30 seconds. I needed to let my frustrations out, but I did not know how. Without realizing it, I had put my hands in the handle cut outs on a case of club soda. When I knew that I had gripped it, I didn’t want to let it go. But just then I took a deep breath, and in one motion, picked up the case, turned and threw it as hard as I could against the back wall, which was about ten feet away. The case tore apart as it hit the wall, sending one liter bottles in all direction, cracking at least one cap so that now I could hear a “SSSSsssssssss” sound as club soda was being sprayed all around. I then removed my apron and went down stairs and Mom and I went to see Dr. Gaynor.

Sitting in Dr. Gaynor’s office about a half hour later, Dr. Gaynor looked at me and said, “Based on what I see what Linda has been doing with you, I would venture to guess that after we do some blood work, it will confirm that you have Diabetes.” These are not the words a sixteen year old wants to hear, let alone, anyone of any age.

Trying to reassure me that everything would be ok, Dr. Gaynor then told me, “With all of the advances in Diabetes being talked about, it would not surprise me if there was a cure for this in five to ten years.” He truly believed that, because what was being talked about a lot back then was the possibility of islet cell (insulin producing cells in the pancreas) transplants. However, now almost 28 years later, the advances in islet cell transplants as a means for a cure, have been few and far between. As of today, there still is no cure for Diabetes to speak of.

Dr. Gaynor then sent me to Jordan Hospital to be admitted, and he said he would be there in a little while to check on me. After being admitted, I was sent up to a room in Pediatrics, one of the various rooms I had been in over the years because of my asthma when I needed treatments.

One of the first things one of the nurses did, was check my blood sugar…it was 810!!!

And so began my journey with Diabetes. After getting my sugars under control by the next day, one of the nurses came in and said that she was going to teach me how to give myself an insulin injection – she had with her a syringe, a bottle of insulin and an orange…yes, an orange. She was actually very good in her explanation. She explained about the syringe (why one is a 1 cc and others are ½ cc), then she moved on to the insulin. I first started out on pork-based insulin, so she explained to me the differences between pork and beef insulin. Then we practiced drawing out varying amounts of insulin, making sure not to have any bubbles in the syringe, and if there were, how to get rid of them.

Once the nurse felt I had a good handle on drawing up the insulin, it was time to give it to myself and out came the big naval orange. She had me inserting the syringe into the orange about 20 to 25 times. Apparently the orange was suppose to simulate my skin and how I would inject into myself, though I don’t ever remember my skin feeling like the outside of an orange! I was still very bummed out by the whole thing, but my solace came later that evening when the hometown Boston College Eagles, and miracle quarterback Doug Flutie, took on the Fighting Irish of Notre Dame in the Liberty Bowl. Unfortunately, BC lost 19-18, but that wasn’t the worst part of it. The worst part of it, was that I had to watch the game on a tv the hospital provided – so, not only was it not a very clear picture, it was only a six inch screen!!!

In the years that followed, leading up to 1989, there were a lot of ups and downs, but through it all, Linda was right there with me…I learned so much from her. Linda was the first to save my life, and now, by providing the gift of one of his kidneys, Tommy, has again saved my life. One could not have asked for a better brother or a better sister. Tomorrow, August 18^th, would have been Linda’s 47^th birthday…wherever you may be Linda, Happy Birthday!!! I Love You!!!

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email

August 14, 2011

2011-08-14T12:22:00.000-07:00

To this point, my focus has primarily been on my kidney disease, the resulting transplant, and now life after the transplant. I have alluded to the fact that my kidney disease was brought on by Diabetes, but I have not yet explored those days back in 1983 when my life changed forever.

But actually before I go back to 1983, I really need to start back even further, around 1970, when I was three…this is really when I began living with Diabetes. How is that possible, you ask? That is when, at the age of six, my sister, Linda, was diagnosed with Type 1 Diabetes. Linda may have been the one who physically had the disease, but Mom and Dad, Tommy and I all lived with it and coped with it as a family. Even our extended family was, and still is, very supportive. I can’t think of a better family – aunts, uncles, cousins, grandparents, etc. – to be a part of. It was a learning experience for all of us, and we did it together.

Six years old. I can’t imagine being that young, or even younger, and having to deal with this disease. I thought it was hard enough being diagnosed at 16. But, I guess, in some ways, Linda was able to deal with it a little easier because it was now going to be her way of life, our families way of life, and when you are that young you don’t know any better than what your mother or father are telling you or raising you. It also helped Linda to have friends who did not judge her, including Jodi, who would become Linda’s best friend for life, and like a sister to Tommy and I, as well as a second daughter to Mom and Dad.

Linda and I gave Mom and Dad a lot to deal with when we were younger. With Linda being diagnosed at six, and, for about the two years prior to that, me developing childhood Asthma (which included many trips to the hospital because I couldn’t breathe – that was a lot of fun…not). Mom use to say that we definitely made life very exciting.

So, now at six years old, Linda began experiencing life with two, three, sometimes four shots every single day, and having to learn to recognize high and low blood sugars, and how to treat those moments when they happen. She would have to test her sugars not on nice little hand monitors that we have today, but with test strips she would have to dip into urine and then try to determine what her sugar was based on the color the test strip turned – figuring out the color of the test strips was no easy feat either when the color could have easily been one of two to choose from (though she would get to use a monitor later on, but they were huge compared to today’s models).

Though, through her years living with Diabetes, when she was young and as she got older, I never heard her complain much about it, even as it was taking a toll on her body. Linda endured the pain of neuropathy, retinopathy, and nephropathy, all nasty, nasty side effects of Diabetes. I remember Linda crying in pain because her feet hurt so much because of neuropathy, or screaming in Dr. Ryan’s office as he gave her laser eye surgery. Dr. Ryan was a savior to Linda, however, as he saved her eyesight, saved it. Linda was going blind from the effects Diabetes was doing to her eyes with blood vessels in her retinas hemorrhaging like you wouldn’t believe, and Dr. Edward Ryan, God bless him, saved Linda’s eyesight, and later has done the same for me. As with the nephropathy, the wonderful form of kidney disease brought on by Diabetes (yes, I am being sarcastic), it did get to the point that Linda did need a kidney transplant. However, at that time Linda was referred to the transplant center at the University of Pittsburgh, where they wanted to do a kidney/pancreas transplant. The kidney/pancreas transplant, now much more common, was still in its experimental stages back then.

Dad use to lovingly call Linda a “determined little piss ant”, but she was still his little girl and nothing was ever going to change that (as a tear wells up in my eye as I write that). It was Linda’s determination that made her who she was. Ever since Linda was a little girl, she always wanted to be a nurse. It could very well have been because she was in and out of hospitals and clinics like the Joslin Diabetes Center in Boston, but honestly, I don’t really know why Linda always wanted to be a nurse – foolishly, I never asked her. But she was determined, none the least, and there was no way in hell anything was going to stand in her way if she could help it, not even Diabetes.

I remember when Linda was going through school, she was a nursing student at Simmons College in Boston, and it was during her senior year, and she was having a lot of trouble with her eyes. When her eyes were not as bad, Linda had made up flash cards, like many students do, to help her study. But as her eyes got a little worse, it was difficult for her to use the flash cards. That’s when she recruited Tommy and I to help her study. Tommy and I would take turns going through the flash cards with Linda so that she would not have to strain her eyes…I swear, to this day, Tommy and I should be nurses as well with everything we helped Linda study for. And to boot, I can’t not stop and think about Linda and all of the studying we did, whenever I hear the song Always Something There To Remind Me by the 80’s band Naked Eyes, which Linda loved to listen to when we studied, that and anything Motown! Although, if I were to choose a song today that embodied how Linda lived, it just might be The Edge of Glory by Lady Gaga.

Linda successfully graduated from Simmons, passed her nursing boards and was hired as a staff nurse at Children’s Hospital in Boston. However, on March 14, 1989, while on the first day of vacation in West Palm Beach, Florida with another nurse from Children’s, Linda passed away. Officially, it was said that her heart stopped. Although, I know that Linda’s heart has never stopped beating in me or Tommy, or Mom, or Dad before he, himself, passed away in 2005, or in anyone else in our family. Linda died at the hands of the insidious disease known as Diabetes.

Flash back now from 1989 to December 28, 1983……

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

August 10, 2011

2011-08-10T18:16:00.000-07:00

As I have come to find out over the last several years, your kidneys, play a huge role in how the rest of your body functions, not just as it relates to Diabetes and Kidney Disease, but in everyday life of every person. Everybody knows that the heart pumps oxygenated blood though out your body constantly throughout the day…in a sense, it is your main engine that makes you go.

I say your main engine, because the body also has smaller, but no less important, engines that help the body go. And one of the critical smaller engines is the function of your kidneys. The kidneys are essential in the urinary system and also serve functions such as the regulation of electrolytes, maintenance of acid-base balance, and regulation of blood pressure (by maintaining salt and water balance). They also serve the body as a natural filter of the blood, and remove the junk that build up in our blood and are diverted to the bladder to be expelled from the body. In producing urine, the kidneys excrete this junk, such as urea and ammonium; the kidneys also are responsible for the reabsorping water, glucose, and amino acids; and they produce hormones like calcitriol, erythropoietin, and the enzyme renin.

So it is a big deal when this engine begins to shut down. Think of the engine in your own car…we change the oil and replace the oil filter on a regular basis, every 3000 to 5000 miles. Ok, so we are suppose to do that every 3000 miles or so, but there are few of us who do that. Come on, admit it, unless you have a reminder from the OnStar® system in your car, or a little sticker in the top corner of your windshield from either the dealer where you bought your car from, or from the last time you went to Jiffy Lube®, you can’t remember the last time you had the oil changed in your car.

As I have gotten older, those reminders are more and more helpful. But that is not to say that when I was in my 20’s (you know that time – the time of your life when no one can tell you anything because you feel like you already know everything!, or so you would like to think) it wasn’t unusual for me to look at one of those stickers and see that I have about 1000 miles to go before I need to have the oil changed and then forget about it altogether until I see the red “CHECK ENGINE” light come on, on the dashboard.

“Oh, Crap!”, or something like that would come from my mouth, as I now realized that I was now about 4000 miles over from when I needed to have the oil changed.

This didn’t just happen once or twice…no, no, this happened multiple times. To the point that when I was out on a date we were driving along to whatever restaurant we were going to, and all of a sudden the car sputters…and then sputters again. I look to see if I have enough gas – yep, plenty of gas. The car jerks again, and now I start to see a little bit of smoke coming from under the hood of the car…and then one last jerk and the car sputters to a slow painful stop – I had seized the engine!!!

The same thing happens when our kidneys are not working properly…they begin to slow down filtering all of the junk that needs to be eliminated from our bodies, and eventually they seize up…also known as End Stage Renal Disease.

One of the cogs in the kidney engine is the function of the Parathyroid Glands. There are four of them and they all perform the same function - regulating calcium levels in our bodies. When one of your parathyroid glands go bad and makes too much hormone, the excess hormone goes to the bones and takes calcium out of the bones and puts it in your blood. It's the high calcium in the blood that makes you feel bad.

This according to Wikipedia, the Parathyroid hormone (PTH) is a small protein that takes part in the control of calcium and phosphate homeostasis, as well as bone physiology. Parathyroid hormone has effects antagonistic to those of calcitonin. PTH increases blood calcium levels by stimulating osteoclasts to break down bone and release calcium. PTH also increases gastrointestinal calcium absorption by activating vitamin D, and promotes calcium conservation (reabsorption) by the kidneys. PTH affects the perception of well being and absence of PTH can be associated with feeling of fatigue and anxiety.

Hence, feeling tired and feeling like crap when you have kidney disease. However, generally, I am told, that when the kidneys are working normally, the PTH also runs pretty normal. When I was at the doctor last week, Dr. P. went over some test results from the previous week. One was the PTH and the other was a Bone Density test.

With the PTH, she told me that my blood test came back as 138, and normal range is 20 – 50. She could see the shock that probably came across my face. She told me not to worry because this was all due in part to the kidney disease and as the new kidney continues working well over the next year or so, she expect that number to drop significantly. She told me that she has had patients with a PTH of 900 or 1000, or even higher, and said that those patients typically will have much more difficult time getting into the normal range.

According to the Beth Israel Deaconess Hospital Transplant Patient Handbook, Phosphorus is also a mineral found in your bones that is involved in this whole mix. Think of phosphorus as another cog in the kidney engine. In conjunction with calcium, phosphorus helps to keep your bones strong. When kidneys fail, the kidneys lose the ability to get rid of phosphorus and the blood levels of phosphorus can get too high. This will then pull calcium out of your bones and make your bones weak, increasing the risk of bone disease and fractures. When my phosphorus level skyrocketed, I was put on a phosphate binder to help my body eliminate the extra phosphorus. I have to tell you, I have never seen such a huge pill – it was enormous! I actually asked to be switched to the pediatric version, which was a powder that you added to water, because I had gagged big time on the original pill – it was literally big enough to choke a horse, as the saying goes.

The handbook goes onto say, that if levels of calcium and phosphorus get too high in the blood, you can get calcium deposits in your blood vessels or heart that cause ‘hardening’ and can restrict blood flow.

Post transplant, the blood phosphorus levels can go very low because the new kidney is doing its job and getting rid of all of the excess phosphorus.

As for the bone density test…well, I originally had a bone density test done back in 2002, but for the life of me I cannot remember the reason why. Despite my apparent memory loss, it turns out that it was good that I did have that initial test because there was now something Dr. P. could compare to. So, in explaining it to me, she said that my original test showed that I was on the high side of the normal range, and this test showed that I am now on the low end of normal. Much of this could be attributed to the kidney disease advancing over the years.

This is from Dr. P.’s doctor’s notes:

“Although Michael’s bone mass is within the expected range for age, it has decreased significantly (by 5.1% in total PA spine between 5/20/2002 and 7/21/2011 and by 25.5% in the total left hip between 5/20/2002 and 7/21/2011). His calcium and Phosphorus (levels) are normal currently. PTH is 138 and Vitamin D is low at 20.”

Dr. P. said that it is quite possible that, as mentioned, the PTH could return to normal which means that, with a normally functioning kidney, the Parathyroid Gland will pull less and less calcium from the bones…and if that happens we will hopefully see an improvement in the next bone density test.

I would suggest that any Diabetic, or certainly anyone at risk of kidney disease, have a baseline bone density test done. I would also make sure that your doctor, either your Nephrologist, Endocrinologist, or at the very least, your Primary Care Physician, is checking your Vitamin D levels, your PTH levels, your phosphorus levels, and your calcium levels.

I have seen several different statistics, but in general Diabetics account for about 40% of all kidney disease patients. With that being said, being a Diabetic myself, I would urge any an all Diabetics to keep a check on all of their engines in your bodies...you want to get as many miles out of the engines you have before your engine starts sputtering or seizing, and you have to trade in your engine for a newer model.

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.donatelifenewengland.org, www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org, or, by all means, speak to your own physician, or feel free to send me an email.

August 3, 2011

2011-08-03T14:06:00.000-07:00

As I was in sort of a reflective mood after I wrote the last posting, something caught my eye as I got up from my desk. It was a medal Tommy received after he finished this year’s Boston Marathon back in April (see picture below).

Tommy's 2011 Boston Marathon Medal

Tommy gave it to me after he came home from the marathon. It meant a lot to me that he had given it to me for several reasons…one, he had just finished the marathon, in which he was dedicated to raising money for Joslin Diabetes Center in Boston, an organization that had helped Linda with her Diabetes, and continues to help me with mine. Another reason, is that it is a constant reminder to me that he was willing to give up a part of himself in order for me to live – not that the six inch scar on my left side with a slightly bulging protrusion just to the right of that scar isn’t a constant enough reminder!

Later that day, I got a message from a very good friend, whom I have come to know through this blog. In her message, she asked me how I was doing? And I responded with the obligatory, “I feel really good.” Although, as I found out, she was not just asking me as if we had just passed each other on the street. There was something in the tone of her words that made me think that she wanted a real answer, and not for me to sugarcoat anything.

She asked again, this time in a more concerned tone, “How are you feeling?” Part of me wanted to give her my wise-ass answer: “With my hands”, but something told me I probably shouldn’t. So, I laid it all out, and in the end, it was sort of cathartic. Over the course of the last two months, there were times where I would think to myself, “Oh, this is different from before the transplant. But never, although, as I said, it has only been two months, had I gone point by point comparing how I felt prior to the transplant to how I feel today.

The “How are you feeling?” question was a question that Dr. Hoenig would continually ask me when I went to see her, even more so as we go close to the transplant. And my answer to her to her was always that I felt fine. At no point during the last several years when kidney disease was kicking my butt, did I ever feel that it was doing so – I never really felt “sick”. In my mind, I actually felt so good, that it was extremely hard to believe that I was in need of a life saving transplant. But that is the thing with kidney disease, most often it is such a slow moving progressive disease, you barely notice the physical outward symptoms, those that don’t necessarily show up in your blood work.

So, here, I felt, would be a good place to also share those kidney disease pre-transplant symptoms to life in the post-transplant world. Some of you reading this that has kidney disease (or know someone that does) may be able to relate to some of these pre-transplant symptoms, and some of you may have other pre-transplant symptoms that I did not experience. I don’t know if my symptoms are due in part to my Diabetes or are just common among all kidney disease patients. As a reminder, I never experienced dialysis (and from what I am told, that is a very good thing), so, again, some of you may have had other pre-transplant symptoms.

So, here goes, in no particular order…

The Feeling Of Always Being Cold – One of the things that failing kidneys do to a body, is that it messes with its temperature regulation. It can be a serious pain in the ass. Over the last several years, as my kidney function was declining, I saw my tolerance of cold decreasing as well. On really warm days, when the air conditioner was blasting where I was working, I would secretly go to the control box and adjust the temperature so that I wouldn’t be as cold. Conversely, on days when Winter was just hanging on by a thread, as it would fight with Spring to see who would win out that day, days that were probably in the 50’s (after enduring a Winter in the 20’s or below), I would constantly be turning the heat up. By the afternoon, I would be comfortable, yet everyone else could be heard saying things like, “Who the hell keeps turning up the damn heat?”

My ability to feel heat got so bad before the transplant that there was a day about a week before hand when it was 90 degrees outside and I was walking around with a heavy Champion® sweatshirt on, and I was still feeling cold. Flash forward to now…Recently, especially in July, we have been experiencing some extreme heat and humidity, some days even reaching into the low 100’s. As most people were complaining about the heat, I actually couldn’t have been happier – because I could FEEL it. And it was the best feeling in the world to be able to turn the a/c up in the car and really feel comfortable!

Dry Skin – One of the other unseemly things your kidneys do when they begin to decline in function, is dry out your skin (as well as, at times make it itchy). I say unseemly, because there is nothing worse than seeing a fair skinned (I am of Irish decent – I never tan, I just turn red or purple as the first rays come across the horizon and then two day later it’s like I never spent a minute in the sun - ever) man in his 40’s. Over the years, I have tried numerous moisturizing creams, and nothing ever seemed to help. I would always get embarrassed, especially when I would just go for blood work and the technician, as she is putting the tourniquet on my arm, and say something like, “my, you have very dry, skin, don’t you?” In my head, I would answer her with something like: “No shit!”. This would all be fine, and probably a little normal if it was the Winter, because many people have dry skin in the Winter…but, no, this could happen, whether it was December, May or September.

Right after the surgery, I noticed that my abdomen was extremely dry. It was almost as if I needed some sandpaper to smooth out my skin (and, no, I didn’t use sandpaper on my skin). New skin is said to regenerate every thirty days or so. But my skin was so dry, I was slothing the area constantly…it was like my skin was regenerating every single day.

Now that I am two months out from the surgery, that area (my abdomen) is still dry, but not nearly as much, and the itching has nearly disappeared. I was actually told (I can’t remember by whom, though) that the Bactrim (the antibiotic that I was put on after the surgery) may actually have the side effect in some people that makes your skin dry – if I was ever able to hit the lottery as often as I notice a side effect from a medication, I would be a very rich man! But the best part of all, I am noticing other parts of my body that were dry before, that are now much more smooth and holding onto moisture. It’s a nice feeling to take off a shirt and not have flakes of skin falling to the floor. Those of you with kidney disease know exactly what I am talking about, as much as you don’t want to admit that you have noticed a mini snow storm of skin coming from your body, you know what I am talking about…your secret is safe here – I feel your pain!

Being Tired…All The Time – This was the first symptom that I can remember “feeling”. Gradually, over the last five years, I would get the feeling of being tired more often. This was much more than the “mid-afternoon crash” that most of us feel. For me, this came in the form of being in a meeting or training at work, and the dreaded “head-bob” would happen. You know exactly what I am talking about…you are sitting in that meeting, and without warning, your eyes begin to close slowly…and then it happens - somewhere between consciousness and unconsciousness lies semi-consciousness, just lurking to take over your body.

You know it is there. In fact, you try to fight it…you do. In those few seconds, you fight as hard as you possibly can to hold your eyes open. But we all know, as hard we try, all of our efforts are futile…and our necks become something resembling Jell-O® for a second, and your head crashes forward, only to snap back just as quickly the next second. Oh, I know you know what I am talking about…and it just doesn’t happen once, well maybe at first it does, but as your kidney disease advances this scenario can (and does) happen multiple times.

It wasn’t until I was well into dealing with kidney disease that I knew this feeling of being tired all of the time was a symptom of declining kidney function. But it makes perfect sense…since declining function saps your energy…there are many days that you are wanting to stay up and watch a Red Sox/Yankees game, but you can barely make it through the first two innings before you either fall asleep on the couch or have to crawl into bed!

Two months into my new life, I now know what others meant when they said that I would be amazed to realize that I never knew how sick I really was before the transplant. It is like night and day…like flipping the proverbial switch. Immediately following the surgery I was very alert, I didn’t really feel like I had been through surgery. Now, when the alarm goes off in the morning, I get up immediately (ok, maybe I hit the snooze button once), and once I am up I stay up and feel refreshed – I can’t remember the last time I felt that way. In fact, I don’t even yawn nearly as much as I use to.

Peeing – I was fortunate before my transplant, in that I was still able to produce urine. It wasn’t much, but my kidneys were squeezing out whatever pee they could muster up. As there are other patients who actually stop producing urine, I would find that a little odd and probably hard to get use to. But since my kidneys were still producing some urine, they were also leaking (or spilling) protein. There is actually a very easy way to see or notice if you are leaking/spilling protein into your urine – your urine begins to bubble up or foam in the toilet as you go. The more protein that is in your urine, the foamier your pee will be. How foamy was my pee? I’m glad you asked…just prior to my transplant it would actually look like I was running a bubble bath in the toilet, that’s how foamy it was. Today, I see very little evidence of protein in my urine. In fact, when I pee, it looks like a calm, back woods stream, just as normal urination should look.

Appetite – If you were to ask my good friend, Paul, about my appetite, I am willing to bet that he would tell you that, historically, he has never seen anyone be able to put away as much food as I have been able to over the years. However, over the last couple of years, especially the last six to eight months before the transplant, my appetite dropped like a rock. Funny thing, though, over the years, no matter how much I ate (or didn’t eat), my weight never really fluctuated much between 140 and 150 pounds. At the time of the surgery, my weight was 140 pounds.

Immediately after the surgery, my appetite shot up like a rocket. I was sooo hungry. I could not wait for the surgeon to take me off the clear liquid diet during the first 24 hours or so following the transplant. Once I was able to have solid food, watch out. Believe it or not, I was even finding the hospital food appetizing – hospital food! And my appetite has not let up in the last two months. I eat healthy due to my Diabetes/Heart Disease/Kidney Disease, but my appetite is also VERY healthy!

Now these were the most prominent symptoms that I had or observed prior to my transplant. There are others, such as some swelling (especially in my ankles and feet) and balance issues that seemed to improve after the transplant. Now, I have no idea if my balance improved due to my new kidney, I doubt it but it is an odd coincidence.

As I glance over at the medal once again, if that friend were to ask me right now how I was feeling, I think my answer to her may just be: “I feel…lucky! Lucky to be alive and lucky to have an opportunity to experience many things that I may not have had the opportunity to do so if I had not received such a great gift!

July 28, 2011

2011-07-28T10:18:00.000-07:00

From about the age of two to the age of thirteen, just about every kid enjoys his or her birthday – the parties with all of your friends and family; the cakes (sometimes you may even be lucky enough to have an ice cream cake from Carvel or Dairy Queen); and most importantly (at least to a kid) was being able to tear through all of the presents! Many times, especially when you were younger, you really didn’t care or know what you were opening, unless, of course, it was Lego’s®, a Tonka® truck, a Barbie® doll, or an Easy Bake Oven®, all you wanted to do was rip open anything and everything that had wrapping paper on it, and you were sooo bummed when there was nothing else to open.

After you hit thirteen, suddenly you were too cool to celebrate your birthday because now you are “grown up”. Until, of course, you hit sixteen, when most girls like to have a sweet sixteen party. Guys really don’t care much for sixteen, except for the fact that this is when they become eligible to get a learners permit in order to drive a car (although they still have to have a chaperone in the car diving with them until they get their drivers license). The next biggie, maybe not in terms of a party, but the feeling of really being “grown up” is eighteen. Then the mother of all birthday parties comes at twenty-one. For most, after we hit twenty-one, at least from my perspective, birthday celebrations go downhill (unless your name happens to be Kardashian). Well, at least I didn’t really want to pay attention to them much – unless someone is going to give me a big-ass Tonka® truck, and I don’t see that happening anytime soon.

Birthdays come and go, and as we get older many of us don’t want them to come at all, we just want them to go away. Perhaps, my thinking on birthdays was skewed a little when I was sixteen, which was the year that I was diagnosed with Diabetes. And not that I was huge eater of sweets, I did like to indulge in a little birthday cake from time to time…ok, maybe not the cake so much as the icing!

But now it is the mid 1980’s and there is very little in terms of sugar free options for Diabetics. There may have been one or two others, but I distinctly remember Sweet & Low® put out an ice cream. When you had grown up on real ice cream, the Sweet & Low version was quite a shock to your system. It wasn’t much later on that other companies such as Hood® and Edy’s® put out sugar free or no sugar added ice creams, that, honestly, taste very good. Dunkin Hines®, for a short time, came out with a sugar free/no sugar added cake mix that has since gone away.

Why am I going on and on about birthdays, you are probably asking? Well, if you remember from my last entry, I made a brief comment that the procedure that I was going through that day was a day before my birthday. As I re-read that entry, it got me to thinking about how life was at last year’s birthday, as compared to how it is like this year.

At last year’s birthday, I had just been put on the kidney transplant waiting list about three or four months earlier. Tommy had been determined to be a five out of six antigen match to me, but he was still at the beginning stages of going through the testing process, so essentially he could have been ruled out at any point. So, this birthday was a little nerve-wracking, to say the least. What was going through my head was (and as I have heard from others who have waited for a transplant, these feelings are somewhat normal), is this going to be my last birthday? How many more birthdays do I have left. I was an emotional wreck, but I tried not to let Christine or Mom or Tommy, or anyone else for that matter, see me like that – this was a special trait I picked up from Dad, he was the master at not letting anyone know how he was feeling most of the time (except for the time when I was about fourteen or so and he taught me how to change a tire, let’s just say that I saw a whole wide range of emotions that day!).

This year was completely different. The transplant occurred about six weeks or so before my birthday, so the feelings are still quite raw. I remember after the surgery, even before Tommy made his way down to my room, I was constantly asking the nurses two questions…one, how he was feeling (and they kept telling me that he was in quite a bit of pain), and two, what was the total count up to on how many nurses he had hit on!

Then, finally, Tommy was able to make it down to my room…it was only for about two minutes because of the pain he was in. But after he left I could feel my eyes well up and I started balling and sobbing. Yes, I was happy to be alive and have a chance at living life (a quality life at that), but my little brother was hurting and it was because of me (even as I write this, I have a tear welling up in my eye). I was so grateful, but the last thing I wanted to see was him in any pain, even though we were told beforehand that he may have a little bit more of a difficult recovery initially. Back in April, when I got the call regarding a deceased donor, part of me happy because I knew if this worked, then Tommy would be spared having to go through the surgery and enduring any pain.

For comparisons sake, comparing the two years is like comparing Tab® and Diet Coke®. For those of you who don’t quite remember Tab®, Tab® was Coca Cola’s® first attempt in the diet cola market. Let’s just say, they got much better when they came out with Diet Coke®.

But now that it is a little more than seven weeks since the surgery, Tommy and I are both recovering well. And this birthday means so much more to me…no longer do I see a light at the end of the tunnel, I have actually emerged from the tunnel and there is nothing but bright, blue skies in front of me. In the words of the 70's rock group, Rare Earth, "I just want to celebrate another day of living!"

Now, if only I had a sugar free birthday cake and a Tonka® truck (you’re never too old for a Tonka® truck)!

July 23, 2011

2011-07-23T13:29:00.000-07:00

This is a posting where I risk being a little too graphic, which is not my intention, but nonetheless it is part of the transplant recovery process story that should be told and so I will be as sensitive as I can be because it is a sensitive topic. It is the day when the stent is removed.

For those that have already gone through this, you know of the anxiety that you may have put yourself through leading up to this day. And to those that will someday experience it, you to, man or woman, may anguish about prior to your appointment – you may not, but then again, you just may – much like I did!

As I mentioned in a previous post, when the surgery was transplant was explained to me in full detail prior to the surgery, I was told of this temporary stent that would be put in place during the surgery. The function of the stent is to hold the ureter in place after it is attached to the bladder – doing so would allow those sutures to heal.

At first, I did not think much of it when I was first told of it, as the transplant coordinator sort of glossed over the removal process, just simply stating “it’s an easy procedure.” Then my mind began racing, and suddenly I could not focus on anything else the transplant coordinator was telling me because my heart started pounding as I could see the “red flag” go up as I suddenly began to realize something.

I stopped her from what she was telling me at the moment, and just said, “could we back up for just a moment?” She obliged, and I began with a deep breath and said, “About the stent removal…how exactly is that done?”

With a smile, she said, “It is a very simple procedure where the urologist will insert a camera with a probe through the urethra and into the bladder that will grab the stent and it will be removed through the urethra.”

Heart is pounding even harder at this point, I am suddenly dreading the stent removal procedure more so than the transplant itself…

Now I know my body well enough to know that the urethra runs through the penis and into the bladder (and with women, it is in the vagina and goes into the bladder – the only difference being…with women it is a shorter route…and I can imagine a shorter route does not necessarily translate into less anxiety). And speaking solely from a guy’s perspective, this is an extremely sensitive area that we try to protect as diligently as we can from pre-puberty right though old age. This is why the “cup” was invented – we do anything and everything to protect our penises and groin region…call it instinctual…call it survival of the fittest. At the risk of over blowing this (which I probably have, so I will continue), it is inherent in every man to protect and defend his penis from unwanted and unwelcomed intruders at all costs…as Lady Gaga says in her song – “we were born this way!”

Fast forward to this past Thursday, July 21^st …The 21^st just so happens to be the day before my birthday, and this was the day my stent removal procedure was to be preformed. Early or not, I could think of a thousand better ideas for a birthday present.

I arrive in the Urology Department of the hospital, and the usual happens – vital signs are taken and then I am asked have a seat while they “prepare” the room the procedure will be done in. By the way, my blood pressure was a little elevated that morning – I WONDER WHY?!

As I enter the procedure room, the nurse instructs me to remove everything below the waist and put a johnny on. I did as I was told, and then she had me lie back on the table, at which point she lifted my johnny and placed a sheet over my groin with hole in the middle of it for my penis to pop through. Then she covered me up with a “modesty sheet” until the doctor was ready.

The nurse continues to prepare for the procedure and before I know it the urologist has come into the room. After some niceties, he told me this would be quick…and then suddenly, when I wasn’t looking, he stuck what felt like a probe up through the middle of my penis and said, “you should feel a little pressure.” In my head I was saying back to him, “No shit, Sherlock!”

“There”, he said….”Oh, it’s done”, I’m thinking”…”That should make this a little more comfortable”, he continued. Then he picked up this loonnng flexible instrument and said, “Ready?...here we go.” This flexible tubing had a camera attached to it that he could direct the tube through my urethra and into my bladder, and at the end of the tube was what I would call a “grabber” that would take hold of the stent and remove it.

“Ok, a little pressure now”, he continued. I held my breath, and then suddenly he says “Ok, good, I got it, you’re all done…go ahead and get dressed and you’re free to go home.”

Wow, that was it?! I have been worried sick over the last six weeks about this appointment, and now it was over – finally, thankfully.

In retrospect, it was a relatively simple procedure…so simple, if fact, that I questioned yourself as to why I worried so much…but then again, when you are protecting and defending one of your most sensitive areas, it is only natural to have that kind of anxiety.

At least that is what I keep telling myself anyway!!!

July 18, 2011

2011-07-18T09:27:00.001-07:00

After going through what I went through six weeks ago, as many of you have before me, even a simple follow-up trip to the doctor can be a little nerve-wracking.

Why? Because if you are like me, and I am assuming many have had similar experiences over the course of your lives, you have spent a great deal of time in and out of doctors offices from anything from a simple cold/flu to something like preparing for surgery. A trip to the doctor for us is far from simple any more. Even the most positive minded of us get a little bit of apprehension when we have to hear the results of lab work or an x-ray or CT Scan, or what have you.

So, although I have been feeling fine…check that…feeling Great since the transplant, there is always that little bit of doubt that creeps into my consciousness…and this appointment was no different. I guess what was fueling my apprehension was the fact that I can see the results of my labs online several hours after they are drawn. I would go so far as to say that I am a bit obsessed when it comes to wanting to know my labs, especially my creatinine (which incidentally has remained around 1.0, and my last result from this past Friday was 0.9 – these are very good numbers).

I will admit that I don’t know what all of the lab values mean or translate to, which can be very dangerous to ones psyche. Some of the other numbers that I follow closely are potassium and sodium levels, as well as my hemoglobin and hematocrit levels. All of these levels effect both the heart and kidney function. However, a low hemoglobin level usually is an indication of anemia. With hematocrit, it is specifically a measure of how much of the blood is made of red cells. The hematocrit is a very convenient way to determine whether the red blood cell count is too high, too low, or normal. The hematocrit is a measure of the proportion of blood that is composed of the red blood cells. (WebMD).

Both of these numbers dropped like a rock just after the transplant, which, apparently is not uncommon. This could have also explained why I was feeling some angina several days after the surgery. And looking at my lab values over the course of the last six weeks, both of these levels have been gradually rising. But what I wasn’t seeing go up was the levels of my White Blood Cell count and my Red Blood Cell count.

When I met with Dr. Pavlakis on Friday, I asked her if she was concerned with any of my blood levels. I tried to be as nonchalant about it as I could, without letting on that I was concerned about it. Fat chance…she could see that it was worrying me a little. But with a wide smile, she said that she was actually happy with where my numbers are, especially only being six weeks out from surgery. She went on to explain that two of the medications I am on are actually suppressing my white blood cells – the Cellcept and the Bactrim – she said that the white blood cell level may never return to “normal” because of the work the Cellcept and the Bactrim are doing.. As for the red blood cells, she said my new kidney is working fine but it takes a while for the production of Erythropoietin to really kick in. Erythropoietin is a hormone produced by the kidney that promotes the formation of red blood cells by the bone marrow. When this not happening properly, kidney patients know this very well, the erythropoietin is replaced by an injectable, man-made drug called Procrit (generic = epoetin alfa).

All in all, I guess this was a case of worrying about something that I didn’t have to really worry about…if Dr. Pavlakis is happy, then I am happy as well. As far as the remainder of the appointment went, it went like clockwork – I have hit all of the benchmarks that they have put out for me so far, which means I was just cleared for exercise (although nothing to do with my abdomen for another month or so)…off to the treadmill! And by the way, a very happy birthday to my cousin Karen, who turns _?_ tomorrow (I don't think she wants me telling her age any longer!).

July 5, 2011

2011-07-05T08:47:00.000-07:00

Thirty days…four weeks…one month…that is how long it has been since I received Tommy’s kidney – one month today.

Wow, that month went by really quick, and for the most part with virtually no issues to speak of – except for one very annoying one…that feeling like I have a UTI brewing. Well, as it turns out, it may be nothing more than the stent that was put in irritating my bladder. In fact, I just got off the phone with the transplant coordinator because I had an awful weekend.

Over the course of the last few weeks, if I had experienced these UTI-like symptoms, it would last no more than a day. This past weekend was a little different…Saturday was hell on earth – pain when urinating, burning, going frequently (or thinking I had to go), and then just producing little dribbles of pee – very frustrating. While all of this was happening, I was feeling a pain by the incision site, and in my mind I immediately went to: “Oh shit, I have a hernia.” And this pain actually seemed to be getting worse by the day as soon as I had the staples removed, which was last Tuesday. And thank God they came out when they did, because I was ready to pull them out myself – I just wanted them out…and it felt so good once they were out.

Sunday was not much different, only this time I was seeing some blood in my pee. Believe it or not, I didn’t get too freaked out about the blood because I was told by one of my nurses before I left the hospital that I may see some blood and that is typically normal during the first eight weeks after the transplant. She also said that even a drop or two of blood can make the pee look a lot worse than it actually is.

Monday comes and during the first part of the day, I am again having many of the same symptom, but towards the afternoon they start to subside a bit…all except for the pain by my incision site. So, then I decided to leave my transplant coordinator a message detailing my weekend.

When she calls me back this morning, she explained to me that what I am most likely experiencing is a severe irritation of the stent on my bladder…continuing she says, “it doesn’t happen often, but it can happen.” She then said that since I just hit the four week mark, my surgeon may elect to have the stent removed earlier then what it is now scheduled for (the 21^st).

Thankfully, I have a scheduled appointment with the surgeon this Thursday – here’s hoping he will confirm that this is not a hernia, but in fact the stent, and I will be able to go on and live a pain-free life as soon this thing can be taken out!

June 23, 2011

2011-06-23T08:45:00.000-07:00

Well, it has been just over two weeks now, and it is amazing how well I feel, with two minor exceptions…

Twice in the last week I had days where I felt as if I was getting a urinary tract infection – I had all the classic symptoms…burning when going, going very frequently, but going and producing very small amounts of urine. I was good, I did what I was told, I called the transplant center. They ordered a urinalysis and I produced a sample for them. The sample came back negative. However, I was told by my surgeon that what may actually be happening, is the stent that was placed between the ureter (coming from the new kidney) and my bladder may actually be irritating my bladder. The surgeon said if this continues he would consider taking it out earlier than it is scheduled to come out…early or not, that is one appointment I am not looking forward to – I think I may actually have more anxiety over that appointment than the transplant itself.

Speaking of anxiety, I am still having issues with two things. The first is with the new kidney. As great as a gift that Tommy gave me, I am still trying to wrap my head around the fact that I am walking around with a part of him inside of me. I am extremely grateful, but it is still a little weird – though, I couldn’t imagine a part of anyone else in me but a part of Tommy.

The other thing that is producing a little anxiety is getting use to all of the new medications and just the sheer number of pills I am taking everyday – 32!

My new meds include Prograf and Cellcept, both of which are anti-rejection/immune system suppression medications. At first the Prograf was giving me headaches, but that seems to have subsided now, and the Cellcept was toying with my gastrointestinal system, but I think I am finally getting use to it. Other new meds include, Valcyte (anti-viral), Bactrim (antibiotic), Nystatin (anti-fungal), Pepsid (to reduce the incidences of stomach ulcers since these new meds can do a number on your stomach), and Imdur (Heart…since I had some minor angina after the transplant). So far, keeping with the med schedule has been fairly easy since my doctors set it up that I take meds only twice per day, so I do it at 8am and 8pm…and also keeping with the amount of water they want me to drink (1½ - 2 liters per day) has been easier than I thought it would be.

Next up…I get my staples removed next week – I can’t wait, because they are at the point now where I want to start pulling them out myself, though I know that would not be a pretty or pleasant experience.

June 15, 2011

2011-06-15T08:44:00.000-07:00

The deed is done!

Last Tuesday my life began again with a fresh start and a new kidney! Tommy and I went through our respective surgeries in the morning, and by late that afternoon/evening we were both in our rooms recovering.

I was actually feeling pretty good after the surgery, some pain but not a whole lot. Tommy, on the other hand, was a different story. I felt bad because the nurses kept telling me that he was in a lot of pain and then had nausea from some of the pain medications he was given. Though, I was having a little fun with my nurses as we were trying to guess how many of his nurses he had hit on since being in his room on the floor.

We actually had an unofficial race…to see who could make it down to the others room first. At about three in the morning I was awake and couldn’t sleep. So I asked one of my nurses how mobile I was, as I was hooked up to several machines. She said I could be as mobile as much as I would like and that she would bring the machine along for the ride. I seriously thought about taking that walk, but then had second thoughts. Tommy ended up beating me…he made it down to my room by nine that morning.

By all accounts from the surgeon, the surgery went well with little complication, and the best part of all is that it appears to be working, not well, but great! My creatinine (a measure of kidney function) was 4.0 before the surgery, which is equivalent to about 15% kidney function. One day later that number had dropped to 1.4 or close to 60% function (this is within the normal range). The following day it dropped even further to 0.9 (or better than 90% function!) and has remained in that area since.

I have a follow-up with the surgeon on Thursday and I am hoping that at that time he will take out the staples from my incision – I have 22 of them. I think once those are out much of my soreness and tenderness in the area of the incision will soon start to go away.

June 3, 2011

2011-06-03T08:26:00.000-07:00

Well, the time is almost here. Yesterday it became very real…not that I need any more reminders that this is all a bad dream and I’m going to wake up and be thankful that it was, in fact, all a dream.

Yesterday, Tommy and I had our pre-admission testing done and I met with my surgeon and transplant coordinator a final time before the big day. Needless to say, it was a long day for both of us – first meeting with an anesthesia nurse and then later with the surgeons – Tommy also saw his surgeon as well.

I guess the interesting part of the whole day for me was when the transplant coordinator and the surgeon went into detail of what will happen. It wasn’t like “you’ll go to sleep and when you wake up everything will be done.” No, they went into a little bit more detail, which I appreciated because, out of curiosity, I have been wondering how the surgery will go.

They said that Tommy will go in first and then I will go in about 45 minutes later. It was explained that the plan is to remove Tommy’s right kidney and uretor (the drain in the body that goes from the kidney to the bladder) and then place it on my left side leaving my right side free for a later surgery if a pancreas were to become available down the road. What I was a little surprised at, was that, even though they were placing Tommy’s kidney on my left side, it was ok that they removed his right one – apparently the kidneys are somewhat symmetrical and they will simply “flip” or turn over Tommy’s kidney before transplanting it into me. For some reason, I always thought, naively, that if you were taking a right sided kidney, it would have to be transplanted on the right.

I was told my incision would be like an arch or a semi-circle, probably just about the area of where I wear a belt and that they will tuck the new kidney into the pelvis, apparently there is enough room there. The one thing that I really cringed with was when they described the process of connecting the uretor to the bladder and then placing a stent there to hold it open – what made me cringe was the fact that about a few weeks after the transplant, they have to go and take the stent out – that will not be fun at all!

All in all, I was told that the surgery should only take about two hours…but I will wake up with what is called a “central line” – essentially an IV in my neck – it was explained that this will be used not only to flush my body with fluids, but also to deliver the initial doses of anti-rejection drugs.

Provided all goes well, and I am very hopeful that it will, my hospital stay will only be four or five days. I want to thank all of you who have been following me through this journey…it won’t stop here, however. I will keep writing about my experiences after the transplant is complete. I have enjoyed seeing all of your comments along the way, as well as the many emails that I have received in support – thank you!

May 25, 2011

2011-05-25T14:10:00.000-07:00

I have started and stopped this next post several times. In one sense it is extremely easy to write, but in another it is very difficult. It’s about Tommy. I want to introduce him to you in a way that shows that I am proud of him, and not just because he is stepping up to save my life, but more so to show you the type of person he is. I have had a lot of difficulty thinking (and over thinking) how to thank him for the gift he is giving me…hopefully these words here will somehow convey that.

Tommy and I grew up on the South Shore of Massachusetts, with an older sister, Linda (she passed away in 1989 due to complications from Diabetes) and Mom and Dad. Dad was one of the hardest working people I have ever known – he worked in masonry…at times we would ride into Boston (or through Boston on our way to a family vacation in Maine) and nothing made Dad prouder than pointing out to Tommy, Linda and I, all of the buildings in Boston that he helped to build.

Often times, when we were back at home, we would try to build our own things, or at least pretend to. There was a small dirt pile off to the side of the house that we use to run our Tonka trucks through, and build buildings with Legos…in fact, I’m willing to bet that if we were to excavate that area today, we would probably find an old truck, some Legos and a bunch of Army men.

Tommy is younger than me by five years, though you may not know it by looking at the two of us…Tommy has also been very successful in his career – moving his way up in pharmaceutical sales from a sales rep to a regional sales manager…he has even been recognized nationally for his work in pharmaceutical sales. In my own estimation Tommy has been extremely successful, though I am a little biased.

In life, Tommy and I are both very driven individuals…however, I hate sales (I’m just not that good at it)…Tommy, on the other hand, has done very well. I think we are probably both driven because of the way Mom and Dad brought us up – if you are going to do a job, do it right and if you expect to be paid for working a full day, then you better put in a full days worth of work.

Growing up I guess you could say that we pushed each other without realizing that we were doing so. Whether it was down in Mom and Dad’s basement, where we set up some old mattresses and would pretend we were in the WWF, or, and more often, you could find us out in the back yard playing baseball (or stickball) or soccer. Tommy went on to be a decent baseball player, as well as a good football player in high school.

As we got older and have taken on more responsibilities, Tommy has never wavered. In fact, he actually bought the house next to Mom and Dad. And after Dad died, Tommy spent more time in the house with Mom and has really been the primary caretaker for Mom after her stroke and battle with lung cancer. He has tirelessly worked with Mom in her rehabilitation and we are determined to help her walk again.

And through all of this, when I needed to ask Tommy if he would consider being tested to see if he could donate a kidney to me, he never hesitated. When we, as a family, discussed how to go about asking people to get tested, Tommy simply said, “Let’s just see where my tests go and then we can think about asking other…there may be no need.” In fact, there was no need as Tommy called me after several long weeks of waiting for his blood work to come back…he said that he was 5 out of 6 antigen match.

That will never be a phone call that I will ever forget. It gave me hope…and a chance to live.

It is impossible for me to fully say how much Tommy means to me, as well as how much the gift he is giving to me means to me…I can simply say “Thank You”.

Tommy

If you, or someone you know is interested in organ donation, please contact: www.neod.org; www.organdonor.gov; www.unos.org; www.donatelife.net; www.organtransplants.org; or www.thewaitinglist.org