This Time It's for Real!

March 25, 2011/1 Year and 1 Month

2011-03-25T09:49:00.001-04:00

   How blessed am I? Incredibly. Throughout this ordeal, I have fallen,(not literally), a lot. That is to say, wondered if it was ever going to get better and wondered if it was all worth it. Well, I am here to tell you YES it was truly worth it and YES I have gotten better. Thanks, in large part to the tremendous love, support and prayers of all of you and many others. My biggest supporter, needless to say, is my loving wife Linda! She has had to endure quite a bit. You all know that before all this happened, I wasn't an easy person to have to live with. Imagine, me as an invalid and medicated to boot. Not a pretty combination. But, many of you, especially Linda, stuck by me and ignored my brashness. THANK YOU!
  I have begun looking for work, albeit I'm not sure what I can do. One of my problems is explaining a two year absence from the work force and oh by the way I just had a bi-lateral lung transplant. Now I ask you, if you were an employer, how would you look at this? Do I hire the guy who may be disabled and may need a lot of time off for medical reasons, or do I hire one of the many applicants that is actually over-qualified for the job? Oh well, whatever is meant to be. I'll just keep trying and something will work out.
  We haven't been doing much, other than the usual. No trips and no special occasions, but the weather has been great and we have been chillin' on the back porch. I do miss my occasional glass of wine or beer, but it's been good. I am fortunate to have such a wonderful partner to share even the most mundane activities with.
  There was one medical issue that I was notified about after the annual checkup. It seems that when they put me under to do the lung biopsy I desaturated. Which means that my oxygen level in my blood dropped to an unhealthy level. Seems they forgot to tell me about that until a few days later. They had a device delivered that they wanted me to wear over night to monitor the oxygen level. That was a couple of weeks ago and I haven't heard anything, so I guess there is no reason for concern. I'll let you know if something develops.
   I hope winter ends for a lot of you, and you are able to get out and enjoy.

Take care,
Jon
"Organ Transplants Work, I'm Living Proof"

Happy Birthday 2 Me!

2011-02-28T13:06:00.000-05:00

I received the results from my annual exams. Everything was good. Unfortunately, I was led to believe that my medicines would be reduced and I wouldn't have to come back for a year. WRONG! The only med they cut was Prednisone, the steroid, from 10 mg to 7.5mg daily. I also have to go back every three months for checkups. I am not complaining, I am a very lucky person. I believe after this next year it is every 6 months for checkups. The two people that were having annual exams at the same time that I was were sharing stories with me about their experiences. One had his transplant and then they had to go back in because of a blockage. Then they had to go back in again to drain liquid that had accumulated because of a virus. I can't imagine having my chest cut open three times in the matter of two months. He seemed to be doing well, just not very happy with life in general.
The second person had part of her lung removed many years ago, and they used the old scar as an entry point for the transplant. She was happy about that, and said that they had made the scar even smaller and less noticeable than before. She said the transplant went well, but while she was in the hospital she had stomach problems. Seems that scar tissue from a previous operation caused something to flare up in her stomach. They couldn't figure it out for quite some time. They had to operate again on her stomach to correct the problem. So, post transplant, she stayed in the hospital for 2 months.
Even though I had a stroke, I feel very blessed that I didn't have any complications, rejection or infection. No matter how bad you have it, remember that there is always someone who has it worse. So turn it around and realize how LUCKY you are.Live everyday to the fullest. Like the song says, "Live like your dieing".
Take Care.
Jon, Out.

Day 2 of Annual Exam

2011-02-22T15:10:00.002-05:00

Day 2 of annual was shorer but grueling. Glad to have it all done. Won't get results until Thursday, but seems everything was good. Lin drove me and then picked me up, as they won't let me drive for biopsy. What a wonderful wife! Hopefully I won't see Tampa General for another year! How Lovely! And no Chris my last status doesn't mean that I now have to go to OB/GYN.
I'll tell you later some of the war stories I heard while waiting along with some others that were doing their annual exam.

Just shy of 1 year

2011-02-21T14:39:00.002-05:00

Finished day 1 of annual checkup for Transplant! What a day. EKG, Echo Cardio, Bone Density Test, Chest xray 8 vials of blood taken, Boniva shot and finally meeting with Doc. Guess everything was good, cause they let me go home after 7 hours. Either that or they got tired of my jokes. Day 2 tomorrow. Hopefully my last Lung biopsy. Oh, and I found out I have female lungs. That explains alot.....

11 Months

2011-01-26T11:17:00.000-05:00

   Today is 11 months!I feel good and I am able to do most anything I want. Weather here has been suckey, so that limits my ability to do things. However, I am blessed in so many ways. To have a second chance like this is truly amazing. I hope I can live up to my and your expectations and make a difference in this world. It is easy to get down, especially with the state of the economy. Not just the US or World economy, but for each of our personal economys. The media and the access to news doesn't help. Remember that we live in a world of sensationalism. The more spectacular the story, the more it is reported.
   My biggest and best blessing is my Loving and Devoted wife Linda. What a treasure! She has been my rock and my caregiver and my sounding board. But most of all she is my Best Friend. We have been through some wonderful times and some very trying times, but she has hung in there. I wish that each and everyone of you, if you haven't already, find your true soul mate that make your lives complete and satisfying. I have! Thank you, Linda, my true "Better Half".
   Next month I go in for my annual check-up. It will be 2 days of extreme testing, biopsies and blood work. I am sure it will all be good. Then, hopefully, I will be on an "annual only" exam schedule. I hope to then be able to do more and not be tied so much to proximity to Doctors. and Hospitals.
   I know that I previously talked of a profound blog that I was going to do. I just haven't gotten the spark needed to write it. Hopefully soon.
  Take care and Love to all.

Reflections

2011-01-13T09:41:00.000-05:00

   Approaching the 11 month mark, (January 26), a lot has happened over the last couple of years. I went from a care free, healthy person to a very sick individual, to a healthy upbeat person. I have many people to thank, many that have given me the emotional support to get through this miraculous time in my life. I won't name names, but each of you have been very instrumental in my road to recovery. I approached this disease as a glancing blow, and I would get better with a little time. Little did I know how serious it was. You know, we always feel invincible and we think that we are the exception to the rule. Well, my advice is, don't do as I did. Get answers and act!
   I know a guy in his 70's that has been having breathing troubles for months now. His condition is rapidly deteriorating, but he won't consider a Transplant and doesn't even want to talk about it. I hope that he doesn't wait too long, where he hits the point where he is too sick for the Transplant. It's very sad to watch. It brings back a lot of memories. I can't express enough, DON'T BE A TOUGH GUY and tough it out. Get help.
   A friend of mine's brother needed a Liver Transplant, and he waited too long to finally consider the Transplant. When he finally said he would consider it, he was too sick and didn't qualify for the operation.
   I don't want to preach to anyone, but this has been my experience and I hope that it is a wake-up call for some. Thank you all for listening and offering your encouragement.

Just a little housekeeping

2010-12-23T13:10:00.000-05:00

   December 26, 2010 will be 10 months since my miracle. I will expand on that thought in my next blog. I have a lot to be thankful for. One of the things I am thankful for is the support that has been shown by friends, family and some that I don't even know. I hate to mention this, but the end of the year is fast approaching. Many of you need to check with your tax people and see if you need some write-offs. If you do, it would be greatly appreciated if you could donate to NFT, The National Foundation for Transplants, in my name. The money will be used only for medical expenses and money not used for my medical bills will go to a needy person on the NFT roster. This person may have had a transplant already, or is on the waiting list. You can donate through the link on the right side of this blog. Thank You!
   Did you know that over 40,000 people die each year from Pulmonary Fibrosis! This is approximately the number we lose to Breast Cancer each year. Yet many have never heard of this deadly disease. There is no cure for Pulmonary Fibrosis, the only chance for survival is a transplant. Less than 1 percent of those diagnosed qualify or get a transplant. How blessed am I?
  Again, thanks for your support, both monetarily and emotionally.
  I plan to fight back tears and bend your ears, or in this case your eyes, in the near future with a heartfelt blog. I have a lot to say and I have been preoccupied with setting up our new abode. I think it's time to get back to it.

Enjoy your families and loved ones over the Christmas Holiday.

See ya!

Soo Sorry!!!

2010-12-17T10:48:00.000-05:00

I am truly sorry for the delay in updating this blog. We moved and for 10 weeks lived with my Mother-in-law Agnes, Thank you Agnes. Since, we have been unpacking and setting up house. Health has been fine. Fungus appears to be gone. Can't do the things I used to do, a bit slower and I get fatigued rapidly. They say that has to do with aging. Oh well. Hope everyone has a marvelous Holiday. I will update this and give more details later. Just wanted to let everyone know that I am doing fine. Thank you all for caring.

Day 209

2010-09-23T09:13:00.000-04:00

   Breaking down the barrier! I know it sounds strange, but the more I do and the harder I work, the better I feel. I still have to pace myself and take breaks quite often. I enjoy staying busy. I get up at 5:30-6:00 every morning to start my day.Mornings are toughest on me, I don't know if it's the medications or what it may be. I am not really functional until about 8:30, but I'm getting better. Poor Linda, she has to do so much and never complains.She has been a real trooper through this ordeal. I believe that most spouses would have given up and left by now. Between the mood swings,(mine, not hers), and the limitations of my abilities, this has been a real test. I guess that after 22 years, she knows how to ignore me. She is truly my Guardian Angel.
   I was thinking the other day, how truly blessed we have been over the last couple of years. Oh, I know that we have had some real major set backs but we have really had some exceptional things happen for us, as well as exceptional people step up to show their love and support. Family and friends as well as complete strangers ,(who are now considered friends), have been amazing in their financial and moral support. I can't thank you all enough. I hope to some day, soon, to repay your generosity and support.
   A couple of days ago I was counting, (not literally), all the blessing that we have received lately. I was trying to figure out why or who was opening all these doors for us. Not to make light of it, but of course God comes to mind first, but then I started thinking about my Mother. Mom died in 2005 of the same disease that I had, and I think that in her way she has been looking over me and has facilitated a lot of the events that have unfolded for us lately. She was always protective of all her friends and family and I believe that she has found a way to show us the way and put the right people and opportunities into our paths. She is also my Guardian Angel. I sure do miss her. Thanks Mom!
   I had clinic last week and got an outstanding report. The only bugaboo is that pesky fungus, Fusarium. It has altered my anti-rejection medications effectiveness, so they have to alter the dosage of the anti-rejection meds. I had to go back Friday to have more lab work done to check the medication levels as they had increased the dosage of anti-rejection medications on Wednesday. By the end of Friday, they called and said that the levels were good. I will go back for my regular monthly clinic on October 11, then again for a Lung biopsy on Nov. 9. I will then stop the medication for Fusarium on October 15, as Dr. Rolfe believes that the fungus should be gone. I'm glad, this medication, Noxafil, is $4226.00 per month. Thank God for insurance, I only pay a percentage. Some of the anti-rejection meds are much more expensive. Do you think we have a healthcare problem?
   I asked the doctor where he thought I got the fungus. He said that in 7 years they have only had 2 cases of the fungus, now in three months, they have 2 cases. Very unusual. He said that he believes that I got it from Africa. I said, "Doc. I've never been to Africa." He said, "no smart ass, from the storms". It seems that the Hurricanes and Tropical storms are strong enough that they carry all kinds of things across the Atlantic to Florida. He said that the little white birds that you see on the beaches and the ground all over Florida, are not native to Florida. They came across with one of the past Hurricanes. Who'd a thunk it?
   That's enough for now, I have to get back to packing for the move. I hope everyone is happy and healthy.
Take care.
With Love,
Jon

Day 195

2010-09-09T12:43:00.000-04:00

   Six months plus and counting. Getting ready for a garage sale tomorrow and Saturday. We've got a lot of Stuff to get rid of. Down sizing, you know. You don't realize how much "stuff" you accumulate over the years. Most of it unnecessary. Also getting ready for the move at the end of the month. A lot to do.
   Health is good. Got a call from the clinic last week. Seems I have a different fungus. Sounds a little more severe. I did a little research and this is the first thing I found.  "Fusarium infections are difficult to treat and the invasive forms are often fatal." Scared the heck out of me! I contacted Dr. Haddad and he put my mind somewhat at ease by responding, "Don't worry about that line. You are on gold-standard treatment. We will be watching you like a hawk over the next several weeks. This is treatable and I do think you are colonized with this in your airways. You likely inhaled this fungus". They told me I need to get on this new liquid anti-biotic immediately, so I drove to Tampa Friday and picked up the new prescription. Not a terrible tasting thing, as they had said. Definitely not a good tasting thing either.
   I continue to get more energy, however, the real test will be the move and fixing up the new place. I will definitely have to pace myself. It will get done, just at a slower pace than I am used to.
   We had a guest, Elaine, from Fredericksburg, VA here on Labor day. We hadn't seen here for 14 years. What a pleasant time we had. Thanks for your positive outlook, Elaine. Hope we see you again soon.
  I hope everyone is doing well and thank God the summer is almost over.
Take care all.
With Love,
Jon

Day 181

2010-08-26T10:02:00.000-04:00

Wow!!!!
   Today is six months for my miracle of two new lungs. Everyday gets better. Still some issues, but who doesn't have issues? Hope everyone is remembering to live their lives to the fullest. I know it's tough in this economy and it's easy to forget to stop and be thankful for the important things. To me that would be family and friends. I also know that the demands of life make it seem that we don't have time to talk to friends and family as often as we should. Thank God for electronics. You can text or e-mail a quick message to those important to you. Just let them know that you are thinking about them. I along with many others cannot wait till things get better and we are able to enjoy life to the fullest again.
   This experience has really taught me a lot of lessons. Most important is to be thankful for things and people that I used to take for granted. I cannot express enough the appreciation that I have for the kindness, prayers and well wishes from so many. Even people I haven't seen or talked to in many years. I am truly astounded! Another astonishing thing is the kindness of strangers. It makes you realize that in this world dominated by so many negative sound bites that when you get down to it people are really good and caring. Remember the media is really Shock News. They are trying to get you to tune in, so the worse the news or the more bizarre the story the more they believe that you will tune in. They need viewers or listeners to sell advertising.
   Off my soap box. Energy level is increasing, still no where near where I want it to be. Remember me complaining about the heat? Well, we have had 4 or 5 days of rain with no sunshine. Enough already. Where's the sun? I am putting two pictures of myself on the blog, http://jonriordan.blogspot.com/, they're pretty bad but I wanted to show that I am looking healthier and gaining weight. Oh, and I grew a beard for a short time. I think it's out of boredom. I know nothing will help the looks, but it was fun.
   We are moving at the end of September. It is right around the corner from where we are now. I will give the address at a later date. It will cut our expenses by about $400 per month. You all know every penny counts.
   Hope everyone is doing well. Take care.

Jon - Out

Day 171

2010-08-16T10:18:00.000-04:00

   Wow, it's almost 6 months since my gift of new lungs. I'm feeling very good! Had my lung biopsy last Thursday and they called with some results on Friday. No rejection and no infection. They were very pleased with my lung function, it's 80% of predicted. The fungus results won't be known until some time this week. They take a culture and add saline to it and see if it grows, that usually takes 3 days. So, we'll see.
   I'm trying to do as much as I can everyday and I definitely see an increase in stamina and muscle. Trying to exercise everyday. Doing something, swimming, walking or working out with the medicine ball indoors. Exercise is good for everything, weight control, muscle building and lung function.
   I had an interesting person donate via the website for medical expenses. I did a little research to try and find out who this person was. I didn't know them. It appears to be an 8th grade teacher in Michigan who has a disease himself, not a Pulmonary disease, a disease that causes severe tremors. Wow, what a kind person to randomly end up at my blog and then to make a donation. See, there are good people out there.
   I hope everyone is having a great summer. I know I am. I am able to breathe freely!
Love to all.

Day 159

2010-08-04T08:50:00.000-04:00

   Greetings. Linda and I were in the pool the other day and I was swimming and going under the water holding my breath, Linda stopped me and reminded me what a miracle I had been given. Six months ago I couldn't walk across the room without gasping for oxygen. What a turn around. Now, I'm not 100%, but I am recovering and I will be better than before the transplant. I am coming up on the six month mark at the end of August and everyday gets better. Hopefully some time in the future I will be able to repay everyone for their generosity, prayers and comfort. For now please accept my heartfelt "Thank You".
   Next Tuesday is my scheduled lung biopsy. Sometimes it's only a few hours, while other times it is an all day event. Fortunately, Linda drives me early in the morning, ( I have to be there at 6am), then when I'm done I call her and she comes from work and picks me up.They use anesthesia, so they won't let me drive. Usually I'm wiped out for the rest of the day. Maybe now that I am getting stronger it will be easier. Oh, and let's hope that the fungus on the new lungs is gone. That would be a good thing.
   Is this the hottest summer everywhere, or what??? Makes one not want to leave the house. Just walking outside starts the sweat rolling. We have had heat index as high as 108. This isn't Arizona so no it's not a dry heat.
   That's it. Try to stay cool. Slow down your busy day and take the time to smell the flowers. You don't know how long you have on this earth. Treasure what is important, Family and Friends.

Day 151

2010-07-27T08:18:00.000-04:00

   Yesterday, Monday July 26, 2010 was the 5 month mark since my transplant and I'm feeling great. My ability to do just about anything is increasing, albeit for a limited amount of time. I guess those doctors know what they're talking about. I will recover from this. Thanks to everyone for their support and prayers. And a special thanks to the family of my donor. I know it was a tough decision, but for those of us on the receiving end it was a life-saving decision and for that I thank you. I am also sorry for your loss of a loved one. I can't imagine the pain you have endured. I promise to do what I can to not waste the second chance at life that you have afforded me.
   Some days I wake up and forget what my body has gone through and then I feel the dull pain in my chest and I am reminded of the miracle that I received. It is quite astonishing how far our ability to extend life has come.At the same time I am reminded that it is truly a miracle. Everyday I think about the day after the operation being in ICU and seeing a lot of commotion in the room next to mine.It was a gentleman who had a transplant, but didn't wake up after the surgery. A couple of days later they removed him from the life support equipment and he passed away. So yes, I feel it is a miracle that I received my lungs with few complications.
   We all have challenges, but I think sometimes you have to stop and realize that a lot of our challenges are pretty petty. Most of all, challenges will be overcome. And remember, most of us have it pretty good and there are a lot of people with bigger challenges than we face.
   Keep a smile on your face and greet everyone you meet.

Day 145

2010-07-21T08:25:00.000-04:00

It's been a little while since I added to this blog which is a good thing. I've been getting out and doing things. I still feel really good and thanks to my donor, whoever they are, I am getting somewhat back to normal. The Medications still affect me and upset my stomach from time to time, but that is all manageable.
   I went to Charleston SC last week to visit with my sister, who has been fighting her own battle with cancer, and her husband. They remodel ships and had a job in Charleston. They rented a house for a couple of months and invited me to visit. Had a great time. It was actually hotter and more humid than Florida. So I'm glad to be back in cool Florida. It's supposed to be 96 today.
   We had our Godson, Michael, here for the weekend. He's 19 and full of energy. I tried to keep up, but I guess I'm not quite there yet. We had a grand time and I hope he did as well. He's really a good kid and so loving.
   I need to get out and do more exercising, but it's just too hot. I've got another Lung Biopsy coming up in 3 weeks. Wish me luck.
Take care of yourselves.

DAY 136

2010-07-12T12:58:00.000-04:00

   Just had Clinic. Great results from the doctor and also the breathing test I took. Dr. Haddad is very pleased with my progress, as am I. As I said everyday gets better and I gain a little more energy and stamina. I left the doctor's office and went to walk the beach. What a beautiful day, nice breeze, waves are a little high and there were a lot of people on the beach. How lucky am I that I get to enjoy this beautiful area? I go back August 10th for another, regularly scheduled, lung biopsy.
   Now I have to figure out a way to start earning some money. You know that four letter word WORK. Anybody have any ideas? I'm probably the only person looking for work, so it should be easy to find a job. Yea, right!
   No profound words today. I just wanted to give an update.
Take care of yourselves.

Day 131

2010-07-07T17:27:00.000-04:00

     I know, I'm tardy. Sorry to those of you that read this, and for those of you who don't, too bad. As you might be able to detect, I'm feeling very good. Every day does get better. Mowed the grass, edged and cleaned up all with one break today. That's a milestone! Sleep is much better also, however, I still wake every couple of hours to go to the bathroom. I believe that is because of the antibiotics, which I have 2 more months to take.
   Linda's brother Scott and his son Logan were in town for the long weekend. We had a great time. Restaurants, shopping and beach were the order of the weekend.
   I've got clinic on Monday, we'll see what the Doc says. Maybe he'll cut some of my meds. I'm ready to reduce the amount I take, but I'm not rushing things.
   Sometimes I am amazed at how lucky I am. I forget that someone thought enough of their fellow man to give up their precious organs so some others could extend their lives. Thank you to all of you that are donors and a special thanks to my donor. I am sure without this gift I would not be here. Those of you that are not donors, Think about it, you can find out more information at http://www.organdonor.gov/donor/index.htm
There is also an interesting video of a girl's journey to a 2008 double lung transplant and how she is now. I found it inspirational, but I have a different perspective. If you want to see it go to http://www.onetruemedia.com/otm_site/view_shared?p=75e4469ba801914249b0af&skin_id=701&large
   Take care and love one another!

FYI / Just an interesting article I came across

2010-06-26T15:12:00.000-04:00

By Amanda Gardner
HealthDay Reporter

THURSDAY, June 24 (HealthDay News) -- Scientists have succeeded in fashioning a new, healthy lung out of the structural remains of an old one in rats.

The researchers, reporting in the June 25 issue ofScience, hope one day to replicate the feat in humans, giving hope to the millions of people withcystic fibrosis, emphysema, chronic obstructive pulmonary disease (COPD) and perhaps even lung cancer.

But that could take as long as 20 or 25 years to accomplish, warned study author Thomas Petersen, a postdoctoral associate at Yale University.

"What we're talking about is still science fiction, although we're a lot closer now," added Dr. Neil Schachter, a professor of pulmonary medicine at Mount Sinai Medical Center in New York City.

Petersen and his colleagues started with a normal rat lung, then treated it chemically to remove all the cells, a process known as decellularization. This left them with just the lung scaffolding, including the all-important airways and blood network.

"We retained the overall structure of the lung but it was completely free of all cells, as well as components that would be detected by the body as foreign, meaning that the scaffold would not be rejected were you to do a transplant," Petersen explained.

This was the most challenging part of the experiment. "The 3-D structure of a lung is quite complex and it's not something that you can easily make," Petersen explained.

The team then seeded the scaffold with blood vessel cells and airway cells, and then grew the lungs in a bioreactor for about a week. During the culture period, the lungs were made to "breathe" mechanically.

With the newly engineered lung tissue, the group was able to perform four transplants of a left lung back into rats.

"The transplants were maintained for up to two hours and they were functioning in terms of pulling in oxygen and getting rid of carbon dioxide," he said. "The lungs were exchanging oxygen."

Researchers now need to do more experiments in rats, refining the rebuilt lung and extending the duration of the transplant.

"The lungs we have now perform quite well, but they're not perfect," Petersen said.

The process would be much the same in humans, starting with replicating the scaffolding, then repopulating it with new cells.

"The more challenging thing will be to identify the right cells and this will probably involve using stem cells derived from a particular patient," Petersen said.

A separate group of researchers also reporting in Science were able to create an artificial "lung on a chip," basically a miniature model of a working human lung made from cultured human cells from lung and blood vessels.

The manufactured "lung" is about the size of a coin or a pencil eraser.

"We basically used microfabrication techniques that were developed for the computer microchip industry," explained study senior author Dr. Don Ingber, founding director of the Wyss Institute for Biologically Inspired Engineering at Harvard University. These were combined with tissue engineering processes.

"They have constituted in a system which is quite elaborate," Schachter said, adding that one aspect of the model seemed particularly useful: the ability to study the interactions of inhaled toxins much more easily than could be done in existing systems.

Ingber and his group are hoping the lung on a chip can replace animal models as the basis for pharmaceutical research. Animal models, Ingber pointed out, are incredibly costly and take a long time to complete.

On top of that, he said, "animals often don't predict what happens in humans. Our motivation was 'Can we shortcut all that.'"

The group is also working towards developing a "human on a chip," which Ingber said is essentially "making multiple organ-on-chips [e.g., lung, heart, gut, liver, kidney, bone marrow] and linking them together by engineered vascular networks."

Day 118

2010-06-24T11:33:00.000-04:00

   Finally, I think I'm turning the corner. It has been 3 good days. Energy level is getting better, the right side is responding better and getting stronger. I've reached, and sometimes exceeded, my weight goal of 175 lbs. Now I see light at the end of the tunnel. It's been a long time coming.
   We had a great weekend in Orlando with my sister and her husband, Thanks. Stayed at the hotel all weekend and rested poolside, etc. I even got permission to go swimming from the doctor. They had a lazy river that I help live up to it's name. We ate a lot! It was grand opening of Harry Potter at Universal, so Orlando and the hotel was very crowded.
   Before I left Friday, I went to have lab work done at the hospital and true to form had meds changed again. Because of the antibiotics for the fungus my Prograf (anti-rejection medicine) level was sky high, so I was told to stop taking the Prograf for 2 days and come in for lab work on Monday. Well Monday's results were high still, so I was to stop taking Prograf for another 2 days and then begin 1mg per day. That's down from 8mg or 8 pills per day. The Prograf make you real jittery and causes tremors and you get lightheaded. Back for labs on Monday.
   It's hot, mid 90's, but no oil on the beaches. We are maintaining.
Thanks for listening.

Day 111

2010-06-17T13:15:00.000-04:00

Hi. Well, I guess I'm not invincible like I thought. Had some swelling all along the incision, so I called my Transplant Coordinator who called the doctor who said come in Monday. So I went to the hospital Monday and he said that the wound was fine and that I probably tore scar tissue inside when I carried the 2 cases of water into the house from the car. Then he proceeds to tell me that they learned from the last biopsy that I had a fungus growing in my lungs. He didn't seem really concerned and he put me on a 90 day antibiotic treatment. I have to go back tomorrow to have blood drawn for lab work because this antibiotic is tough on the kidneys. They have to reduce the anti-rejection medicine Prograf, because it is also tough on the kidneys. Wow, what a balancing act. Now you know something like this wreaks havoc with your mind. I feel good, albeit still low energy. I have a little bit of a cough, but feeling good. Sleep is an issue once more, can't get more than 2 hours of sleep before I wake up and start thinking.
   My Dad came down this week. We had lunch yesterday. He looks good. My sister, Chris and her husband Andy invited us to meet them in Orlando for the weekend. Chris has had health issues recently so I haven't seen her for quite some time. Thank God she seems to be back to good health. It should be a great weekend. Oh, we're also going to see Andy's brother Matt and his wife Joanne. Matt and I actually went to high school together and started a fence company, (short lived), while in high school.
  I asked the doctor when am I really going to see a vast improvement in my ability to do things or is this as good as it gets? Remember they said at 3 months I would feel 20 years younger. Didn't happen, I feel good and I don't have to use oxygen, but not 20 years younger. Anyway, he said because I had the stroke, my rehab has been slowed. He said I will definitely see a great improvement at 6 months and then even more at 1 year. I hope so. This is really frustrating. Everything I do is a struggle. I know it could be a lot worse!
   Enough boo hooing, I am really thankful for everything. Every once in a while the mind goes to a dark place. Thanks to everyone for their love and support. Thanks to everyone who ordered cookbooks. Especially, thanks to everyone for their donations.
   Now, go out and do something good for someone today.

Day 104

2010-06-10T18:32:00.000-04:00

   I know it hasn't been a week since my last post. Good news, I got a call with results from Tuesday's biopsy and clinic. Biopsy came back negative. No rejection and no infection. Lab work came back great all levels are good and kidney function is good. They also cut back on some of my steroids from 20 mg per day to 15 mg per day. The goal is by the end of the first year to have these steroids down to 5 mg per day. I also asked if they thought that I would be able to stop the insulin injections at some point. The answer was an educated yes. Oh, and now clinic will be once a month instead of every two weeks. Yeah!
   I started walking again, after getting scolded at the hospital on Tuesday. Somewhere around 2 miles per day. I'm over the 7 to 10 mile walks. Remember it's mid 90 degrees here.
   These are the reports that I like to hear. It shows real progress and it lifts the spirits. Have a great day.

Day 102

2010-06-08T19:54:00.000-04:00

   Had my lung biopsy this morning. Had to be at the hospital at 6 a.m., and Lovely Linda had to drive me. She also picked me up afterwards at 12:00. This was a rough procedure. Not sure why, but while waiting for Linda I felt like I was going to pass out and felt nausea as well. Came home and slept until 4:30. Feeling better. I was told that I need to exercise more, that is the only way to build the stamina. Okay, I already knew that but I guess I've been lazy. Going to look into a low cost gym in my area.
   Thanks to Linda's push, I've begun trying to give back in my own small way for this gift of life. I am getting re-involved in a website called Transplant Buddies. When I was searching for information, this was a great resource. It is a web site that people that have had transplants can share their stories. It is also an area where people who are diagnosed with ailments and may be in need of a transplant can go and ask questions and get more information about the process. That was something that I felt was needed, a place to get specific information. Not just medical information from doctors and hospitals, but actually experience information from someone who has gone through it. It is a scary prospect learning that the only way to get back some quality of life and continue living is to have an organ transplant. Who'd a thunk it? Something like this that usually happens to the other guy actually is happening to me.
   I've been discussing moving with Linda. It is too much to try and keep up this house and we need to cut expenses, so we are thinking condo. We have to stay close to here for Lin's job, which enables us to get health insurance albeit expensive. I also need to stay close to the hospital, which seems like my second home. I visit every 2 weeks. Anyway, we'll see.
   Most importantly, I'm feeling good. Wow, can you believe no complaints from me? I've got a lot of ideas in my head about other ways to continue this journey and to contribute to society. Don't just go through life, let's participate. There is a lot of anger out there, especially now with the economy, the Gulf crisis and other world events. Let's start showing more compassion in our little world and watch it spread. It could turn into an epidemic, a good one. Take care.

Day 96

2010-06-02T10:45:00.000-04:00

   Passed the 3 month point. Feeling good. Just disappointed with the level of stamina, or lack of stamina. Still weak on the right side, but overall I feel good. My appetite is good, maybe too good. I've gained another 3 pounds. Better start slowing down. With the energy level low, I don't burn as many calories as I need to maintain a low weight. Trying to maintain at 175 lbs, I am at 174.
   Linda and I went on a road trip to Kentucky to visit our good friends Mike and Gloria. They just transferred to Louisville from Portland Oregon. Beautiful house, beautiful area and such good friends. Thanks for a great time. We drove up on Friday and returned Tuesday. Good trip, except it took two hours to go through Atlanta. The trip turned into a 15 hour ordeal. Fortunately we broke it up into 2 days.
   It's hot here in Florida and that makes it more difficult to get out and do things. Especially in my condition, I have to cover up and protect myself from the sun. Hat, long sleeves, long pants and sunglasses are usually the dress to do outside tasks. My immune system is compromised by the medications that I am taking. Remember the doctor said that it is not if I will get skin cancer, it is when will I get skin cancer. Boy, if that's not a pleasant thought. Speaking of doctors, I have a lung biopsy on Tuesday the 8th. Wish me luck.
   It seems that every week I am ordering more medicines, what a mess. Thanks to all for their support, it really helps offset some of the medical expenses. Hopefully at some point, I can repay your kind generosity.
  At some point in the near future I am going to explain, in detail, the psychological impact of this disease, the transplant and post transplant. You don't know how many times you think about death throughout the process. I mean an intimate look at your mortality, and whether this is your time to go or not. I never saw the white light or anything, but I felt sure that I couldn't take anymore. But that is for another day.
   An interesting perspective that I heard this weekend is, when you are beginning to get frustrated by someone, step back and look at them from another angle. Not physically! Look at them as a neighbor or mother or brother, not as a salesperson or work mate. Try to understand there perspective.

Day 88

2010-05-25T18:04:00.000-04:00

Okay, so it's the 88th day since my bi-lateral lung transplant.Two days from the magic 3 month mark. Remember they said I will feel twenty years younger and ohh so much better at the 3 month mark. I feel good, but I don't feel twenty years younger. Still gimpy on the right side. Now I have a burning sensation in my right hand. I asked the doctor at clinic last week and he said it's because I am gaining strength in the hand, but cautioned me to keep an eye on it. What the heck does that mean? If it falls off let him know?........... Gaining weight, up to 171lbs. That's a grand total of 12 lbs gained.Gaining strength, walking and working out with a exercise ball and working out with Nintendo Wii. Gaining energy, still not jumping out of my seat but getting more stamina and energy. Overall, it's all good....Went to the picnic for lung transplant recipients and those waiting for lungs. See pictures on blog. Heard a lot of stories. We are all thankful for this second chance, but I can tell you everyone has had their challenges. Interesting observation by Linda, my wife, most of the recipients look great. You wouldn't know that they had had a transplant.Oh, and I found out that I was #201 transplanted. They had done 200 lung transplants at Tampa General Hospital before me. The program is 5 years old. That's pretty amazing. Actually, the ability to do 1 is amazing to me..............Had to go to Tampa General today, my Prograff level was low at the last clinic so they increased my dosage to 8 pills of Prograff daily. Prograff is the main anti-rejection medicine, so it's at the top of the list in importance. I can't tell when the level is low or okay. There are no effects I can feel..............I go June 8 for another lung biopsy. They say this is a routine procedure, but if they use anesthesia and go down into your lung and snip a piece I don't look at it as a routine procedure. But hey I better get used to it because I will have them on a regular schedule forever...........My car broke down over the weekend, the transmission went out. Sometimes you just have to laugh because you know that even when you think you are on your way back down the road to recovery that around the next corner there may be another challenge. Oh well that's life............Went out and mowed, edged and trimmed the yard today after the hospital trip. I was able to complete this entire task without having to stop and rest. Now that's progress!.............I hope this doesn't sound like Donnie Downer's blog. I really am in a good place and very thankful for all the support. I am a very fortunate person, I got a second chance at life and I have lots of love from family and friends and even people that I have never met. I guess as I always say patience is a virtue that I never quite acquired. Today's task. Wave at somebody, they probably have had a worse day than you.

Day 81

2010-05-18T15:13:00.000-04:00

Wow, what a week! You know how your mind says one thing and your body can't seem to fulfill the task. Well that would be me. I have so many things I want and need to do, however, the stamina is just not there. I went out today to do yard work and after mowing the grass I wanted to edge and trim. Too wiped out, I ended up cleaning up and coming inside. Last week I did all of the trimming and edging and cutting and was wiped out for 2 to 3 days afterwards. Patience is a virtue. I must learn patience.............I had clinic yesterday. I think it's really a bitch session for me with the doctor and nurses. I tell them all that ails me, and they try to figure out what to do about it. I am actually doing well except my energy level has been way down. The doctor checked some of my previous lab work and found out that I was no longer a man. Well, my testosterone level was non-existent. The two indicators were both at or below zero. Go figure. I got a testosterone shot and expected to see a dramatic difference right away. What did I say before, Patience. Well, finally today I am feeling my energy level beginning to rise. Thank God!................I go to Clinic, which is at Tampa General Hospital every 2 weeks and they draw oodles of blood for lab work every time. I get a call a day or two later with results. Every time lab work comes back great, which indicates no rejection and no infection.... They do alter my medications from time to time. Remember, I now take approximately 40 pills a day and Insulin shots to the stomach twice a day. These will be reduced over time, but I will take anti-rejection pills for the rest of my life. Hopefully , when they reduce the steroids that I take, I will stop the Insulin shots as well. Please, I am not looking for sympathy this is just information that I am sharing. I am very lucky. I got a second chance. Many people don't get a second chance and many are much worse off than I am................Are you an Organ Donor? Think about it............They are having a Transplant Picnic on Saturday that we are going to. The doctors nurses and previous transplant recipients as well as potential transplant recipients will be there. Should be interesting to hear the stories. Hopefully I can get some pics and post them. I did put some more recent photos on the blog last week. If you get a chance check them out at http://jonriordan.blogspot.com/.