A New Liver, A New Life

I Made Lemonade

2013-03-11T17:49:00.001-07:00

We all know the saying.... When life gives you lemons, make lemonade. Since my transplant, I have done just that. Instead of making myself the victim of the situation I have used my transplant to make my life better. My lemonade just got sweeter ... I am starting a new chapter of my life ... I have landed my dream job!!

I will be working with my local OPO- Organ Procurement Organization as a Hospital Services Coordinator. I will be working with local hospitals to develop and promote a pro donation culture and increase organ donation. When I resigned from my Bank career it was one of the hardest decisions of my life. I wasn't sure what my next chapter of life would entail but knew I would return to work when the right job presented itself and this is the right job, I am so excited!!!

An odd obsession

2013-02-04T10:47:00.000-08:00

My last blog entry confirmed my life was great. I lied a little... it was missing the ability to accomplish a sit up. A sit up is an easy task for most people but it was something that I haven't been able to do since my transplant. During my surgery my abdominal muscles were cut and I lost all feeling in that area. I have been working on my core strength daily for the last 5 months but still was not able to do a sit up. I asked Dr. Guy during my last appointment if I would ever regain strength and she had no idea... I was the first patient to obsess over doing one. I know its a weird thing to obsess over especially since I can't remember the last time I did a sit up before my transplant.

Well folks.... CHECK THIS OUT!

I CAN DO SIT UPS!!!

I bet you are asking why I am not in gym clothes? This was taken at a photo shoot for Blood Source, they are using me on their promotional items.... I am hoping for the blood mobile! ( don't worry...not these pictures, LOL) I was so excited that I was telling them about my sit up so she took a picture so I can use it on my blog.

I wonder what my next obsession will be now that I have accomplished a sit up! Stay tuned!

TWO YEARS!!!

2013-01-08T08:52:00.001-08:00

Today is a VERY special day. It marks 731 extra days of life. That's right folks.... today is my two year Liverversary!

At one point I didn't think I would live and extra year so to be able to celebrate two years is truly a huge accomplishment. My one year anniversary proved I was a survivor and that I made it past the most critical year post transplant. This two year anniversary proved that I have a long life ahead of me and will create new memories for years to come. I no longer consider myself as "the sick transplant patient". I am now "the girl who had a transplant and has a better life because of it." I never understood how people go through horrible things and later say that they wouldn't change a thing. But now I am that person. My life is so much better than it was before transplant. I wake up each day so thankful for what I have. My friends and family are now more important than they ever were. I have met some wonderful people through this experience and some crazy ones too! I still have some bad days but the good far outweigh the bad. It has taken me and my body awhile to adjust to this new life but I have never been happier and I wouldn't change a thing!

I wish I could some how express how grateful I am to my donor and all the donor families out there. Words just cannot do justice. Thank you from the bottom of my heart and soul. I do my best to honor my donor each and everyday.

PS... Just because I am no longer the sick transplant patient does not mean I no longer accept gifts to celebrate my extra years/months of life. Presents are always welcome!

PPS... I had my two year checkup at CPMC and I am healthy as a horse! I love my new doctor and my liver is doing great. I brought the ICU nurses, Doctors and staff baskets of treats to celebrate the big day. Here are some pictures of me and Tania, the NP that helped save my life. The picture of the left was a month after transplant and the one on the right was last Thursday. I laugh looking at the picture on the left... I thought I looked great back then! HA... I was as grey as my shirt! So glad to have my normal skin color back!

Happy Thanksgiving!

2012-11-21T12:17:00.000-08:00

So much to be Thankful this year! I continue to be blessed with good health, a wonderful husband and family, and great friends. I am most thankful for the gift of life my donor gave me and each day I wake up knowing how lucky I am.

Thanksgiving means more to me now than it ever has. Thanksgiving 2010 was the first day I felt really sick and marks the first day of my liver failing. Thanksgiving 2011 was better, I was alive but truthfully I was still in survival mode and still was adapting to my new life. This Thanksgiving I can honestly say I am loving life and count my blessings each and every day.

Happy Thanksgiving!

Ignorance is Bliss

2012-09-09T20:49:00.000-07:00

When I "retired" from my job, I was added to Joe's insurance. We went from a PPO to an HMO to save money. With that change I now do my lab tests at Mercy versus Quest and I couldn't be happier. (This is the only positive thing about the HMO and we will be changing to a PPO ASAP) The lab is much nicer, less busy, doesn't smell like smoke but best of all, they DO NOT send me my test results. At first, I hated it and kept calling my transplant nurse for the results but as time has passed I have started enjoying not knowing. You may be asking why and tell me that I need to be proactive in my healthcare but truthfully I was neurotic with my results. I would review them for hours (OK, not really but I needed to sound dramatic) and compare them to previous results. If there was any change I would worry endlessly and call my transplant nurse to make sure she saw them. Now my nurse sends me a letter and let's me know my results are stable. I would prefer her to use the perfect over stable but it's a pre printed form so will let that slide... for now. I have so much faith in my three Doctors and nurse who are copied on the results and I know they will call if something is wrong. If not, Joe will tell me my eyes are yellow!

Below is a picture of me and my Transplant Hepatoligist, Dr Bzowej. She is moving to New Orleans and this was my last visit with her. I will miss her dearly since she was with me at my worst and was the one to list me for my transplant.

This is my first update in a long time and not even sure if people still read this. No real reason why I haven't been updating but my plan is to update more. It may not be about my health since it's ~~stable~~ perfect but with other fun stuff going on in my life.

Retired Life

2012-05-25T09:24:00.000-07:00

Well, it's official. I am no longer employed. My last day of work was harder than I thought, not sure what I was expecting but didn't think it would hit me as hard as it did. My sadness quickly went away on Sunday as my normal Sunday night anxiety was non-existent. My first couple of weeks not working have been WONDERFUL! I have been filling the time with the gym, farmers market, cooking, volunteering and gardening.When I feel tired I take a nap rather than push through the exhaustion.

Health wise, I am good! It looks like my white blood cells may have finally accepted the anti-rejection drugs. I haven't given myself a neupogen injection in 7 weeks and my counts have been in normal range. If they remain consistent in my next blood test, I will only need to do labs once a month! It feels so weird being a normal transplant patient rather than the high maintenance one that I normally am. I have gone from speaking to my transplant nurse a couple times a months versus a couple times a week! I am sure I just jinxed myself and something will go wrong but until then, I will think I am normal:)

I've been attending lots of seminars in my retirement. They're called naps. ~Merri Brownworth

The End of an Era

2012-04-26T09:41:00.001-07:00

Life is all about choices. This transplant has made me make choices that I never thought I would ever have to make.....Choices that have a direct impact on the quality of the life I will live.

After being back at work for four months, I have made the choice to resign from my job. It was a very hard decision to make but one that was needed to be done for me. I worked at my Company for 15 years and the job that I am leaving is the job I was perfect for, the job I loved the most, the job I worked my ass off to get promoted to and the job I will forever be sad to leave. So many emotions are running through my mind....I feel like a quitter especially after my work stuck with me while I was sick and during my recovery. I know I have their full support but still have some guilt about leaving even though I know it will be the best for my health, life and family.

I am sure you are asking why I am leaving? The answer is simple, it was the perfect job for me in my previous life, before my transplant. I was so eager to return to work to prove that I can resume my normal life but after some serious thought I have accepted that I am not the same person who I was before.

So what is next? My last day is May 11th and the rest is To Be Determined!

"Don't be afraid your life will end; be afraid that it will never begin."
~Grace Hansen

A Maui trip and Clinic Visit

2012-03-18T20:47:00.000-07:00

We had a great trip to Maui and I survived my first airplane trip without getting sick! I decided to wear a mask on the way there just to be safe. It was five hours of annoyance so I didn't wear it on the flight back home. On the way home, there was a lady a row over coughing her lungs up and I thought I would for sure get sick but my immune system did well and I was fine! We spent five days in Maui and I enjoyed every second. We went whale watching, I had a massage and best of all, I ate really yummy food the entire trip. I am sure I gained at least 10 pounds! We were super busy the entire trip and stayed up late every night and by the last night, I was exhausted. I joked to Joe that I needed a vacation from our vacation!

Last week I had a clinic visit and saw Dr. Bzowej. It was a good visit but not a perfect one like my last couple of visits. My ALT number( a liver test) has doubled and while it's within normal range, it's something that we will need to keep a close eye on to make sure it doesn't rise any higher. She didn't seem to worried but the perfectionist in me isn't happy with that news. My WBC seems to be less dramatic so we are decreasing my neupogen shots again. Hopefully my WBC will cooperate and I can slowly be weaned off those shots. I don't mind giving myself injections but the side effects SUCK so I am very happy we trying again to reduce them.

No news is GOOD NEWS!

2012-02-25T10:51:00.000-08:00

I don't have much to update which means everything is going good! I am back into my old routine at work and still feeling great. I am still doing blood draws twice a month and Nurse Karen called with results from my last test and my liver counts were perfect! One of my anti-rejection counts was a little low so she will keep an eye on that but she wasn't to worried since my liver was happy. I have a standing lab order so I can go to the lab whenever I want so I went on a Friday vs my normal Monday to play a trick on my WBC. I give myself the neupogen injections Friday night so I wanted to see what my count would be Friday morning of the following week and they were not low! Maybe my WBC is over being so dramatic and finally behaving???

I see Dr. Bzowej on March 9th so hopefully she will reduce the neupogen injections to every other week. They do the job of keeping my WBC count normal but the side effects SUCK!!! Imagine your bones feeling like they are exploding and that is what I feel every Saturday.

We leave for Maui on Monday!! It will be interesting to go on a tropical vacation and not being able to be in the sun but regardless, I know we will have a great time! I will share some pictures when I get back!

ALOHA!

Four weeks down... a lifetime to go!

2012-02-06T21:21:00.000-08:00

Everyday for the last four weeks, my coworkers have been asking how I am doing. My response is always the same.... "I keep coming back so I must be doing good.'

I am AMAZED on how well I am doing being back at work. Truthfully, I was terrified to return to work. Imagine the anxiety you feel returning to work after a two week vacation and multiply that by 100. I was scared I would be tired, scared I lost some brain function, scared that I lost my work ethic. Well, I was scared for no reason at all and it's like I never left. I have more energy now than I did when I wasn't working. I have decided that being lazy just makes you more lazy. I am back working 10 hour days and I am loving every second of it. Ok, I am lying... I do not like my alarm going off at 5:30am......!

The most gratifying part of being back at work is that I do not have time to think of myself as a transplant patient. I take my pills throughout the day but at no other time do I feel like I was ever sick. I am being cautious and being a germ freak but other than spraying Lysol a couple of times a day... I AM BACK TO MY NORMAL LIFE!!!!

We leave for Maui in 21 days and I am so excited! After working for 7 weeks, I need a vacation! LOL.... just kidding. Joe won Manager of the Year and we were suppose to go on this trip last year but I decided to mess up those plans by almost dying so his work is letting us go this year!

One year!

2012-01-16T10:36:00.000-08:00

All year I was planning a big one year post. I had a couple of ideas but when sitting down to write no words really were able to justify how I feel so no big post will be written. Just know that January 8th, 2012 marked one extra year of extra life and no amount of thank you's can express how grateful I am for the gift of life my donor gave me. I will continue to live my life to the fullest and remain postive in honor of them.

Since I survived the hardest year post transplant I will be returning back to work tomorrow! Wish me luck!!!

A year in review... with pictures!

2011-12-30T17:28:00.000-08:00

Enjoy!!!

A year ago today...

2011-12-20T12:00:00.000-08:00

Flashbacks suck! For the last month, Joe and I have had many flashbacks of me being so sick last year. "A year ago today" starts out many conversations with my family and friends. The truth is that a year ago today, I WAS DYING. My liver was failing, my body was shutting down. Daily blood draws were followed by my Doctor calling with hope that my liver numbers would decrease. Puking in just about every parking lot I went to. Not being able to drive since I wasn't able to master puking while driving. Unable to eat anything except a banana yet expanding with fluid retention. I was so yellow, my teeth were glowing white. I didn't really realize how sick I was until Christmas Eve day. Joe took me to Macys and I had to sit down just walking to the store, I thought I was going to pass out. Little did I know I would be in a coma just 10 days later.

Exactly one year ago, I somehow managed to make it to my niece Kiera's Birthday party. I sat on the couch the entire time and refused to let anyone take a picture of me since I looked like a yellow highlighter. A year later, she had another Birthday and I made sure to have my picture taken at her party. I can't wait until next year when we can say, "a year ago today, we were having so much fun!"

With my nieces and nephew. Look at me now....a year later, a new liver, a new life!

The Best Clinic Visit Ever!!!

2011-12-03T10:12:00.000-08:00

After 11 months I have finally had a perfect clinic visit. The past couple have been good, but yesterdays was GREAT!!! Why you may ask??? I was finally released to go back to work for a January 15th return. This is a huge step since I was told that only some liver transplant patients ever go back to work. The odds were against me needing a transplant but at least I have a little luck on getting to return back to work. My liver counts remained perfect and my white blood counts are still stable with once a week neupogen injections. We are going to try decreasing my injections to every other week so hopefully my counts will cooperate. This was the first visit that no other test was ordered and she didn't have any concerns. She said she was so happy at how well I was doing and to keep up the great job of taking care of myself.

I am hoping that the great visit helps me get into the Holiday spirit. All year I have been looking forward to celebrating the Holidays since I was sick last year but have found myself being a bah humbug. A combination of remembering how sick I was and knowing my donor family is experiencing their first Christmas without a loved one has brought me down. I think once I decorate my house this weekend and put up a tree, I will get more into the spirit. I did write my donor family a letter but out of respect for them, I will not be updating my blog on the outcome. Whatever choice they make is the right one.

Happy Thanksgiving!

2011-11-24T09:00:00.000-08:00

Unlike most people, I am not going to list the things that I am thankful for. I don't need a Holiday to express how thankful I am. For months after my transplant I wondered why this happened to me and everyday the reason becomes more clear. This ordeal has made me more thankful, more strong, and overall, a better person. I hope that those close to me have also become better people because of it. Life is so precious and every day needs to be cherished as it can disappear at any time.

Today marks one year from when I woke up with right rib pain and realized something was wrong. Who would have ever thought the pain was actually my liver that was starting to fail. I didn't eat much and didn't feel good. Today, I feel GREAT and plan to eat the day away while enjoying the day with my family.

I hope everyone will count their blessings this Thanksgiving and always.

Thanksgiving Day comes, by statute, once a year; to the honest man it comes as frequently as the heart of gratitude will allow. ~Edward Sandford Martin

Please send some extra love and prayers to my donor family today.

I am sure I have people laughing at me

2011-11-06T19:55:00.000-08:00

We all have done it. We have witnessed some crazy behavior and posted it on Facebook, Twitter or gossiped about it. Well folks, I wouldn't be surprised if I have been the person people are talking about. Some of my crazy new habits include:

Carrying around a can of Lysol at the gym and soaking every piece of gym equipment before I use it. I even wait the recommended one minute before I wipe it down. Anyone want to become my gym partner?
Refusing to use anyone's pen. When needing to sign something I will dig around my purse to find my pen even if it takes a long time. Those who know me know how much crap I carry around.
Before looking at a restaurant menu, I wipe it down with a wet wipe. Not confident those ever get cleaned.
Those wet wipes sure come in handy cleaning anything on the table I may use...ketchup, utensils, salt/pepper shakers.
When walking up to a door, if there are people around me I wait back so they can touch the door handle and keep the door open for me. I bet they think I am lazy but saves me from door handle germs.

You may think I am crazy but I am just protecting my immunocompromised self during cold and flu season!

Questions that make you go hmmmmm

2011-10-26T09:31:00.000-07:00

Yesterday I went to the dentist and I had to fill out a new health questionnaire. One of the questions was asking me to rank my overall health from not good to very good. I sat there pondering over that question since I really had no idea on what to mark. I feel great, my blood test remain stable but are transplant patients considered to be in very good health? Do very healthy people take 22 pills a day? Get hospitalized numerous times a year? Have a 24 hour access to a Doctor? Considering I wouldn't qualify for individual health insurance or life insurance my first thought was no but then I remembered a Doctor telling me my liver function was better than his so I changed my reply to very good.

“Choosing to live your life by your own choice is the greatest freedom you will ever have.”

I have two choices. I can think of myself as sick and unhealthy or as a healthy 31 year old who just needs some TLC care. I chose the latter, it's all about attitude people!

"If you don't like something change it; if you can't change it, change the way you think about it." ~Mary Engelbreit

They were right again!

2011-10-12T09:05:00.000-07:00

Ever since my transplant in January, my Doctors told me I will resume a normal life. I will admit that I never believed them. While I remained positive, I accepted my life had changed and would make the best out of it but I never thought I would feel normal again. Well, I was wrong and they were right again since I have been feeling more normal every day. Besides being a germa-phobe, lab visits and taking a shit load of medicine, I feel like my old self. I feel good and have been busy filling my days with things to do. I am planning trips with friends in the Spring and resuming living my life without the fear of hospital admissions and my liver failing.

As far as my health, things are continuing to head in the right direction. My ANC and WBC have remained stable with a decrease in the Neupogen shots. I am not trying to get too excited but I am hoping my body is finally accepting the anti-rejection drugs. I haven't been in a bubble for almost two months..can I get a woohooo! My CT scan came out negative for any hernias so I just have a bad pulled muscle in that area. I am going to see if my Physical Therapist can help fix that. My liver function tests continue to be great and everything is looking good for my January return to work date!

I have been really thinking about my donor lately. I think of them at least once a day but recently, I can't stop thinking about them and their family. They recommend waiting a year to write the family but I think I am going to do it earlier and send them a letter for Thanksgiving. I hope I can gather the right words to express how truly grateful I am.

Clinic Visit

2011-09-28T09:21:00.000-07:00

Yesterday I had a clinic visit with my favorite and main transplant physician, Dr. Bzowej. I haven't seen her since June so was excited for the visit. Even though she is in constant contact with my transplant nurse regarding my care it is always nice to have an appointment dedicated to my list of questions. The mains topics we discussed were:

Returning to work! I know you are probably sick of this topic and thinking to yourself that I need to enjoy the time off but I am ready to resume my normal life. Everyone keeps telling me I will have a normal life and without me back at work, my life is not normal. I also was never the type of person to call in sick so being off of work so long has been hard. The good news is that she is confident I will be returning back to work but the bad news is that she wants me to wait until January 15th. My WBC is still not stable enough and she wants some more time to be able to tweak my medicine and neupogen shots with the ability of being in my bubble if needed. My WBC counts have been high these last two weeks so I am not needing daily injections so she is hoping my body is finally getting used to the medicine. She confirmed that my body is difficult but we already knew that! Although I was hoping I would get to go back sooner, I never have had the Holiday season off so will enjoy it while I can. I was so sick last Christmas so I am excited to celebrate this year!
My narrowing artery. I had an ultrasound to check on my two arteries that narrowed after my transplant and GREAT news... the aspirin therapy is working and the ultrasound showed a normal blood flow to my liver!! That means they will not have to do an additional surgery to insert a shunt.
Dentist and vaccines. I have finally been cleared to go to the Dentist and get both my flu shot and pneumonia vaccine. My teeth are so happy to get cleaned and I also need two crowns. I needed the crowns before I got sick so hopefully won't need additional work since I waited so long.
Prednisone. She is taking me off steroids!! Prednisone is an anti-rejection drug and she is tapering me off over the next eight weeks. I hope this will decrease my cravings for dessert!
Hernia. I may have a hernia near my incision site so she ordered a CT scan to determine if surgery will be needed to fix. I will keep you updated on the results

Overall, I feel great and getting more energy every day! I am happy for the great clinic visit and hope for a healthy next couple of months!

The Power of Two

2011-09-14T09:05:00.000-07:00

On Saturday I went to San Francisco to attend the premiere of a documentary- The Power Of Two. “The Power Of Two” is a documentary film that tells the story of twins who received double lung transplants after suffering a life long battle with cystic fibrosis. It inspires action around organ donation and transplantation, and awareness of cystic fibrosis (CF) and other chronic illnesses. You can watch the trailer HERE.

I was able to relate to some but not all of the movie. Most organ transplants are a result of a chronic life long illness so once the transplant is done, a new wonderful world opens up that allows the person to do things they never were able to do before. My story is different since I never had a chronic illness and was sick for only one month prior to the transplant. Regardless of our stories being different, the movie was inspiring and I learned a lot about CF. Although my life is now filled with health issues, I am lucky that my first 30 years of life were healthy. The movie also highlighted the twins attending the Transplant Games, Olympics for transplant recipients and donors which has motivated me to start training for the 2012 games! What sport you may be asking......BOWLING!!

Overall, I am feeling good! My white blood count has remained stable from my daily neupogen injections and I only need to do labs weekly VS twice weekly. I had an ultrasound done to check my artery and to see if the narrowing had gotten worse but since they haven't admitted me, I assume all is well! My liver counts have continued to remain perfect and I view every day as a gift from my donor.

Blood count 101 and an Official Diagnosis

2011-08-27T19:47:00.000-07:00

I have became an honoree medical professional and would like to enlighten you with my smartness so you know what the hell I am talking about since most of my posts talk about my blood counts.

WBC- White blood cell. Your blood is made up from both red and white cells. White Blood Cells are cells of the immune system and protect you from infection. Mine have consistently been low which causes my ANC count to be low.

ANC- Absolute Neutrophil Count measures the neutrophils in a white blood cell. A Neutrophil is a subset of your white blood cell and is the most important part. It's the main part of the white blood cell that fight infection. When I get put into my bubble, its specifically because my ANC count is low. When your ANC count is below 1500, it's called neutropenia.

Neutropenic Fever- The cause of my last four hospital stays. When I have little or no nuetrophils in my body and I get a fever they freak out since the risk of an infection killing me is high. IV antibiotics are needed and I am on infection control lock down.

Neupogen- medicine I inject into my stomach to help my bone marrow produce white blood cells. The more white blood cells, the more neutrophil cells are present.

In other news.....

I had my follow up last week with my Hematologist and after running $8,000 worth of tests I have an official diagnosis of what is causing my ANC to be so low.....are you ready..... Drug induced chronic neutropenia! It is what we thought the entire time, I really wish my insurance company would have paid me thousands of dollars for that official title. Basically, the anti-rejection drugs are killing my white blood cells- specifically my ANC cells. Yup, the drugs keeping my liver functioning at perfect levels are screwing my bone marrow up and there is not much they can do about that. They can't take me off of the anti-rejection drugs so the plan is to continue with the neupogen injections and pray that my body will eventually get used to the anti-rejection medicine. It's about a 50% chance of that happening and if it doesn't, I will live the rest of my life shooting myself up with $800 injections of E-Coli bacteria. We also hope that after one year, they can lower my anti-rejection drugs and that may help increase my WBC. Based on my track record, I am not holding out hope that my body will figure it out and have accepted living with track marks on my stomach and being in bubble life when needed.

Based on continued unstable white blood counts and my most recent hospital stay, my return to work date of September 1st has been postponed. This time, I didn't throw a fit and act like a 3 year old, I am accepting that I need to allow my body more time to heal. (I think I should buy myself a present for that accomplishment!) I have an appointment with Dr. Bzowej on Sept. 27th and we will re-evaluate a possible date then. She is confident I will return to work eventually but just not yet.

So that is my update. Overall, I am feeling good and I was able to celebrate my new life with a FUN party... pictures coming soon! Thanks for reading and as always, love to my donor and donor family.

Well that was a FUN weekend! [Insert Sarcasm]

2011-08-17T08:57:00.000-07:00

I can pretty much bet that your weekend was better than mine. My fun filled weekend started out on Thursday when I woke up with a bad sore throat and a temperature of 100.9. I called the on-call Dr and he wanted me to come down to SF for a clinic visit and labs so off to SF we went. My WBC and ANC counts were extremely low from the CMV treatment (Valcyte) and since I had a fever, they sent me home with antibiotics. I thought I would start feeling better with antibiotics in my system but damn, I was wrong. (I have been wrong a lot lately...have you noticed that?) I woke up Friday morning with my throat hurting even worse and a higher fever of 101.7. I called my transplant nurse and she talked to my main Hepatologist, DR. Bzowej who wanted to admit me so off to SF we went again.

After a shit load of tests, we still don't know what I caught but let's just hope I never catch that again. It was the worst pain of my life and hurt worse then the transplant. I couldn't swallow and my right tonsil was swollen it hurt to talk. They were giving me morphine for the pain and that barely even helped. (Bet you can't say you have ever gotten morphine for a sore throat!) They treated me with the "BIG GUN" antibiotics and on Saturday night, my fever finally broke. Since I broke my own personal record of lowest ANC (ANC is part of your WBC) of 33 VS the normal range of 1500-4000 they discharged me on Sunday since the risk of catching other germs was too high.

An Infectious Disease Specialist was called in to review my case and has been added to my list of Dr.'s who will be involved in my recovery. She did make some adjustments to my medicine and took me off the CMV treatment and my ANC counts already jumped from 33 to 2000. They also took me off CellCept- an anti-rejection drug but Dr. Bzowej pulled rank and overrode that decision since she wants to protect my liver. I trust Dr. Bzowej more than any other Dr. so trust that choice. I can handle a sore throat but not ready for another episode of liver failure since I am really enjoying my white eyes!

Thursday will be an eventful day. We head back to SF for 3 appointments- Hematologist, Infectious Disease Specialist and a visit at liver clinic. Hope fully we can find time to head to Blue Bottle Coffee, my newest addiction. I feel good, still recovering from the crazy weekend but my throat no longer hurts and no fever for four days!! The BEST news was my liver tests remained perfect. One Dr. said my liver is probably better than his!

Again, THANK you for the well wishes and support. You truly help keep me going!

Some pictures of my FUN weekend for your enjoyment!

My "BIG GUN" antibiotics

Always a great view

My view. Reminder to always have toes painted...makes the view so much more pleasant!

Family Pictures with Sammy the Model!

2011-08-03T09:20:00.000-07:00

I wanted to share my family pictures that I had taken as a six month Liverversary Present to myself. Can you believe I was hours away from dying in January.... Look at me now!! Looking at these pictures really makes me happy. Although I have had some complications, you would never be able to tell in these pictures. Again, just proof of the gift my donor gave me.

Pictures taken by Shellie Kennedy

The dreaded call.... CMV positive.

2011-07-31T14:19:00.000-07:00

I have some bad news I wanted to share with you.... a test from earlier this week came back positive for CMV. CMV is the virus that 70% of adults have, similar to chickenpox. My liver tests came back higher than normal the last two weeks so they tested me since this virus can attack my liver. Both my donor and myself were positive for the virus which put me at a higher risk for reactivating the virus in my body. They had me on preventive medicine (Valcyte) but took me off since they thought it was a cause for my decreased blood cells and you are most likely only to get it within the first couple of months after transplant. The treatment is heavy doses of Valcycte that will drop my white blood cells even lower for three weeks so I will be in my bubble for around three weeks starting Monday. I will be taking daily shots of neupogen to help my WBC recover but based on my history with Valcyte, they will still be to low to leave the house. They are hopeful one round of medicine will kill the virus but if not, they may need to admit me into the hospital for IV therapy.

Although the news is not what I was hoping, I am glad we have a plan to get rid of it. My Doctor also said there may be a slight chance that it was contributing to my low blood cell counts so we may see improvement in those once I am done with my treatment. They always warmed me that this virus was a possibility so it wasn't too much as a surprise but I wasn't expecting it since I didn't have any symptoms.

The good news is that I was still able to go on a Spa Girls Weekend in Truckee! Jenny, Nicole and myself spent 2 nights at Northstar and spent the weekend pampering ourselves with spa treatments at the Ritz Carlton and eating great food. I don't have any pictures to share since we spent the weekend in our pajamas with no makeup on:)

Thank you ladies for the fun weekend and for being such great friends!

Patience is a virtue.... one that I don't have!!!

2011-07-26T17:47:00.000-07:00

Today was the big day... my appointment with my Hematologist. He was suppose to have the answer as to why my blood counts are not stable. He failed my test and didn't have a magic answer. He did order a crap load of blood tests and scheduled a follow up appointment for August 18th. Basically, he thinks my blood cells will recover as my body gets used to all the anti-rejection drugs and I just need to keep giving myself shots of Neupogen to help boost the bone marrow. He will discuss the need for a bone marrow biopsy during our next visit but he doesn't think that will necessarily tell him anything. Not sure what I was expecting but I was hoping for a quick fix. I am sick of waiting for my body to recover, we gave it a new liver so come on... what else do you want?? I want to get on with my life and stop these damn injections that make my bones hurt and my muscles spasm. My Doctor isn't keen on me returning to work while still on Neupogen injections and returning to work is my last hurdle to validate I will live a normal life. It's like a double edge sword.... I know I need to have patience and let my body recover but it's hard when overall I feel good and want to rejoin the traffic on Sunrise!

I did get some good news during my visit, my ANC count went from 500 yesterday to 1200 today so bubble life was less than 24 hours! Now I can use my Old Navy Groupon that expires on Saturday..... Priorities people!!

PS... Please send prayers to the patients that were in the waiting room of my Hematologist who is also an Oncologist. I was saddened to see some very sick people and hope they kick some Cancer ass. Makes my situation seem easy.