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  • Greetings!

    I was not sure how or where to post my story, but since UCSF is my transplant center, here seems to be a good way to start.

    AND ONE MORE MIRACLE

                On December 5, 2016, I will hit 20 years post pancreas-kidney transplant from UCSF. In celebration of this great landmark in my life, I am sharing that story here. To all those who are waiting for a transplant, I wish you patience and fortitude. For all those who have gone through a transplant procedure, I hope you continue on with your new “enhanced” life.

                After being an insulin-dependent diabetic for 31 years, I had kidney failure and was started on dialysis. At that time in America, the waiting time for an organ was calculated at approximately 2 years. Not so anymore. I was called by my transplant team at UCSF early on that Friday morning as we were getting ready to go to dialysis at my dialysis center in San Jose. Grabbed my bag that had been refreshed with supplies every month in anticipation, we started the trip to San Francisco.

                We arrived at UCSF and following protocol, I was admitted to the transplant floor. The organs were being procured and en route. I had my transplants done that day. I understand the process is quite different now, but this was 20 years ago. I woke up with tubes going in and out everywhere. It did not scare me. It was just a bit uncomfortable. If anyone has ever had an endotracheal tube, you know exactly what I mean. I would have paid anything to anyone to have it out! I was in a haze of “better living by chemistry” and in that blurred state knowing something momentous had occurred. I was very happy to have woken up.

    I was out of the ICU in 2 days. I was up and walking and pushing my IV stand around the transplant floor on day 4. Labs were very encouraging showing good levels in all chemistries. The endotracheal tube was finally pulled on day 5, and I was started on clear liquids and quickly advanced to a glorious regular diet with no restrictions of “no sugar,” no “low sodium,” just a plain regular diet with dessert included. Such a truly amazing happening to one who has been on restrictions for what seems most of life!

    There is always a beginning, but the outcomes are different for each of us. I have included my beginning and not quite the end. My transplant gave me a chance to live somewhat unrestricted. However, there were many, many occurrences in between and after. I have had a life of miracles, and I feel truly blessed by being a recipient.

    Pre-transplant I spoke with a few people who had the same operation. I asked, “What made you decide to do it?” The best response I heard was, “What? Are you kidding? Not to have to take insulin anymore? No blood sticks to check? No dialysis? You’ve got to be kidding?” It is an oortunity not offered to everyone. There are no guarantees, but there never are. I made that decision and went with it. Simply, this is just my modus operandi (MO): decide and go with it.

    No one person has all the answers but having found this site helps to share experiences post tx. Please feel free to comment and share your thoughts. My thoughts and experiences are not unique. In general, it’s amazing how very similar (gratitude) yet different (organs) we all are.  Live long, healthy, and prosper : )

  • It is good to see you on this website again.I am about to start your drug Sofosubir taken with Riba and interferon.Maybe this one will work. It is only 12 weeks.Hi AJ.

  • I am content to have a new lease on life after fighting HCC for 29 months. No need for fireworks or going crazy. Having gotten a transplant is incomprehensible logically as I had failed all standard HCC treatments and because of the location of the tumor had made my HCC essentially untreatable. I was told by my hepatologist in October I didn't have much longer to live if I didn't get a transplant very soon. Luckily my hepatologist choose me to be her first patient to ever try Cyberknife radiation treatment for HCC which brought my AFP down from 1,240 to 377 (under the 500 limit) which allowed to be back on the transplant waiting list.

    I received my transplant at UCSF on Saturday November 16th evening. My donor was a 36 year old woman who died a cardiac death. After being off the waiting-list most of 2013 because of my untreatable liver cancer (failed 5 HCC treatments) the Cyberknife radiation treatment, which was experimental, finally got my AFP tumor marker below the 500 criteria (377) for eligibility for transplant. When I got back on the waiting-list I had the highest MELD score at UCSF with type O blood, 36. I waited a week and a half before receiving a call from surgeon Dr. Chris Freise Saturday morning (6:30 am) saying a liver may be available for me and that he would update me throughout the day as things developed. Later in the early afternoon he told me that I should plan on coming in at about 5 pm for the surgery. My friend Jim, who received his transplant almost exactly 4 years earlier drove me to the hospital and waited for me to go into the OR. It all happened so fast I didn't even have time to get nervous. The surgery lasted about 6 hours. I was later told that the donor's liver was one of the healthiest my surgeon had ever seen and that as some as the blood flow to my new liver was started the perfusion looked wonder.

    Dr. Roberts said I could go home on Wednesday but my sister needed to purchase my post transplant meds and learn how to test my blood sugar and give me insulin injections so we stayed until Thursday.

    By Saturday I was walking without a walker.

    On Sunday I developed severe pain at my belly button. Since I had my first lab on Monday I called and setup and appointment to have it looked at. When the doctor looked at the area he said I need to have surgery as soon as could be arranged. The pain was caused by having a hernia that was a complication of my cirrhosis that was now strangling bowel tissue and collateral veins due to the changed volume of my abdomen after my transplant. I had surgery Tuesday afternoon with Dr. Asher and her team. The damaged parts of the hernia were surgically removed. The remaining healthy tissue was then pushed back into my abdomen and the abdominal wall was then sutured together in three layers and a new belly button was created by one of the young surgeons.

    Since I have made very quick progress in my recovery I have had the good fortune of reducing my immunosuppressants (Prednisone 5 mg and Prograf 10 mg per day 2 weeks post transplant).

    I am learning to walk further each day and some of the abdomen pain is getting better as well. I will have my first clinic appointment tomorrow and hope that things continue to improve as time goes on so I will soon be more independent and be able to care for myself. That will allow my sister to return to her family and work in Connecticut.

    Very grateful to have a second chance at life.

    Howie

  • I just got word that Howie finally recieved his transplant in Conneticut and the word is he is doing well. He is at his sisters and she is watching over him as he recovers. This is great news and if you see this message Howie, way to go! I am so glad you can finally begin the proccess of healing. When you are feeling up to it, drop us a line. Happy Thanksgiving to all.

  • A.J.

    sfdaprez@aol.com

    Howie

  • Hey, we are all still alive even though the odds were against us!!!!Any extra time is a treat.Keep us posted.

  • Sofosbuvir sounds like the miracle we have all been waiting for. Thanks to guinea pigs like Howie, millions will get treatment without having to go through the crappy sides from interferon. These definitely are the days of miracles and wonder when it comes to medicine. I wish I could say the same for the rest of the world.

    Glad to hear you finished with the Telaprevir Laurel. It sounds like it didn't treat you too good. I'm feeling really lucky in that I've had no problem yet. I hope you hit undetectable with the remainder of treatment.

    Howie, I'm sending you some good thoughts and virtual Hawaiian sunshine to add to the huge amount of goodwill from so many others out there. The waiting game is so hard. Let's hope it's almost over. I wanted to ask you a favor. Can you get me Jim Banta's email. He and I were there at UCSF at the same time, almost four years ago and I'd like to see how he's doing.

    Thanks, AJ

  • I have had two Ethanol cancer treatments since the end of June. First one dropped my AFP from 1,892 to 580. Not low enough to be active again, but close. So I had another Ethanol treatment in the beginning of August. No results as yet. I may find out next week. Nerve racking.

    I ended my 48 weeks of all oral hep C treatment about 2 weeks ago. I will have my viral load tested at monthly intervals. There is no data to tell if I will relapse or not as we were the first 50 cirrhotics to ever take Sofosbuvir and Ribavirin. Most have had transplants by now so they never treated for so long. 

    So in the next week or two I will either be near the top of the waiting list with type O blood or having another cancer treatment to try to reduce my AFP. In September my MELD score will be 35. Surely high enough to get a transplant even at UCSF!

    Whatever happens I will keep fighting even though I am really beat up after 26 months of liver cancer and 6 treatments. My liver is still well enough to handle these treatments luckily but I am getting so ill it is difficult to eat any more because it makes me ill. I am hoping this this last treatment may be the break I need to get moving again and get out of this limbo of being ineligible for transplant for 6 months.

    Thanks for asking A.J. All the best to you with your treatment!

    Howie

  • Hi AJ.  I just finished the Incivik. I am still detectable <43 so I can't say it was a booming success. My liver numbers are now normal ( yeah!!! I have stage 3 grade 3 ) so that is great news.I still have a few months of the rest of the treatment.I got three transfusions and the runs. The runs are gone now. Just fatigue. My brain is wide awake. I can walk but my legs feel like lead on hills and stairs.I still do the Procrit too.I am happy you are undetectable. We have waited years for this. Happy Happy Day!!! Wow, it sounds like it is going to be a fun wedding.

    I think Howie got his second treatment.

  • Hi Laurel and Howie. I just wondered how you were both doing? Laurel, you must be close to the end of the Incivek part of treatment by now. I have been on INT/RIBA since February but just finished my first 4 weeks of Incivek. Things are going well and I finally hit undetectable. So far, no problems other than a little fatigue and anemia. Nothing a little Procrit a week can't take care of. I'm amazed that the Interferon and Ribavirin aren't wreaking havoc this time, because both times I tried treatment back in 2004 and 2005, I got so sick, they had to pull me off after 12 weeks. This time, almost zero side effects.

    Howie, how did the new alcohol ablation treatment go? Has your AFP number dropped enough to get back on the active list? Like everyone else, I am really hoping that it does.

    Things are alright here. Maui is a good place to live and for the most part, life is easy. We are starting to gear up for my daughters wedding in a few months. She lives in Scotland but she and her fiance have decided to have the wedding here at our house on Maui. He is Irish so all of his family as well as many of their friends from Edinburgh will be coming. It should be a big party and an interesting mix of people from all over. Without the miracle of a new liver, I would not be here to give my daughter away. Talk about gratitude.....

    Take care and Aloha, AJ

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UCSF 9th Floor Transplant Alumni

For anyone who was transplanted or are waiting for a transplant at UCSF (University of San Francisco Transplant Center) or any other west coast transplant centers.

Thank you, AJ

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