Quantcast

Primary Sclerosing Cholangitis (PSC) - Online Support Group

Received my new liver

I received my new liver on the evening of June 7, 2017.

With a lowish meld, I had colangitis in late March, again in late April along with sepsis, and hospitalized again in early May with abdominal pain. My doc was able to get exception points approved, making my meld score a 22. With a blood type of B +, this put me at the top of the list. I have read that psc patient’s with a blood type of B+ tend to get transplanted earlier, and that was the case with me. In this I know that I was lucky. The increased exception points were due to expire in early August, and had I not received a transplant during that window, back down to a low meld and live with psc would have continued.

At noon on June 6, I received a call at work from Piedmont Hospital that they may have a liver for me. I was down there by 1:00 after making several phone calls to my wife, parents, brother and sister in law.

Was admitted and ended up in a room on the transplant floor by 2:00. This quickly became a game of hurry up and wait; the liver was not even at the hospital yet. So I was kept overnight and by Wednesday morning, I was a bit annoyed, but a nurse pointed out that the good news is that I had not been sent home; that shut me up.

By 3:00 I was in the preop prep area. By 5:30 I was wheeled to surgery-the liver was a go.

I spent about 1 1/2 days in ICU, and walked each day.

By that Friday afternoon, I was up on the Transplant Floor again. Through that following Wednesday when I was discharged. I walked every day. I had to get used to the finger sticks used to track my blood sugar, as our blood sugar tends to be high at first-they worry about diabetes setting in. Luckily, I did not have to track my blood sugar after discharge.

It seemed that I could not sleep much, either before or after discharge as my heart rate was very high, and I otherwise could not get comfortable. This has been ongoing through the date I posted this-July 5, 2017. I can sleep for maybe 1-2 hours when I first go to sleep, followed by several hours of tossing and turning, followed by another 1-2 hours of sleep.

I have had numerous days when I have a late morning nap, early afternoon nap followed by a late afternoon nap.

On the whole, my recovery has been much better than I anticipated, with no complications other than the sleep issue mentioned earlier. In this I know I am very lucky. I have read that the healthier you are pre-transplant, the better the recovery is post-transplant; this is true in my case.

The dietician is not happy with my weight. I have not gained much weight, if anything I have lost some. But I am trying to eat protein-rich food and just do not have much appetite. The appetite should return some time soon; I was told about 4 weeks from transplant.

Sorting out and taking all the medications has been relatively straightforward, again with no complications like nausea or upchucking.

I have been walking each day, and am up to a long walk just under 2 miles, and this will be increased starting tomorrow.

So all in all, I am alive and vertical. Having learned the hard way that any day you’re not in a hospital is a damn good day, I know that many things have gone right for me to get where I am today, and want to give encouragement to those who fight psc, are about to receive a transplant or have recently received one-there is hope.

Jeff

7 Likes

Congratulations Jeff! I received my transplant 11 1/2 years ago and I am grateful every day. I do remember how it took a long time to recover my weight. My coordinator told me not to be concerned because later on it would all come back which it did.

2 Likes

Great news - glad to hear you are doing so well and so soon! Be sure to keep us updated.

1 Like

Very encouraging , thank you for sharing. My biggest fear is when needing a liver, one is not available…

1 Like

Congratulations, Jeff! I’m so happy to hear that you got your new liver! I have SVT which is an abnormal heart rate, it comes and goes every few months since I was a teenager. When I have an episode come on, it will wake me up during the night and I’m not able to sleep well until it subsides. Are they doing anything to treat yours? If mine is prolonged, I have a pill to take, propranolol; and if that doesn’t fix it, I go to the ER for an injection of adenosine, which resets the heart. I’m just thinking that a cardiologist might be helpful with that problem? And any rate, I hope it resolves for you, when your heart works that hard it really wears you out and after all you’ve been through, a normal heart rate would be nice!

1 Like

congratz… , glad to hear my blood type is b+ and hope one day there will be no problen when i will need a liver transplant

1 Like

Jeff,
So glad to hear you are doing well since your transplant. Sorry about your BP problems. I had to go on BP medication post transplant but finally was able to come off it. I hope your transplant team has you seeing a cardiologist about the issue. Regarding weight, believe me once your appetite comes back that Prednisone I assume you are on for prevention of PSC recurrence, will make you want to eat and eat. Hopefully you will be able to control the cravings better than I did. Gained 30 pounds the first year, oh me! It sure is hard to get it off even now. I will be celebrating my 2 year anniversary this month on the 23rd.

Take care and keep in touch. Thanks for all you do for the group.

Mark

Big congrats, Jeff! Sounds like you’re doing very well indeed. I’m also B+, did not know that about PSC patients and B+, had thought it was a disadvantage. Though could vary depending on location.

Congratulations and best of luck with the new liver.

I wish you wholeheartedly a new healthy life. You deserve it and you have to be an optimistic example for all of the Pscers. You are a strong support for all in the forum.

Congratulations Jeff! Enjoy your new life!

Congratulations! That’s very exciting. It sounds like you’re doing very well.

Thank you for sharing your story. It gives us all hope. I’m happy it went well for you

I’m left grinning ear to ear after reading your post! I’m very happy for you and for your family, and thankful to your donor. This made my day, Jeff!

Cheers to a speedy recovery. Big Internet Hug,

Congratulations, Jeff! Wow! This is such great news… AND, I’m glad that you have had a fairly “textbook” time with it. Probably your age and the fact that you weren’t really sick for a loooong period of time has helped. The extra points you were awarded , I’m sure was greatly appreciated and helpful to your ability to get transplanted sooner than later. And, I think you have been pushing your body for exercise, haven’t you?

My husband was transplanted 2 days before you!!! He is still in the hospital, which goes to show you how different each case can be. His MELD had been bumping along at about a 12-13 for a few years and in January, it began to soar. His gastroenterologist said she was going to wait until his MELD was 18 before she would refer him to UWMC for consideration for a transplant. By February his MELD was 15 and it just kept climbing from there. His initial assessment with the UW was on May 2 and by this time his MELD was 18 with worsening ascites and yellowing in his eyes, increased fatigue and HE. They approved him for being a candidate and made a date for his workup to begin on May 31, June 1 and 2, with the required transplant class on June 21. That first meeting on May 2, I had a feeling we weren’t going to make it. On May 11 his MELD was 25. On May 16th he had the diagnostic ERCP to rule out CC. By this time his MELD was 27. 2 days later at his endocrinologist/orthopedic appointment I insisted we look at his MELD again. It was 32. The next morning it became obvious to the team (I already knew it) that we were indeed not going to make it and they advised us to make our way to the emergency room at the transplant hospital. He was admitted and it became a race against time for him to have his work-up completed for the coming selection committee meeting. Within the week he was listed as #1 in the region for A- and remained on the list for 12 days as he worsened and endured dialysis every other day as his kidneys began to fail. His MELD was 42 by this time of his listing. One “no-go” call to the OR was disappointing but gave us some hope it would happen. (The donor liver was too large). He was beginning to show signs of infection (white blood count rising) and we were getting nervous that he wasn’t going to hang in there with that and with the severe the weight loss, weakness and signs of infection. The surgeon said his MELD was actually 60 at the time of transplant, which happened on June 5th. Because he was so ill before transplant and the long 13 hour surgery (His heart stopped early on in the surgery and they changed to a bypass method of surgery to go easy on the heart once they got it started again) recovery has been slow and NOT steady. Post surgery he was in the ICU for a week, developed ICU delirium (very common , I hear) and after a week on the transplant floor . They send him “home” to our rented apartment and after 5 days at home (two of which were spent at the ER due to dehydration and other symptoms), he was readmitted for a “tune up”. (I’m my opinion he was discharged way too early). He was still not eating or drinking at this point and I believe he became very dehydrated without anyone really noticing. In any event, whatever was out of balance,became more out of balance and he was readmitted to the ICU because he had acidosis, respiratory and pulmonary issues, pericarditis, and electrolyte imbalances. He was miserable. A few days in the ICU did the trick and he is finally back on the transplant floor and making great strides. It is the first time I’ve heard him so motivated to take charge of his life in years! So refreshing. I developed a very nasty cold 2 days ago, so I’m actually glad he is in the hospital again for the moment. I think we are getting there and boy oh boy am I ready to go home to our life and our kitties! (A whole other story of how to make it through home and kitty care). Nearly 2 months ago we flew out the door, not knowing where we would wind up…I had a feeling, so I was semi-prepared for going to the hospital, but I had no idea for the biggest rollercoaster ride that was in store for me.

Cheers to you , Jeff and to all of the brave PSC’ers and caregivers and kids of PSC’ers out there. Its a long strange trip, and hopefully, in the end, we can grow stronger because of the experience.

1 Like

Dolphin, I am so glad things are looking better for you and your hubby. You both have had a long rollercoaster ride. I hope the worst is over.

On the following Tuesday morning after tx, I was asked if I thought I was ready to go home. I had to say, “no”, as I was still not ready. So on that Wednesday, I was a lot more confident, and said, “yes” when asked again. I was glad I told them no on that Tuesday; there was a world of difference in that one day.

Kitty therapy is wonderful. My cats love having me back so they can condescend to use me as their pillow. Still, great therapy for me.

I hope your lives get back to normal soon.

Jeff

1 Like

thanks, Jeff.

Hi JeffDC1,
You have just joined a rare club: Liver transplant recipient, formerly with PSC. This is wonderful news. I read you recovery account with interest. My liver transplant is now five and a half years ago, and my liver operates perfectly. I am so thankful!

Your sleeplessness may be caused by Prednisone. It made me an insomniac, which went away when they tapered me completely off of it. I received a living donor organ from my adult daughter’s high school girl friend. The resultant recovery was slower than a cadaver liver transplant because it had to grow to full-size from just a portion of a liver.

Many PSC’ers get very ill, but the MELD score prevents them from getting a liver. You were very fortunate, indeed to get added points. In my region, the doctor who chaired the UNOS regional committee told me I would never get an exception. Those were chilling words. I was in my eleventh year with PSC, had Stage IV liver cirrhosis, hospitalized 8 times with liver failure, swollen with retained water, itching, high levels of ammonia and yet my MELD score was 16. The cadaver liver transplant program was completely failing me. PSC’ers are more likely to face death from their disease because it does not register on the MELD scale which was devised for people who have non-choleostatic liver disease. I try to raise awareness of this problem and get PSC the same treatment as other fatal liver diseases. I hope you will spread the word, as well.

I am so pleased that you, a fellow PSC’er has received a new liver and has survived. God bless, and have a happy, healthy new life.

2 Likes

Hi Dolphin5,

I hope your husband is now on the road for recovery. Reading between the lines of what you wrote, I sense you are a caregiver with immense emotional strength to have faced his disease and the endless struggle it is to survive PSC. Caregivers are the unsung heroes/heroines in each PSC case study. UWMC stands for University of Wisconsin Medical Center, I presume? That is where I was tested and accepted on a second transplant list. The first was in Milwaukee. It was at UW that I was told I would not live long enough to get a cadaver liver and that I had to find a living donor. Shock!! Utter shock set in. . . It seemed impossible this could be happening to me after being on the transplant lists for 3.5 years? But, it was, so we got busy looking for a donor. I had all the same symptoms your husband had, except my MELD never went above 16. My daughter put my story on a Facebook page, and a high school girlfriend she had not seen in 15 years volunteered. She was a perfect match! Surgery took place a month after learning we were compatible. She is fine, happily married with a new baby. I am fine, as well.

You are finally on the road to recovery. My best wishes and prayers are with you.

2 Likes

Thanks , Paul , for recognizing the caregivers part in this long, and sometimes strange journey of PSC and Ltx. I can sometimes feel a little guilty when I’m so worn out from the roller coaster ride and remember at the same time all that my dear husband has been through. It’s challenging.

UWMC is university of Washington medical center in Seattle : a very fine place that I will be pleased to leave and never see again if I can help it. Ready to see my husband well and to move on with living life away from doctors and hospitals. As one of our very wise and recently transplanted
PSC’er says, “Any day out of the hospital is a good day.” I’d have to agree…