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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Post liver transplant - RECOVERY

Hello,
I’d like to share opinions on RECOVERY.

I’m two months post transplant. I’m just now beginning to gain weight again. I was at 220 lbs prior to the surgery, and in decent physical condition. I had no other medical issues to deal with and I’ve lost 50 lbs in the process. I was losing 1.5 - 2 lbs every day, even though I was eating a lot. I found the medicines I’m on to cause a lot of tremors and anxiety. In particular the Prednisone and Pro Graf cause the tremors in my hands.

Can anyone else render opinion on RECOVERY?

Hi - first of all congrats on the new liver. After my transplant it took me 11 months to recover. By the end of the 11th month I went on a month tour in Europe which really helped rehabilitate me physically with all the walking. I had a virus flare up one month post tx and was hospitalized 3 weeks. I would say physically I was pretty worn out after tx. Still a bit yellow and fatigue. It just took time. small steps forward and except for virus steady improvement. I would talk to your docs about the tremors etc. Prednisone affects many people in bizarre ways. Once I hit 30 mg my mind starts wanting to do things I logically know I shouldn't do - like stop at a red light and then proceed even though its still red. I had a hard time coming up with words and I would say the first word that came in mind even tho it sounded funny in the sentence. I spent a lot of time reclining, reading, sitting at Starbucks doing puzzles, just hanging out. Gradually I started riding bicycle at about month 3. would have stitch in side at first but that gradually went away as I got stronger. I always took with me something the transplant coordinator said "you go from being a person who needs a transplant, to someone who has had a transplant". Meaning not everything is going to magically be alright. Yes I felt better physically, mentally and emotionally after transplant and I got discouraged sometimes I wasn't making much progress but it did come. There will be a lot of medication adjustment maybe for a couple years - to be expected. Hope this helps and again congrats. Deb

I am right at the top of the Barnes (St. Louis) transplant list. These types of discussions are very valuable to me. For example, nobody had told me that "dry runs" may happen - meaning you get called in for the transplant but you may be either a back up to someone else or the liver may turn out to be unsatisfactory. Thus, you rush to the hospital (usually in the middle of the night) have all of the tests done, and then once the new liver arrives and is biopsied, it may be too fatty, or too large, or have other problems. I have now had three "dry runs" over the past 6 wk. and am still waiting for the transplant. Very frustrating!

Hello all, I haven’t been online much nor have I been on this site much lately either. The reason being is today represent the 3 month mark of post transplant. I received a liver. I can certainly relate to all of the above. I had lost a major amount of weight and I am now beginning to put it back on and rebuild muscle mass. I will often have a stitch (pain)in my side or back pain. Mostly because my mind and body are not on the same page. Some days I am itching to do more than I can physically, really do. Since I have been given a second chance at life( besides the fact that never in my wildest dreams could I ever imagine feeling this great)this gave my hubby back his wife, my boys their mother and grandchildren their grandmother the decision is made to relocate closer to all of them. My meds are being adjusted and readjusted weekly, I still have to relax, have naps and treat my body with respect. As for tremors I experience them daily and one of my hobbies is designing my own nails with nail art. This has presented some challenges but I do find it helpful. I have been told that a year is the usual time for full recovery. If I feel this great at 3 months, I may be as speedy as the ROAD RUNNER after a year! LOL plz keep sharing your stories as I also find them very helpful. I wish you all a very positive and speedy recovery. Enjoy life!

I wanted to tell EAD3 to think about the dry runs as its not the right liver and that you are getting exactly what you need - the perfect liver for you. It makes the dry runs easier. I had 2 myself. but I was also told that I could wake up from anesthesia not having a transplant. Once they get inside something may not be right. It is frustrating and consumes a lot of mental time but just keep thinking the timing will be perfect for all involved - donor, you, transplant center staff.

I agree Claire it is nice and fun to hear people's post transplant experiences. I too was amazed during my 2 weeks after surgery in hospital the difference. I didn't have this pale drawn face. soon I was getting the rosy cheeks I always saw in transplanted people versus waiting for tx.

I felt like a large weight had been lifted from my shoulders to be free of disease. And it was the most bitter moment when I was rediagnosed with PSC. the thought of going through all this again. sigh. An experience I hope I don't share with any of you.

I think the most important thing is to be flexible with your new liver as it gets settled in your body. You could go 8 years and then have a rejection. You are now a person with a transplant that can still have problems related to transplant.

congrats on your new liver Claire! Deb

Thank you . Deb

Thanks, Great Dane for that perspective on my situation! It has been quite a roller coaster ride. Hope it ends soon with the right liver.

EAD3

greatdane61 said:

I wanted to tell EAD3 to think about the dry runs as its not the right liver and that you are getting exactly what you need - the perfect liver for you. It makes the dry runs easier. I had 2 myself. but I was also told that I could wake up from anesthesia not having a transplant. Once they get inside something may not be right. It is frustrating and consumes a lot of mental time but just keep thinking the timing will be perfect for all involved - donor, you, transplant center staff.

I agree Claire it is nice and fun to hear people's post transplant experiences. I too was amazed during my 2 weeks after surgery in hospital the difference. I didn't have this pale drawn face. soon I was getting the rosy cheeks I always saw in transplanted people versus waiting for tx.

I felt like a large weight had been lifted from my shoulders to be free of disease. And it was the most bitter moment when I was rediagnosed with PSC. the thought of going through all this again. sigh. An experience I hope I don't share with any of you.

I think the most important thing is to be flexible with your new liver as it gets settled in your body. You could go 8 years and then have a rejection. You are now a person with a transplant that can still have problems related to transplant.

Congratulations, I'm so happy for you...I had tremors for a few months until they lowered Prednisone to 5mg and Prograf...However, unfortunately, I was weaned off too much of the anti rejction meds and was recently diagnosed with reoccurence PSC (Primary sclerosing Cholangitus) Anyway, I don't what your circumstances are but if it has to do with autoimmune diseases of the liver, please be sure to ask the Dr. should they try to reduce too much of the meds....(FYI) anyway I hope you are feelilng pretty normal soon and can start enjoying your life again....

Many congrats on the new liver! I consider mine such a gift as for the first time since 9 years old I felt well. The Drs at the beginning changed my immuno-suppressants(prograf and Cellcept) a little but in 7 years there has been no other changes and until very recently no hospital admissions. The PSC is now returning but at a very early stage. Try to take every day as a bonus, there will be days where you will have less energy etc At the beginning too my hands would shake all but this went away once I was stronger, very occassionally I may notice a slight shake.... I came off prednisone a few months after transplant. I lost a huge amount of weight and took a long time to regain it but give yourself time, your body has been through a HUGE operation.

I also remember the anxiety I had. For me I now know it was the fact I worried constantly about rejection, although I thought I was ok, this is normal I think. If it is very bad I would mention to your care team, perhaps you have enough on your plate without anxiety. I found the post op check ups great as any issues you have can be discussed and finding out my bloods were ok or to find out I was doing well from the team would give me such a boost and I would relax a bit more. I hope you recover really quick and I wish you the best of luck!

Boris, Claire, EAD3, Catherine, and Greatdane61,



Thank you so much for replying. You’ve all lifted my spirits with your positive attitudes. I do count my blessings and I’m thankful to GOD for giving me a second chance at life. I’d almost died prior to receiving my new liver when my Portal Artery burst.



Does anyone know what the reoccurrence rate of PSC for those who have received a liver transplant (Tx) is?



What does the blood work look like when a liver is being rejected -VS- when PSC is reoccurring?



At this time my ALT/AST are in the low 30’s and bilirubin is at 1.2. I assume these are the key markers for both rejection and PSC.



Mike in KY (aka … MEM)

Ooops … Sorry … I’d ALMOST died prior to the Tx. Spell checker gone wild!

Hi Again,

It sounds like you have been through a lot and it is quite scary for a while after a transplant but you will become more relaxed as time goes on. I remember thinking I will never be able to do this or that and 7 years on I obviously still am aware of my transplant but don't let it rule my life.

I wouldn't get too hung up on numbers regarding your blood work....as far as I remember the medical team keeps this in check and will alter your meds or do a est eg ultrasound if required. I just ask is it ok and if I get a 'yes' I go on home !!! But I think under 50 is good and if a little above they will do perhaps repeat bloods which may very well turn out to be fine on the repeat... I am no expert on this but recently mine were higher than 50 (150), my DR said this was 'slightly raised' and I had a mri and it did show the PSC was at the very beginning stages of returning. BUT they have started me on tabs which they hope will slow the PSC down and also they said when it does return it is never as bad as the first time so I am thinking positive.as I urge you to. My DR said perhaps a third of people may have a re-occurance of PSC.

Regarding rejection, I remember my transplant co-ordinator saying there is so much they can do now to try to stop the organ rejecting and by keeping an eye on your bloods and general health, attending all outpatient apps then any probs will be dealt with asap.

I really must state though again I am SEVEN years on from transplant and No hospital admissions inbetween so eat well, try not to worry, keep as positive as you can... (sorry I am not sure of blood figures for bilirubin!)

Take care Mike!
MEM said:

Ooops ... Sorry ... I'd ALMOST died prior to the Tx. Spell checker gone wild!

Hi again Claire and other PSC peers, I so appreciate all of you.

Claire like boris said do NOT get hung up on numbers. Relax and enjoy your new life and new health. Surely you must feel some measure of improvement from where you were before. Find that and keep ahold of it. Your numbers will fluctuate and medication changes will happen to many transplantees. TRUST your team, leave it in their hands. Be smart and mention things but let them worry about numbers, possible rejections etc.

2 years after transplant I started having rejections. At the time my alk phos would run up to between 200 and 300, and bili between 2 and 3. The transplant team jumps on it because you are recently transplanted. And they'll pay attention if you are 7 years out and start showing. That is why regular blood work is good to have. A 72 yo friend who has never had problems with her transplant of 12 years was allowed to blood work every 3 months after 10 years. The Univ of colo is pretty particular and follow their patients for life, I've heard some centers do not. I think it is just good health care to have regular checks, flu shots, precautions when traveling, etc. I digress.

Ok so 2 years after transplant I had 8 rejections in one year. The team did sooooo many immunosupp adjustments which was starting to anger me. Finally they hospitalized me and knocked out immune system with similar drugs they use immediate post tx. Two week hospitalization. Have never worked since but I attribute much of that to adrenal insufficiency - which steroids affect and I've just had a heavy year of steroids. Then finally after the start of more ercp's and biopsies was told psc had returned. It was a bumpy transition. There is a fine line between the diagnosis which can only be measured with biopsy.

I was pretty angry and bitter. I felt transplant team had let me down. The head hepatologist met w/ me. I wanted to know stats and whether I'd be able to transplant again. Told that U of Colo's rate of return in transplanted PSC patients was 25% and they believed number would go up the longer people had transplant. was told that PSC may not respond at all like first time. It could be faster or slower. Mine has been faster. As liver gets worse since rediag in 2008 have had many more challenges than first time - age? health? adrenal's? pancreatitis, rejections, abdominal hernia, another round of cancer, etc.

STats I've looked at online (scholarly articles) are positive for 2nd transplant for PSC patients - no return. Not as good for those who have had cholangiocarcinoma - which I have had 2x.

Now as far as numbers Claire - I've been recently hospitalized w/ 7 bilirubin, 700 alk phos. So as you can see enormous range of numbers. For newbies you definitely would not want to see this. For me 5 years into 2 medical issues - being immunosuppressed and having PSC make things more complicated.

Look forward Claire - don't look for the problems. You will come along and all of a sudden one day you will say "I feel normal again" Truly!

Sorry so lengthy. Cheers to all! Deb

Being, hopefully, on the verge of a transplant, I'm wondering what adaptations I should make to my home to be ready when I come home. Would any of the following be useful?

shower bench

trapeze to help get out of bed

walker

handles near the john to help get up.

Thanks,

EAD3

Hi EAD3 - this is what I do now to prepare for abdominal surgery - elevate head of bed, often can't lay flat; prepare for light and easy diet either with premade food and frozen or bottles of say applesauce, soup, whatever you like when you're not feeling like steak dinner, walker and/or cane - I weaned off cane for 4 weeks, if toilet is low and depending on how tall you are a toilet seat riser, I put a large flat tray on bed beside me to hold items I want close by - beverages, chapstick, etc; get straws, have your phone tree ready for day you are called - I had prearranged cat sitter, etc., depending on condition - chair in tub; make sure things you are most likely to use say in kitchen and bathroom are at counterheight because you can't do heavy lifting and bending is hard. I make a friend has keys to my place. I make sure my 'will' and 'other information' is up to date i.e. bank account numbers, passwords on computer sites, date bills need to be paid are in the hands of my medical guardian. Make sure you have a living will, durable power of attorney, etc done and notarized. take a copy with you. Well that's about all I can think of. Good question EAD3. Cheers! Deb

Hi EAD3 and Deb, I agree with all the above in preparation. The items that helped me a great deal was toilet seat riser, shower chair, walker and cane. These discussions are so very helpful to me in that I don’t feel so alone and it is great information. EAD3 and Deb I will keep you both in my prayers. Keep positive.

Thanks, so much, Deb! That is very helpful!

EAD3

greatdane61 said:

Hi EAD3 - this is what I do now to prepare for abdominal surgery - elevate head of bed, often can't lay flat; prepare for light and easy diet either with premade food and frozen or bottles of say applesauce, soup, whatever you like when you're not feeling like steak dinner, walker and/or cane - I weaned off cane for 4 weeks, if toilet is low and depending on how tall you are a toilet seat riser, I put a large flat tray on bed beside me to hold items I want close by - beverages, chapstick, etc; get straws, have your phone tree ready for day you are called - I had prearranged cat sitter, etc., depending on condition - chair in tub; make sure things you are most likely to use say in kitchen and bathroom are at counterheight because you can't do heavy lifting and bending is hard. I make a friend has keys to my place. I make sure my 'will' and 'other information' is up to date i.e. bank account numbers, passwords on computer sites, date bills need to be paid are in the hands of my medical guardian. Make sure you have a living will, durable power of attorney, etc done and notarized. take a copy with you. Well that's about all I can think of. Good question EAD3. Cheers! Deb

From what I have read, the average pecrentage is around 35%...I had no clue that it PSC returned until Feb, 2013 when it started itching again, but shortly after they took me completely off cellcept in April, 2011, I started feeling extremely fatigued, lethargic and drowsi...So all along I thought the prograf was to blame, not realizing the PSC disease had returned...My labs did not reflect any rejection or reoccurence until this year when the alkaline phos levels started to go up and thats about the time i started to get the PSC itch...Miracuously my fatigue went away even with the increase in antirejection meds....My meds at that time were down to 1.5 mg's of prograf and 5mgs of pred..In June they increased my anti rejections and added in cellcept and it has helped some but still having some pretty bad sessions of itching. Right now I'm begging the Dr's to let me try vicomycin antibiotic....Seems to have helped others but they are so afraid that my body will become resistant to using antibiotics for super bug...Don't mean to scare you but just wanted to give you an fyi for future...Trust your liver clinic and dr's but be sure to ask questions if something doesn't seem right...Good luck on enjoying your new life

Boris, Claire, EAD3, Catherine, and Greatdane61,

Thank you so much for replying. You've all lifted my spirits with your positive attitudes. I do count my blessings and I'm thankful to GOD for giving me a second chance at life. I'd almost died prior to receiving my new liver when my Portal Artery burst.

Does anyone know what the reoccurrence rate of PSC for those who have received a liver transplant (Tx) is?

What does the blood work look like when a liver is being rejected -VS- when PSC is reoccurring?

At this time my ALT/AST are in the low 30's and bilirubin is at 1.2. I assume these are the key markers for both rejection and PSC.

Mike in KY (aka .. MEM)

Prednisone caused me the most mischief. Any dose more than 10mg and I had tremors in my hands, vision changes, increased appetite, insomnia, mood swings and forgetfulness. Magnesium Oxide is a powerful laxative. It's a mineral your liver needs after transplant, but they take you off of that after a few months.

Prograf has only slight side effects on me. I think the 9 p.m. dose wakes me up, so I find it a little difficult to fall asleep. At 1 1/2 years post transplant, I am down to 3mg a day and the doctor says he is likely to reduce me to 2mg/day next month.

I was very weak for four months, and then I started feeling a lot better. They took me off of all meds except Plavix, Prograf, baby aspirin, calcium, Nexium and an iron pill. I was on 23 meds daily before transplantation.

At five months, my insides started to feel back to normal. I had felt like things were empty in my abdomen, but after that, things began to feel normal again. I developed immune induced bursitis in both my shoulders and left hip. This painful condition ran its course in 3 months. Don't worry. It's not likely you will get it. I have Common Variable Immuno Deficiency, which accounts for why my immune system does crazy things.

I didn't feel completely healed until 12 months. Life became normalized. My best advice is to do the preparations the others have said in response to your question and above all, follow your doctor's orders. You can learn to live with and adapt to any temporary change that occurs as a result of your transplant.

Your experience is very valuable to all of us who participate in this blog, so keep writing your questions. I hope our advice helps you.