Transplant

General
1

Hello…I am new to this support group and I have some questions for anyone who is awaiting a liver transplant due to the severity of their PSC. I am 27 yrs old was being treated for Autoimmune hepatitis for 6 yrs and then finally was properly diagnosed with PSC in 2009. I also have UC. I am now on two different transplant lists and am waiting for “the call” for a new liver. I have been on the list for a little over a year now and in that year my PSC has been getting worse fast. I have been hospitalized six times in 2011 with liver infections. I was wondering if anyone on here is going through a similar situation or have had a successful liver transplant? If there is, how long did you have to wait for a liver? What sort of symptoms/side effects did you experience prior to it? How did you cope with the process? Can someone give me some insight?

Thanks!
Marie84

2

Hi Marie,

Rest easy... I think this group can provide you some answers and ease your mind a bit. I finally received my transplant three weeks ago at Baylor Medical in Dallas, and I'm here to tell you, things do get better! I'm not very old, but you're younger than I, so your success after transplant should be really good.

I waited for about two and a half years after being listed... granted my MELD at the time of listing was about 22, then it went back down to 17 for awhile, and finally up to 36. Most people get transplanted around 22-28, so I doubt you'll get to that point, but if you do, know that you can make it! A positive attitude and good humor can keep you alive even when the other parts aren't working so well anymore.

My symptoms gradually increased over time... I've had three life-threatening Esophageal and stomach bleeds before other symptoms presented. Then, Bilirubin increased and yellowing of the eyes and skin occurred. This was pretty strange to get used to, but it seemed to recede after some changes in diet. After a TIPS procedure in 2009, the swelling/ascites really increased; first in my feet and lower legs, then up to my belly. This often made it hard to walk, fit into shoes and pants, and eventually made me fatigued and short of breath due to the increased fluid pressure on my heart and lungs. My final weight pre-tranplant was 236, but a few weeks after, I'm back to 205, which is where I need to be at 6' 4". Other than that, my symptoms mainly included an overall lack of energy, focus at work, and insomnia at night. I was never diagnosed with UC, although symptoms did present during the last month.

The big question: How did I cope? This is the tough one, and the most important. Everyone is different. Personally, I chose to open my arms to it, embrace it, and laugh my ass off at it. To be real with myself and not hide from the pain or tears, all the while keeping a positive outlook on the whole thing. I found new strength and insight in my personal spirituality, and learned to surrender my darkness to a higher power when I no longer could handle it. After spending a few years building a successful career and community life, I found a real comfort in taking my hands off the wheel and letting God (or whatever you choose to call it) take over the everyday details for awhile.

Talk about it... your friends are there for you and probably feel like they want to help more, but don't know how. The best thing they can do for you is listen. And when the time comes, they will miraculously step up to the plate. Then, all you'll need to focus on is your health.

Finally, I found that I could put some perspective on this, and give back to others, by writing about it. If you'd like, check it out at www.patsnewliver.blogspot.com. I've got about four years worth of information there, so I hope you can find some comfort and insight there.

Good luck! Know that there is hope, and keep fighting!

-Pat

3

Hey Pat!

I am so glad you responded to my discussion! It made me feel a lot better about my situation. My MELD score right now is a 24. I’m experiencing the side effects that you talked about. For me, I am having a hard time coping with my jaundice. It is very noticeable and it has effected my self esteem. I hate looking in mirrors and getting my pic taken. And I absolutely dislike when ppl stare at me in public. How bad was your jaundice? Is there anything I can do to help eliminate some of it?I alspo was wondering if you ever got really bad anxiety from the psc? I find myself getting upset easily and I usually am not like that. Lastly, I was wondering if you experienced upper abdominal pain with your psc? If so, how did you cope with that? I experience bad stomach pains and it sucks when I get told by physicians that tylenol is bad to take and so is IB proferen and other pain meds because they hurt your liver. I am so happy you were able to get a transplant. That gives me hope :slight_smile: After I receive one, I can start a new beginning in my life as well.



Take care,

Marie84

4

Marie,

The jaundice is a tough one to handle... mine was really severe for quite awhile, and I did feel very self-conscious about it. Oddly enough, I'm finding that most PSC patients are insanely attractive people to begin with, so this does help counterbalance the effects. :) I always did hate photos, however... when I look back at pics from a few years back on FB, I can barely recognize myself. Eyes, face, the whole works... A recent visitor posted a new one of me just today and my friends all commented on how they can barely recognize a "pink Pat.". So, it does get much better, literally hours after transplant!

Unfortunately, there's really no way to get rid of the jaundice. It's all bilirubin buildup, as you know. You may try talking to a qualified, registered Chinese herbologist or acupuncturist. I found when all else failed, a combination of both of these things really did help with both symptoms and anxiety. I really did notice a big difference using an acupuncturist + herbs, and my MELD went down for awhile. A temporary fix, but worth it nevertheless. You really have to find quality herbs that come from a registered manufacturing plant, simply for quality and consistency's sake. This is why you can't just go to any quack. Look one up in your area and ask questions, if you're open to this. Also, down here in Austin we have community acupuncture clinics, so the cost per session is usually only $20. Most good acupuncturists can prescribe herbs as well. If you don't have a prescription to pick up herbs, then you may be talking to an unqualified individual. Anyway, copious amounts of water seemed to help a teeny bit too, as far as cleansing bilirubin and whitening the eyeballs. Not often, but worth a try. Flush that system!

Anxiety... that's a big one. I could go on about this for hours. Yes, I had tons of it. And it seemed to be reflected somehow in the world around me. Your body goes to hell, your world around you and situations apparently beyond your control go to hell. Very metaphysical stuff, but it's real. You stay up all night worrying about every little thing that may or may not happen. The thing is, your whole body and its balance in the universe is out of whack. Not to sound too heady here, but this was my experience, and this is where you really have to start to put some positive work in on your soul. It's inevitable that anxiety will always be lurking around the corner, but you CAN learn to breathe and just focus on the NOW. It's not escapism at all. Rather, it's finding yourself fully in the present moment and realizing your stillness and strength in that instant. You can't hide from it, so why not face it head on? Laugh in the face of fear! No drug or temporary fix can do this for you; At this point, you're getting into something much grander and bigger than any of that, and ultimately this can save you and stay with you in starting your new life as well. I'd be happy to talk with you more about this subject, or just listen. Words ultimately cannot substitute for just living it, and I sense you must be going through much of this as we speak.

As far as upper abdominal pain, I did often feel burning, itchiness, and pressure at the actual site of my liver. Never any real cramping or hard, sharp pain. And, of course, a lot of acid reflux, indigestion, loss of appetite, etc. But, each case is very different, and it doesn't mean your chances are any worse or greater if you're having the symptoms you're describing. Again, I did find again that deep breathing exercises and acupuncture worked for me in helping many symptoms. Any good acupuncturist will ask you for a comprehensive list of symptoms and will treat for each one... some will work, some won't. And treatments do take time to work. Usually you won't see results until after three or so weeks (about 3-6 sessions).

At any rate, with a MELD of 24, I don't think you'll be waiting much longer to get your transplant. I got my first call about a month and a half ago, when I was at 24. I was ineligible for this one because my white blood cell count was too high. So make sure that when they take labs they're watching this. If you're too sick, you'll miss your slot until they can get your white cells back down. Just hang on! In the blink of an eye, you'll be where I am now... on the other side of it, getting stronger each day. Trust and have faith in that, and it will be yours!

Ask me anything you need; I'm available and it's time now for me to give back after receiving such a miracle.

Best,

Pat


marie84 said:

Hey Pat!
I am so glad you responded to my discussion! It made me feel a lot better about my situation. My MELD score right now is a 24. I'm experiencing the side effects that you talked about. For me, I am having a hard time coping with my jaundice. It is very noticeable and it has effected my self esteem. I hate looking in mirrors and getting my pic taken. And I absolutely dislike when ppl stare at me in public. How bad was your jaundice? Is there anything I can do to help eliminate some of it?I alspo was wondering if you ever got really bad anxiety from the psc? I find myself getting upset easily and I usually am not like that. Lastly, I was wondering if you experienced upper abdominal pain with your psc? If so, how did you cope with that? I experience bad stomach pains and it sucks when I get told by physicians that tylenol is bad to take and so is IB proferen and other pain meds because they hurt your liver. I am so happy you were able to get a transplant. That gives me hope :) After I receive one, I can start a new beginning in my life as well.

Take care,
Marie84
1 Like
5

Hey Pat! I haven’t been on here for a while. I want to tell you that I finally received my transplant on May 16th! I am home now, back in Green Bay, WI recovering and thanking God for answering my prayers. You were right in that it is a miracle and there is hope and life after a transplant. So far I am doing well. I had some minor complications after surgery such as lots of ascites fluid in my stomach and I am still fluctuating dosages of the prograf. My body hasn’t taken too well to the prograf so when they try to increase the dosage my kidney numbers elevate. I still have fluid retention in my belly which is aggravating and painful but I just have to deal with it. My incision is still healing but overall my numbers are okay. I love that I’m not jaundice anymore! How are you doing? Are you able to work now? Did u ever have the fluid in your stomach afterwards? Please write back. I would love to hear from you! :slight_smile:

-Marie