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Rod, I will try to answer some of your questions in the
Rod,
I will try to answer some of your questions in the order you presented them. I think I can honestly say that I understand all of the concerns that you are dealing with.
For @ 8 yrs. I was symptom free (except elevated liver function) Then my GI was concerned when numbers climbed steadily for about 6 months. About this time I began experiencing itch and nausea. Sept.0 8 he referred me to trxp clinic. I was jaundiced, now. My MELD was 15 at that point. I was placed on list in Nov 08. At Christmas I was real sick with the symptoms of end stage liver disease. My Creatine and bilirubin were jumping all over the place and that affected MELD (24). In Jan 09, I was extremely ill (for lack of a better word) At this point . My liver deterioration seemed to make a drop, then level off, then fall some more, level off, etc. ..so it was in a series of downward steps. My MELD score changed as they took steps to ease some of the inflamation or whatever was going on at the time.
How long was I on the list. (Nov. 08-mid Jan 09 )..I actually had to be inactivated when cancer was suspected. My trxp team referred me to Mayo. Then, I was listed at Mayo in mid March 09 for combined liver/kidney. I recieved my organs on Apr. 22, 09. My MELD was 34. The docs were never able to give me an estimated wait time, because they just do not know. But they were always positive when they assured me that it would happen for me. And that is where I drew my strength.
I do not know if there is a way to know how fast or slow the liver deteriorates...but the one thing that they kept telling me is to do all I could to stay as healthy as I could. To eat healthy, and to get some activity...that would help in the recovery.
You are in good hands at Mayo!...They know what they are doing, and if they don't know -they investigate until they find out.
Let me know if I can be of any further assistance. Take care of yourself.
Rosemary @lnerrr
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Rosemary thx so much for your comments. I feel better each time i get a little more information. I feel I am already blessed being in year 15 after diagnosis before the new flare up occurred. From your knowledge is my period of 15 years already pushing the envelope before setbacks occur? When you experienced fatigue, how compromising was it? Were you working outside of the home? Did you ever experience ongoing daily abdomen discomfort(not necessarily pain, but needing alma-selser)? Were you ever on any other transplant list other than Mayo? I have a regionally known center in Okl. City that does transplants. But I trust and like mayo so much. My liver scores(alk. phos) have been in the 300+to 500+ range and bilirubin in the 1.6 to 3+ range. Itching is not back yet, I had some jaundice early in year but it is gone now. How serious were your numbers during the sick period of Sept 08 to mid 09? It seems with deterioration that one's condition can change further in steps but fairly quickly progressively. My Mayo doc calls me "intermediate" right now as to staging. I get evaled in October for the meld score and list.
I look forward to sharing. Thx. Rod
Rod, I am glad to be of some help. I know that this period of 'unknowing' is difficult. I do not know about the time frame, but from what I have read PSC has a mind of its own.
As far as my fatigue, for me it became overwhelming. But you have to be aware that I had to be inactivated from the waiting list on the day after my trxp team told me that I would be called real soon - so my condition only got worse.
Yes I recall abdominal discomfort - kind of a nagging/bruise like sensation. And I would feel sudden jabbing pann like a quick stabbing pain, and I would sometimes flinch. This seemed to correlate with degree of inflamation occuring at the time. Med changes and antibiotics were prescribed and various scopes and scans ordered.
I was always feeling nauseous. My GI had me on omeprazole early on. But the nausea continued. Sometimes I had to make myself eat. My GI recommended Ensure and a scoop of ice crean because I began to loose weight.
I do not remember my numbers. And I do not know about the 'staging' steps. By the time my GI referred me to trxp clinic, I was already in need of a trxp.
I suggest you look at the info on Mayo site for PSC and liver disease information. It is the best I have found. I wish I had known about it when I was going thru all of this. The docs can deal with symptoms to keep you comfortable.
As further info - when you are listed for a transplant, you are given a pre-trxp nurse. She/he is always available to answer any question that you have and to coordinate your services and help you whereever needed. So you are really never alone. Ane doc on the transplant team are, in my opinion, the best and most caring and understanding that can be found.
I was very comfortable with my trxp clinic here in Ky. But they do not deal with many psc cases, and when my complications developed, then they referred me to Mayo to see the specialists. I am so happy that they did!
Hope this helps.
Rosemary
Thanks for more great info. I liked your "flinch" comment. All of a sudden I make grunt noises when it feels like some abdomen organs flip flop with each other. This may be 3 times a week. How did you find the recovery support so far from home after transplant compared to all the support your would get in your Kentucky area like church, schools and job mates if you went directly there before