What is Cirrhosis
Cirrhosis is a consequence of chronic liver disease characterized by replacement of liver tissue by fibrotic scar tissue as well as regenerative nodules, leading to progressive los...
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Transplants etc
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Here I go again, treading on matters with which I have no experience - but what the heck!
There have been a number of folk who have had transplants recently, which is awesomely good news. Ultimately a transplant is the total last resort for anyone suffering from advanced liver disease. It is the point of no return. I know from my own thoughts and feelings that there was always a hope of a transplant if everything else failed, but I think I always knew that a transplant, being the last resort, was going to be an awful experience to have to go through. Thanks to whatever, I don't believe for one moment that I will ever need one and for that I am eternally grateful. I do get the feeling at times that a transplant is seen as a panacea. In oder to get near the transplant table (most don't get that far) one has to be terribly ill. This is not elective surgery! I don't know how much patients are told by the transplant team about what life will be like after transplant, but I suspect a somewhat rosier picture gets painted than the reality of the situation. There also seems to be a feeling that this group is not a place for people to post who have been through a transplant. I want to beg to differ on this. Sure, the experiences, treatments, side effects, etc etc may be different to the disease, but a transplant is the next step in the cirrhosis cycle and I think it is important for people who have this horrible disease to be as well prepared and armed as they can be to mentally cope with what may be going to happen to them. Unfortunately (?) that knowledge can only come from people who have been through it, or from people who have cared for those who have been through it. This is a caring group, the best that I have come across and I for one would like to know that friends that we have got to know throughout their suffering with cirrhosis feel that this is still a place to come to for support and still a place to share their experiences. I don't think there should be a feeling of "I've been transplanted therefore I need to find a new home". I could say that from my own situation having been blessed with recovery there is no point in me continuing to post here (maybe some wish I wouldn't!), but I do continue, just as I continue to research about cirrhosis because hopefully I can help other people with their disease. So, in a very badly put sort of way I would like to see people continuing to be part of this group irrespective of where they feel they are in terms of their health or recovery. If you look next door at the 'Alcoholics Group' you will see people still posting and helping others years after they have conquered their disease, and people still going to AA (love it or hate it) sometimes 10 and 20 years after having kicked the habit. I suppose I am looking towards having the same sort of continuum within the cirrhosis group. I hope others agree. Craig Posted on 11/02/09, 04:11 am |
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Not being - thankfully - sick enough to be on the transplant list, I do feel that all personal experience regarding all aspects of our common problem should be shared, since it will always benefit someone, specially when it contains information doctor might forget to give. 
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WOW!
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Is that a good WOW!, a bad WOW! or just a WOW!?? :-)
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I would agree and plead for people to post here with their ongoing experience pre and post transplant. Stangely enough I have been reading a lot of information on this subject on transplant center website's but I would have to agree that there is no better information than from the horses mouth so to speak. I will be going to the liver/transplant center in B'ham, Alabama on the 8th of December. There isn't much about any of it that doesn't scare me. The appointment had been on the 18th of November and the docotor is on vacation or something to that effect so they rescheduled it. I have already been waiting several months for this initial appointment and I am very nervous about it. Anyway, I read on two different sites that life besides the expensive med's you have to take for the rest of your life returns to mostly normal within 3 to 6 months after the procedure. I am curious to know if this is close to the truth -- what is the actual fall out -- the after affects of the surgery. That brings up so many issues -- financial, psycological, physical, and i'm sure so many things one could only imagine. So in saying all of that, please any information about what things to expect during the process leading up to the being put on the transplant list. Things that have caused rejections from being put on the list. Things that go on after being put on the list, the procedure, and all the things after it -- there are so many things. Any and all information is greatly appreciated and needed by someone if not everyone on this site. I don't feel anything is a waste of our time. Thanks for everything -- everyone does here. Always -- Tracey
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Tracey,
My husband had his initial consult in October. You can write up a list of questions to ask before the consult. It was an hour appt. We go back on the 4th of Dec. for an ultrasound and another visit with hepatologist. Denise
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I've only met one person who is on the transplant list. He was in a class I was taking for (very gentle) yoga and meditation offered by our liver clinic. He had had an encephalopathy (sp?) experience that was, in the telling, at times absolutely horrifying to me, and at times, really really funny (he laughed too). I vaguely remember it all but it was something funny about having to count how many grapes he could eat a day. This fellow is so gracious and kind and so full of hope and caring I don't think I've ever been so moved. Grace must come from overcoming impossible difficulties!??
Yes I agree it helps to share ... and like wontquit says - doctors often forget to tell us some of the most important info - they're so busy and (understandably) get too conditioned to extremely serious symptoms. I think sometimes they're as afraid as we are ... but just (understandably) can't allow themselves to go there.
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Nice thought Craig. I am thankful to have found this group shortly after being diagnosed in March. It quickly turned a horrible experience into something that I could deal with, mainly, by reducing a great deal of what we all fear most...the unknown. All we can really offer is an ear,knowledge and comfort but that covers a lot. Not every post has to hold the answer to lifes mysteries, it only needs to let others know they are not alone.
Thankfully, i have not had to endure the majority of what others have here. But, if/when I do I will be much better prepared to do so because of those who have posted here. I agree with Craig that the post transplant picture is probably softened by the medical field as we have seen done to other phases of this disease. I greatly appreciatte all information from the group both the negative and positive aspects (but all with a positive attitude). I would hope that no one would begrudge the good news/outcome of another even though we all are at the mercy of human nature at times. Similarly I would hope that no one is too "embarrased" by their "good fortune" to share their experinces so that the rest can learn through the transparency of the unknown. I can only assume that transplant does not end this disease but only takes it into a new set of issues. While this disease has us all in a different place physically and mentally, we are all (careneeders and caregivers) in the same boat. Most importantly, if ya'll stop posting I may be forced to actually work and research on my own like Craig. Thanks.
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Craig, wonderful post. I personally would appreciate hearing anyone's personal experiences from a transplant. My husband has cirrhosis and has been told by his doctors he is a walking miracle. His liver function tests all come back with horrible numbers, yet he is feeling pretty good, non jaundiced, and playing hockey still. They cannot believe their eyes. He does have a specialist, and now also a liver transplant doc who he reports to--and initially they were going to put him on the transplant list since his tests all come back showing horrible results, but since he looks good, and feels good, they are holding off on transplant steps just now.
Since this is known that he will need one some day, I would personally love to hear from people who have gone thru those steps from this (near end) stage of cirrhosis to transplant and out the other side. Hopefully people will continue to post updates and personal experiences. I personally am terrified for our future and knowing that is in our future......
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