Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Michele Hi...I'm Lynn and my husband was diagnosed with PSC almost three years ago. I agree with you this transplant listing is very confusing. I haven't been able to figure it out. For months now I've sat back and read all the messages. The stories and events that each person has gone through just blows my mind. When we first went to Hopkins the suregon and liver specialist wanted Mike listed. I think this had to do with the fact that he has had UC for such a LONG time. Mike has problems. Itching from time to time, but not as badly as discribed by some in the group. His brain fog comes and goes..I worry about his driving because he can get lost. But that doesn " t happen very often. Its the weakness thats hard for him now. He's lost a lot of weight ( approximately 28 pounds) and feels as though he's loosing muscle tissue. I know what you mean about the fear of being listed...but then since one has to put time in on the list, you want your quality of health to be as positive as possible going into transplant surgery....So if one becomes weaker and weaker, complicated with other problems then how can they possibly be moved to the top of the list if they haven't been listed for X amount of time? And after hearing all the complications everyone is having I wonder just what makes one " list available " ...Because it seems to me that a large number of people in the support group should already be listed becuase of the quality of life. Transplant Listing >This transplant Listing is very confusing and can vary greatly. I have >been listed for a year on the basis of lab results and ERCP results. My >docs. said the disease is progressing faster than anticipated and wanted >me listed for waiting time which is important if a liver becomes >available and you are the same status as someone else. The person with >the longer waiting time gets the liver. I have had no varices, or bouts >of cholangitis or stents. (Knock on Wood) My B.R. lingers around a 2-3 >and my ALK Phos. about 800-900 and AST/ ALT around 150 and the last >profile GGT (?) about 400, regardless of meds. I'm on actigal, >prednisone and asacol. My biggest problem is UC. I was hospitalized >once for an infection in which I needed Vitamin K shots and an IV. They >feel it was a sinus infection that worsened due to my depressed immune >system. I too didn't want to be listed because of the scary thought of >transplant. But I want to be strong enough to make it through the >transplant. Its a double edged sword. I have a beeper but don't expect >to be called until I'm " sicker " . Yet, I have heard about patients with >PSC called for transplants from work. I have talked to two of them. >One was back to work in three months. I'm also surprised that some of >you who had so many stents, dilations, and bouts of cholangitis have not >been listed. I'm curious to hear from those on the list that were >transplanted, how long they were listed and their condition b-4 >transplant and recovery time. In the end, I give up trying to predict >the what, when, and how and just pray for the strength and courage to >face whenever and whatever that will be. This is much easier said then >done and I hope that we can all find peace. This group has helped so >much. >Thanks, >Michele > > >------------------------------------------------------------------------ >The Weather Underground. We provide weather across the world. >Visit http://clickhere./click/48 > > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Michele-- I'm not listed yet, but I, too, will be interested in the responses to your questions. You are in my thoughts & prayers. Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 1999 Report Share Posted September 14, 1999 Tim wrote: ......Yes, in 30 years (the current liver tx survival record isn't quite that long yet) the liver would be working like any normal 37 year old liver....... Tim, Does this mean that no one has survived more than 30 years or does it mean that the earliest successful transplant was less than 30 years ago? Just wondering... Jodi Jodi Rhoades, 's Mom (age 9 - diagnosed with PSC 6-99) " For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope. " 29:11 ! ______________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 1999 Report Share Posted September 14, 1999 Tim, You are such a wealth of information. We're so glad to have you in the group!! Peg Romlein wrote: > --- , mother of wrote: > > I don't understand this whole transplant thing. > > Dave Spiro is the business (as his sig says) so he can correct > any misrepresentation I make. > > > I have corresponded a few times with a young woman in Oregon > > who has AIH. From things she spoke > > of, I understood that it was very difficult to stay on a > > transplant list; > > that your health has to be critical and that if you are > > dismissed from the > > hospital, your name goes off the list and then you start over > > again. Do > > these rules vary from hospital to hospital? Or from State to > > State? > > Getting on the transplant list is the joint decision of your > doctor, you and an evaluation committee at a transplant center. > The choice of when it is time to put you on the list will vary > from doctor to doctor, some will choose to have patients wait > until they qualify for status 2B (sicker), rather than getting > on the list at status 3 (sick). There are UNOS policies that > provide guidelines of what qualifies as sick (3), sicker (2B) > and sickest (2A) for PSC patients. They are on the net at > http://www.unos.org/About/policy_policies03_06.htm. These rules > are national, but their interpretation can vary from one center > to another. > > Once you are on the list you stay until removed. Your status may > change, i.e. from 3 to 2B to 2A to 7 (not presently > transplantable) back to 2A, before you are taken off the list > because you received a transplant. Other reasons for being taken > off the list include: death, transplanted at another center, > recovered, transplanted from a living donor and there is always > the other category. Unless you have recovered or died your > health status is not a factor in staying on the list. Your > health is a factor in what status you are listed at. Sicker > people get priority over the less sick. So if you are > hospitalized in the ICU at status 2A, recover somewhat and are > discharged, you would probably drop to status 2B. Going from > ahead of all those waiting at 2B to behind all those with more > waiting time than you (other things being equal). The kicker is > status 7 - not transplantable. This can happen if you have an > infection, suffering from a cold, have multiple organ failure > occurring. Usually you would be classed status 7 only when you > reach the top of the list and are asked if you are ready. If you > are not the you stay at status 7 until you are ready. You don't > lose any waiting time, in fact you continue to accumulate > waiting time at status 7 for 30 days. When your infection or > cold is over you go back on the list at whatever status is > appropriate. > > > did I also hear someone say (see someone typed) that if you > > are pursuing live donor transplant that these rules no longer > > apply? > > The evaluation for a transplant is still done, but the rules for > selecting who is to get the donated liver are not applied. > > > In these cases, > > does the patient have control over when the transplant is to > > happen? > > Yes, the donor, donee and transplant center schedule a time for > the transplant, just like any other elective surgery. Of course > if the center had just had several donors in the 2 days before > you were scheduled, and most of the staff were up all night, you > might want to postpone for a day or so. > > > Also, I understand that body size has a big impact on the > > compatibility of donor > > and donee, but I haven't heard age mentioned. > > Age is not a factor in liver transplants although donations by > those over 60 are not frequent. Since liver tissue regenerates > (given a over all healthy environment) a healthy 70 year old > liver is as good as a 20 or 30 year old one (for cadaver livers > it may in some respects be better - the 70 year old is less > likely to have engaged in recent risky behavior that hasn't had > a chance to show up on tests yet). Transplant centers do set > their own criteria for accepting organs for transplant. A liver > rejected by one center may be accepted and used by another. > > > My son has a somewhat rare blood type (AB- , although am I > > correct in my understanding that the > > negative has no bearing on transplants and that he could use > > either A or B > > bloodtype for transplant?) > > That is correct the rh factor +/- has no bearing on organ > transplants, only on blood transfusions. can accept > donations from any donor, in that respect having blood type AB > is fortunate. > > > The rest of my question is - my mother (63 years > > old now) has the same blood type as . If she were to > > offer part of her liver, does age play into the outcome? > > Only insofar as it affects her health - transplant centers don't > want to put donors lives at risk. > > > Does her liver portion regenerate so > > well that in 30 years when is 37, he will not be working > > with a 93 year old liver? > > Yes, in 30 years (the current liver tx survival record isn't > quite that long yet) the liver would be working like any normal > 37 year old liver. > > > > > Mother of (7) ADHD & PSC > > Tim ltx 4/4/98 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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