I got this post on another PSC group I am a member of that has about fizzled out. I would appreciate it if any of you have any thoughts on this persons inquiry you would post it here and I'll get back in touch with them. Thanks!
"For the past year I have been looking for a living donor for the partial hepatic transplant. Recently my MELD score has jumped to 24 most of that is influenced by INR which is like 2.4 my bilirubin is 9.5. The cut off for living donor is 26. I am an O type and I was told that in NY they transplant O at close to a MELD score of 36. I know that in other states the score is considerable lower like 25. I also understand that they are able to give a few points for each cholangitis attack. My question is does it pay for me to wait it out in NY, or perhaps I will have a couple of cholangitis attacks and my score will border 36, or to go out of state for transplant and wait there? I need a bit of guidance, if anyone has any input I would greatly appreciate it."
Some potentially helpful research (note, these are in order of search results, not quality of staff, etc.) I did not find any MELD score information, however, at least there's a quick comparison and contact information to further the search! Hopefully the age ranges per location can help narrow down which State this person might want to consider if NY isn't doing what needs to be done and a potential donor and recipient need to uproot. Unfortunately I do not have any good information on whether or not to wait until the MELD goes higher, it appears to be a balancing game for each individual person and medical team.
Perhaps someone will list States by MELD score, although I can see that being pretty controversial. If anyone else finds such a list, I'm sure we'd all love to see it!
My husband has PSC, was very stable from time of diagnosis at age 46 until last year when he turned 64. Long story short, he’s had 7 ERCP’s since Aug.2014& two hospitalizations, one when he almost died due to having an Interventional Radiologist perforate his stomach, which almost killed him. He had surgery to fix that, but his recovery was very long after that. He’s been getting stents replaced every 6-8 weeks since Nov. 2014, but the past 2 weeks has been getting his low-grade fevers again, diarrhea, loss of appetite etc…all the stuff that goes will falling off the cliff. His bilirubin went from 1.0 three weeks ago to 8.9 a few days ago. He’s weak, jaundiced, and sick. His Hepatologist (in Rochester, NY) said he has done all he can do for him, and referred him to Transplant doctor for evaluation last week. That guy told us the same that you mentioned. My husbands daughter is same blood type & wants to be live donor. We plan to go to Cleveland Clinic for live donor evaluation. They still haven’t called us from Rochester to start Transplant evaluation testing so we decided to pursue Cleveland. They were very informative on the phone and are willing to push the eval. appt. up since his PSC is obviously worsening and he has a live donor ready to go when needed. He said he feels like he’s dying. I’m trying to stay sane in order to help him as best as I can, but it’s hard. My suggestion is to seek out evaluation in another region or you will wait for God knows how long to get a transplant in NY. It’s a sad state of affairs, but true. Good luck to you!
Thanks for the reply GmaTD53. Just to give you a brief update since my original post. I was listed at Duke Medical Center in Durham NC for transplant in January of this year as well as at Carolinas Medical Center in Charlotte. My MELD shot up almost 4 weeks ago now from a 19 to a 33 which put me at the top of the list at both centers. I received my liver transplant on July 23rd and am recovering well. From what you are telling me, your husband needs to be listed for transplant as soon as possible. My bilirubin finally went to almost 11.5 when I got my transplant. You should have seen my old liver. It looked like a piece of burnt meat. It was a miracle I made it in when I did. If it's convenient for you to travel to North Carolina I would encourage you to get an appointment with the Duke Transplant team to have your husbands case evaluated. They are really super to work with every step of the way. Hopefully things will work out in Cleveland for you though and you can get him listed. I had actually pursued living donor option with my brother and we thought everything was going to be a go but where they were going to cut his liver there was a major blood vessel in the way so he had to be disqualified. I do hope and pray you folks will be able to get him transplanted soon. We will keep you in our prayers.
Update on hubby’s condition as of 8/21: Bili up to 9.1 two days ago so Hepatologist went back in via ERCP yesterday & restented him. Apparently there was some pus clogging the left stent and some stones clogging the right. So he cleaned things up, restented him, and we are hoping for the best.he’s been approved to go to Cleveland Clinic ( what a pain in the you know where that process was!), so we are looking at Sept. for evaluation appt. We are 5 hours from Cleveland so it’s our best bet. New York City is a lot farther and it’s way too expensive to go there and do this stuff. Hubby’s pain has improved and his ascites hopefully will improve a little too so he’s not suffering any more than he has been. Fortunately, he was always in good shape, weight wise, worked out regularly, etc., so he feels strong enough to go through the transplant, whenever that might be, but he’s a long way from where he was 1 year ago today when he was first stented 19 years after original PSC diagnosis! So I’m glad to hear, Mark, of your successful transplant and we wish you the best in your recovery! We’ll keep you all posted with things once we go to Cleveland.
Another update on my husband. After the re-stenting on 8/21, hubby’s Bili up to 13…stayed at 13 for 2 weeks, the he started getting weaker and I knew he was declining. His Hepatologist at Strong in Rochester has not even bothered to call us since the referral to Cleveland Clinic was moved up to Sept. 14th. Hubby doesn’t want to go into hospital because he’s afraid of the terrible cascade of events will reoccur like last year. The stenting obviously hasn’t helped at all and yet we can’t go to Cleveland yet because this is the holiday week and they aren’t doing any outpatient evaluations. His daughter wants to be a live donor but with his Bili continuing to climb (it was 16 three days ago), he may be too sick to be a candidate. I’ve had to take another leave from work and they’ve been great about it, so no problems there. But how high are they gonna let his Bili climb? It seems his Hepatologist has turfed him the Cleveland about 2-3 months too late. I think he’s approaching liver failure and will be too sick for transplant. Just venting and praying for a miracle…
I'm so sorry to hear of your husband's worsening condition. Is he on the transplant list and if so what is his MELD score presently? With the bilirubin so high his INR has got to be climbing up there as well. Have you considered approaching another transplant hospital in another state? I'm not sure if that is practical for you or not. The team at Duke University Medical Center in Durham NC that has handled my case has been just top knotch. I don't think I've ever met a more caring group of medical professionals that worked so well together and for the good of the patient. I'd be glad to give you some names and numbers of the coordinator and doctors I used at Duke if you are interested. Please be assured of our prayers for he and your family at this time.
They dragged their feet at Strong in Rochester so rather than get listed in NY (this has all happened in the past 3 weeks)and we were told by Transplant Hepatologist in Rochester that he’d wait 18 months for a liver here, maybe longer, so his daughter offered to be a living donor and they don’t do live donor transplants in Rochester so we chose Cleveland clinic. He got more labs today so I should be able to figure out where he is MELD wise. He’s declining and it saddens me to see my once healthy and strong husband so sick. And he was doing so much better when spring came…but fell off cliff again in late July. We trusted those doctors at Strong and they have since turfed him because he has the eval at CC next week. I can only pray that the good Lord sees him through this, no matter what the outcome. So he’s too sick to go anywhere besides Ohio at this point…Thanks for listening!
fcmmark said:
I’m so sorry to hear of your husband’s worsening condition. Is he on the transplant list and if so what is his MELD score presently? With the bilirubin so high his INR has got to be climbing up there as well. Have you considered approaching another transplant hospital in another state? I’m not sure if that is practical for you or not. The team at Duke University Medical Center in Durham NC that has handled my case has been just top knotch. I don’t think I’ve ever met a more caring group of medical professionals that worked so well together and for the good of the patient. I’d be glad to give you some names and numbers of the coordinator and doctors I used at Duke if you are interested. Please be assured of our prayers for he and your family at this time.
Congratulations on your successful transplant! I think you made the right choice:) I am curious, how did you make your decision to multi-list further south? What tips do you have for someone looking at listing or multi-listing outside of their local area?
Thanks for the congratulations. I continue to feel better every day and actually worked a full 8 hour day on Tuesday. Had to take a longer lunch yesterday but still managed to get in 7 hours. One thing is you cannot rush your recovery. It is seven weeks today since transplant but there's still much inside that has to heal up. But I'm so very thankful for this gift of life!
Regarding multi-listing. In my case my transplant coordinator at Duke actually suggested multiple listing and suggested Carolinas Medical Center in Charlotte. In North Carolina there are two transplant regions. Region 1 consists of Duke Medical Center and UNC Medical Center and Region 2 is Carolinas Medical Center. So having the listing in two different regions increased my chances of getting a liver sooner. The only draw back with the transplant center in Charlotte was that it was 3 hours from home whereas Duke is only a little over an hour away. Thankfully things worked out to have it done at Duke. Those folks are really super there.
As far as any tips, I think the biggest thing is that you are able to get to the transplant clinic within the six hour window once you get the call that they have a liver available. I know every situation is different. Some regions of the country have a greater demographic of people for certain blood types so that will influence your decision on where to get listed. I wish I had more to suggest but I really went off the lead of my transplant coordinator who guided me through this whole complicated process.
I wish you well in your transplant journey!
Mark
Crewmom said:
Hi Mark,
Congratulations on your successful transplant! I think you made the right choice:) I am curious, how did you make your decision to multi-list further south? What tips do you have for someone looking at listing or multi-listing outside of their local area?
Well, we are hanging in there, praying to leave for Cleveland on Saturday…its one day at a time right now, as I think I’ve posted before. Hubby’s labs show his MELD to be 29…That’s a lot different than a month ago when he was at a 16!! So as you see, he has fallen off the cliff once more. No fevers for the past 4 or 5 days, but he is so much weaker and is so depressed about that. I keep telling him to hang in there…I’m off work now again to see him through this, one way or another!!! He just turned 65 a month ago and was what I would consider a “young” 65… You must be younger to have gone back to almost a full time work day!! Great to hear you’re doing so well!! Thanks for the support!! />
fcmmark said:
Hi Becky,</
Thanks for the congratulations. I continue to feel better every day and actually worked a full 8 hour day on Tuesday. Had to take a longer lunch yesterday but still managed to get in 7 hours. One thing is you cannot rush your recovery. It is seven weeks today since transplant but there’s still much inside that has to heal up. But I’m so very thankful for this gift of life!
Regarding multi-listing. In my case my transplant coordinator at Duke actually suggested multiple listing and suggested Carolinas Medical Center in Charlotte. In North Carolina there are two transplant regions. Region 1 consists of Duke Medical Center and UNC Medical Center and Region 2 is Carolinas Medical Center. So having the listing in two different regions increased my chances of getting a liver sooner. The only draw back with the transplant center in Charlotte was that it was 3 hours from home whereas Duke is only a little over an hour away. Thankfully things worked out to have it done at Duke. Those folks are really super there.
As far as any tips, I think the biggest thing is that you are able to get to the transplant clinic within the six hour window once you get the call that they have a liver available. I know every situation is different. Some regions of the country have a greater demographic of people for certain blood types so that will influence your decision on where to get listed. I wish I had more to suggest but I really went off the lead of my transplant coordinator who guided me through this whole complicated process.
I wish you well in your transplant journey!
Mark
Crewmom said:
Hi Mark,
Congratulations on your successful transplant! I think you made the right choice:) I am curious, how did you make your decision to multi-list further south? What tips do you have for someone looking at listing or multi-listing outside of their local area?
Having a 29 MELD is well within the parameters at least here in North Carolina to get transplanted sooner than later of course depending on his blood group and when one would be available. I do trust and pray he will be able to get a transplant soon. Hope your trip to Cleveland Saturday goes well. Be assured we will be remembering you. Keep in touch.
Mark
GmaTD53 said:
Hi Mark, Well, we are hanging in there, praying to leave for Cleveland on Saturday.....its one day at a time right now, as I think I've posted before. Hubby's labs show his MELD to be 29......That's a lot different than a month ago when he was at a 16!! So as you see, he has fallen off the cliff once more. No fevers for the past 4 or 5 days, but he is so much weaker and is so depressed about that. I keep telling him to hang in there.....I'm off work now again to see him through this, one way or another!!!! He just turned 65 a month ago and was what I would consider a "young" 65..... You must be younger to have gone back to almost a full time work day!! Great to hear you're doing so well!! Thanks for the support!! />
fcmmark said:
Hi Becky,</
Thanks for the congratulations. I continue to feel better every day and actually worked a full 8 hour day on Tuesday. Had to take a longer lunch yesterday but still managed to get in 7 hours. One thing is you cannot rush your recovery. It is seven weeks today since transplant but there's still much inside that has to heal up. But I'm so very thankful for this gift of life!
Regarding multi-listing. In my case my transplant coordinator at Duke actually suggested multiple listing and suggested Carolinas Medical Center in Charlotte. In North Carolina there are two transplant regions. Region 1 consists of Duke Medical Center and UNC Medical Center and Region 2 is Carolinas Medical Center. So having the listing in two different regions increased my chances of getting a liver sooner. The only draw back with the transplant center in Charlotte was that it was 3 hours from home whereas Duke is only a little over an hour away. Thankfully things worked out to have it done at Duke. Those folks are really super there.
As far as any tips, I think the biggest thing is that you are able to get to the transplant clinic within the six hour window once you get the call that they have a liver available. I know every situation is different. Some regions of the country have a greater demographic of people for certain blood types so that will influence your decision on where to get listed. I wish I had more to suggest but I really went off the lead of my transplant coordinator who guided me through this whole complicated process.
I wish you well in your transplant journey!
Mark
Crewmom said:
Hi Mark,
Congratulations on your successful transplant! I think you made the right choice:) I am curious, how did you make your decision to multi-list further south? What tips do you have for someone looking at listing or multi-listing outside of their local area?
Well, hubby’s decline in status was continuing to the point where he didn’t want to wait until today or tomorrow to drive to Cleveland, so we left last night and arrived at CC Emergency Room and a good thing too. He was admitted with an INR of 6.7, rising Bili again (was 17.2), elevated Potassium and extreme weakness and fatigue. So to get going on this journey, we called paramedic friends who came over and got him settled in the van and I rushed around like a nut packing and trying to remember everything! So, he’s in MICU now and they are taking good care of him. I was able to get in at the Transplant House of Cleveland today (Saturday) for however long it takes…They are great here! He’s pretty sick…he told me last night “I want this damned liver out!” So, will keep you posted. Til then, I’m going to take a nap because I’m whipped after that drive and everything else!
I'm so glad you got your husband in the hospital now at Cleveland. With that elevated INR and Bilirubin that should put his MELD score way up there and ready for that precious transplant. Please be assured of our prayers!