Hello All. As always, I come to you for advice as you have walked the road. With bilirubin around 13, Ascites beginning, and a MELD of about 20, we're told it's time we open the door to transplant discussions and evaluations (We are at CPMC, SF). We were told we would most certainly be added to a transplant list. Looking into transferring care to another state briefly for a higher placement on the list was discussed (He is A-), possibly Kansas or Texas. Live donors in other programs (UCLA) was discussed. I was denied as an option because I am too petite (I said I'd bulk up, just a little humor) and would need to care for him more importantly. As you can imagine, we feel overwhelmed and afraid. I'd love to hear what you all have to say on the topic and hear your experiences. Please share any advice you may have. Thank you in advance. -A
Gloria, I have no advice, but I just wanted you to know that I hope your fiance gets his new liver soon. Sending positive energy and good wishes your way!
Good wishes to you and your daughter as well, Donna!
No advice but well wishes - I'll take it! THANK YOU, Dancermom. I appreciate you taking the time to comment.
dancermom said:
Gloria, I have no advice, but I just wanted you to know that I hope your fiance gets his new liver soon. Sending positive energy and good wishes your way!
Hello, Donna Marie Hruby. My name is Alicia too. Gloria is my middle name. It threw me off reading your post initially.
I pray, your Alicia, can get the liver she needs wherever it may be. I didn't know you could be listed in more than one state at a time. We are still in the beginning stages of trying to understand how this thing works. Any input in useful. I thank you for comment. Please share follow up after your appointment. Until then, stay optimistic and I'll be sending prayers for your strength!
Donna Marie Hruby said:
We have an appointment today with our daughter's hematologist and are going to ask her to refer Alicia to a hospital in Ohio for a transplant evaluation there so she can be listed (in addition to Children's Hospital of Pittsburgh where she is currently listed) in region 10 that had the shortest wait time in the country according to UNOS. She is at a MELD score of 22 bit in this region, 2, the wait can be long. I say go for it!
Thank you, Stephen. I will keep updating as we go.
Stephen Cox said:
Gloria,
A new journey. You and your Fiancé have so much to deal with. We will be here looking for your updates, sending our positive thoughts, prayers and best wishes.
Take care,
Stephen
Gloria, I have no advice either as I am just beginning down this road to a transplant. I was hospitalized 2 weeks ago and last week spent everyday in a doctors office getting things checked and then finally having my ERCP. My follow up is not for another week but I have been prepared by my doctor to begin discussing a transplant. I really need to get more educated on all of the numbers or scores you mentioned - I count myself luck to live in Houston, Texas as I know it is one of the best places for medical care and my doctor is tops! He did tell me that if my numbers didn’t go back down after the ERCP attempt to open it up a bit the I would be “getting a ticket for transplant” he also said he wasn’t talking 4 or 5 years from now but soon like within this year. I guess time will tell. I hope your fiancé can get his soon! I highly recommend my doctor if you consider Texas as an option.
Praying for you both!
Mischelle
Hi, Gloria,
I had a liver transplant 6 months ago. Under "Success Stories" please see my Dec. 7 list of important issues that I wished I had known prior to my transplant.
Best wishes for you to stay healthy!
EAD3
Gloria,
http://optn.transplant.hrsa.gov This is the national organ procurement information website. It gives information that can help you select one or more transplant centers to get listed with. It also gives you the status of your geographical location. For example, I was first listed at Froedtert Memorial Hospital-Wisconsin School of Medicine in Milwaukee. They were transplanting patients with a MELD of 23. Just 90 miles west, the University of Wisconsin Medical Center, located in a different organ procurement region was transplanting at MELD 20. Chicago, in yet a different region, was transplanting at 35. The MELD scale goes from 0 to 40. The higher the number, the worse you are. 40 is when death is eminent. There is a great variance region to region, and it is wise to find out what number is currently qualifying for a transplant. The lower the number, the more organs there are in the region for transplant. The qualifying MELD score changes over time, but institutions transplanting with low MELD's tend to stay that way and others that are at high MELD tend to stay that way also. It is a supply and demand issue. Chicago, for example has a high demand for organs, but not enough people have signed up to be donors after death. It is a grim discussion, you and your fiancé should do your homework and get listed in more than one region. Keep hope alive. Never give up.
Gloria, Hopefully I have a little to offer on the topic. Having had a living donor transplant 10 years ago, and now being back on the waiting list for another transplant. I can tell you the living donor transplant takes much of the stress out of the process. You do not have to sit and wait or wonder if an organ will be available, you know the exact time and date of your surgery. With living donors it is definitely a lot to ask of anyone to donate a portion of their liver, as it is no minor surgery. I received my liver from my mother, so there was really no discussion, she just said she was going to do it if she was approved.
Going back on the transplant list a couple of months ago, by doctor in Boston was very upfront in telling me that if I had the means to go somewhere else to be listed where they are transplanting at lower MELD scores he would highly recommend it. In the New England region, they are generally transplanting in the low to mid 30's so he suggested the Mayo clinic in Florida. Luckily I have a lot of family in Florida that I can stay with so the financial burden will not be completely overwhelming. One thing I have learned in going to a new hospital where they do not know me is that they want to repeat every single test regardless of how many times I have had it done in Boston. The evaluation process alone at Mayo is going to take a month, I have appointments scheduled from May 4th to June 5th. I don't want to sound discouraging, but there are a lot factors to take into account everyone has to do what is best for them.
Ed