I agree with your husband. I would be hesitant as well. I believe you need more concrete information as to why you should go with transplant this early with low MELD. Are the ERCP’s indicating a breakdown now of the ducts with having to go in so many times to re-stent? Is he functional, working still, etc. Has good and bad days or is he really really jaundiced, just feeling like death warmed over, etc.? I think not based on what you have told me. I just don’t see on the surface with the limited information I have that you should grab this chance so quickly with such a low meld score. If his MELD suddenly kicks way up like mine did they’ll push him to the top of the list. Now of course I’m not sure the transplant rate in your state, etc. That would be something to discuss with Mariel Carr. I’d encourage you to contact her especially if you decide to dual list, if you are in a high demand low-donor transplant region, etc. Her site is http://comparetransplantcenters.com.
The reason I decided to list at two centers is that in North Carolina we have two transplant regions. One region is Duke Medical & UNC Hospitals and the other region is CMC Hospital in Charlotte. Duke & UNC are allocated livers between themselves, whereas CMC in Charlotte covers that entire region. Of course if you should end up in a Status 1 situation, they will find a liver anywhere in the nation to keep you alive and transplant you. Being listed in two regions gave me the advantage of more opportunities for a transplant. Thankfully I got the call from my main hospital at Duke which is closer to home. My insurance though Blue Cross Blue Shield of NC paid all my transportation/hotel/parking expenses for my trips to CMC Charlotte for the evaluation process and would continue to have paid should I have been transplanted there.
I just wanted to be as prepared as possible especially when things turned for the worse. When I got the call I believe I only had weeks to live. Thank God I got that call! Glad to know he has a consistent ERCP specialist. It’s like a good auto mechanic. They know that engine inside and out and what it takes to make it purr again! I wish you well in this process. It’s certainly a team effort as a family and you need as many members of that team as possible to give you the love and support make it through this journey. Take care and keep in touch!
Here are a few photos. I trust they will give you hope of how your husband will hopefully be after transplant when that day comes. What a difference a year can make.
1 Month Prior to Transplant
Christmas Prior to Transplant
One Year Post-Transplant!!!
10 Months Post-Transplant