So, we saw our doc and it’s about that time we start looking into a facility that will transplant my loved one (Meld of 22). Although my fiance feels he can keep waiting in CA, it’s the descended belly button that is worrying the doc. (Forget what it’s called, but it’s when the fluid in the stomach is pushing the bile creating pressure under the belly button. There’s a risk of a hemorrhage. I still don’t understand it entirely.) With that, New Orleans was mentioned as the ideal location. Tomorrow I will begin making calls. Does anyone have information or experience with New Orleans? Thanks!
I don’t have info on New Orleans. But we came from New York to the Cleveland Clinic in Ohio for my husband’s liver transplant (9 years ago). We had a fantastic experience. Hope everything goes as easily as possible for you both! Wishing your fiancé a short wait time and a speedy & complete recovery.
Recurrent PSC, thanks for your response. We had “the talk” yesterday; it’s a lot of real life weight to absorb. I have a clue of what to expect but the insecure part of me is shouting out that I’m lost. If that makes any sense. I’m young, just turned 30. This situation is intense. Although I have mounds of support from my loved ones parents ultimately most of the pressure will be put in me. Feeling “lost” is not the ideal feeling. Ok, this is turning into a sad song so I’ll cut it. It’s time to get to work, right? Please keep us in your prayers. I’m thankful for the support! God bless.
Hi, Stephen. Yea, I guess it’s good news. It’s incredibly stressful thinking about what it’s required. Nonetheless it’s a blessing that we are given this opportunity so I need to focus on that aspect. We were told there was not residency requirements. Presumably the wait shouldn’t be long as we would be moving there for a quick transplant turn around. We were told the process of initial testing and actual surgery with recovery (suitable for travel allowing us to fully recover with our team back home) could take a month or two. Any perspective on that? Thanks for responding, as always. Take care. God bless.
FX, thank you. Useful factual information is ALWAYS appreciated!! My finances cousin passed in Mass. waiting for a transplant. I’m glad to hear you took hold of YOUR life. The encouragement to do the same is refreshing. My in-laws are fantastic… however, they drive me nuts with how they kiss the ground of any doctor who sees their son. (As grateful parents no doubt.) I’ve been reminded SEVERAL times in the past 24 hrs of what I need to do in order to get the ball rolling for New Orleans. They don’t understand there’s more work to be done outside of saying yes to our doctor’s recommendation. Anyhow, can you shed light on how you went about finding a place to stay and what amenities were required. I’m trying to wrap my head around how to plan this out to best suit comfort and cost. Again, thanks for the information!! God bless.
Hi Gloria, I just sent you an email to your personal account. Check your spam folder if you do not see it. The subject line says PSC. Jill
I really wish you both well. Soon enough your fiancé will be renewed. New Orleans is a good place to spend a month. I bet you will both be going for short walks while you are there.
I know you will keep us informed. We are all anxious for the day to arrive for fiancé.
God bless you both.
Gloria said:Hi, Stephen. Yea, I guess it's good news. It's incredibly stressful thinking about what it's required. Nonetheless it's a blessing that we are given this opportunity so I need to focus on that aspect. We were told there was not residency requirements. Presumably the wait shouldn't be long as we would be moving there for a quick transplant turn around. We were told the process of initial testing and actual surgery with recovery (suitable for travel allowing us to fully recover with our team back home) could take a month or two. Any perspective on that? Thanks for responding, as always. Take care. God bless.
Hi, FX. I looked into the site you provided me with. I went over the lowest wait times, highest survival rates, etc. I came up with 4 (Alambama,Tennessee,Florida and Louisiana). I’m going to say, yes, we will probably go to New Orleans. It was a center of excellence with our insurance, they have above average rates and it’s the referring. Thank you SO much for the information. It was hard to understand the site but I’m sure I’ll understand more as I go. I do have another question regarding pre-transplant condition. Did you prepare your body prior to the surgery. Working on building up weight and exercising are nearly impossible. I think it’s crucial though so I continue to push. I believe I may be warring him out though.
Best of luck to you, your loved one and your family!
Thank you, LillyAnne.
Hi, FX. Our doctor told us they are sending SF residents to LA and they are coming back a few months later. God willing the same will happen for us. Yes, 22 MELD is fairly low for transplant typically. (which is insane considerinh how sick he is!) Our hospital is transplanting at around 25. We know that figure because of our conversations with the transplant department. How would I find what the lucky number is in other states?
Thinking of you today, Glorida, and hoping that all goes as smoothly as possible. Wishing you both a happily ever after soon!