Cirrhosis Support Group

We got some good news (sorta) My husband Tom who was told in March that he had 15-18 months to live then told in May that the doctor was surprised he'd made it that long (3months)... Told him today that he's doing FINE!!! Yes, he' still considered End Stage but because his numbers are good the doctor doesn't think we need to put him on a transplant list yet! YAY!! (sorta)

Tom went from MELD in March 25 to 16 as of his last appointment. He doesn't go back until November. The doctor even told him he could cut back on the lactulose. He told us to use our judgement and told me to watch for any changes. If he looks altered in any way - Lactulose even if he had two doses already.

He eats a lot of fruits, cherries, peaches, watermelon (not so much these days) kiwi...so on. Whatever we can find on sale.

I keep saying "sorta" because it still puts everything on hold. He is in no big hurry for the transplant but he'd also like to move on and not take lactulose anymore or pills.

I said we are not going to obsess about it anymore.

What scared me is we got home from the doctors and, of course, he doesn't feel good and practically passed out.

But, don't care what anyone says - Prayers Work!!!

Post edited by: booky1961, at: 07/24/2012 04:41 PM

I am so happy for you and Tom! Feel we are progressing in the same manner. Yes, prayers are answered each and every day! Hope you can relax just a bit and enjoy the good news. Today was most likely, a bit overwhelming. We meet the new PCP tomorrow.

Great news! I'm sorry to rain on you guy's parade but you need to realize that he will definitely be on pills post transplant that MUST be taken at least every 12 hours sharp. (immunosuppresants to help his body to not reject the new liver)

Hi Dennis; That's okay.... He knows he has to take that. I have a feeling he's going to have to go back on Metoprolol too because he still has High Blood Pressure...not at the moment, it's really low but I have a feeling.... At least he won't be taking lactulose (he hopes) or the lasix and others. I don't think he realizes that he has other problems. But this is a start!

Definitely no lactulose immediately , and probably no lasix soon, after surgery.

Booky

That's great news. I don't blame him for wanting to avoid "certain" Meds if he can.

November will be here before we realize it.Thanks for sharing good news.

Booky,

So happy to hear this. I am a bit surprised with his #'s, that he has not yet been referred to hepatology for transplant.

I think it is great to hear the MELD is going down.

Hugs

Sarah

@Sarah, thank you.... His liver doctor is a Hep Doctor, he's also a former transplant surgeon. He wants Tom to keep his liver as long as possible because transplants aren't always successful. But I worry that he's not on a list yet but Dr. H doesn't feel it's necessary yet. He does say it's inevitable but to wait. We'll see... I'm still nervous.

It seems to be hurry up and wait! I'm not a patient person!

Hey Booky!

Not to worry about getting on the list. If his MELD goes up from 16 to a level his doctor would consider listing him, say 20, then he jumps right into line with all the other 20's. The only time that "time on the list" becomes a factor is when there is more than one patient with the same MELD and the same matching criteria. "TOL" is the very last tie-breaker. I'm not sure of what the median MELD score for transplant is in your area but a 20 is probably not close enough to make a difference between being on the list now versus later.

Post edited by: dmanflan, at: 07/25/2012 12:12 PM