Hoping for 2nd transplant

 Hello Arlene , Sorry I hadn't responded sooner but kinda hectic around here lately . Most doctors are and should be hesitant about throwing TIPS on the table as a option for fluid issues . It's best to reserve the surgery for a last resort as most ascites can be controlled by combinations of diuretics and diet . When you consider a person with a compromised immune system has little defense against infections and surgery opens that door widely , it pays to consider other options first .

 I had chronic ascites and not only was diuretics not working I believe it caused bad reactions a few times . My G.I doctor who came highly recommended at the time firmly was against TIPS . So much so that after 8 months of agonizing with bi-weekly visits to outpatient for paracentesis procedures he still refused to consider TIPS . Mean time my Hepatologist stepped in and did the surgery at my request . The volume of paracentesis being done was exposing me to the same risk factors as the TIPS surgery .

 Risk factors involved with TIPS are to be weighed heavily . It is a temporary solution to a long term problem , It's for relief and a chance for the body to recuperate hopefully so you can survive transplant . Should the TIPS not function correctly once done , There is a high risk of severe encephalopathy . Once done it can't be corrected or removed and transplant will be only option . The surgery in itself poses risk that include nicking internals while telescoping the shunt into place , It's precisely placed in a position to allow a maximum amount of fluid flow and a fraction off in any direction renders it useless . TIPs statistics suggest it has a good success rate and most patients don't see issues until roughly four years after , Then a loss of flow due to clogging may become a problem . This is corrected by cleaning the stint out surgically . It's not uncommon for some folks to exceed 12 years before problems .

I am on my fourth year and as of a few weeks ago there are no signs of failure reported by my Hepatologist . I don't regret the decision to have the surgery and given the situation I was in it was a " no brainer " . My doctors explained the risk and benefits and summed it up with a sentence that's stuck with me " It's about quality of life not quantity " . Sorry you all are going through this and my best to you and the family .

Ziff         

Hi, Mike home, no answers yet. Feet and belly still swollen. I don't know how he does it, he is much stronger than I. Thanks for support.

Hi all,

Good news, The doctors think that Mikes issues are all related to his 2 hernia surgeries. His meld score dropped from 18 to 12, so they are going to end the evaluation process. I am still cautious because he is still so swollen with the acties and terrible edema in his feet. They are saying it is going to resolve on it's own and put him back on lasix. I know this is not the end and we will have to face the inevitable, just not today.. Thanks for your support.

WD, while it's true that the MELD score can fluctuate, if they think it will be a length of time until transplant is needed, whatever testing they continue with now would be invalid at a later date; i.e., it would be for nothing. If his MELD goes up significantly, they can continue with the evaluation and do it quickly, if need be.

Hugs,
Connie

Hi all

It has be awhile since I posted. Mike has has had no resolution yet to his acites or edema in his legs.  He is back in the hospital and this time dealing with possible acute spontaneous bacterial something, with the acites fluid.  His only symptoms seem to be a wierd sort of mental fog, not quite the same as when his ammonia levels are up.  They ruled out most of the obvious and did a ct scan of his head.  He was agitated and in pain and would not let them touch his belly to get a sample of fluid to test.  I am really scared.  I am going to go the the care givers web site too and post there about some other feelings, but I wanted to touch base here as well.  Thanks for being here.

 

Hi Connie,
he would not let them take fluid , he is not himself and keeps saying no to everything, so they could not do a culture. But they are going ahead with antibiotic treatment in the mean time. Hopefully he will be back to his old self. He never says no to testing and stuff like that. Thanks for the reply, hope all is well with you.

Well, thank goodness they are giving him antibiotics. They are probably giving him what is usually prescribed for SBP, since they didn't get a culture.

You can stay current with how I'm doing by reading my last couple of posts on my Post-Transplant Blog. Thanks for asking.

Hugs,
Connie