Troubling complication after transplant...has anyone had hepatic arterial stenosis?

So sorry your brother is having complications. We are praying for him.
Angie1953

Thanks Angie, much appreciated :)  btw, you and hubby are in my prayers as well.  How is he, still sleeping

alot?

Thanks Ziff, didnt know that TIPS were so serious.  Do they often have probs?

On top of it all, last night he went out for some air and a neighbor's small dog attacked him while she was holding the leash!  Luckily he was wearing his emboli stockings so it didnt pierce the skin but really ticked him off...his blood pressure shot up, Im sure.

Right now he is sitting at Mayo waiting for our 11:30 appt, he is actually too scared to leave there the way he feels.  I came home to get some cash and my medicine, and back to sitting around waiting for appt.  Then we have doctor at 3:30 so theres a few more hours of sitting around Mayo.  I feel like we should pay board there :)

Hugs,

Mae

 

Carol,

We were due to depart Friday but after this development Im not sure, seeing the doctor at 3:30.

I know that Mayo has good results, but of the small percentage that have this problem (brother) I wonder how successful those stents are....it would have been better if he had a biliary occlusion rather than hepatic artery, I think, but it's all new to me.

I also read that sometimes it's undetectable, these arterial occlusions, and that is very worrisome, especially after he goes back to MAss. And yes, I think he will be followed up by Mass General Hospital in Boston for anything urgent.  For regular checkups he will fly back to Mayo in Jax.

Hugs,

Mae

 

 TIPS surgery has a good success rate for about 4 years but most patients tend to get clogging and that decreases the blood flow . In some cases directly after the surgery some patients develop severe encephalopathy . The only time TIPS usually becomes a option is when ascites becomes life threatening and MELD scores don't warrant a transplant . The hepatologist explain the risk associated with the surgery prior to it being done and have you sign a release form , It boils down to a quality of life issue at that moment . For me it was a opportunity to live without the constant torture of routine paracentesis procedures , Paracentesis alone can introduce infections into the body and the volume of times I was having it done was just asking for problems . I chose the only solution that offered me a normal life again even if temporary , Live to fight again another day .

A. Ziffle

Carol, isnt it amazing that they can bring a heart valve up through the leg?? 

 

I know, in the scheme of things, I should be happy that he's still alive considering he was knocking hard of heaven's door that Sunday, (TP).  I guess he was just having a bad day yesterday and got himself all worked up after researching too much without a doctor on hand to explain what he was reading. 

 

When Mike is ready, hope all goes well with his procedure.  Glad he is able to help out with chores to, gives him a purpose and helps you at the same time :)

 

Ziff, I just love that fighting spirit in you, thanks for sharing.  I always see things differently after reading your posts :)

 

Connie,

Hope your labs were good yesterday.  Surprised I didnt run across you at Mayo, as we were all over the place :)

 

The doctor, a fellow, was very reassuring  and between him and Dr. Rosser (the head honcho) he felt so much better leaving there.  Rosser exudes such confidence!

 

They will do another Ultrasound next week and check his levels, and if all goes well he can go home and send his labs every week, another US in 4 weeks here at Mayo (which he will fly back for)

They put him on plavix for 90 days and added baby aspirin for life.  So he will travel back today with me to Naples before hubby finds another wife LOL.  Actually what saved us was that we Skyped  each other every day at least once, even in the hospital :)  Then Richard will fly back here next week alone (he says, but not sure Im good with that) and go home from Jax.

 

Btw, it was nice that Richard's wife could listen in and ask questions on Skype while doctors and specialists were in his room.  Once during an HE episode, I left Skype on the computer in his hospital room and was able to see him while i drove home to pick up something (via my iphone).  I was ready to call the nurse if I saw him fall out of bed, try to pull his tubes out or something (I know, Im a nervous nellie :) )  Shhh....not sure that was legal LOL.  No, POSITIVE that it wasn't :)

 

Thanks again to all for all your support, prayers, etc.   I will be still chiming in and watching and praying for you all.  This forum has been a lifesaver, as are all of you.

 

Hugs to all,

Mae

 

 

 

 

Yes, Connie,

he will be going home from there as long as there are no further complications with my brother.
Sure hate it when phlebotomist cant get it right the first time :(

We've seen Drs Rosser, Ping Pong aka Kitt, Bartel (a fellow) and some other name. Hard to remember because we have seen so many hospitalizations in the past 4 months or so.

Ive decided to let the fledgling go on without me (his choice too)....unless there is a complication in which case I will jump in the van and make the 6 hr trip from Naples to Mayo Clinic. Otherwise, i have to put my house in order, literally (left hubby too long at home) and prepare to make the trek to Cape Cod in early March (stopping at baby brother's home in Port St Lucie). Then I will hop on the auto train to northern VA and drive 8 more hours to get to the Cape :)

Good luck to you and I'll surely be coming back in here often, as I feel a connection to folks on here and like to follow their progress. Thanks again :)

Hugs
Mae

Mae, I expect to see you and your brother over Memorial Day. Stay in touch, MGH may be able to help out with the stenosis.

Dan Pratt was my hepatologist for 5 years and I was told that if I went elsewhere (Mayo,etc.) that he wouldn't treat me anymore. The other hepatologists at MGH are all terrific and some will treat your brother if needed. They confer on all of the patients, so you don't really lose his expertise, just his physical presence. At MGH, the transplant team takes over after you receive a transplant, so I haven't seen him since the transplant. I did see Dr. Pratt once, and that was last summer, when I was having problems and spent 5 days in MGH being checked out. At least half a dozen other docs were in on my case. He came by for a minute, asked some questions and that was it. As it turned out, my problem was Lyme Disease, so it was an infectious disease doc that figured things out.

I was the same age as your brother is when I received my new liver. There were a few stones in the road, but things seem to be going well. I shoveled my stairs and walk today and tomorrow I'll be tiling a shower. Am I as fit as I'd like, no, but for 62, I'm still functioning pretty well. And, I'd have died in July 2009, if not for MGH. Every day is a bonus.

At Jackson, the pre and post transplant teams are different. So once Mike had had the transplant, he too "lost" his original doctor.

HOWEVER, now that he is 2 years post transplant, the TC and team only see him periodially unless there are "problems."

HOWEVER, since his Hep C is back with a vengance and he will need treatment, he is back on he Hepatology side and his treatment will be handled buy the PRE transplant folks. They are holding off for a while because of poor kidney function.

Mike's bloodwork has been troublesome. His AFP doubled (to 34.6) in the last month and Oncology has been notified. He is scheduled to see them in April, but maybe be called in before that... Hep C is notorious for spawning Heptocellular Carcinoma (HCC). Mike had a small tumor in his old liver....so I guess it would not be a surprise.

His AST/ALTs are in the low 100s....not AWFUL, but certainly not the 20 somethings they were after transplant.

He is feeling well but for two things: the really bad leg cramps are back AND he has that morning gagging...no vomiting, just the wretching that leaves him exhausted for a while.

Though he is back in the care of his pre transplant Hepatologist, "his" doc is not on the team anymore.

Carol