ammonia levels question from a newbie

[Suzi]

Not sure if I should have started a new topic or not , but wanted to update you good folks on our visit to STrong this week.  We met with both surgeons...mine and Dan's and had good conversations regarding shoulder surgery, Dr. Levine's treatment trials in Syracuse, and scheduling our big day!  Looks like shoulder is on hold until after transplant and they would very much like Dan to get into Dr. Levine's trial study because knocking down the viral load would be a very good thing before surgery...if he doesn't tolerate the treatment, because we have a liver in wait, we can jump right into transplant phase.  They think transplant should be within the next 6 months.  We feel like we have a plan now and hope to get into this trial study ASAP.  We met Dr. Jain while we were there ... said hello from Hank... and he seemed a bit "embarrased" that he was a topic of conversation on a news group...a good topic for sure...but a topic none the less! Nice guy!!! 
We will keep you posted.  Thanks, as always,
Suzi and Dan

[hanklive39]

Hi Suzi & Dan!

That's great news!!!

I'm glad to read that you met Dr. Jain! He has to be one of the most humble human beings that I've ever been associated with in my life!!! So it doesn't surprise me that his response was the way you described it.

He was probably wondering who the heck I was After all, it's been at least eight years since he treated me after my bout with cytomeglovirus which occured about nine+ years ago - post transplant.

Next time you see him, tell him that I'm the big fellow from NY City with the scars on both sides of his face who's hispanic... That might be able to jarr his memory a bit. I was also Dr. Cassavilla's last liver transplant @ UPMC in Pittsburgh before he moved to Argentina and opened up a liver transplant center in Buenos Aires...

He may or may not remember that!!! Heck, he's probably performed so many transplants since he left Pittsburgh that I'm not surprised if he didn't remember me... Oh well, I still think very highly of him!!! He's a real class act! Thanks for the update, and I'll make sure you're both in my prayers.

Respectfully,
Henry

[pete c]

 HI Suzi

  I just want to welcome you to the site .Hank is a wealth of info as is alot of the others here.I will keep you in my prayers as you jounery unfolds befor you both.Hang in there and to me you and your husband are a true blesssing.Thanks for shareing.

                                                    pete

[Hank's mom]

Hi Suzi - Nice to meet you. I am also a Susie, spelt the other way as you can see.

I was put on the tp list in Oct.'07 w/a MELD of only 7. My doc wanted to make sure that if things did go south quickly, I would all the prelim stuff taken care of and out of the way. I go to Beth Israel Deaconess in Boston and absolutely trust my tp team.

All people on the list have a list of things to do or the they risk being kicked off the list - this includes taking care of teeth/oral health issues, eye exams, a plan for safe housing before/during/after surgery, meeting with a psych/therapist to help with any rough patches and help you make sure you can face the road to recovery, financial stability which they will help with in a variety of ways or at least steer you in the right direction to, random urine tests for drugs and alcohol wether you seem as though that's an issue or not, can show you will follow drug therapies, remain in the area, and will not engage in risky behavior, such as eat raw shellfish, I live on Cape Cod and am an oyster and clam freak! swim in ponds or estuaries where water becomes stagnent, skydive, etc. I nearly blew it when I stopped all meds for a day and a half as I knew something was wrong with some combo and decided to start at square one because of miserable sides. They made adjustments that helped and did tell me that they can tailor post tp meds to a point so they are the most tolerable. They also have an orientation meeting with all tp candidates including those who need other parts, during which they explain the MELD, all issues, and better practices for things like house cleaning products. (Boy do I miss using bleach, oh well. Small price to pay.)

Since then, my MELD went up to 12, but has returned to 9. Perhaps if your husband cant have surgery, he may be able to have another type of treatment, such as short term cortisone shots or work with a rehab team. I had to have minor surgery for kidney stone issues in November with docs who work with mine at BID/Boston. They were able to adjust anesthesia and pain meds to keep my liver safe. Your husband's may be a lot more serious of a surgery.

I was told the same thing about ammonia not affecting MELD or tp - it's just a separate item, though it seems related. One thing I have learned is that instead of denying myself the rare special meal, I can adjust my lactulose, plus stool softener, so that the richer food is not much of an issue. I also take xifaxin which is a digestive system antibiotic keeping any infection away in case of back-ups.

I, like Robin am curious at the low number they are so ready to perform the tp at, but don't know all the factors in your hubby's case. Living in New England I was told my score had to be up around 25-27, other than if I got injured somehow, because New England has the greatest amount of candidates in need and there are only so many body parts. Perhaps your hubby got bumped up because of your donation. Still I lived at 12 with very little problem other than what I have from HCV.
I kinda want to be in seriously miserable shape before I am ready for tp, and felt way to good at 12 to hasten the surgery.

As always things are different for all of us. I wish you, as caregiver and best bud, and your hubby all the best.

Susie

[Suzi]

hi all,
have been busy of late trying to get ready for the big day.  we have been back and forth to Rochester and it seems they are now ready to go ahead with tp.  We had resigned ourselves to holding off as that seemed to be the direction the doctors were heading, but received a call last week that they want to talk a date.  I have been cleared as live donor so we are taking care of loose ends around the house, job and the like and getting psyched for the big day....we think!

You mentioned his low MELD score....we were told for live donor transplant they liked to do surgery when MELD was <20...his is 15 as of right now and has been stable at that for the past 6 months or so.  We'll see what they have to say next Tuesday.  Done trying to second guess the team!
Will keep you posted!
Suzi and Dan

[robin]

Wishing the best for you Suzi and Dan. Have you got family to help with things when you go home? It will be a while before either of you can drive but they will go over all that when you "talk". I hope things work out as you plan. Keep your spirits high...robin

[19Dragon52]

{{{Hi Suzi!}}}

I am T/P naive but wanted to send along Well-Wishes for you & Dan.  I am anxious to read your Post Talk Appt. posting.

Hoping The Best For You Both!.....

[Suzi]

Hi All,
(Should I be starting a new strand??? I am sooo not savy on these things)

Anyhow....It's all in perception....our visit with Rochester went well.  The good news is is that they feel Dan is NOT sick enough to go ahead with the tp now...I guess when you get a call saying the team is ready to talk about dates for surgery it doesn't mean it's imminent!  We had loooong talks with surgeon and coordinator and the team could not come to consensus on his case.  I was a bit of a basket case...mostly because of the rollercoaster ride of emotions over the past 8 months...but we totally trust their thoughts and concerns and are willing to continue the ride as is.  They did do a CT scan to check for lesions and if they were present they would probably go ahead.  The surgeon felt the risks outweighed the need for right now.  We are taking the chance that we could miss the opportunity to do live donor and we basically need to be ready to roll on a moments notice.  THAT'S the hard part for me...my life being very driven by my palm pilot and calendar!  It would be much easier if I was to be the caretaker post surgery and NOT a patient as well...that compounds things a bit!  From what the surgeon said...their informal studies at Strong have shown that HCV transplants of live donor seem to respond a bit better than cadaver donors...

As far as shoulder pain goes...they have agreed to Darvon as a source of relief...Gosh, their was another one they thought of...can't remember at the moment...that Dan's gastro nixed because of how it worked against ammonia levels.

So, life goes on...we are planning our summer (my first summer off in three years), have a bag packed ready to go...and I'm working on practicing meditation to balance out my obsessive compulsive tendancies....

Keeping positive and thanks as always,
Suzi

[robin]

Suzi...does the transplant doctor and hepatologist know that he is taking tylenol from the darvoset on a regular basis? If so, I bet they would stop it. I was told that I could not take any medication without the TP team approving it...even tylenol, motrin, aleve or anything like that.

It may be good that he is going to be able to treat before transplant. I attempted but was too decompensated already. It's much harder to treat after transplant because you have the problem of being already immunosuppressed. Then if you take prograf (most commonly used) it hits your bone marrow as well as the treatment meds.

You can continue your post right here or start a new thread. Whatever you feel most comfortable with.

Keep your spirits high...robin

[Rainbow]

"I, like Robin am curious at the low number they are so ready to perform the tp at, but don't know all the factors in your hubby's case. Living in New England I was told my score had to be up around 25-27"

Transplant centers have their own guidelines.  Some transplant at lower MELDs.....like Davis University in CA and St Lukes in Florida.  Survival rate is higher for people transplanted at lower MELDs because obviously, that means that they are in better shape than people with higher ones.

[robin]

Rainbow...I was listed active at 15 and received the "gift of life" at 18. It had been 19 the week before but on the day I got the call, I was at 18.  We don't have a lot of people listed in our program so odds are you will get a liver without a wait. We don't do living donor transplants but I was only listed less than 2 months when I got the call. Had been listed in OKC for over 2 years and they said that when my MELD hit 17, I would probably get called in a couple years. Keep your spirits high...robin 

[Rainbow]

I believe University of Davis transplants when the MELD is 16, but other transplant centers do it at 24....and St Luke's in Florida has the shortest waiting period...just a few days.

[hanklive39]

Btw, Do you know what MELD means in Italian??? Yes indeed!! It's Manure, or feces!!!

Respectfully,
Henry

[robin]

Appropriate, Hank, since the lactulose to deal with the ammonia is pretty close to feces. Keep your spirits high...robin