ammonia levels question from a newbie

[Suzi]

Hi, I am so glad to have found this site!  My husband was diagnosed 10 years ago and has just got on the transplant list.  His MELD this fall was 12.  He is out on disability now and has been managing pretty well, but scared me half to death yesterday when he, out of the blue (it seemed) was totally disoriented, trying to find his glasses (on his face) several times, even after I told him; absolutely could NOT figure out the remote for the TV (thought that would be automatic  :+)!! ) took the couch apart looking for his "chair" and the list goes on!
He was absolutely fine on Sunday.  Monday evening seemed "distant" and then yesterday...WHOA!  I am calling doctors today but wondered about a few things and thought I'd check with you folks at "ground zero":

1.  He uses lactolose and may not have taken it for a few days...can he re-cupe and stabilize his ammonia levels...is there a point of no return on ammonia levels?

2.  Could this have been brought on by the fact that on Sunday, his mother may have overdosed him on pot roast and chocolate cake ( red meat and sugar!) that he regulates pretty well normally?

3.  Do ammonial levels effect your MELD?  (I know I could look that up, but thought this would be quicker!)

As all situations are unique and complicated, we are in the hopes of getting him a shoulder replacement surgery either before or after transplant...he is in excruciating pain most of the time and is not taking meds for pain.  I have been approved to be a live-donor and we are in the process of talks and scheduling, either shoulder surgery, transplant or vice versa or SOMETHING! (Oh, and throw in a round of interferon treatment...he has tried twice and can't tolerate)

 I absoulutely freaked last night when this disorientation  happened thinking NOW WHAT?!!!  I just hope we can regulate the ammonia to have time to come up with the right plan for him.

I woke him this morning and he seems a bit better.  I was very mean last night and made him drink his lactolose...he had a rough night, but seems more lucid thus far.

Any thoughts from you folks would be greatly appreciated!

Suzi

[hanklive39]

Hi Suzi!
Welcome!!!

Your husband needs to take the Lactulose at least twice daily in order to regulate his ammonia levels so yes hen recuperate but, his commitment of taking the med must be adhered to, and unfortunately needs to be reinforced by you because of the reduced memory capacity your husband has. Btw, Robin who just recently (Last Thanksgiving) had a liver transplant (mine was over ten years ago) may know of another med that will also help in regulating your husband's ammonia levels... The only point of no return that I know of is if he (God forbid) falls into a coma and his brain becomes irreversibly damaged as a result of too much ammonia toxicity yet ,I have only heard of this happening to only a handful of people that didn't have somebody as a caregiver to watch over them... On a personal note. I was by myself for a few brief periods while I was on the transplant list (Pre-MELD score candidate) and I can tell you in looking back on those days that I was really foolish in thinking that I could take care of myself, by myself!!! I ended up in more hospitals because of excessive ammonia levels & other complications simply by not having someone around to remind me to take my lactulose!!!
I thank God that I didn't get irreversible brain damage although some think I did when I did fall into a coma once!!! Learned my lesson after that episode!!!

Pot Roast equates to a whole bunch of protein especially of the type that is slow to metabolize in one's digestive system... It's the primary culprit for your husband becoming disoriented yet, the sugar in the chocolate cake isn't good for him also because the impaired liver isn't going to process it along with his pancreas as efficiently as they did before he became ill so, restrict his sugar intake also because he may or may not be at risk for diabetes or fatty liver or both!!!

I was on a low protein, low sugar, low sodium diet which I tried my best to adhere to as did my mother by preparing dishes that were in compliance to what my doctors and dietician's suggestions dictated... I do think that your husband needs to see a nutricionist (I know I didn't spell that right either ) in order to customize a diet for his own specific needs... I was on a 1500 calorie diet that really was a drag because, I started having dreams of eating sicilian pizza wiht sausage topping or extra cheese or london broil, sausages, lasagna or anyhting else with meat while floating in the clouds and yet when I did have an actual slice o whatever that had meat in it (yeah I cheated a few times) I would feel so ashamed, and  I would eventually forget what I felt like because my ammonia levels rose
Your husband basically has to become a vegetarian in order to regulate his ammonia along with taking his prescribed lactulose doses religiously!!! I would invest in toilet paper stocks because that stuff will make your bathroom his second home

Now as far as poor ammonia levels affecting his MELD score is concerned, I really cannot help you ther because I was a Pre-MELD candidate myself... However, Robin might just be able to shed some light on this question for you.

I know what you mean by stating that this freaked you out because I freaked out my entire family and was totally unaware that I was acting the way I did and yet, I really got control over my excessively high ammonia levels by taking my lactulose twice daily because of my omther's commitment to making sure that I didn't slip into becoming that other person that quite frankly scared the crap out of me when they described what I did when I didn't have control of my ammonia levels!!!

Suzi, things will get better so long as you're in control of his lactulose intake so, become a part of his memory by being vigilant and if he get's out of hand? Just tell him that he'll end up frying his brain with excess ammonia and end up in a coma or worse!!!

I don't know what to tell you with respect to when would be the best time to have shoulder replacement surgery but, I do know that your husband needs to be checked out by a dentist prior to transplant to make sue his teeth are okay

I'm glad that you found this place!!! The folks in here are really super supportive and I just know that you'll make a bunch of friends in here!!! Keep coming back!!!

Respectfully,
Henry

[Suzi]

Thanks for the quick response.  He is soooo much better today!  Spending the night in the bathroom was a GOOD thing!  He has already started on his lactalose for the day!  He ususally is very good about keeping up with everything...it was a scare that will keep us on track from now on. He remembers very little of yesterday at all!   He acutally is using lactalose 2-3 times a day.  Doctor says 3 times a day and he tries to comply.   We do use lots of toilet paper! 

I think we're over the immediate "crisis" and meet with gastro and transplant team next week! 

thanks again!

Suzi

[willy]

By the way, welcome Suzi and I'm glad that you and yours are better today.

Hank,  You are such a great resource and wealth of information.  Thanks for the help and the great read.  I always learn something myself.

best,
willy

[MissyMouse]

Welcome Suzi!


Mouse

[19Dragon52]

Suzi!

Hank is one of our Best with these type of issues.  Robin also with being our most recent member to have gone through a T/P.  MissyMouse is up on a lot of this kind of info, too.

Prayers & God's Blessings.....

[robin]

Hi Suzi...I'd like to add a couple of things to Hanks post. He is a weath of information and I rely on him frequently.

One thing about diet...I am a vegetarian and I still had great difficulty with my ammonia level before transplant (Thanksgiving 2007). I also took lactulose every 4 hours...day and night and even towards the end had added xifaxin to my lactulose. Even with that...I ended up hospitalized several times with my ammonia in the 400's and comatose.

Your ammonia has to influence on your MELD. That is based on your protime, creatinine and Bilirubin. It will also change based upon your state of health. I was an 18 when transplanted.

Where is your husband listed? We had also checked into the Cleveland Clinic when I was considering a living donor transplant but finances and my not willing to use my own child resulted in my waiting for a donor organ. I was only listed 6 weeks when I got my liver. Previously, I ws listed in Oklahoma City and was listed there for 3 years before switching transplant centers.

Best of luck to you and your family. Stay in touch with us. We are interested in helping others out that are in our situation either personally or through family or friends.

Keep your spirits high...robin

[Suzi]

Thank you Robin and others for your welcome.
We are working through STrong Hospital in Rochester.   We have meetings this Thursday to talk about our options and maybe schedule.  I spent three days evaluating for donor status and am good to go for surgery.  Our questions right now are:

Should Dan undergo another round of interferon + ribervirin before transplant to drop viral load? He is type 1a, non-responsive and didn't tolerate it well the other two times tried.

He needs shoulder replacement surgery (pain levels are not conducive to any good quality of life...moreso than the liver disease).  Should he have that surgery before transplant...tax the ole liver and give him the new?

Hopefully, we will get some answers!

Congratulations on your transplant and new life!
Suzi

[willy]

Suzi, I seriously think that the question you are asking is a medical question best reserved for doctors that are familiar with all your hubbies medical records.....but having said that I'll throw out my 2 cents worth and any medical opinion will trump mine. I'm heading out of town and haven't re read all your posts

It seems clear to me via the transplant talk, ammonia issues that your hubby is pretty far advanced with liver damage.  You may have one shot left before a TP but I don't think it will be effective unless you were to get on an improved from of treatment ........but most of the trials exclude people with far advanced liver disease.  IF there was a trial that came up that he qualified for, that would be one thing.  My guess is that another round of the same treatment would simply bring the same results as past.  Your doctor can give you their best guess at his chances of success.

New forms of treatment should be out in 2-3 years.  I'm not sure that he can hang out that long without a TP but if so he may be able to clear and keep his old liver.  IF it is that damaged it may not regenerate much but it could.

IF he were to get a TP in the near future it is quite likely that he will be able to clear with one of the new treatments.  IF that were the case the liver would likely be able to regenerate (even if it was damaged a little waiting for TX) and he would likely have good liver function.

My guess is that IF we get some new and better forms of TX we will see a decreased need for liver transplants and the supply will therefore improve; along with wait times and fewer people turned away due to lack of liver donors. 

IF you can keep your hubby on a good diet andf keep him on his meds his chances will improve.  I think that things will improve greatly for us in the future.

best,
Willy

[hanklive39]

Hi Suzi!
A couple of things I'd like to share with you today... First of all, you mentioned that you're going to Strong Memorial in Rochester, NY correct? There's a Transplant surgeon that I know who works there, and his name is Dr. Jain... He's from India, and is one of the nicest person I've ever met in my entire life!!! He used to work here @ UPMC in Pittsburgh performing many, many liver and other organ transplants... Heck! He may be the "head honcho" @ Strong Memorial for all I know!!! He certainly has the qualifications to run the show over there, and there aren't but a handful of transplant surgeons that have his experience and talent!!!

You're in good hands if you're going through Strong Memorial in Rochester - that's for sure!!!If you happen to meet him somehow or happen to  have him as your transplant surgeon, please mention to him my name: Henry Cabrera from Pittsburgh... Also, Please tell him that Laurie who's also from Pittsburgh wishes him all the best & hugs and kisses (She's standing over me as I type this)


if your husbands liver isn't decompensated then he may indeed go for another round of treatment before transplant... However, if he has any amount of decompensation or excessive fatty tissue the chances are high that going back on treatment will not do much good for him, and if there is some fat here or there ,the virus will hide in the fatty tissue( as a survival routine) only to reappear from the fat after transplant!!! Returning to multiply even faster because of the then weakened immune response because of the anti-rejection drugs needed. Willy is correct in saying that your best advice will come from the Doctors you're currently involved with.

If your husband didn't respond ot treatment the first two previous rounds then he's considered a non-responder but, if instead he couldn't tolerate the treatment, then it could just be that he needs to be monitored more closely via a competent Hepatologist, and a proficient primary care physician that has enough experience to make the  necessary adjustments to stabilize his side effects from treatment so that he completes it... There are alot of "IF's" here to consider so, let the professionals advise you on the best course of action to take. Once the liver is decompensated, the liver ca no longer regenerate itself back to normal so, if that's the case, then get the shoulder surgery done before the transplant because his immune response will still be strong enough to protect him from infection... if he gets the shoulder surgery done post transplant, the procedure becomes very prone to infection because of the intentionally imposed - weakened immune response from taking the anti-rejection drugs.

Also, make sure you get him to a dentist pronto in order to do whatever work that needs to be done on his teeth  before transplant because the anti-rejection drugs will
slowly deteriorate his teeth post-transplant, and the work on his teeth will become that much more risky in the potential for infection.
Once the Doctors evaluate all of the results from the testing that was done on your husband, they wll be able to better advise you on whether or not to have another round of treatment or not ,and the key word here is whether or not your husband's liver is "decompensated"!!! Once you know that, then you can take the appropriate actions to resolve some of the current issues related to your husband's overall health.

In any event, I will pray for the best outcome for you, and your husband and the rest of your family

Respetfully,
Henry

[19Dragon52]

(((Suzi)))

Well, it looks like we are very close to being neighbors...I live in Niagara Falls.  You are welcome to PM me if you should want to exchange phone #'s or about anything else.  I have the double Freedom package so I can talk long distance for any amount of time.  I finished TX 16 months ago and am 1 year SVR.  1a...stage 2...grade 2.  I am not too up on T/P's but I am beginning to learn some things from reading the posts of our T/P members.  I'm just offering my friendship if you should anything, okay?

(((Hank)))

Dr. Jain also has an office here in Niagara Falls.  He does back up for my Gastro doctor, here along with his own practice.  He also shares an office floor with my PCP...Not long to be my PCP, though.

Small World isn't it?!  I was just posting to someone about how everyone you run into knows whoever you may be talking about in this neck of the woods.

Anyway...Much Love.....

[robin]

Suzi...So far as treatment and transplant, you will need to take that up with your hubby's doctor. Personally, when I tried the last time to treat, I was already listed for transplant and had to really go through loops to get the doctor to allow it. It turned out that I was hospitalized and nearly died because of the liver failure and had to quit treatment (I had cleared). Since I didn't get to do but 12 weeks, the virus returned. One thing, I had already had to have a TIPS due to liver failure and my MELD was higher than your hubbys.

Another thing is that since your hubby's MELD is not that high, and since he is responding to the lactulose and is only taking it twice a day, it seems that he still has some time. I ran a chronic ammonia in the 200's and for the most part, was able to function. About the last year before I was transplanted, I was not able to drive because of my mental status and had to quit work. I was much more confused than I realized and I think if people are honest about it here, they will verify that my mental status is much better now. I speak better, comprehend better and am more like my self prior to decompensated liver disease.

How long has your hubby been in decompensation? I know you can progress at different rates but from the time my MELD was a 12 until I got to be an 18 and received a transplant was about 3 years. My doctor felt I progressed pretty quickly but there were things they did to postpone transplant like the TIPS.

Personally, the tranplant is much harder than I thought it would be. I try to remain positive about things but I don't know if I would do it again. It was so much more than I ever expected and I had a short hospital stay, surgery time and have had no problems with recovery. After 10 weeks, I'm still not able to drive and the side effects of the meds are no picnic. I just want to be honest about it and am not trying to scare anyone off. It is also harder on the donor than the recipient because the donor is well already and the recipient will begin to feel better immediately after surgery.

Is there a reason for not waiting for a donor and going with a living donor? I'm just a bit curious because there is pretty much a given that if you still have hepatitis then the new liver will be infected and that will eventually lead to cirrhosis of the new organ. Thinking here that if you postpone as long as possible then you also postpone the need to re-transplant in the future.

Be sure to talk it over with your doctor and also do your own research. Talk to people who have donated and received a liver. If you want, you can PM me and I'll give you my e-mail addy. Hey, it may even be posted in my profile, I don't remember. I would also be willing to give you my phone number if you want to talk.

Best of luck and keep your spirits high...robin     

[Suzi]

Robin, Thank you for your candor.  There is so much to think about.  What is TIPS?  I'm not familiar with that term. 
We have tossed around the idea of waiting for a donor, but Dan's shoulder is so bad and they really won't do that surgery because of the compromised liver...you start questioning quality of life...three more years waiting for transplant when you can't hardly do simple chores because of the pain that follows for days leaves one wondering....he has been in chronic shoulder pain for over 10 years, has had partial replacements in both shoulders; the prosthetic shifted in one and is constantly grinding.  Muscles are so atrophied from liver disease that they are only semi functional .

We will be seeing our regular gastro md Wednesday and the transplant team at Strong on Thursday.  Around every corner there seems more questions!  It's a crap shoot for sure.  We have had many discussions on the pros and cons, many of which you have mentioned.  Whatever I think, it has to be his decision.  We appreciate all of the honesty and expertise that you and everyone else here at the forum are willing to share. Thank you.  Suzi

[beingbecky]

Welcome to thte site.



Becky

[robin]

Suzi...I hope that you get your questions answered when you see the tranplant team. Sometimes the waiting on answers is harder than not knowing.

A TIPS is where they put a shunt from the portal vein through the liver and route the blood flow directly to the brain. My liver was so scarred the blood wouldn't pass through it and I was constantly bleeding out. Once they put the shunt in, the blood was able to circulate through my body. The ascites and GI bleeds both disappeared after the surgery.

I'm surprised they say they can't do his shoulder surgery if his MELD is just 12. That doesn't even put you as listed...you need a 15 for that. Are there other reasons that he can't have surgery other than his liver? You may ask them about that again when you go to the appointment.

Good luck to y'all...keep your spirits high..robin