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starting to learn how to cope with dads liver disease

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Posted 2/15/2011 6:11 AM (GMT 0)
My dad is currently in the hospital for liver disease, and it sure has been an up and down roller coaster. This is his third week in there the first issue was fluid building up around his lungs, making it hard to breath, until finally they had to put in a tips shunt, wich actually seams to be working causing most of the fluid to stop. And now his amonia levels are high, it really seams to be just one thing after the other. one day the Drs are happy with how things are looking, then the next day they are not so happy any more. Always just back and fourth. Any help would be greatly apreciated. Thanks
Posted 2/15/2011 2:14 PM (GMT 0)
BJ.... that's kinda how this disease goes... up and down... my partner had the TIPs operation and it was successful for quite a while. others have had that operation and it has made quite a difference. Timeless can speak to that..the ongoing medical will always be there... sometimes it's a matter of interpreting what the doctor is saying.... talking here about the tests.... procedures etc will help... learning from those who have gone through it... or have knowledge...it helps to just realize you're on a trek...and it's gonna be frustrating... learn to deal with it one moment at a time... one doctor at a time..prepare yourself for what you can... and handle the rest one step at a time...this forum will be here for your support and education... Sandi
Posted 2/15/2011 7:08 PM (GMT 0)

Bj, welcome to the forum.  Sandi is right--liver disease is a roller coaster ride.  Different types of liver disease will require different treatment, but it's also a very individual thing.  Each person experiences it differently.  May I ask what caused your dad's liver disease, how old he is, etc.?

You might want to read the information in the folder at the top of the page, entitled Hepatitis Resources.  It's not just about viral hepatitis and will answer many of your questions.  Also, read the posts of others here to get an idea of what to expect, though everyone is different.

Hugs,

Connie

Posted 2/23/2011 1:18 PM (GMT 0)
Thanks for all of your thoughts, Connie my dad is 62 and he got Hep c from a former girlfriend and she got him using drugs, He was only diagnosed with hep c about 10-12 years ago. and the biopsy showed he was at the stages before cirrossis. And about two months ago he was admitted into the hospital with severe abdominal pain, and they had to do exploritory surgury, and after a bunch of analizing this and that it was determined he had a blood infection due to a cat scratch from one of his cats. And that is what caused the liver to actually start to get worse, it started atacking his internal organs. So anyways in a nutshell that is pretty much how everything started. Also with my dad having these issues me and my brother are starting to learn very quickly that all we can do is take one day at a time and pray. Brad
Posted 2/23/2011 10:31 PM (GMT 0)
"he got Hep c from a former girlfriend and she got him using drugs"

Brad, insert boyfriend and you have my story, too. Do you know if he ever had hep C treatment? If he recovers from this crisis, that might be something for him to try. There's a new treatment that combines 3 drugs and is showing a 75% clearance rate. It will become available in the second half of this year (hopefully.)

Please keep us updated.

Hugs,
Connie
Posted 2/24/2011 1:08 AM (GMT 0)
Connie my dad did go through those hep c drugs and they didn't make enough of a difference to keep taking it, he was on them for a year in the very beginning. His Liver Dr was talking today that he may need to be referred to a transplant center. What does that entail? do you go to a transplant center and stay there until one becomes available? Any help with understanding what the transplant process entails would be greatly appreciated. Thanks Brad
Posted 2/24/2011 1:44 AM (GMT 0)
The new treatment isn't available yet.  It should be in the 2nd part of this year.

Referral to a transplant center means going to it and having him thoroughly tested:  Blood work, scans, pysychological, ECG, etc.  More than once.  Then he will be assigned a MELD score which determines his placement on the transplant list (a high MELD means higher placement.)  It's all done as outpatient.  For all the info, check out Rick's thread on Pre-Transplant.

Hugs,

Connie

Posted 2/25/2011 7:45 PM (GMT 0)
I just wanted to say thanks for everyone's words of wisdom, My dad finally made it into the Dr yesterday and they did a chest x ray and said the tips shunt is working normally, that they just need to go into the suture sight where the drainage has been coming from and stitch up the inside as well as restitching up the outside. So that is more pleasing news then expected. I still realize that this is still a one day at a time thing, he has went from being stable to unstable very quickly, and then back again. So it looks like he will finally get to go home today after more then a month, he is very happy.
Posted 2/25/2011 8:24 PM (GMT 0)

BJ, that's good news that your dad has stabilized.  He needs to take very good care of himself, including NO alcohol and NO beef (if he absolutely must have a burger or steak, no more than once a month.)  He needs to be on a low-sodium diet to prevent swelling.  That generally means no canned goods, especially not soup, unless they are no-sodium or low-sodium.  These are things that they may not tell him.  The very best diet will be high in fresh fruits and veggies, fish, beans, etc.

Have they referred him to a transplant center for evaluation?

Please keep us posted on his progress.

Hugs,

Connie


Posted 3/2/2011 2:36 AM (GMT 0)
My dad is finally home now, though all he wants to do is sleep. I do know that this is one of the problems with liver failure. the weird thing is when he was in the hospital, and the rehab place he could never sleep and was always up walking around, now that he is home he just wants to lay around and sleep. I wonder if he gets up and goes for walks if that would help with his tiredness. I am taking him to see the Gastroenterologist tomorrow, hopefully that goes well.
Posted 3/2/2011 4:19 AM (GMT 0)

I agree with Rick.  Liver disease causes chronic fatigue and sleep is either hard to come by or one is falling asleep without wanting to.  Most have their days and nights mixed up.  I have trouble getting to sleep, but once there I can sleep for 12 hours and usually do...getting up once to go to the bathroom.  I have been prescribed Flexeryl, melatonin, and now Trazodone for sleep.  I just had to have the Trazodone dosage increased as I've built up tolerance quickly...which I tend to do with most drugs.

When I am physically more active than usual, I do sleep better.

Hugs,

Connie


Posted 3/7/2011 7:17 AM (GMT 0)
My dad is back in the hospital  yet again, he was twitching really bad last night, so I called the gastro Dr and he just said to watch him and wake him up a couple of times during the night wich he did, and this morning i woke up and he was laying in another room in his own feces. I called an ambulance and they took him in, his amonia level was 114. the other blood work came back looking pretty good. his meld score the other day after they did the first round of blood tests at his check up with the gastro dr was 11, and he said some improved liver function, so I thought things were hopefully starting to look up alittle, and this happens this is very frustrating. Hopefully the drs will be able to get his amonia levels back down and he will come out of this really confused state. all I want right now is for him to just get stable and stay that way. mad
Posted 3/7/2011 2:50 PM (GMT 0)
Hello BJ,  so sorry that your father is having such a rough time.  Hang in there guy.  

Is your father taking Xifaxan?  It's is an antibiotic that helps with the encephalopathy.  If he is not,  ask his doctors about it.   

Take care.........thoughts and prayers..........

Posted 3/7/2011 4:26 PM (GMT 0)
yes he is taking Xifaxin, which actually is very expensive 1500 for a 30 day supply, the night before they actually increased the dosage of the lactulose to 3 times a day which obviously did not help. he was actually doing pretty well until he took his sleep aid. I think I am figuring out that things such as sleep aid really cause a stronger effect with people that have liver problems. Also does any one have any thoughts about getting a second opinion from a different Dr to see if another one might have any different ideas, or if we should just stick with what we have. I also want to say that this sight really does help to talk to other people going through the same issues. Thanks again, Brad
Posted 3/7/2011 8:51 PM (GMT 0)

Brad, I'm very sorry to hear of your dad's downturn.  As to a second opinion, if you can find someone who has privileges at that hospital and can see him while he's in the hospital, that would be a positive thing.  However, to start dragging him to another doctor, given his current condition, may just be too much for him.

Also, regarding the Xifaxan, is his insurance paying for it?  They will usually deny coverage for Xifaxan because of the expense.  But if the doctor writes a note saying this is absolutely medically necessary for this patient, insurance will likely approve it or at least pay for part of it.

Hugs,

Connie


Posted 3/8/2011 3:25 PM (GMT 0)
Yes his medicare did pay for it, though he is about to reach this thing called the donut hole i think its called, so I have been checking with the VA clinic to try and get it for him. He is back to a pretty normal state now. Hopefully they will be able to keep his ammonia level stable, I know that ammonia levels going high is a side effect from having a TIPS Shunt. Any how thanks for the advise.
Posted 3/9/2011 1:04 AM (GMT 0)

Thanks for the reply, Brad.  Is he still in the hospital or has he been discharged?  Glad to hear he has normalized.

Hugs,

Connie

Posted 4/7/2011 2:11 PM (GMT 0)
Hi everyone it has been alittle bit since I have been on here, my dad has been out of the hospital for roughly a month now doing relativly good, though within the past week or two he has developed a couph and some pain on his right side, so we went to see the gastro DR yesterday and his belly and upper right area around the lung is filled up with fluid once again. He has not had really any fluid issues for probably 1.5 months or so just alittle swelling in the legs, so the tips shunt seemed to be working, I guess I was wrong. Anyways the Dr did not seemed to be concerned since he is not having a hard time breathing as of yet, so he is taking him off the Spironolactone, and placing him on Lasix if thats how you spell it. I hope they can control this without him having to go back in the hospital and having to go through having that chest tube put back in, redface he said that was one of the most painful things he has ever had to go through. This just almost feels like we are starting at square 1 again. Thanks for listening Brad

Posted 4/8/2011 1:30 AM (GMT 0)

Brad, thanks for the update.  Usually, Lasix and Aldactone are given together...or Lasix and a potassium supplement.  Lasix (a strong diuretic) leeches potassium from the body.  Aldactone (a mild diuretic) is potassium sparing.  In concert, they preserve the normal potassium level.  Your dad should do better with the Lasix, but make sure he is also taking Aldactone or a prescription strength potassium supplement.  Get copies of his blood work and keep an eye on his creatinine and BUN.  If they get too high, it's an indication that his kidneys are being affected in a negative way by the diuretics.

Hugs,

Connie

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