husband w/ liver disease

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mer
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Date Joined Aug 2008
Total Posts : 613
   Posted 8/30/2008 9:42 PM (GMT -7)   
My husband was diagnosed 4 years ago w/ stage 4 cirrhosis of liver, and hep c. In the last year, he has progressively gotten worse. We were evaluated in January for transplant, accepted and placed on the list. In July he was put in "inactive" status due to possible issues with pulmonary stuff. We have been in and out of the hospital alot.....ammonia level jumping up and down, encephalopathy is getting worse, he also breaks out with vasculitis. Oddly enough, he has never had a presence of ascites although his belly is HUGE!! He complains of his side hurting and legs hurting and the pain meds do not seem to help. This has been such a roller coaster ride, at what point do I know that we are actually getting to ESLD and too far past the "window of opportunity" that he is a good transplant candidate????

mer
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Date Joined Aug 2008
Total Posts : 613
   Posted 8/30/2008 10:12 PM (GMT -7)   
In addition to what I stated above...I also feel like I am beating my head against the wall most days. He also has a good gene/bad gene for alpha 1 antitrypson deficiency....two brothers with liverr disease...one died ....on transplanted 18 years ago. This is all very scary to me becuase I was not around when his brothers were ill and his family seems to be too scared to say or do anything to help.....

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 8/30/2008 10:33 PM (GMT -7)   
Hello Mer and welcome to HealingWell. I am so sorry that your husband has this dreadful disease.

My husband died from it in April of last year. In fact we have quite a few members whose husband's have it currently.
My husband made it to the list and then taken right back off a few weeks later. His liver cancer multiplied too much.

He like your husband also he had a huge stomach but no ascites problem. And he also had the other problems also like your husband. As far as giving up completely .........I wouldn't until they say that he is no longer a viable candidate for transplant.

What exactly is his possible pulmonary issues? If they weren't clear about what they are ...........have them to clarify it for you if needed. Ask them what needs to happen or be done for him to be activated again. Sometimes you need to be forceful with the doctors......You are hiring them not the other way around so don't be afraid to step on some toes. It's your husband's life on the line.

Take care......thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 8/30/2008 10:50 PM (GMT -7)   
I just read your other post on the pulmonary issues on the other thread. We must have been posting at the same time. Is he taking any diuretics like Lasix or Aldactone? When my husband had any problems breathing like that his hepatologist would up his dosage for a little bit on both until his breathing got easier. Ask his doctors about it. It's a tough balancing act that they do with all the medications to try to keep the comfortable and stable.

Thoughts and prayers.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

Post Edited (Pink Grandma) : 8/30/2008 11:53:29 PM (GMT-6)


mer
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Date Joined Aug 2008
Total Posts : 613
   Posted 8/31/2008 8:09 PM (GMT -7)   
Thank you!! I never even thought the pulmonary issues could be something that needed to be treated w/ diuretic. However, they just put him on blood pressure medication which also has a diuretic in it and it seems to be helping a little....he still has a hard time getting a good breath. The pulmonary doc stated he has "mild obstructive lung disease" (he was a smoker and quit last december), but that it should not be anthing to keep him from getting a transplant. In the meantime, we have also seen a rheumotologist and now they have a hemotologist in the mix. They are trying a new chemo drug to help with the vasculitis since his auto immune system is so out of whack. We see the hepatologist on the 18th of September, and I am making a list of questions to ask......this is really such a roller coaster ride. Right now, he is in alot of pain and the tramadol they have him on just does not seem to be helping much at all.....I will say that we are in the Dallas, TX area and are being treated at Baylor, which is a wonderful hospital....we are blessed on that aspect...just all the hoops you have to go through is crazy!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/31/2008 9:32 PM (GMT -7)   

Welcome to the forum, Mer.  I think if you will read the educational topics on this forum, such as Symptoms of Liver Disease, it will help you a lot in understanding what might be ahead.  It sounds like your husband (and you!) have been through a lot already.  I'm betting the BP med with a diuretic effect is HCTZ (hydrochlorothiazide.)  I was put on it for BP control some years ago, but it never did a thing for the excess fluid when I had problems.  I had to go on Lasix and Aldactone (which I'm still on) to get the edema and ascites under control.

Hugs,

Connie


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 9/1/2008 7:26 AM (GMT -7)   
Hi Mer, Welcome to the forum. I agree with you. This disease is one big roller coaster ride. My husband has cirrhosis and hep C. His main problems have been encephalopathy and ascites. Lately the encephalopathy has been much better. I thank God for that and pray for it to last. Now that the confusion is not so bad, he is very moody. I will take that any day over the confusion.

I am glad that you found us. As I guess you have already learned, there are many wonderful, caring people here with tons of knowledge. You will be in my prayers.
Butterflythree
 
There is always hope!


mer
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Date Joined Aug 2008
Total Posts : 613
   Posted 9/1/2008 12:43 PM (GMT -7)   
Thank you! Yes, I am finding that there are many, wonderful caring people on this forum. My husband has been dealing with encephalopathy alot as well....sometimes severe. Like you, when he is "with us" and not off in left field, it is much better than the latter, but I am finding anymore that those days are fewer and far between. So, my plan for us as a family is to try to do something special as a family on those days.....because they are so precious. The BP medication he is on is hydrocholorot- 12.5 mg.....anyone ever heard of this?? Also, as I look back in my notes, they were trying not to put him on diuretics because of concern for the strain on the kidneys. He has had protein in the kidneys and blood in his urine, and a kidney specialist is looking into this, does this make sense?? Could the kidney issues be as a result of the liver disease??? Seems the longer we go and the further we go into this, more issues are coming up. His body is going through so much.....no wonder he's grumpy all the time!! Any input would be more than welcome....thank you!! I will definitely check out the informational threads on this forum......

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/1/2008 1:14 PM (GMT -7)   

Mer, the med you listed is a shortened form of what I wrote in my post above:  hydrochlorothiazide, commonly abbreviated to HCTZ.

Yes, his kidney issues could be a result of his liver disease.  It would be advantageous for him to be evaluated by a nephrologist (kidney specialist.)

Hugs,

Connie


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/1/2008 5:35 PM (GMT -7)   
Thank you, Connie!! Keeping all these meds and specialists straight is a full time job in itself!! We did see a nephrologist a month ago, and he did a 24 hour urine protein test and also some bloodwork. He said he did not feel comfortable doing a kidney biopsy because it is risky with liver patients. I called a week ago to get the results of all the tests and have yet to get a return phone call!! But, he did say that one of the things he was testing for was MPGN...probably secondary to the liver disease(??). I will call tomorrow and push them for an answer on the results....I have been slacking in my end of the follow up, because we went back in the hospital, etc.....

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/1/2008 9:00 PM (GMT -7)   

Mer, give the nephrologist's office a call.  They surely have the results by now!  A copy should also be sent to his hepatologist, too.  I haven't a clue what MPGN is...maybe a blood level of several things.  It's not in my medical abbreviation book, either.  If you find out, let me know!

Hugs,

Connie


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 9/2/2008 3:24 AM (GMT -7)   
Hi Mer

Just wanted to add my welcome to the forum. I hope you find it as helpful as I have. Good Luck on this journey.

Lucy

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/2/2008 7:32 PM (GMT -7)   
Thank you for the warm welcome!! Connie, I did call the nephrologist today,and yes, they had the results. Nothing remarkable that needed immediate action on their end....sent the notes to our hepatologist. So, we see her on the 18th. In the meantime, they are starting this Rituxan infusion to hopefully get the vasculitis/auto immune issues under control. That is caused by a presence of cryoglobulins in the blood (which is a type of protein or antigen) and is common w/ Hep C patients. I will also ask his primary care doc to check and see if he is having any insulin issues which could also be a result of the liver disease, and could cause protein in the urine.....I swear, by the time we get through this part of the journey, I feel like I should have a medical degree!!! HA HA!!! Hope you are feeling well!

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/4/2008 7:24 PM (GMT -7)   
Quick question for all.......with the liver disease, is it common for the patient to get dehydrated very easily?? This is something we seem to be dealing with and my husband got a touch of a stomach virus yesterday and we ended up in the ER due to him getting so dehydrated so quickly!!! Pretty scary stuff!!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/4/2008 8:48 PM (GMT -7)   
Mer, I suppose it's possible.  I know that I've always been encouraged to drink a lot of water, which is not my favorite thing.  I'm now getting spring water and I carry a bottle of that around with me, everywhere I go.  I also mix Crystal Light with it to make it more palatable.  Since I'm on Lasix, I could get dehydrated easily, especially in the FL heat.  Of course, sometimes when ascites and edema are bad, or there are kidney problems, a patient will be instructed to reduce fluid intake.  It all depends on the individual.  I've read that by a time a person (anyone, not necessarily a liver disease patient) realizes they are thirsty, they are already dehydrated.
 
Hugs,
Connie
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