how to help my husband through cirrhosis?

[beekaboo98]

My husband has cirrhosis, he is currently on the transplant list. He is on alot of medications and does what he is supposed to be doing, but is there anything else I can do to help him cope with the symptoms and side effects of medications.  He still is not sick enough to be considered for a liver and he is miserable.

[HectorSF]

Glad to hear your husband is doing his part of taking care of himself while he waits. Between the symptoms (such as chronic fatigue, his body changing physically) of advanced liver failure and the side effects from the meds, it is difficult managing it all. I am having similar issues myself. Feeling down is very common during such a stressful time. Give him credit for all he does do. Keep encouraging him to take care of himself as best he can. No one ever planned on this happening to them. It is something we are all learning as best we can how to manage.

As long as you feel that medically your husband is getting the best care possible, than I would suggest...

Reach out and interact with others who are going through the same experience.
Find out if the hospital he goes (where he is on the transplant list) has a Liver Transplant support group (Go to the hospital's website, look for "support groups) for those who are waiting for a transplant. The support groups usually include patients who have had a liver transplant, as well as those waiting. It allows patients to hear about the liver transplant experience from the patient's perspective. It can also help you prepare, both physically and emotionally, for the changes you'll face before and after a liver transplant.
If the hospital doesn't have one there is probably one in your area, maybe at another hospital if you live in a big enough city?

Not feeling isolated and alone during this stressful time will help a lot mentally and lighten the load of this life changing operation. You have enough to deal with. Please find others to share your concerns with.

Best of luck to both of you!

Hectorsf

[beekaboo98]

Thank-you Hectorsf,  the waiting is very hard.  His meld score is not high enough for them to start actively looking for a liver and he's still having all the symptoms and yes the side effects of the medications.  I try to encourgage him and reassure him that yes he will get a liver.  But sometimes it seems I can't do anything right.  I try to remember he is sick and frustrated and depressed and angry and try not to take things he may say personally.  There is a support group at Stanford but we live about 2 hrs away so with my job and taking care of him, I can't go.  He's not into support groups anyway.  He's a very private person.  It's just the two of us with no other family.  We live in a small town.
Is there anything special you do to cope with the side effects of medications and the symptoms?  He does have good Doctors and they are very caring.  But I was just wondering if there was anything else I should or could be doing?

Beekaboo98

[orphanedhawk]

This may not work for your husband but I had a live liver transplant. My daughter was my donor. One of the main advantages is not having to wait on a list for your tp.  Although not all tp centers provide them and of course there needs to be a suitable donor.

Prior to my tp, I kept active on the days that I felt well enough.
I'd walk as far as felt comfortable.  Exercise is good for all of your body and mind.
I  did crossword puzzles, read books, watched tons of movies, did anything I was still able to do besides sleeping.

Get him outside breathing fresh air even if its just resting on the deck.
Basically try anything to keep his mind and body as active as possible.
For me, humor, yoga, meditation, all helped.

Good luck,
OH

[HectorSF]

orphanedhawk-
Thanks for the great advice. I think you are 100% correct. Staying active is a great mood lifter. Sometimes I get lazy myself and rather keep to myself. But whenever I do push myself and get out and be social I feel so much better and it takes my mind off of the illness. Also I like what you said about sleeping. If I had a dime for every time I napped too much I'd have the cash to pay for a transplant!

beekaboo98-
I understand what you are saying about your husband being irratable. Disease and peace of mind don't come easy. I can assure you it's not you. You have a lot of responsibility being your husbands care giver. I admire your courage and tenacity. You should be very proud of yourself for handling such a difficult situation. Give yourself a pat on the back for all you have done. You are a unsung hero in my book. Any disease is a challenge none of us learned how to prepare for. It is a tough road. A daily battle. We try to do our best. Not perfection, but our best.

I used to be more introverted myself but this illness has taught me that we can't do it alone we need the support of others be it loved ones, medical support, other patients going through the same fears, and worries. Disease can be a humbling experience. We aren't invincible. Physical and mental pain is no picnic. It raises the bar. It challenges our own inner strength and beliefs. But it can also bring wisdom and make you get your priorities straight. Know who your real friends are. Who cares and who doesn't. I think that is a good thing.

I wish I could say something to help but I'm as grumpy and obnoxious as anybody (maybe more so) when I feel lousy. I can only second what orpanedhawk said. I think there is a lot of wisdom in what he said. It sounds simple, but if your husband can do some of the things he suggests I think he will feel a whole lot better.

I'm glad your husband has good care at Stanford. I go to UCSF in San Francisco and they are great. Imagine if we lived in Timbutu. I am grateful we has such great hospitals and medical care here in California.

Cheers!

Hectorsf