Hi Everyone!

Hi Everyone, I have a husband with end stage liver desease, diagnosed in June of 2010. It's been an emotional time for us both. Financially it has wiped us out. He has gotten thru the counseling and all the tests to get on the list and was denied due to his meld score being too low. It really put a wrench in our positive attitudes. He was told it would be sent back in again in a few months. He is a Veteran, so he is medically taken care of. Our problem is getting the medications straigtened out. He just spent 3 days in the hospital. His GI doctor had him on too strong of a blood pressure medicine (it had diuretics in it too) and he wasn't getting enough oxygen to his heart. We have struggled with this for almost a year . . and it is very frustrating for us both. He goes from retaining water to cramping from being so dehydrated. Then the itching from the toxins! The lactalose has helped with the itching and the cramping has slowed down, because he is on such a low dose water pill, but he is still bloated and holding water. His diet has been very strict!! Probably why the meld score is low (it's actually gone down since he was diagnosed). He was told to cut back on his fluid intake . . he doesn't drink much at all. A few bottles of water a day, 4 oz. coffee, 12 oz gatorade, and 12 oz of 2% milk. From reading on this forum, I see he should not have any beef. We only eat it 2 -3 times a week,(gr beef) but he won't be eating it all any more. He lives off fruit and vegies. we cannot afford organic. Getting help with food and finances has been non -existant. It's all really over whelming. I know it's only going to get worse    help!!

Hi Connie, thanks for the quick response and good luck with your evaluation and getting on the list.

My husband got HepC from a blood transfusion as a teenager, he was treated, and it was dormant in his body until about 3-4 years ago. He did drink, mostly casually, but sometimes to the extreme. I didn't recognize the symptoms, thought his itching with no rash was stress from being self employed. The diagnosis was a shock!! He has been alcohol free since June 18,2010 and smoke free since Oct. 22, 2010. He is on a low sodium diet, blood work shows sodium always low. All vegies and fruit are fresh or frozen. We eat no processed food either. I won't buy food with high sodium content.

I think his meld score is 11. His doctor doesn't share that with us as often as I would like. I'm going to start asking for it after every blood work. He has had a recent MRI and is cancer free, but blood indicators show it is probable that he will get it.

Because he is VA, there are only a few hospitals that do the transplant. We are hoping for a yes from WashingtonDC and a quick evaluation from one of the hospitals and a short wait for a liver.

Again, I wish you good luck with your evaluation and a speedy find for a liver!

Cable Poodle,

Glad you have found us! I, too am a caregiver. My husband has HepC/Cirrhosis, and has been on and off the list for various reasons from health issues, to financial issues. I know the financial side of this is VERY overwhelming! Last MELD for hubby was 8, and then he was taken off the list last month (I live in a region where his hep doc will go ahead and list, even with a low score). He was removed from the list because he lost his SSI benefits (and Medicaid) because my unemployment benefits (I was laid off a year and a half ago) were too high! Crazy system, huh?? At any rate, we are working on that end of things. You are doing all the right things with the diet, etc.

Unfortunately, at times, it's just a waiting game. We get bloodwork done every 3 months to monitor things, etc. Don't forget to also take care of you through this!


Read through some of the educational threads, which have been a lifesaver for me! It has armed me with information for when we go to the doc, as sometimes the doc just talks "over" us.

Again, I am glad you have found us, but sorry you are dealing with this dreaded disease!

Mer

Pam, what VA facility did Ron have his transplant at?

Mama Lama FL, that Cancer word scares the hell out of me!! So many people I love have died of Cancer, but it may turn out to be a good thing in this instance. The MRI last week showed no tumors, but blood work shows cancer indicators. His doctor says he has tumors that are undectable, so considered cancer free. It's only a matter of time. My husbands adema is terrible . . fatigue too . . mood is not good either !!LOL!!

Did your husband have his transplant in FL?

Glad your both doing well . . best of luck with a speedy recovery.

thanks for the positive outcome . . it's hard to stay focused in the positive with a list trun down.

Cable Poodle

Hi Cable... its a temporary turn down... just keep goin as u r... keep ur chin up... and come back often.. Sandia

Debbie,

The "financial" reasons my hubby was bumped off the transplant list for was the fact that he lost his insurance, because the SS office said my "income" (unemployment) was too high!! I get my last UE check this week and then I have maxed out. So, we will go to SS office and fight with them, and I have even looked at the possibility of divorcing him so my income does not affect him....it's a mess!!!

So glad he's a vet, too!!!

Mer

We have discussed that too . . I think legal seperation and a different living address is all that is needed. There is even public storage that use a physical address and then a # like it is an apt. for a PO Box. It's worth checking in to.

It's a shame we give so much to other countries when our own people are doing without. having worked in utilites, outside, I have traveled alot. The homeless i have seen in the big cities . .unbeleivable. If they cut my husbands SSD . . we would be homeless in no time. We are still fighting with the mortgage company over fees they charged us from when we were behind a few months ago!! The modification program is a joke!! We spend 25% of my ck on fruit and vegetables!! They cut the food stamps when he got SSD even though it doesn't even cover the mortgage.


Our system needs help!! The people fixing it have never been in our shoes and never will be . .thats the problem!!

When my husband was diagnosed, he quit drinking and has never looked back. He doesn't even care about being around other people that are drinking. I have never been a big drinker either . . birthday, New years, and then its usually just 1 or 2, so it was easier for him probably than people that need to quit and are around a spouse that still drinks. Smoking was another story!! He was a little touchy to say the least, but he did it!! I don't smoke either.
All of this has really put a whammy on our relationship . .both of us are a little short with each other . . our families are alot of help emotionally.

Having lost my mother to liver cancer in 08, that word terrifies me!! Connie, my prayers will be including you . . may you soon be healthy and cancer free!!

Pink Grandma, thank you for the positive encouragement. yesterday when I found you all, I was having a very bad day. My husband was grumpy, swollen, and short with me about everything. He has always been the "Man", and it's killing him emotionally to have me working for very little pay and then taking the load of cooking, laundry, cleaning, and trying to make him comfortable on top of that.

When Comcast upgraded in 03 to 05 in south FL, I ran crews for the main U/G contractor working for Mastec. Since my husband was diagnosed I have had to take lesser employment because I am not a able to travel for work . . I am affraid to leave my husband. It's really put a wrench in our finances, but the out come will be worth it.

After I visited with everyone yesterday . . everything changed. I know I am not alone!! Thank you to all of you!!

Are you with Comcast?

Hi Debbie, I too was in the same situation as your husband and 1st hand knowledge tells me Hell would be a holiday compared to ESLD and it's symptoms. You have said you can't afford organic ,don't lose any sleep over that. I have had organic non stop for 8-10 months .Fruit ,meat the whole box and dice and they haven't done diddly for me .Like your husband I'm waiting for a liver transplant ,I'm about half way through it. Still have the shrink , surgeons etc to go. I personally can't see if they know you're crook and they obviously do why you have to go through all this crap. I'm not a religious man but I hope the best for you and your husband.
Mick