Vietnam Vet ESLD

Gosh, I don't know where to start - so please excuse the long post.  I have a rollercoaster of feelings.

History:

My husband, Ron, is a Vietnam Veteran; he was a helicopter gunner and spent many of his days flying through Agent Orange.  He cleared the brush of the enemy and picked up the injured.  Ron is an only son, but volunteered to go to Nam anyway (for those who aren't aware, only sons were not required to go to Vietnam - because they were only ones to carry on their family name).

Ron and I married in 1992; shortly after we married I suggested he go for a check up (he hadn't been to the doctor since he was in Nam 1967).  Standard blood tests showed issues with liver enzymes - but since we had no idea what that meant, and the doctor didn't seem concerned - Ron was checked every 6 months for a couple of years before he was diagnosed with Non A - Non B Hep.

At that time, Naomi Judd, had just been diagnosed - that's all we knew about the disease - we felt like it was a death sentence.  Ron was included in several interferon tests and he was a non-responder.  Years passed - 15 years passed and we went on with our life.

A few years ago he became fatiqued, it was a gradual happening, our weekend projects turned into working on the house on Saturday and Sunday Ron slept all day.  His internist turned Ron over to a Gastro guy....tests and more tests....several liver biopsies and MRIs over the years.

His first bout of ascites - he was hospitalized and tapped.

MELD SCORE = 8

Then he became anemic (developed diabetes), blood loss from somewhere internally - they couldn't find from where.  One evening he spit up blood - we went to the hospital and were told it was varices...he received 7 bands and an MRI - they found a mass in his liver.

We were referred to the transplant team at Piedmont Hospital (Atlanta) - no one ever said CANCER, but they quickly put Ron through the battery of tests and August 20, 2010 he was put on the transplant list.

 MELD SCORE = 22

We expected he would be transplanted at any time - but the months rolled on - monthly visits to the transplant team - and in November 2010

MELD SCORE = 25

We were assured they had never seen a MELD 28 and we should be ready at any moment - Ron was #5 on the list....by the week before Christmas he was #1 (for his blood group) and we REALLY thought, this is it - ANY MINUTE!

Fatigue continued, we watched his salt intake, new medications to relieve the pressure on the varices, then the ascites set in again - the fluid was tapped and after two weeks it's back.  They upped his lasix and aldactone.  Last week the doctor said Ron shouldn't drive anymore because of the enchepalopathy.

Each and every visit to the transplant team, we are encouraged, but really, they don't tell us anything - just 'any time now'.

If he doesn't receive a liver by February his MELD score will be raised to 28.

I watch Ron become sicker and sicker everyday.  We have an appointment today and I'm not going to take 'any time now' - I want to know Ron's prognosis - how much longer does he have if the liver doesn't come 'any time now'?

I realize we're fortunate, because we're on the list, he's not an alcoholic, we have a bright outlook - but my mind keeps going to very dark places - even though there is a light of hope.

Don't get me started on the anger I feel - I'm not sure why - but I'm so angry.  We've been married for 18 years and I've taken care of my husband, sometimes, not feeling like a very good wife, but at times I resent him.  We haven't had a close intimate relationship in years (I'm 10 years younger than him) - and I miss that.  I'm not sure we can ever find that again because I feel like his mother and I'm his caregiver.  Does everyone have these feelings of resentment - I have been told it's a self preservation method.

Anyway, thanks for getting through this.  I appreciate your forum.

Welcome, RCmoonpie!  (My Alabama-born aunt used to sing a little ditty..."Give me an RC cola and a moonpie, singing Mabel on the hill.")

You and your husband have both been through a lot.  I wish you had registered at another transplant center, as well.  The odds of getting a liver more quickly might have been increased.  I know that liver transplants here at the Mayo Clinic Jacksonville (FL) have the shortest wait time in the nation...generally about 2 mos., once the testing has been done.  It really is unfair that they have kept you hanging with the promise of "any time now."  And then there's Emory...I'm sure they do transplants.  Whether or not your husband would be well enough to go through testing again, plus travel, is doubtful from what you say...unless he could be accepted based on the current tests and MELD score.

Most of the posters here are caregivers, though I have hep C, cirrhosis, and am a liver cancer survivor (thanks to Mayo.)  So you will get a lot of support here.  There is a stickied thread at the top of the page entitled Caregivers Sharing.  Though it hasn't been active lately (I think people just forget it's there), there's a lot of good info in there for you.

I am a little confused about your time line, as Hep C had a name in '93 and interferon was the standard treatment by then.  I was diagnosed in '93 and tried interferon later that year and again the beginning of '94.  By 2 mos., my liver enzymes were actually going up and my white count plummeted both times, so treatment was halted.  I'm hopeful about the new treatment coming this summer, as it adds a protease inhibitor and only has to be taken for 24 wks.  However, your husband is way too sick right now to do treatment.  IF he gets a liver transplant, he may need to do hep C treatment later on.  As you are probably aware, a transplant does not rid the body of hep C.

It's totally understandable that you are angry, frustrated, and upset in general.  Take some frequent deep breaths and remember to take care of you in all of this.

Hugs,

Connie

Oh, how much better I feel after reading your posts.  It's so easy to lose myself in his disease.  When I married my husband he was a strong 'macho' guy, I never feared a thing, I knew he would take care of me.  It's difficult to see him so ill - I think that's what scares me so much.

If you don't mind another story....I hope it will help you see where I'm coming from.  My father was a proud man, loved his family, a very Christian man..I was his one and only girl.  He became sick when I was in my late teens.  He had cardiac issues.   My father was my emotional connection, my mother, was always the one to hold in her feelings and my dad was my 'go to guy'.  One afternoon (a few weeks after a heart surgery), I was sitting outside with him; he was sitting in the old hammock - I can see it today, as plain as day.  He cupped his hands over his face, and cried; I had never seen my daddy cry and it was frightening...this big strong man, my protector, hurt and crying.  He told me he didn't know what he was going to do - life had turned and he was afraid.  Fast forward 10 years and daddy called me one morning while I was getting ready for work; he sounded strange, he said he was having a heart attack.  I hung up and called 911.  I called him back and he answered - we talked and said our goodbyes - I kept telling him he was going to be okay, to just hold on......he told me he couldn't hold on any longer and he was gone.

I feel those same fears - and my daddy died 20 years ago this June - it feels like a movie replaying in my mind, each and every time I look at my husband.  I love Ron so much and I'm afraid he will leave me.

I'm so glad I found this forum - I hope you won't get tired of me.

The name RcMoonpie - my family calls my husband, RC (his initials) and the joke is - I'm his little Moonpie - RcMoonpie....I know, it's corny.  (And I'm nobody's little anything - I'm 5'11" and my husband is 5'9" - I guess that's part of the joke).

I wish you all the best - I send positive thoughts and many prayers your way.

Pam

Pam, thanks for the update via your blog.  Does hubby have an unusual blood type?  It's some kind of awful joke that I have O+ (universal donor) and can't donate blood or organs due to my hep C.

Hugs,

Connie

Sue

They need to develop both a vacination to prevent hep C and a sure-fire treatment to rid the disease in those who already have it--a million or more in the U.S. alone.

Hugs,

Connie

Diana, welcome to the forum.  I truly wish you had found us sooner.  From your description, and especially with his continued drinking of whiskey, it really doesn't sound good.  He could very well die soon.  With the coughing up of blood, it's likely esophageal varices that are rupturing.  He can bleed out this way, if he refuses to go to the ER.  His not eating is also not a good sign, as well as what sounds like seizures.  The sore throat could be ulcerations from the whiskey.     He truly is killing himself.  So unnecessary.

The confusion is likely hepatic encephalopathy from ammonia in his brain.  Another thing that could be treated if he would seek care.  But no treatment helps if he continues to drink.

I have chronic active hep C, cirrhosis, and had liver cancer.  But because I stopped drinking long ago--before any of my diagnoses--I am still here and stable.  I'm hoping to try the new hep C treatment later this year, or whenever it becomes available.  I'm not trying to take the focus off your guy and what you are going through, but it's so important for people to know that hep C and cirrhosis are not death sentences.  All they have to do is put down the booze immediately, eat well, get medical care, and basically take care of themselves.  If necessary, a transplant can be done--but not if one continues to drink alcohol.

My thoughts and prayers are with you.  You need them.

If you like, you can create a thread of your own (hit New Topic instead of Reply) to introduce yourself to others.

Hugs,

Connie