Should we let Narure run its course?????????

Hello all,

  This  is our  1st post. Id  like  allo to know  that Im a Radiology Technologist...who has  worked in Interventional Radiology  for  the  past  20 yrs. Though  Ive  performed hundreds  of Paracentisis, Liver Biopsies, Biliary Dranages...etc......And  have  a  good  working  knowledge of ESLD  and ESRD..... Things  change  when it comes   home to bed  with you.......Me  and  my wife  are  both 56 yrs old........We both  are old  rock an rollers  and  partied  most all  our  marriage.....Cindy was diag  with Hep B in 1986  an  with  C in 2003......... Never  had  it  treated.......I said  Cindy  I  had  Hep B  in 1970.......Im  fine with  no treatment  each  yr  my  LP  looks  fine........Well not  for  her........7 days  ago   she presented  with  an Ascitic  Abdomen an  after  a CT we drained 6200 ml  of  fluid....then  labs  showed  her hemoglobin down  to 6.0.....had  to transfuse  2 units  of  blood.......Then  to  the  Gastroenterologist....we  hoped hed  change  her  meds  an  manage her ascites.........Instead  he  says/////////There is  nothing  I can  do for  you now  YOUR LIVER HAS FAILED..... very  shocking. he  increased  her  diuretics  an  is  setting  her  up for  a Liver Transplant interview at UNC in Chapel Hill,NC Hes  gonna  do  an Upper  EGD  an  band  varioces  if  he  sees  any   he says  this  is gotta be done anyways.....  Heres  the  question?????????At our age  should  we  do  this    what  Ive  read  says  if  we  start now    itll prob  be  3 to 4 yrs  before  she  gets liver......shell be  59 or  60...... Wed  appreciate any comments.........Wayne  an Cindy

Thanks Judy,
All is just sinking in at this point and go through with the Transplant Interview process.......but my god.thats gonna cost thousands just with all the diagnostic tests that UNC has to run...And this is just to see if shes a candidate for getting on the list. Our daughter has already asked to be a living donor.....But you have to be accepted on the National list before UNC will accept or consider doing a partial liver transplant...........OMG were just starting a long road of Dr"s an tests ..........Shes been trying for SS disability for the past 2 years over SOB....not being able to breathe with exercise...whe thought it was her heart....Now it looks like it was ascities the whole time......As her breathing is much much improved after the paracentisis.........Dr's wrong Diagnoses.....Bahh.......

Wayne and Cindy, welcome to the forum!  I agree completely with what PinkGrandma has said.  I was diagnosed with hep C in '93 and treatments at that time did not work for me--actually had to quit before they had a chance, due to very low white counts.  At any rate, I developed cirrhosis and liver cancer--but I'm still here at age 65.  I lost most of my liver to save my life, but have never been bad enough to need a transplant.  I went to Mayo Jacksonville for my care (still do.)

It sounds as though your hep B was thrown off by your own immune system, though you will still test positive for B.  I had the same experience.  As you said, your wife was not so lucky.

Chapel Hill is excellent.  Does your wife have insurance?  If not, she may be able to get Medicaid now, and I suggest she file again for SSI/SSD, based on recent developments.  I'm fairly certain that Medicaid will pay for a transplant.

You will get a lot of info and support here.  So please continue to post and let us know how things are going, or if you have any questions that we may be able to answer.

Any one her had exp with DD after being sent for transplant?

What do you mean by several years of happy healthy living/?....Have you experinced this?.... I we go thru all this red tape surg an reduced quality of life to get a liver we want more than "several yrs"..........pls be more explicit if ya can

Wayne and Cindy,

I hope you don't give up. My mom was just diagnosed with cirrhosis. I would be devastated if she gave up. Even if it were only a few years after a transplant, it seems worth it to have your mom around.

Susan

Don't give up. I met a farmer at the transplant unit on one visit who had his transplant over 20 years ago and was still doing good and had a normal life. Be ready for the rollercoaster ride of your lives, but it will be worth it in the end, I hope. There is so many happy endings in the transplant world. Just don't give up.
Helen

Wayne and Cindy

Please don't give up.  My husband was just listed in March at Vanderbilt.  He turned 59 that same month.  His Dr. at Vanderbilt told us he is still very young.  Your wife is younger then he is.  NEVER give up.  Also we met someone at one of our appointments that got his new liver 20 yrs ago. He told us to "Do every thing they tell you" and you will be fine.    They didn't know as much then as they do now.  You two still have so much living to do.  Also the transplant centers have financial department and they did all the paper work for us.  We didn't have to do any of that.  So go for it!!

JoAnn

Wayne and Cindy-

First of all, welcome to the forum!! I wanted to encourage you to NEVER give up!! My husband has HepC/Cirrhosis of the liver and is currently on the transplant list. He's 47. Also, his older brother had a liver transplant 18 years ago, and he's still doing REALLY well!! So, just know that there are success stories out there. This horrible disease affects everyone differently, but what I can tell you is that if you do not pursue it, just deteriorating from this disease is horrible. Do get in w/ a Hepatoligist.....the transplant team at UNC/CHapel Hill should have one on staff they can refer you to. You guys keep fighting the good fight and do not give up!

Wayne, I'm not sure how often a paracentesis is done. My husband hasn't had to have this done. But he had terrible edema in his legs and was prescibed Aldactone along with the Lasix that he had already been taking and it took it about a week or so before we started noticing a difference. He is now back to taking only the Lasix. I continue to pray for you both.

Wayne, is she also on Lasix?  Aldactone is also a mild diuretic, but mainly used to balance the potassium lost from Lasix.  If she is only on Aldactone, I think I would question that...and ask about Lasix, as well.  I had terrible ascites and edema, but never had paracentesis.  At times, I had "weeping" of fluid from my calves.  My breathing didn't get bad, and the doctors didn't seem as concerned about the fluid as I was.  It hurt my feet and calves something awful, so I would get someone to massage the fluid upwards and that would give me some temporary relief.  I have been on 80 mg of Lasix and 200 of Aldactone at the worst...but now am doing fine on 40 (and sometimes 20) and 100.

I think her Aldactone should be higher.  Unless her potassium is seriously low, she probably doesn't need a supplement, as the Aldactone balances the potassium lost from Lasix.  At least, that's been my experience.

Update calle d the doc tonight to try an get dosage increased he increased the Aldectone to 150 and wants her in monday instead of wed This is good.......