ESLD

Diseases & Conditions Hepatitis
1
 My brother age 52 is in last stage liver disease.  His liver is gone.  He has recently come to live with me and I will be the caregiver until God takes him home.  He is in the hospital now.  Had 4 liters of fluid drained from his abdomen yesterday. I have read the postings and appreciate knowing that you are there for us.  I was wondering about the specail diet.  Could I get more info on that please?  I am pretty scared and he insists on managing his diesease right now.  He was on a transplant list, fell broke his hip and missed a couple premiums,so they cancelled him.  He is a veteran. Does anyone know about Vet benefits?
Thanks for being there.
PJ
2
Hi Big Sister,
I am sorry - I can only imagine how hard it is. I don't know about Vet benefits, but if I were you I would call as many people in Veteran's Adm as I could to advocate for your brother. Would he qualify for disability and Medicaid? Medicaid pays for transplants in most states. Others can tell you more about the special diet, but I know it is low protein (little or no meat). I have a friend who is also 52, with liver cirrhosis and a broken hip in a nursing home. They do not have him on a diet. Last week, he ate a cheeseburger and went into a very bad spell of encephalopathy(mental confusion). I have been trying to advocate for him, but it is hard since I am not a relative.
I will be thinking of you.
Gayle
3
Thank you Gayle for your help.  I feel very alone in this as my Mom is ill and can't help at all and the rest of my family just give advice go along on their merry way.  I am so glad I found this forum and grateful that there are aother people that care enough to be there for us.
4

Welcome, big sister.

The diet is primarily low protein/ low sodium.  The low protein helps keep ammonia levels down and the low sodium helps reduce the ascites.

It's amazing how much protein and salt is in everything we eat.  When Mark was at his worst, we limited his diet to (I believe) 40 grams of protein and 1 gram of sodium per DAY. To keep it simple, there's about 7 grams of protein in 1 egg, or 5-6 ounces of meat (precooked). Watch dairy products, breads, etc. for protein and, especially, sodium.

None of those just-add-meat dinner mixes, boxed side dishes, any packaged meals - they are LOADED with sodium. Most sodas, especially colas, have sodium.  You'll have to read the ingredients on everything you buy, which is why I started making everything from scratch.

Also - what most people don't know - watch your meats! Many packaging companies add a 'flavoring' to chicken, among other meats, which is salt-based.  I don't believe that I have any of my recipes any more, so I can't send you what I used to make. But, meatloaf isn't bad if you add a lot of sauted onion, celery, and garlic. Adding oatmeal, which doesn't have as much protein as ground meat, helps stretch.  Ground turkey and pork also help.

Lots of fruits and vegetables.  We went through tons of citrus.  If there's no blood sugar issues, desserts (watch the sodium - including baking powder and baking soda) are helpful to fill up.

Watch 'free water' which is a fancy name for plain water.  Not only does it contribute to enzyme imbalances, some of the bottled stuff has added sodium!

As for the VA - depending on your brother's service, they will cover transplant and all care, including rehab, respite and hospice. They will bring oxygen, wheelchairs, any therapeutic items that he may need.  Any tests that have been done in the last 6 months, toward getting listed for transplant, should still be valid and it will help the VA doctors if the records can be transferred.

I know that's a lot of information. So, if I missed something or wasn't clear, please let me know.
 
We started out at the VA and ended up, through Mark's disability and state-provided healthcare, getting his surgery through a private hospital.
 
If you let me know what city and state you live in, I'll see if I can find some specific information about the VA in your area.
 
God bless and keep your chin up.


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.
desertjules@healingwell.net

5

Dear Jules,

The info was great and very helpful.  Just talking to someone about it is a relief.  He may get out of the hospital today.  They have been giving him Plalets but his labs have not improved, so that will determine his release or not.

We live in Phoenix, AZ.  He is on Humana Health Care after a nightmarish experience getting him set up. My brother (Larry) is very insistant on managing his own care.  I have talked to him several times about the VA.  Maybe knowing that they will take all the test he just had will spur him to take more of an interest in getting set-up for a transplant.

I am very encouraged by Mark's progress, and your deep caring to continue to help others who so desperately need your kind words and positive re-inforcement.

Thanks again, God Bless

-Paula

 

 

6
Bigsister,
 
We're in Phoenix, too.  What hospital is your brother in?  Is he on disability?  or AHCCCS? Has your brother ever used the VA facilities? Does he have an ID card?  (Sorry, just random questions that popped into my head.)
 
The website for Carl T. Hayden VA Medical Center is www.phoenix.med.va.gov.  If this is something that your brother wants to do, you need to get started right away.
 
As in all things governmental, there are many steps involved.  First, eligibility. At the top of any page on the website is a [Benefits] link that explains what he needs to provide.  Minimally, it will be his DD-214 and copies of both sides of his insurance card.  (If he can't find his DD-214, they can look the information up at the hospital.)
 
There's a link to the online registration form [Forms] at the top of every page. The form he needs is the 10-10EZ, Application for Health Benefits.  I would print this form and pull together all of the information from the [Benefits] section.
 
Mark said that anyone who hasn't been dishonorably discharged is eligible.  Depending on income, there may or not be a copay for services.
 
If you want to send me an email at desertjules@healingwell.net, I can give you more details about the hospital and their process. I just talked to one of the transplant program coordinators and she did give me more specific information.
 
God Bless.

Oh, I almost forgot.  Lab tests, etc. are good for 3 months.  CT scans, etc. are good for 6 months.

DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.
desertjules@healingwell.net

Post Edited (DesertJules) : 8/18/2005 1:21:11 PM (GMT-6)

7

Good morning,

Larry was released from the Hospital yeterday.  I downloaded forms from the VA and we filled them out.  We also discussed his wishes and funeral arrangements.  His attitude is very good, but I'm sure he is trying to be strong for us.  Anyway, we are going to the VA tomorrow and try to get on a transplant list.  The 4 liters of fluid they drained has all returned.  It is very difficult for him to walk, as the swelling is from chest level down. After having hip surgery and now one leg is shorter by 1" moving around is not easy at all.  He resembles the Michelin man.  Last night I came home from my bible study to find him on the back patio.  He had locked himself out.  He was laughing about it, so I am thankful that his sense of humor is till in tact.

Thanks for being there

Love & Prayers,

-Paula

8

Oh, my!  Sometimes you just have to laugh.

Good luck at the VA.

Please remember, this is not a quick process.  He has to be assigned a clinic and primary care doctor before anything happens.  (I don't know if Eligibility is even open on Saturday to do that.)

Then, he has to go to GI and meet with the coordinator, who is only in Monday through Friday. His records have to be transferred over from the other doctor/hospital and reviewed by the VA.

He can't be listed until all of his tests are reviewed and/or completed and a doctor submits his name to the transplant list.

God bless.  Let me know how it goes.

DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.
9
Please see the new thread - Great Good News - for an update on Big sister and her brother.

DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.