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Old 05-11-2012, 11:32 AM   #1
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Join Date: May 2012
Location: Orlando, FL
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wifeofdave HB User
ESLD (?) - Frustrated!!

My husband was hospitalized 30 days ago with a GI Bleed. GI Dr. did endoscopy and tied off SEVEN varices and was amazed that we did not know that my husband's liver was "SO damaged". During his hospitalization, the GI Dr. stated that my husband was in Stage 4 Liver Failure and that he was going to get us in touch with the local Transplant people. He was in the hospital for a week and received a blood transfusion, a bag of platelets, and they also performed a CT scan and an MRI.

My concern is that my husband was admitted to a "civilian" hospital via the VA and the VA will not pay for the follow-ups with the civilian GI doctor. Therefore, my husband has still not had his follow-up with the VA and he's been out of the hospital for 30 days! (The VA is SO SLOW!!)

He has been experiencing ALL of the symptoms of end stage failure (except the jaundice). I have been scouring the web to see if there's anything we can do ourselves to help with the symptoms, but find nothing of use.

Until we get the VA to get off their A__, we're just in limbo. He also only has limited VA coverage and no insurance, so we're attempting to get him signed up for Medicaid and SSDI, but the "civilian" GI doctor never did a "written" stage 4 liver failure diagnosis!

Just Frustrated!!!

 
Old 06-03-2012, 10:24 PM   #2
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Join Date: Jun 2012
Location: Tyler, Texas, USA
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Re: ESLD (?) - Frustrated!!

Quote:
Originally Posted by wifeofdave View Post
My husband was hospitalized 30 days ago with a GI Bleed. GI Dr. did endoscopy and tied off SEVEN varices and was amazed that we did not know that my husband's liver was "SO damaged". During his hospitalization, the GI Dr. stated that my husband was in Stage 4 Liver Failure and that he was going to get us in touch with the local Transplant people. He was in the hospital for a week and received a blood transfusion, a bag of platelets, and they also performed a CT scan and an MRI.

My concern is that my husband was admitted to a "civilian" hospital via the VA and the VA will not pay for the follow-ups with the civilian GI doctor. Therefore, my husband has still not had his follow-up with the VA and he's been out of the hospital for 30 days! (The VA is SO SLOW!!)

He has been experiencing ALL of the symptoms of end stage failure (except the jaundice). I have been scouring the web to see if there's anything we can do ourselves to help with the symptoms, but find nothing of use.

Until we get the VA to get off their A__, we're just in limbo. He also only has limited VA coverage and no insurance, so we're attempting to get him signed up for Medicaid and SSDI, but the "civilian" GI doctor never did a "written" stage 4 liver failure diagnosis!

Just Frustrated!!!
My husband was hospitalized this year with a massive GI bleed and in intensive care for over a week to the tune of $833,000 with no health insurance! He had to have 6 pints of blood. We call him our "walking miracle!" He had massive fluid in the abdomen, encephalopathy and has portal vein hypertension. He had several varices banded and has had to go back to have several more done. He goes back this month for another endo to recheck. His symptoms are being mostly controlled with medication right now and he does fairly well. Doctor said he probably has many more years to live, but he just has to accept his limitations. It is difficult to predict the outcome. With proper treatment there is hope for many years or get on the liver transplant list.

You need to contact the civilian doctor to get his test results and get copies of his medical records from the doctor and from the hospital. You also need to contact the civilian doctor and explain the situation - he may be able to prescribe meds by phone as a follow-up while he is waiting on the VA. You may also try writing to the doctor to explain the problem. Is he on any meds that were prescribed when he was released from the hospital? Make sure the doc knows you are limited financially so that he can prescribe meds that are generic and less expensive. Any good doc will work with you on that. If the doctor says he is a candidate for transplant then that is an automatic for disability.

Find a good disability lawyer. According to law they can only charge a small amount based upon "back payments." In other words, if he is disabled and the payments go back several months, they only can charge a minimal amount based upon the percentage of the back pay AND NO MORE. It is the law. A good disability lawyer can help him get on disability or SSI or both. Do some research for that. We just qualified for disability and that will help. There is also a federal program called PCIP that is insurance that covers all pre-existing conditions. You are not rated up for any health problems. Do a google search for PCIP to help with insurance costs. A 58 year old male pays $426 monthly and that gives prescription coverage plus $25 co-pay for physician visits including specialists.

If he continues to have severe symptoms take him to the emergency room or call 911 for an ambulance. They have to treat him. Worry about the expense later. His life is more important. There really is not much you can do on your own except no alcohol, possibly limit protein, rest. He needs to be seen by a doctor. Call the civilian doctor and hang in there!

 
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