Grant Funding To Help Cirrhosis Disabled Navy Veteran With Multiple Needs
by Steven Lompe
(Corpus Christi, Texas, USA)
I am a 62-year-old male. I am on my second marriage of 17 years. I have four children from my first marriage and two stepchildren by my second marriage.
I have 13 grandchildren and one great-grandchild. I was in the Navy when I was younger and I have a son that is in the Coast Guard stationed at Point Reyes, California.
As a child I received a bad blood transfusion during a botched tonsillectomy. Many years later in my early 50s, I developed extreme fatigue while working.
A doctor's visit found that I had Hepatitis C. Then a blood test was done and it was found that my liver functions were off.
Then a liver biopsy was done, and determined that I had cirrhosis.
Then, I had my gallbladder out. It was going to be an endoscopic procedure, but when they got in and found out how bad my liver was, they cut me open instead.
They reported those results to my gastroenterologist, who referred me to the University of Texas Medical Center in San Antonio, Texas, for a transplant evaluation.
In May 2003, I was placed on the list for a liver transplant. I am still waiting on a transplant after 10 years.
In October 2003 I had a Tips Procedure where a stent was placed in my liver to help the blood bypass the dead part of my liver.
This stent has become semi-closed, resulting in encephalopathy. That causes me to become disoriented and lose touch with reality. I don't know where I am at. I don't know my wife and I become very agitated.
I have had to travel to the hospital many times to have the stent opened because it was closing. I've had many paracentesis procedures to remove the Ascites (fluid) that builds up.
In 2010 I was transported to Galveston, Texas to the University of Texas Medical Center by ambulance because the stent closed completely and I had developed a severe infection that put me into a coma for several days.
The University of Texas Medical Center in Galveston was the second transplant hospital I was also listed with. I am listed with Halo Flight for quicker transportation should a liver be found.
There are motel expenses when I have to stay the night before certain procedures at the hospital in San Antonio and food and lodging for my wife when I have to stay overnight at the hospital.
There are certain meds that I cannot afford that doctors think would help me. Xifaxan being one, but it would cost me $800-$900 per month.
My other meds are provided by Hospice. When I go to my transplant hospital in San Antonio, my wife has to miss work and income. She is my primary caregiver and takes care of me at night and weekends.
We can't travel out of town to visit my son or wife's family, for pleasure or relaxation because of the stress it puts on my body.
At home, I have nurses and a provider. I also use an oxygen machine as needed, and a wheelchair and wheeled walker for mobility assistance.
In October of 2015 my long-term disability of $640 a month ends. This will create a devastating financial hardship on me and my wife.
We have had to receive donations to pay our electric and utility in the last few months from a church.
I have tried looking online for ways to make money but they have turned out to be scams.
I would like to work at home but because of my disease I have little concentration and patience, so it would have to be something I could work on at my own pace.
I am limited to the income I could bring in due to my SSDI and Long Term Disability. We do not have the family or friend support to do fundraisers.
We need help with roof and foundation repairs and home disability upgrades, such as a walk-in tub for when I get severe leg cramps.
We need accessibility to the bedroom because ambulance drivers cannot get me in and out of the bedroom in an emergency, because the bedroom and hallway are too small.
We need help with medical bills, which have caused credit problems.
We could use a small RV for traveling to the hospitals and for staying in once I receive a transplant and have to remain near the hospital for several months.
I'll also need money for anti-rejection drugs after the transplant.
Finally, we'll need money to cover my wife's lost income while staying with me after I get the transplant.