| Author |
Message |
Emily
Member
Username: Kensdaughter
Post Number: 1
Registered: 09-2011
| | Posted on Saturday, September 17, 2011 - 11:40 pm: | 
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And I am just the daughter. I feel helpless and it is my mom and dad going through so much. My father is in the VA system in Texas. He has a massive hernia resulting from ascites. He is just coming off a 9 day stay in the hospital due to a low-grade fever of unknown origin, constant pain, nausea and an inability or lack of desire to eat, likely due to the pain and nausea. He has cirrhosis and began the transplant eval, but as long as he has the fever they will not continue the evaluation. My husband and I are urging my parents to see a specialist through a liver center in Texas. Has anyone had an exceptional experience through a specialty liver center in Texas? My father now qualifies for SSI disability, but has to make it through the 2 year waiting period to qualify for Medicare. So, needless to say, everything will be out-of-pocket, outside of the VA system. Every bit worth it if we can save my dad. The doctors have stated that his MELD is a 12; however, he is now so weak, he really cannot walk, is wasting away and is in constant pain. Does not make sense... |
garben
Member
Username: Garben
Post Number: 15
Registered: 10-2007
| | Posted on Sunday, September 18, 2011 - 12:24 am: |
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Hi Emily,
I had an exceptional experience with ”The Texas Liver Center” they are located in Houston and are part of the Memorial Herman Hospital. I too had problems with the hospital I was at in San Antonio they were not capable of helping me. Here is the link to their sight.
http://www.memorialhermann.org/locations/texasmedicalcenter/content.aspx?id=1126
Keep the Faith and God Bless
Garben
Liver Transplant, 2/28/07
Memorial Hermann, Houston, TX. |
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Emily
Member
Username: Kensdaughter
Post Number: 2
Registered: 09-2011
| | Posted on Sunday, September 18, 2011 - 07:26 am: |
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Thank you for the suggestion. Memorial Hermann was the first to come to mind but also considering Baylor in Dallas. My parent live outside Dallas, so obviously easier to get to, but not if the doctors/services are not good. |
surviver
Member
Username: Intlmech
Post Number: 31
Registered: 05-2011
| | Posted on Sunday, October 09, 2011 - 03:58 pm: |
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you say your father is a vet?if so he can get them to do the transplant for him,meds are 8 dollars a script.somebody needs to tell the veterans to get with it on this one.i'm a vietnam vet and got hep b and c (which mutated to hep d) by the shots i got before getting out of boot,press them real hard because they know this and want to avoid any trouble over this.god bless mike ps vets pay for it all
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Bob2006
Member
Username: Delgador
Post Number: 231
Registered: 06-2008
| | Posted on Sunday, October 09, 2011 - 09:08 pm: |
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The VA system has (or used to in 2006) 4 transplant center in the states which includes Pittsgburgh ( I believe U of Pit) that perform their liver tx. They are very slow in the evaluation process. The VA in Houston, probably Dallas also, should have a hepatology department, and they have got to have a transplant coordinator, find out who that person is and call them, wait for them outside their office...etc whatever it takes to get their attention...and don't give up... Also contact your father's VETERANS ADVOCATE ...they have an office in every VA hospital... tell them your story. The VA will take their sweet time to evaluate you, it's just the way their system works, but you have to get this folks I mentioned and his VA Hepatologist to push the system. The actual evaluation I believe is done at the VA in Pits. but all of the testing pre-tx can be done in the local VA hospital, DAllas, Houston, maybe also at Waco.
Once he gets in the tx list and they call him for the tx they will Air-ambulance the vet to the tx center ( 1 of the 4)
If your father is "service connected" (he can explain that term to you) and they do not "take care" of him as they should, DO NOT HESITATE for 1 second and write to your congressman and senator.
You are probably wondering how I know all of this... well I am a veteran and went thru the process with the VA, forunately for me I went to 3 other transplant centers until 1 took me, btw it was not the VA.
If you have any questions send me a PM and I will send you my phone no, and we can talk.
Regards
Liver TX 7/31/2006 due to HCC
Dr. Jang Moon & Dr. Andreas Tzakis - UM/JMH |
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Emily
Member
Username: Kensdaughter
Post Number: 3
Registered: 09-2011
| | Posted on Sunday, October 09, 2011 - 09:40 pm: |
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Thank you both for your replies. My parents are learning to advocate more strongly for themselves which has spurned a bit more action on behalf of the VA staff. Unfortunately, other complications with my dad's condition have slowed down the evaluation process, but VA is continuing to schedule all of the tests. They were more attentive during this last hospital stay which is encouraging. I have encouraged them to take some time and go through the forums here for questions, support and to help him feel less alone in what they are dealing with. Unfortunately, they have dial-up on a desktop computer. It is difficult for him to sit at the desk and wait for pages to download. But I have told him about some of the stories I have read and the experiences of others and I think it has helped his spirits. Thank you again! |
Sophia Grace
Member
Username: Sophiagrace
Post Number: 1
Registered: 11-2011
| | Posted on Thursday, November 10, 2011 - 02:55 pm: |
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SSI disability has a loophole that can cut the waiting time - it's called presumptive pay, and essentially it requires you to make friends with someone who processes the SSI disability paperwork and get a doctor to write a letter stating that it's medically urgent. That can cut the wait time from six months to a few weeks. |
cactus
Member
Username: Cactus
Post Number: 123
Registered: 05-2009
| | Posted on Sunday, November 20, 2011 - 11:06 pm: |
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In Florida if you qualify for ssi or ssd (disability) it takes two years to get medical coverage for medicare but it qualifies you for medicade or medicaly needy share of cost.
Texas may have something comparable to cover his cost or part of it. This may be what Sophie Grace is talking about.
cactus
liver cancer
transplanted 8/23/09 and 10/2/09
Shands @ UF
evaluated for third 10/10
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