I was on the evening news. gulp.. It was scary but the reporter Lauren was very kind and the kids loved the camera <<big hams>>
What was I doing on the news? Homeschooling? I wish!
No, I am still fighting the VA healthcare system for my nutrition, hydration, and IV meds. I am a service connected vet that should be covered. Chris and I have been on the phone literally hours and hours over the last few weeks trying to work out why I am not getting my TPN. The mountain that is the VA was not moving and we weren’t getting answers.
(Frustrated… hmm not the word I would use. Though it is a major part of my feeling towards the VA at this moment.)
In an attempt to get the giant VA to pay attention to this single vet that is dying from lack of nutrition. I went to YOU the social media and made a simple short video asking for help. I hoped that if we as a group shouted loud enough someone would hear along the chain of command in the VA and help.
MAN, did you guys come through! The shout was heard and soon I was talking to a variety of people up and down the chain of command. Some assisting me to get to the ‘right’ person. Others guiding me through the VERY convoluted VA system.
Yes we have asked for help from patient advocates, primary and specialist doctors, nursing, social workers, care management. No discernable movement forward was made and I was stuck in the hospital for over a week.
However the original video started to get the attention of my friends that had friends who knew someone… you know how ‘6 degrees to Kevin Bacon’ works. Soon I was on the phone with Senator Manchin’s team and Congressman McKinley’s team, also State Senator Capito trying to work out how best to work with the VA to get my TPN reestablished.
Then I made another video to help update and outline the most recent discharge from the hospital. Home from the hospital but still no TPN.
However the pot was truly stirred up now. The local VA dropped all attachment to me and transferred me to Pittsburg VA which is about 2 hours away from my home.
We are at the end of the week. I haven’t eaten since Monday. I have been keeping hydrated thanks to some extra IV bags that I had for just in case. My idea of ‘just in case’ was ‘in case’ a snow storm comes along or there is a delay in my weekly IV supplies. I would need that extra to see me through.
The latest final odd turn in this saga is the VA Pittsburg called me and told me to come up and check into the hospital. They are not going to be giving me TPN until at least Monday when the GI can be called in. Despite the clear paperwork this GI has already on file stating I need TPN.
<okay yeah I am getting supremely frustrated!>> but it does get worse over two days I got basically the same call from Pittsburg and this is how it went.
What testing and evaluations do you still need to do? Which specialties will be involved?
With no care plan or goals set how will we know when this is satisfactorily over?
How long will all this take? Its a well known fact/joke that nothing happens in the VA hospital over the weekend or the holidays so are you really setting up a situation where I will be in the hospital until well past Thanksgiving?
Finally I asked, was I in charge of my own body? If I was asked to do 9 tests and did them but thought the 10th test was too invasive or not necessary could I say no?
You could, but then you would be choosing to not reinstate your healthcare.
Here I sit on late Friday. After much discussion with hubby it is clear I cannot trust the VA to answer my questions or protect me so I have to protect myself. The only acute need I have is TPN. If they are not willing to restart the TPN with both their GI specialists saying that it must be restarted immediately, then no checking into the VA hospital. I am safer at home away from germs, medication disruptions, and with my family that helps me stay strong.
It’s miserable that we have gotten to this point but for my own health I am not choosing to check into the VA hospital at this time.
How do I feel right now? The IV’s have helped a lot to keep me from being dehydrated but sugar water only goes so far. My muscles are being to be sore like after a very hard workout sore. They are breaking down. I have started to lose weight and swell as well. Odd dichotomy but not unusual in this situation. My words are getting fuzzy as is my thinking. I am slowing down into what I call hibernation mode. I am constantly cold and tired. Sleeping will be high on the agenda this weekend.
There is light at the end of the tunnel!
We will be traveling to see the GI specialist on Monday. His team is ready to swoop into action and help me get my needed nutrition restarted but it could take days in the hospital to slowly restart without causing refeeding syndrome and they will have to check my kidney function to see if this rollercoaster of going on off on off on off has damaged them. And because of the VA’s behavior it would have to be outside the VA’s medical coverage.
I am a fighter so if I have find other ways to pay for my life extending treatment I will. I also have no intention of the VA getting away with dumping a vet because I won’t toe the line and keep my mouth shut.