Image by philozei via FlickrThanks to my very dear friends Sandy and Jeff I have enough medication to last until Wednesday. Hopefully, by that time my drugs will arrive in the mail from the drug manufacturer's programs and I will be once more over that hurdle.
In the meantime, I had blood tests done on Friday to check for any signs of rejection from the period of almost 5 days that I went without the Prograf medication last week as I was embroiled in the insurance nightmare and nightmare of having my doctors in Arizona drop the ball by not returning vital paperwork so the drugs could be released to me in any form, either from Medicare's plan or the drug company program.
I won't rehash that nightmare again. But despite having the drugs on hand this weekend I am still an emotional mess. I'm constantly on edge worrying about the results of those test. I was supposed to receive a call late Friday from UMC about the tests, but of course, that call never came. Now, I must wait till tomorrow to hear.
In light of this I am faced with a dilemma. What if the tests show problems? Do I go to UMC for treatment with no confidence whatsoever that the treatment would be timely and appropriate based upon past experience? Do I try to see someone else in the state to verify their results and receive treatment? Do I beg for money from family and friends to fly back to South Carolina to see if my original doctors could treat me and separate myself from my main source of love and support, Michael?
Needless to say, despite the outcome of all this, it has become abudantly clear that I will require treatment for depression and anxiety. On depression screening tests I now can answer "yes" to almost all the questions and the same goes for anxiety screening tests.
There are times during the day when I feel as though I will burst into tears for no discernable reason other than the thoughts constantly swirling in the back of my mind. I find myself pacing and only stop when Michael brings it to my attention that I'm wandering around the house like a zombie. I've lost all interest in my usual hobby and cannot even think about upcoming paranormal investigations that usually fill my free time with research or planning.
The consensus of opinion from people "in the know" is that the better choice for my care here in AZ would have been Banner Good Samaritan in Phoenix. I have heard horror story after horror story of incompetence in the patient support departments at UMC.
I can add to those as well. When I called their transplant cooridnator in a panic after being told Medicare would not pay for my medications and asked if they had someone on staff who might help me make sense of it or help with one of the programs I ended up doing myself, I was told that she didn't really know.
Most centers have a Social Worker who helps patients with such issues and provides guidance as well as making sure paperwork is completed by clinical staff in a timely matter. Either UMC does not have this basic service or the transplant coordinator has never been informed they do.
Regardless, I am an emotional wreck and I suppose my first mistake in all this was choosing the "hometown" program because I did not want to drive to Phoenix as I did to Charleston for treatment. As a result, I have put myself in serious jeopardy after almost 2 years of perfect health after transplant.
So, once I find out what is going on physically, I've got little choice but to seek mental health services now to deal with this anxiety and depression that I don't feel will lessen quickly even if all is well at the outset.
I'm completely off my game and feeling terribly guilty that I made a bad choice for my own healthcare in expecting UMC to provide the same support and caring shown to me at MUSC in South Carolina. If nothing else, I have learned that all transplant centers are not alike and run the gamut from fabulous to questionable.
In the meantime, I continue to freak out every time I go to the bathroom, constantly trying to determine if my urine is darker than normal, checking my eyes for any sign of jaundice, checking my temperature for any spike, looking at my arms and legs trying to tell if they might be the slightest bit yellow, and generally obsessing. I'm so nervous I can't eat and have to make myself drink something. The only relief is when I can get lost in a book long enough to let myself fall asleep which I'm doing more than normal as well.
Right now, I'm thinking "Is my face hot?" and the desire is overwhelming to go, once more, to check my temperature. So, I'll end here...