In the ongoing saga of trying to get immunosuppressant medication that I need to live, another week has gone by and I'm only marginally closer to having access to these drugs on a regular basis.
Thursday, I wasn't feeling too well. Of course, my blood pressure was 140/130 when I had it checked, thanks in large part to constant stress with all this.
I finally was having panic attacks worrying that because this has been so hard and I've been without the meds for so long that if anything else happened and the drugs did not arrive on Friday then it would be at least Monday and over a week without them.
I couldn't eat and could barely take a few sips of water I was so upset. By afternoon, I was a complete wreck and noticed that my urine had darkened. This is a sign of rejection, of course it's also a sign of dehydration.
About 4:30 Michael convinced me to call someone at UMC to ask if I should maybe come to the hospital to be checked out.
I finally got their transplant coordinator on her pager who had already left the office. She was very brusque with me and pretended that she had no idea I'd been out of Prograf since last Saturday. This is despite repeated phone messages about that and at least one personal conversation about the fact I was out of the drug and desperate for her to do the paperwork that had lain in her fax machine for several days without being touched.
I asked if I should come to the hospital and she told me "No! You need to go buy some Prograf!"
I responded, "If I could afford to buy it I wouldn't be in this mess!"
"Well, you'll just have to buy as much as you can. Even if it's just enough for a few days that you can take half a dose."
"Do you know how much this costs per pill?" I responded.
"Well, you'll just have to do it someway."
So, I asked about my symptoms and asked point blank if she thought it was just psychosomatic and dehydration or a sign of rejection. I honestly had the feeling she just wanted me off the phone from the exasperated sigh I heard.
"Well, go in the morning first thing where you got your labs before and have them do them again. I'll call you in the afternoon and let you know."
So, I tearfully went to Michael and told him what she said. He checked the bank account and we drove to Walgreen's. I bought 2 1/2 days of Prograf for a little over $100. Still, we were hoping my shipment might come on Friday.
Friday morning I went to have my blood work done at Labcorp nearby. I returned home and called Astellas to see if my shipment was due to arrive today. I was told they had the fax from UMC but had not processed it yet, so it would be "a few days" before they decided 1. if they could send the drugs and 2. if they could, actually send them out.
So, no money for more of the Prograf and no hope of the drugs until probably Wednesday or later. Again, I was ready to be committed.
Finally, my friend Sandy who works for a GI doctor emailed me to see how I was. She'd been over Thursday night for our Paranormal group's radio show and supper. I told her what was going on and she was livid.
She began burning up the phones to find out what was going on. She found out that Astellas had approved the shipment and she begged them to get it out today or Monday at the latest. They assured her they would make every effort.
Then she asked how much I had left from what I bought on Thursday. I told her I had enough to last till Saturday night. She then told me that she and her husband would purchase me enough to last until Wednesday. I was speechless. I never expected her to do that for me since she certainly doesn't have loads of money to toss around either. Yet, she insisted that they help, so much to my embarrassment I accepted. After all, swallowing pride versus losing my liver and dying - well, I hope my Mother forgives me.
Of course, UMC was supposed to call me back this afternoon to tell me what the labs showed. Did I get a call? Nope. Nothing. Nada. Once more, their coordinator failed to follow through on an essential part of the job. So, now, though I feel better and my urine has returned to a more normal shade, I have to wonder until at least Monday. I might hear if something is wrong but I'll probably have to call myself just to be sure if they don't see anything wrong.
At the very least, I haven't been pleased with the whole situation. The lack of support from UMC has been mind-boggling. This afternoon, I decided to do a little more research and found the program had been closed for some time beginning in 2002. The official explanation was the "lack of an abdominal transplant surgeon", but the more broad cause was speculation that the program had been poorly run and too many patients were not listed for "non-medical" reasons. Even the Chairman of the department at University of Pittsburgh, one of the leading centers in the United States, blasted UA's treatment of patients awaiting transplant and the arbitrary criteria used to list patients. After this their surgeon resigned and the program closed for a few years until a new surgeon was located.
Of course, this begs the question, how stable can the program be with one surgeon and a staff who certainly seems to have other priorities than patient care?
I'm very hesitant about the care I've received at UMC and plan to speak to my original doctors at MUSC in South Carolina on Monday about possible alternatives to having UMC follow me any longer.
I have an excellent GI doc here in town now who can handle any local orders for blood work or anything. If I need someone on an emergency basis there are some respected hepatologists up in Phoenix. I would just feel much more comfortable knowing that I had MUSC behind me. Even from 2000 miles away they helped when my Medicaid stopped and I was awaiting Medicare. Never once, with them did I go without medication nor was someone not willing to find an answer to a question or return a phone call. And never once did someone make me feel I was a pest because I had a concern about my health.
So, looking at this experience, if I plan to survive out here, I think it will behoove me, once I'm sure I'm OK and my drugs are in hand, to get as far away from the program at UMC as possible!