Background

8/11/17

And on and on and on and on

Every day, someone asks me how I'm doing and have "they" found a match yet.  It truly is a blessing to have so many people care about me. So if someone reading this is someone who keeps up on what's going on with me...... thank you :)

As for the second question: I have no idea. The transplant clinic takes the donor confidentiality very seriously. All they will tell me is that people are calling about me and that they are testing people. They did tell me they have a candidate who is matching so far but still needs to come in for their all day evaluation (which took about 4 hours for me but I had to get a lung xray) and that it's the transplant clinics fault the potential donor has to wait so long, but they won't tell me why. Even worse, at this last check-in, they thought I had already had my bilateral nephrectomy and had the dialysis port put in and were shocked to learn that my nephrologist hadn't done anything since my last visit in May. Because of that, everything is going to be delayed because those things have to be done and healed before I can get a transplant.

I don't know why she hasn't done anything, she keeps telling me she's "working on things - getting things moving" but it turns out not to be true. That coupled with my doctors telling me she doesn't respond to their calls makes me think she doesn't want to handle my case. Which is fine, but I wish she had just transferred me instead of doing nothing. When I called the clinic to ask if I could be transferred to another doctor, the desk clerk said it's their "protocol" to make the patient come into the office, sit in front of the doctor and tell them you want to be transferred to another doctor and why. 😞 I honestly cannot believe they would put all that pressure on an already sick, already vulnerable patient. Especially since I wasn't even allowed to choose which doctor I wanted to see in the first place!

You see, at the beginning, I was told by the transplant clinic that I had to be referred to the transplant clinic by my nephrologist. Well, my nephrologist was in Boston, so they told me it had to be someone local and suggested an OSU Nephrology clinic (implying that it had to be done by an OSU nephrologist). So I called the clinic and told them which doctor I'd like to choose and they told me that none of my choices were accepting new patients and that I'd only need to see this doctor once, for the referral, so I agreed that I would would see her, since it was only once. Well, my care under her has not been good (un-returned phone calls from me when I was having a serious reaction to a medication she prescribed me, my primary doctor who tried to talk to her about it and the transplant clinic) and the even worse offense of literally not doing anything to prepare me for transplant when that is the only reason for our relationship - she is supposed to organize the nephrectomy and the dialysis port. To top it all off, she cancelled my next appointment, during this crucial time, and only notified me through MyChart, which I only check when I get a test done. I think I should have the right to choose my own doctor - I've never come across anything like this before and I've always gotten along very well with the doctor when I'm allowed to choose.

So,I don't know what's going to happen now. With some very pointed conversation, I was finally able to get another appointment with this clinic on 24 August. Maybe she'll make more promises she won't keep or maybe she'll actually get me prepared for transplant, I don't know. But I do know that this is the worst part of having a chronic disease. The constant pain is not fun, neither is the extreme fatigue, the nausea, the headaches, the incessant itching, the bloated abdomen that make suit difficult to get a deep breath sometimes, the edema, the mental confusion. None of those are "fun". But worse is the suffering from all the symptoms and then, when trying to get medical care, having all of my autonomy taken from me, be made vulnerable to the whims of people who don't know me and have no reason to even care how I'm feeling and to be treated with disrespect - all because that is their "protocol". To be honest, it's the worst part of being sick. 😦

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And on and on and on and on

Every day, someone asks me how I'm doing and have "they" found a match yet.  It truly is a blessing to have so many people car...