I am my best advocate. When I was told my kidneys failed, I was just relieved to know what was wrong with me. When I was told I needed to start dialysis immediately, I didn't understand what dialysis was, but I assumed I'd feel better if I did it. Even in my barely coherent state I was asking questions. When the tech rolled the dialysis machine in, the first thing I asked was, "Does it hurt?". While still in the hospital, I'm taken to get a catheter inserted in my chest, I asked questions to nurse who prepped me. When the surgeon came to talk to me about the procedure, I asked questions. I even asked how many times had she done the procedure. Don't laugh. This was all so new and foreign to me. Ok. You can laugh. Lol.
A lot of stuff was being thrown at me and at one point I just stopped everything. I was being scheduled for procedures. Orderlies were coming to take me for procedure and no one had told me about them. I refused to go. That brought the doctors out! Lol. At the time, my primary care physician ended up being my advocate. He'd been my doctor for over 30 years. Yeah. I caught him just a few years out of med school. Anyway. The nephrologist visited 2-3 times. And of course I had teams of residents and interns, and I asked questions. But I still didn't understand the enormity of what was happening. Brian brought me my iPad while I was in the hospital. I started to research End Stage Renal Disease (ESRD) and dialysis. What I read freaked me out. I could barely read the information. But I did. Call it a necessary morbid curiosity.
I was told I'd be on a renal diet, but by the day of my discharge I still hadn't met with a dietician. I asked to see one. She gave me a basic overview, but I was underwhelmed. I read up on it on the Internet. Once I started incenter dialysis, I had more questions. I also researched like crazy. This way I filled in blanks of my knowledge by asking my team questions. As an aside, I was fortunate to go the dialysis center I was sent to. The staff was quite helpful in helping me to understand a lot of things. The doctor, nurses, techs, dieticians, social workers and even the front desk people helped. They were always available to answer questions. Or find the answer for me. My move to Las Vegas was a culture shock. A few of the staff seemed to have a problem with the patient (me) asking questions. I guess some places didn't appreciate a knowledgable patient. Tough shit.
So here I am. 3 1/2 years later. Still researching and still asking questions. That's how I ended up in home hemodialysis. So where am I now? On a whim, I started researching ESRD, hemodialysis and porphyria cutanea tarda (PCT). What's PCT you ask? Remember last summer when the skin on my hands was tearing and blistering? Well that's PCT. officially diagnosed by a dermatologist. Woot! Something else to add to my medical resume. I digress. I did the research. And guess what I found? Iron exacerbates PCT causing flare ups. And what injections do I get at my monthly meetings? Iron! Sometimes 1 vial, sometimes 2 vials. People with no kidneys can't create iron. Talk about being caught between a rock and a hard place. :-( I mentioned this to my team. The nephrologist suggested that since my iron level was still in the acceptable range, even though it at the low end, that we hold off on the iron this month and see how it goes. Now I will still get iron, but not necessarily every month. This will be like an experiment. He wants to make sure that I have enough iron to do stuff. Like swimming. I understand that he doesn't want me passing out in the pool. Brian agreed. Hell. I agreed! Lol.
My point is, I researched. I talked to my team about it. And they listened. And worked with me. I also started clotting this week. Time for an angioplasty. Think of it as fistula maintenance. And that's fine. I called my nurse to let her know it was time for the angioplasty. I couldn't get an appointment until Friday. My nurse and I discussed treatment until I could get the angioplasty. The danger is the clotting halts dialysis. And I'm not trying to not have treatment. Isn't that odd? I hate dialysis. HATE it. But I don't skip treatment. Ever. It really a case of life or death. Anyway. We've adjusted some meds and I haven't clotted since. And have continued treatment. But I advocate for me.
Now you may not have anything like ESRD, but you still must always know what's going on with your medical health. Know your meds and interactions. If you're diabetic or hypertensive know what you need to do and ask questions and research. If you think something is not quite right, ask questions. Be your own medical advocate. The health professionals mostly are quite helpful and knowledgable, but they can stumble...not deliberately.. It's up to you to know you best. Don't ever be afraid to ask questions or reject something even if you have to do it forcefully.
That's it for today. Got the manicure and pedicure yesterday. My toenails are the most perfect shade of purple!!! I've been threatening to try one of the many foot spas out here. A foot rub is a wonderful thing!! Have a wonderful day!!
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