Well, it has been a lot longer than I had planned since I have actually blogged about anything. I started this blog during my vacation time, and had this ideal notion that I would have plenty of time to ramble on about lots of things. However, this has turned out to be a pipe dream. So, a month later, I'm just getting around to writing something. I didn't really want my first blog to be about dialysis, but it's been the most interesting thing that has happened to me lately, so I wanted to share the sweet success I have recently enjoyed.
First of all I need to give a little background story. I started dialysis in October 2010. I'm just rounding out my fourth month. Since my first day, I have been having this battle over blood pressure cuffs. Now, you have to understand that I'm a "heavy" person. I have large arms. Not exactly a glamorous thing to admit about oneself, but it's important to understand for the sake of the story, so bear with me. When the nurse or the PCT's see my nice large arm, they automatically reach for the "large" size cuff to take my blood pressure. Now this would make sense, but the large cuff at the center is about big enough to take the blood pressure of an elephant! (this is only a slight exaggeration, it is quite large) So now this is the frustrating part, but looking back at it now, if I were an impartial observer, I would probably find it quite amusing. After grabbing the large cuff, it begins this cycle of stupid. That's the best way I can describe it. Not to say that the staff is stupid, but the way they approach the whole situation just seems stupid. So here is the cycle: I have to wear the cuff for the entire 4.5 hours, the machine takes my blood pressure automatically every 15 minutes, they put on the cuff, it's loose because it's too big and no one can get it tight enough, it might take one good pressure, then it slips; it tries to take the next pressure- inflates, starts to deflate, then inflates some more.... then some more.... then some more..... now I'm in agony! It's bruising my arm! OMG is this thing gonna stop? Is it trying to cut my arm off? Well, it's about to succeed! .... Dear Jesus, please make this machine stop squeeze the crap out of my arm!. It finally stops squeezing, but no bp; the machine beeps until someone comes and fixes it; they adjust the cuff; it takes again.... oh no, here we go again. Inflate, deflate, inflate, deflate, inflate.... inflate some more. Oh geez, can I just go home?
So that's the stupid cycle. It seems to go on forever, and it literally goes on all night. Instead of figuring out the root of the problem and fixing it, they just fiddle with it and try to make it take a bp right now, regardless of the fact that it's miserable for me. The first time I complained, I was actually told that blood pressure cuffs cause discomfort and I would just have to "deal with it". I could not believe the words I had just heard. Did the nurse really just tell me that? Does she not understand what I'm saying to her? Am I not a patient with rights here? WTF??? (pardon my abbreviated French) I was angry. So I did the only thing I knew to do, and that was to refuse to use that stupid large cuff. So they tried a regular sized cuff. Believe it or not, it will take a blood pressure on my arm! They seem shocked every time. You would think it was a miracle that a regular sized cuff was able to take a blood pressure on a fat ladies arm! Praise Jesus, hallelujah! But no, the nurse is a doubting Thomas, and swears that it couldn't possible be accurate. I say, the large cuff isn't accurate, she swears it is. So we try a regular sized cuff on my forearm. But this doesn't satisfy her because she says that isn't accurate. So now, we have another stupid cycle- arguing over which is accurate, and which is not. Much to the dismay of the nurse, I demanded that they use a manual blood pressure cuff to take my initial and ending pressures, and the time in between, they could put a regular cuff on my forearm. That makes everyone happy, right? Well, it did for awhile. So since my nurse can't seem to make up her mind and stick with a decision (she's forever changing things) she decides out of the blue one day, that the manual cuff wasn't taking an accurate pressure and we needed to use the large cuff again! Can you believe the nerve of this broad? I couldn't. Here we go again with accurate, not accurate.... large cuff, regular cuff. I put up with it for a few days then decided it was all "stupid" starting over again. I couldn't believe that they didn't seem to have to ability to find a blood pressure cuff to meet the needs of their patient. So I took matters into my own hands. I knew I had a cuff at home that fit me perfectly, so I brought it with me. Now I insist that I use my own cuff and their cuff (large or small, automatic or manual) are not to come near me. So I feel that I've won the battle. For now at least! I just think it's a shame that as the patient, I had to figure out an answer to the problem myself. Between the team of the nurse, doctor and a handful of PCT's they couldn't figure out how to solve this problem.
Lesson learned from all of this: advocate for yourself and don't put up with "stupid." They don't have the time or interest in figuring out how to make it a positive experience for any patient. I really hate dialysis in general, and especially hate it on certain days. It's miserable having to sit there and be away from my family, my daughter, who is at home missing me. I shouldn't have to put up with crap like that, that just makes it worse. So my words of wisdom... no matter what kind of health care people your dealing with, don't put up with "stupid." You are your own best advocate!
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