written on June 24, 2014
We still haven’t figured out why my blood pressure is staying high. The weirdest part is it’s the diastolic that’s staying high – on a typical reading during the day my diastolic will be above 95. My systolic is normally in the 140’s now. This is all strange to me because I’m on three different blood pressure medications. Clearly they’re not working. Now I can understand with my limited kidney function (less than 6% at my last measurement) that my kidneys are having trouble regulating the blood pressure. But it seems to me that the medications aren’t doing their job. Although last week one of the dialysis techs did ask if I took my meds before I came in in the morning. My response - no. At 4:30 in the morning, I’m not thinking of taking any medications. He said that’s better, because when the artificial kidney on the dialysis machine cleans my blood, it cleans out all the medications in there anyway. Maybe that’s what’s going on. Most blood pressure meds only start working after you have a certain amount in your blood stream. Clearly I don’t have that certain amount since I’m flushing my system every few days.
Just another aspect of the “new normal” that I have to get used to.
It’s not really that big a deal, although I am worried that it’s causing, or will start to cause, some kind of cardiovascular damage. And everything I’ve read about, if you have too much damage from high blood pressure, you can’t restore whatever you’ve lost. Sounds like my kidney disease – it took so much of my kidney function away and there’s no way for my body to get those kidney filters back. Once the filters are damaged, they eventually die.
I can tell when the blood pressure gets too high – when the diastolic goes above 100, for example. I get really tired, very lethargic. And it’s like this wave that washes over you. I could be in the middle of doing something, feeling fine, with good energy levels and then I just feel like I have to lay down. Sometimes this lasts for 15 minutes, sometimes a few hours. Let me tell you – when you feel that feeling of wanting to lie down, you pretty much have to lie down. There’s not a whole lot of options left at that point. I haven’t figured out what the trigger is, if there even is one.
It’s like the migraines I get now on days that I dialyze. I’m pretty sure it has to do with my fluid balance – I haven’t figured out what my “dry weight” is yet – the weight at which I don’t have any excess fluid yet I’m not dehydrated. There is no calculation to figure out dry weight – it’s totally a guess. And it can change every day depending on how much I eat and drink. I have found if they take too much fluid, the migraine will start. If they don’t take enough fluid, I might miss the migraine (usually it just delays the start of it), but my blood pressure goes high. All the wonderful new things I’m learning about my body!
I had been thinking before I went to the ER with renal failure that my high blood pressure was causing the headaches. According to my doctor, that’s wrong – the headache is causing the high blood pressure. The kind of pain from the migraine sets off this reaction where my body raises my blood pressure to try and ease the pain or something. Either way, I’m realizing that my blood pressure fluctuations now are mostly fluid based. Luckily, I’ve only had to experience “bottoming out” (sometimes called “flattening”) once, my last day in the hospital when they dialyzed me for the third day in a row. They had finished taking off 6 liters of fluid and my blood pressure plummeted. I became crazy hot, really dizzy and very short of breath. It is a very scary feeling, let me tell you. I had to stay hooked up the machine so the nurse could put more fluid back in me. My blood pressure stayed low for a few days after that though. And when my blood pressure is low is when I feel the best. I at least feel “normal” again.
I don’t know if we’ll ever figure out what causes the spikes in my blood pressure levels. Maybe this is how I have to live until I get a new kidney. Or maybe when I start peritoneal dialysis (the abdominal catheter) it will balance itself out better. Just have to wait and see.