I received an email from Dr. Agar regarding his unofficial speculations about the cause of my low blood pressure. I just wanted to share the response here since it pretty much summarizes the situation. The only thing I didn’t really detail is the depth of the abysses I have been to these last couple of months. The way I have been feeling has prompted me to actually get my affairs in order, beginning with making sure Andy has all the information he will need as far as insurance, paperwork, internet passwords, etc, and a rough draft of my living will. It has really been bad.
Dear Dr. Agar -
I’m so sorry I have not updated you before now; things got much worse before they started getting any better and I still haven’t quite stabilized. I’ve spent several months unable to do even the most basic tasks, so I do hope you will forgive the delay.
My doctor ordered the new (3.0 CA) bath in May and I had my first treatment with it on May 9th. However, I only had two treatments of the 3.0 before leaving for New Jersey on vacation and the center where I dialyzed only had the 2.5 CA bath. At that point my BP was in the 70/40 range - where it had been for about six weeks - and it only got worse. After returning home I resumed the 3.0 bath but my BP kept dropping until finally one evening I lost consciousness immediately after going on the machine. When I regained consciousness my BP was 57/33. That was May 26th.
By the middle of June - three weeks on the 3.0 bath - my BP was up to 110/70 - a tad lower than my normal, but normal. Normal! My serum calcium at that point was 10.7 and my phosphorus and PTH were 2.2 and 45, respectively. By the end of June my calcium was 10.2 and my BP had dropped back down to the 90/50 range.
At this point I had rounds with my doctor. She insisted that I continue with the Midodrine, even though it had had no effect and I’d been on it for two months with no liver enzyme tests. She also wanted to start me on Flourinef (sp?). She had prescribed it two months earlier but told me not to take it until my cortisol levels came back. This time she denied ever saying that and told me to take it with the Midodrine.
I went home and thought about it and came up with the following conclusion: if I wanted to discover the root cause of the problem I couldn’t throw three different solutions at it at one time, because if the problem resolved there would be no way of knowing which had been the solution. My aim was to prove that the calcium was the solution, so the calcium should be the ONLY changed variable. I emailed my nurse and told her that I politely declined to take the Flourinef and that I would be discontinuing the Midodrine, as well.
My phosphorus then dropped to 1.6 and PTH to 22 and my doctor told me to start eating as much phosphorus as I wanted, which I did. My BP promptly plummeted back to the 80/40 range within two days of the increase in phosphorus.
(A side note: It seems as though my diastolic BP is struggling to come up more so than my systolic.)
That seemed like proof-positive to me that the calcium was doing the trick so I took it upon myself two weeks ago to increase my calcitriol to .75 mcg per day and also started taking 500 mg of OTC calcium. When I did so my BP went back up to the 100/70 range. The problem is, I can’t tell my center I did that because it wasn’t ordered, but there you have it.
So here’s where things stand now: I’ve stopped the OTC calcium and the extra calcitriol and BP has dropped accordingly (80s/50s). I stated to my center that I wanted to increase my bath to 3.2 CA and my calcitriol to .75 mcg, but the doctor will make no changes until after I draw labs again this month (the reason I stopped the extra calcium and calcitriol), which I suppose is fair enough.
I’m convinced the calcium is doing the trick but I don’t think it’s enough calcium. Here’s my problem: the doctor and the dietician are FREAKED OUT about the slight hypercalcemia and she wants to drop me back down to a 2.5 bath. I don’t think there’s any way in hell she’ll increase the calcium OR the calcitriol (she’s only prescribed .5 mcg per day). They refuse to believe the parathyroidectomy has anything to do with anything even though the problem started almost immediately after the surgery. She wants me to see a neurologist because she thinks it’s neurological even though there is NOTHING to indicate that. She flat-out stated that’s she’s shooting in the dark on this. I am the ONLY one bringing any possible solutions to the table and they are going out of their way to pooh-pooh every study I bring them; I’m quite certain they’ll find a way to dismiss the increase in BP corresponding to the increased calcium, or the dropped BP in response to the lower calcium. They are completely focused on the hypercalcemia to the exclusion of everything else, notwithstanding that I felt 1000% better when my calcium was high.
I asked my doctor, “How many nocturnal patients have you had in your career?” She and the dietician gave each other a blank look and responded, “Well, um, there’s you… um, there was one other before you… and when we had the clinic there were eight, so uh… ten.” A grand total of ten nocturnal patients over the combined course of their careers and I am currently the only nocturnal patient in the entire state of Arizona. So even if I wanted to consult with another neprhologist here - officially - for a second opinion, there’s no one I can consult with because there’s no one who knows anything about nocturnal, no one to back me up. Here’s a funny thing: when I was in-center in NJ the nephrologist there did rounds with me. (Everyone in the clinic made their way to my chair, as a self-care nocturnal patient I was a real curiosity.) He sat and chatted with me for a while and I explained what had been going on with my BP. HE AGREED WITH YOU 100%. So that is not one, but TWO unsolicited second opinions that agree with each other and neither agree with my doctor. She doesn’t want to hear it.
So now I am at the end of my rope and I’m not sure what to do. I KNOW the increased calcium is resolving the problem AND I can demonstrate it but they will not listen. I am afraid they are going to insist on decreasing my bath again and I just can’t do that. I can’t. There is absolutely no point in doing dialysis if the low BP is going to rob me of any semblance of a life. I understand the implications and consequences of hypercalcemia but I am only asking for MILD hypercalcemia. I know the risks but there are risks either way and - if it were up to me - I would rather risk a bit of hypercalcemia and have my life back. They are more concerned with covering their asses than they are about my quality of life and every word out of their mouths has confirmed it.
So, short answer: yes, the calcium was/is the problem. My heart - and the cold, hard numbers on my flowsheets - tell me you are 100% right. Getting my doctor to see it, however, is another matter entirely.
Any more good advice?