Update on 'Mysterious Hypotension'

[big777bill]

  I've been keeping you in my prayers. Hopefully you'll be feeling better soon. Bill

[Desert Dancer]

Thanks to everyone for your comments and support!

I got a bit of unexpected good news yesterday: the DaVita medical director - the one my doc is consulting with - used to work with Dr. Agar. So I'm really, really hopeful that I'll be able to go forward with my plan after the 30th. Keep your fingers crossed!

[justjen321]

Updates lady, updates!

[MooseMom]

Updates lady, updates!

Funnily enough, I was thinking this very thing just this morning.  DD, how are things going?

[Desert Dancer]

Well, I had my appointment last Monday and the doctor agreed to raise the calcium in my bath to 3.5K - just what I've been fighting for for the last six months.    So I'm stopping binders - not that I took them often to begin with - dropping my calcitriol to .5 mcg and seeing what the calcium does all by itself.

I had my first treatment with the new bath on Saturday night so obviously I haven't seen any results yet; my BP last night was 54/32 and I'm pretty much couch-locked right now. It's starting to noticeably affect my cognitive abilities and I'm really getting scared. Please keep your fingers crossed that calcium IS the problem and that this will work.

[AnnieB]

Wow - you have really been going through the mill. I'll be sending healing thoughts your way that this takes care of the BP problem pronto.   

Anne

[AguynamedKim]

I really hope the calcium does the trick and you're feeling better soon.  Sending you positive thoughts.

[amanda100wilson]

that must be scary for it to be that low.  I hope that the higher concentration calcium bath helps.

[justjen321]

I'm cheering for ya. BP that low has to make you feel absolutely miserable.

[Desert Dancer]

I swear to god.

My nurse called me today and told me the doctor wants me to come in-center and do short daily for a week. They're concerned because my BP is becoming "more emergent" and they want to observe me. I said, "More emergent? I passed out in MAY, I think it's beyond 'emergent'." No answer to that except an awkward "Yeah". 

So I asked what benefit there could possibly be to coming in-center and getting half the dialysis I usually get, just when I've started the right calcium bath for nocturnal and stopped my binders. Well, she said, there will be nursing staff on hand. Uh, Andy's here with me. Well, we can give you saline. Yes? Andy can - and has - given me saline, too. Well, we can play with the sodium settings. Okay, that's something I can't do but the reality is I've already proven it's not fluid-related. That's the only thing they could point to as something they can do if my BP were to crash while on the machine. Doesn't take care of the root problem; it's completely reactive.

What is it these people don't understand about one thing at a time? Why do they want to keep farting around with all kinds of changes instead of just sticking to one solution and letting it play out? I've only had TWO treatments with the new bath, for crying out loud. Hey! I know what will make things better! Let's completely eliminate phosphorus control and fluid control, cut your time in half and see how THAT works. Yay, makes perfect sense. 

Not to mention that in order to get there I have to take two buses and a train in both directions. Just what I need to do: traipse around in 113 degree weather and pass out in the middle of the damn street.

I told her I'd talk about it with Andy and call her back before the end of the day. I'm inclined to pass. What do you all think?

[okarol]

I agree about making one change and see how it goes. Messing around with a litany of possible factors is not going to help narrow it down.
How are you feeling now?
I don't have any answers but my instinct is to follow the course you're on, at least give it a chance.
 

[Whamo]

My sister's boyfriend is going through a similar ordeal.  He had a 5 hour prostrate surgery.  They gave him the wrong medicine.  My sister checked it out with a friend who is an expert on pharmacy drugs.  The doctor refused to change the prescription.  What could she do?  Changed doctors.

[cassandra]

DD I would tell her that at the moment your body feels like trying the new bath for at least two more weeks, and if there's no further improvement you would love to follow her up on her kind offer.

lots, and lots of luck

[justjen321]

I'm late to the party but I'd pass.

[boswife]

boy am i ever late on this one...  Just want to send my support and    and many    and a plea for you to keep us informed..

[Home hemo]

Not to mention that in order to get there I have to take two buses and a train in both directions. Just what I need to do: traipse around in 113 degree weather and pass out in the middle of the damn street.

Yikes, that doesn't sound safe!

The only things I can throw out are -

- Has Andy ever gone with and advocated for you?  He's a man but even moreso, he's not "the patient."  I feel that my being with my husband saved his life many times.  One time when I wasn't with him, a hospital even wrote on his chart that he was drunk, which of course was ridiculous.

- Do you keep a written record of problems, changes, etc.?  I kept a page of my husband's medication regimen, and on the back kept his changes.  It's amazing how many times it helped docs know when he'd started a new med, what antibiotics he'd had, etc etc.  I also think that somehow having it written out made them pay better attention to my husband because they realized that things they did wouldn't just slip by unnoticed.

- Do you have a good ER that you can use for "emergent" low BP, with docs there who might be willing to prescribe differently than your docs?

Best wishes as you endure all of this.