Love BP Frustrations

[Riki]

Those who have me on facebook have an idea of what's going on, but I'll do my best to give the whole story.

For the last year or so, I've been battling low bp issues.  It all started a few years ago, actually, after some menstrual issues and having my gallbladder out.  I developed pulmonary hypertension due to low hemoglobin and excess fluid.  It took over a year for me to get back to normal.  In that time, my bp began to drop.  We've tried so many different things, from UF profiles, to sodium changes and dry weight changes.. nothing makes a difference.  Though my bp shows low readings, I have no symptoms.  In the last few weeks, the nurses have been doing some small experimenting, and the now believe that the pulse in my arm is just too weak for the bp cuff to read.  We had tried putting the cuff on my leg.  Even though leg bp's are not as accurate as arm bp's, at least the leg bp's show when my bp is actually dropping, where the arm bp does not.  We have had no luck in convincing the doctor that this way would be better.

My problem with continuing with what we are doing is that, because my bp readings drop, the nurses must react to them, by putting me in minimum UF or dropping my goal.  Both these things help the bp go up, but not for me.  This also means that I'm keeping excess fluid that should be taken off.  I do my best to not take in anything extra, but I still think I'm holding fluid, and I feel it in my abdomen.  I'm worried that I'm going to be stricken with pulmonary hypertension again.  It was not fun the first time, and I certainly don't want to do it again.  I can't seem to get this through to the doctors.  When I tried to explain the bp cuff thing to one of them today, he tried to tell me that if the cuff wasn't able to read me, it would read a zero.  That isn't true.  When the machine can't read, it just doesn't give a reading, and it does that all the time with me.

I've been trying to get a meeting with the entire team, and I've been doing this for a couple of months now, but with the holidays coming on, I doubt we'll get everyone's schedules to jive.  I'm more than frustrated, and I'm not sure what to do.  Anyone have any suggestions?

[kitkatz]

Time to write a letter to the FA, nurse, doctor and whomever you want at your meeting.

[Riki]

The social worker was supposed to be setting it up, but I haven't seen her in ages

What's an FA?

[cassandra]

Hi Riki I'd do what Kitkatz and Noah advise. If you have no symptoms and know what your bp is by your leg, why don't you change the UF yourself?

Good luck, and love, Cas

Nb (nice you're back Noahvale)

[Riki]

why don't you change the UF yourself?

I don't know how to work the machines.. that's what the nurses are for

[kitkatz]

Noahvale is banned for deleting his posts. Please do not reply to him or encourage him in any way to continue to post here.
I have split his post off of this thread and put it into the admin area

kitkatz-Admin

[kitkatz]

An FA is a Facilities Administrator.  Every center has one.

[Riki]

An FA is a Facilities Administrator.  Every center has one.

I'm not sure if ours does, and if we do, it's a government bureaucrat who has no medical background whatsoever..