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Lately, the medical advice I’m getting is all over the place. I’m trying to figure out what to do when medical people don’t "agree". They don’t openly disagree, but one will say to do this and one says to do that.

Like blood pressure is an issue. It can go way high, and then not too long afterwards, dip back down with no apparent reason. The nephrologist and the new neurology doc we saw recently are both crazy concerned about it being so high. The nurse practitioner (his PCP) and the home health nurse seem to be less worried since he has no symptoms. The new neurologist says that whether or not he has symptoms, a high blood pressure that stays high for a period of time does damage to vessels.

The nephrologist gave me some blood pressure medicine in case it is too high. The problem is that sometimes on its own it will dip down low, and if I have given him that blood pressure medicine, it goes way low. Once in the hospital that happened. His blood pressure went from 200+ over 130+ and after they gave him the blood pressure lowering medicine, it went to 54/37. People were running around like The Three Stooges. And absolutely no symptoms. They finally figured out in the hospital that with him, his blood pressure goes up and down sporadically, and to give the blood pressure medicine so quickly, without waiting to see if it was going to come down on its own, caused him to almost crash.

So, at home, when it is too high, a home health nurse has told me to continue to take bp every 30 minutes or so and as long as it is going back down, not to panic.

I have been doing the “recheck often and wait and see” approach lately. Over the past few months. And all seems well. Till yesterday, when it was consistently around 200/130ish for 5-6 hours. Finally home health said to give a bp pill. It took another 2 hours to start going down.

Again home health and nurse practitioner aren’t so worried. Due to spinal injury and the whole autonomic dysreflexia thing. The home health nurse told me to reposition his body, and that is when it really started to come down. I really love her, but she is so overworked that lately she’s not returning my calls.

I stay in panic mode a lot of the time, because not being a medical person myself, I’m never certain how to proceed. And he counts on me for everything, including ADLs as well as medication‘s, etc. I’m so afraid for him to stroke out. But I think I’m a little more afraid that if I give medicine to him immediately, and then it does that thing that his blood pressure does sometimes and dips down quickly, then the combination of that and the pill will put it so low that there will be nothing I can do to get him back.

I am pretty good about doing what I’m told by medical professionals. But when they disagree, I’m not sure what to do.

Any common sense recommendations?

[This message edited by WhatsRight at 4:56 PM, Wednesday, November 1st]

WhatsRight, sounds to me like you are already doing EVERYTHING you can feasibly do for him! And following every instruction you've been given.

I can't imagine that worry you are feeling, if you were the last person to administer a treatment and then something drastic were to happen! But what you have been told is what my doctor said, too, about BP coming down after a spike. When it doesn't, that's so scary.

If you haven't already, write down on paper who told you what, and when, and the circumstances. That way you are doing what they are telling you to do.

Thx Superesse.

I even spoke with my niece yesterday. She is an RN, and runs 2 hospice facilities. She always says things like, I think…" and "Wait a little while", and "If it doesn’t get too high…". I am wanting to hear exact times, and exact levels. Which I understand might not exist.

The cool thing about being a nurse is that if someone gives them information, they can come up with a plan. But telling me what to do "if…" and "when…" Is harder because there are so many variables.

Monday at the new neurologist (who seems really experienced with SCI) his Bo was 150/94 and she was VERY concerned. Yesterday, his numbers hung around 185-206 systolic / 97-146 diastolic. But it did go down after I repositioned him, to 105/82. Then, one and a half hours later it was back up to 188/106.

At 11 o’clock this morning the reading was 214/114. After repositioning him two minutes later, the reading was 186/85, and two minutes later 193/104.

I have 2 different Bo meds. One every 24 hrs and 1 every 6 hrs. I’m not sure which one I’m supposed to give him at this point, because of it staying higher longer.

I know none of you all can give me any kind of specific instructions, but it’s just so difficult to try to interpret each one of the doctors directions when they don’t agree.

I dont care if the cause is autonomic dysfunction those pressures are WAY too high. I would be better able to give you guidelines if you give me meds and dosages.
He is definitely at risk of a head bleed or stroke with pressures that high.

I have two medication’s to lower blood pressure.

One is amlodipine besylate 5 mg. One tablet daily.

The other is hydrALAZINE 25 mg tablet. One tablet every 6 hrs.

Home health nurse says if I can’t get bp done with repositioning, I should give the hydrALAZINE because it clears the system more quickly in case it takes a dive and I need something else.

When we get it better balanced, she wants to use the Amlodipine daily as a maintenance medicine for regulating consistent high blood pressure.

The neurologist prescribed some Nitro-Bid paste for a quick bp reduction but no pharmacy in town has it tonight and I have to wait until tomorrow.

I’m wondering if I can give the Hydralazine after four hours instead of six, to see if it can have some affect. The last time I gave it to him was at 6:30, but it had no effect.

He has no symptoms. He never does.

With the exception of a great deal of pain, which is more a contributor to the high blood than a symptom of it.

He had a pain pill at 6:30 pm. Oxy 5/325.

Also, because I’m not very skilled at taking by with a cuff and stethoscope, I am using a drugstore push button automatic one. Bicep not wrist.

[This message edited by WhatsRight at 4:06 AM, Thursday, November 2nd]