September 19, 2014

Here's an Example of How I Prefer Communicating with My Doctors

Not too long ago about the only way to communicate with your doctor was to call the doctor's office and make an appointment for a face-to-face meeting . . . or if it's more urgent "call 911" as the recorded message often tells you.

By working your way through a phone tree that seems endless, you might be able to leave a recorded message asking your doctor to call you.

But today a relatively small but increasing number of doctors will permit you to communicate by email. Usually this is done by giving you the email address of the doctor's assistant. Given the onerous amount of paperwork doctors are burdened with these days, it's understandable that most would not want to open the flood gates to direct one-on-one emails. But I have one on my team   with whom I'm able to exchange emails.

In communicating matters of substance that require clarity and accuracy, I know I'm better off using e written  communication rather than oral.

Here's an email I sent out Thursday to my neurologist and  the doctor who handles my blood pressure issues. It provides an example of how an email can provide important information completely and accurately and frees the doctor of the need to take notes.    It also provides an update on my No. health concern these days -- the erratic ups and downs in my blood pressure readings that I discussed last week.

Email Regarding Erratic Blood Pressure Readings
A week ago the two of you had given me these recommendations (Nos. 1 and 3 from Dr. B and No.2 from Dr. M.
  1. See if the peaks and valleys in the bp readings would be smoothed by  taking less carbidopa/levodopa at more frequent intervals, i.e. 1.5 tablets every 2.5 hours
  2. Try a low dose (10mg) of the bp medication nifedipine.
  3. Try a low dose of the Parkinson's disease (PD) medication dopamine agonist.
I decided to do a trial of each in turn starting with the pill-free option #1. But I also obtained a prescription for nifedipine.

Here's what's happened so far:
The first couple of days were much like what had gone before -- the peaks (above 150 systolic ) were the primary problem with a few lows (below 100). The peaks happened almost exclusively during carbidopa/levodopa off periods. The lows were more erratic.

I was mistaken in initially labeling the lows as orthostatic hypotension; they have no connection with moving from a seated to standing position. And I also was mistaken in thinking they only occurred in midday outings in hot humid weather.

Things began to change on Tuesday. I was getting readings above 150  on over half of the off periods. I decided late afternoon to begin taking the nifedipine.

Yesterday was a bummer. I got readings of 104/60 during my 3-4 a.m. quiet hour and the readings continued to drop. When the number hit 80/47 at  8 a.m., I decided I'd better take some salt.  I was so shaky that I had to prop myself up by hanging on to the walls in going to the kitchen. By 9 a.m. the reading was back up to 126/69.

The readings continued OK until 4 p.m. when it dropped to 89/52, but unlike the a.m. lows, I was feeling fine. 

Here's today thus far:

2:30 -- woke just to take c/l pill and go back to bed -- 152/79.
4:30 -- 116/62
Did my floor exercises
5:00 -- 91/49 and time for  my c/l pill.
I was feeling very wobbly but this time I was ready and had a salt container in my bedroom. I poured out a little, stuck a wetted finger in the pile of salt and then licked the finger. I had another low reading and did the salt routine again. The systolic number began to go up and by 6:30 the reading was 111/58.

I just now (1:30) took a reading --136/78.

Actually except for the 4 a.m. and p.m episodes, I'm feeling better than ever.

Other than that, Mrs. Lincoln, how did you enjoy the play?

I almost forgot: I may have complicated things by deciding two days ago to stop taking my statin. This was bad timing that unnecessarily tosses another issue into the pot.

So what do we do now?  I wouldn't mind continuing down this path through the weekend and check back with you on Monday.

Let me know.

P.S. Dr. M. -- As you predicted , I did tinker around a bit with 5-HTP at the start but I gave up on that and am limiting myself to  25 mg at bedtime.

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