A, A, B, C, D...

It's been a rough few weeks for Shawn. Possibly in part due to the hot weather, which he doesn't tolerate well. Also my grandmother, his great-grandmother passed away last week. And finally, the clonidine, even on the higher dose seems to not be working. Put those all together and he's been feeling worse than ever.

As of today, he's adding one more medication to his alphabet of blood pressure meds - an ace inhibitor. So now he has an Ace inhibitor, Alpha blocker, Beta blocker, Calcium channel blocker, and Diuretic. :-( With all that, you think he'd have the blood pressure of a zombie, but actually when he's not having a spell it still stays right at the top edge of normal.

The fact that the clonidine (catapres) isn't doing anything at all seems to suggest that this is not hyperadrenergic flushing. Not sure exactly what that leaves us with, but the doctor at the Mayo, or one of the other two who his doctor has contacted seems to be who he needs to see next. So we're waiting for a response from any of them, and hoping that the latest addition to the medication will help in the meantime.

more meds - and some good news!

When he first started it in late January, phenoxybenzamine was doing a great job of controlling Shawn's blood pressure during spells - the first few months, the highest systolic reading was 150. Then it started breaking through - 160s, then 170s...180s, 190s... then back into the 200's. A few weeks ago he was weaned off of phenoxybenzamine and onto clonidine. The hope is that clonidine will be more effecient, have less side effects, and be easier to take - now that the weaning process is complete, he has a weekly patch. Unfortunately, it isn't as impressive as we were hoping; it's now being increased, and he's still on three other drugs in addition for the blood pressure. In fact, I realized this morning he's working through the alphabet of drugs - he's now on an Alpha blocker, Beta blocker, Calcium channel blocker, and Diuretic. :-(

And I have one more pair of drug names to add to my ever growing list - clonidine = catapres.

Besides the medicine switch, his doctor is contacting three other docters in the US who are doing research on damage to the sympathetic nervous system, which might be the cause of all this. The tests needed to determine that are only available in these three places.

This Friday he saw his neurologist who also thinks we should be seeing one of these three doctors - and his top choice is the one who's at the Mayo. So at this point, we're waiting to see if / when this doctor can see him. Shawn was less than thrilled with the idea of going back there, but as he said "as long as it's a doctor who is interested in seeing me" maybe it wouldn't be so bad.

So what about the good news? Well, it seems like every time Shawn's in town all he does is go see doctors - but this trip was different. The band Heartsfield is just starting to record a new CD, and they invited Shawn to stop by the studio while they were recording. Why would they do that? Well, one of the songs on this new CD will be one of the songs Shawn wrote - "Ridin' on the Rim"! So he spend Friday afternoon in Burr Ridge at the recording studio and had a wonderful time. He was in great awe of all the guitars at the studio, some of which he got to play.

Shawn's next visit home will be on Friday July 3 - Heartsfield will be playing at Ribfest in Naperville - and we'll all be going to hear them, which should be lots of fun. It's nice to have a trip planned that has nothing to do with hospitals or doctors or more tests.