Since I started wearing (thigh high) compression stockings, I have noticed multiple bruises up and down my legs. I also have more purpura/vasculitis than before on my legs. I have had pigmented purpura, a form of vasculitis, for 15 years. No one seems to understand it, so if anyone here knows anything or has had problems with this, I'd love to hear from you.
Thought I would give an update. I went to the Cleveland Clinic this summer/fall. Now I am finally scheduled to see a local cardiologist in mid January and will ask him about the bruises/purpura too. I am looking forward to having a local cardiologist who can help supervise my treatment. I am eager to try out some of the new meds that were suggested by my dr. at the Cleveland Clinic. I am hoping this local cardiologist is knowledgeable b/c he supposedly has two POTS patients who have seen Blair Grubb. That gives me hope. Re. other Cleveland recommendations, I am trying hard to get a lot of fluids and salt. It is hard. I have not noticed a big difference but will keep working on this. I was also urged to do cardiac PT program and will talk to new cardiologist about this. I am nervous since I have pretty severe exercise intolerance and also will probably have to drive far to PT since I live in a rural area.
I started cardiac rehab recently. I was extremely apprehensive about doing this, especially with it being 3x/week (and scheduled 1.5 hours/session!!), but I have to say it is AWESOME. I'm sure it must vary greatly depending on the facility, but I can honestly say the cardiac rehab department is by far my favorite department in this whole hospital system now. I'll even name names, since I'm giving rave reviews here: Ohio State University Medical Center cardiac rehab in the Martha Morehouse Center. Those people have bent over backwards and about tied themselves in knots to adapt the program to my specific needs, rather than making me fit into some pre-fab program (which was my fear). My exercise stress test was done on a seated piece of equipment rather than standing on a treadmill (!), they used a full-face oxygen mask instead of mouth-only so I could still talk and tell them if I started to have symptoms during the test and wanted to stop, they had two mats lying alongside the equipment to move me onto the second I started to feel faint, they had an RN in the room right at my side as an extra precaution, they keep a mat right near me during all my sessions for the same reason, they have me do my sessions on exercise equipment that's in close proximity to the nurse's station so they can get to me quickly if need be, they selected a machine for me to start out on that's seated and keeps the feet elevated throughout the exercise and doesn't use arms (because having arms up and moving around is one of my syncope triggers), they're planning very gradual increases in activity as it seems I can tolerate it ... I can't say anything bad about it. And I'm already making gains!! I thought I would hate it, but it's turning out to be the opposite of all my expectations. I wish every one of us had access to this that wanted it!! (I know cost/insurance is a barrier for many.) :-/
I don't have time right now (eating lunch ... don't ask ... we're a "second shift" household) to look it up, but I did find some good commentary on it once by Dr. Phillip Low at Mayo. He's one of my favorite US experts, and it's the only thing I've found to date regarding the arm movement issue specifically. If I recall correctly, the gist of it had to do with changes in the localized circulation patterns that occur when the arms are positioned at/above shoulder level such that there may be vessel compression or something to that effect that even further exacerbates our thoracic hypovolemia which is created by the sum total of our various orthostatic effects (poor venous constriction in the lower body, plasma loss into surrounding tissues over time spent upright, ...).
Next time I come across that one, I'll try to remember to post it on here for you guys to see since it is an interesting quote. I need to re-find it again anyway for a presentation I'm doing in the near-ish future.
It was part of the treatment recommendations that Cleveland Clinic gave me. So they told that to my cardiologist here locally over the phone. He sent me to a cardiologist in our hospital system that does the cardiac rehab stuff, who met with me and evaluated me to see if I actually was a good candidate for cardiac rehab. He concurred that yes, I would benefit from the program they had here (Phase II Cardiac Rehabilitation--I think everyone else is pretty much heart attack survivors etc.--that's what it's designed for). During Phase II you are monitored with telemetry the whole time (EKG) by a nurse. Once you finish that, you have the option of continuing on indefinitely in Phase III at your own cost (scholarships to reduce the cost are available, though, at least at my hospital); during Phase III you do the same types of things but you no longer are wearing telemetry.
The insurance crud is a whole different matter--PM me if you want to know how that went down.
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