Trip to hospital and then to boxing, but that is good news (and more on S.).

An intended short post today because by the time it had come for my afternoon nap the heart erratics were so consistent and painful that I decided at 2:30 pm to go to the hospital. I got the taxi there and Linda met me and several hours later we got to see the hospital cardiologist who was able to illuminate a lot of what was going on as well as the terminal and non-terminal outcomes. It was clearly central autonomic failure to him and he said that the erratics were a problem which beta blockers and a pacemaker could deal with. It was the failure of my (missing medical word here) arteries and veins to dilate as well as transfer and carry oxygen that was the problem. My face turns grey because there isn’t proper oxygen due to this respiratory and vascular system failing. However, the weaker I get the more erratics occur, and the more they occur while weak, they hurt and effect me but that fainting and going green or grey IS an oxygen problem but the heart is pumping fine, just the oxygen isn’t getting there (and I am in pain!).

For example, just with the erratics, the oxygen stats went from 100% to 90% and back, up and down, though the heart had erratic, he said this is NOT the problem, the constriction and/or lack of ability to open veins and arteries with the central autonomic system is the problem (along with conversion of the oxygen from the lungs - not the blood pumping it around). Ironically, as I talked to him, my oxygen dropped to 89% (which is considered a lung disease, hence I DO talk too much); this is because of a weak diaphragm and poor conversion, I cannot deep breath or convert properly so using normal conversation breathing actually makes me in severe oxygen deficient. Also, it is kind of odd when an alarm bell for oxygen deficient goes off and then you realize it is coming from YOUR machine, and you are kind of embarressed and trying to think up good reasons of "I didn't do it." when people are more like, "Why are you still upright....and still TALKING!"

He said, “There is a path I follow when I see a heart attack; I see 120 heart attacks within a limited time, so I know what to do in all circumstances. But you (talking to me), even for someone who specializes in autonomic failure might only see a case like yours once or twice in their entire lifetime. (long pause) You will mostly find that it is through trial and error that you find out what works best.” He approved of the Gatorade. We asked him what systolic levels were “livable” and he said, “200 and over…for a while.” I told him an EMT from death valley said I was going into heat exhaustion every day and we used oxygen to combat it and it helped but we didn’t know why. He said: “That would makes sense as the heat exhaustion would turn a compensating body to a decompensating body” (Now, can anyone explain that to me? Because it sounds like I AM a zombie?).

Anyway, I asked, because I knew that lung and other late stage cancer create autonomic failure, what autonomic heart failure would look like. This is when he said, it won’t happen and said that while it was HIGHLY unusual for a ER heart specialist to begin and monitor treatment, he would begin me on a step level of beta blockers to see what the effect is. “And quite honestly,” he said, “With your system, it could be anything.” So I am starting on the 90 year old “granny” level. He said, my autonomic failure is more likely to occur with a failure of the circulatory system to function in a way that transports oxygen viably (as in veins don’t open and close). And that the yellow and red side are "facinating" and "to be expected in a case as complex as yours." (Was I complemented or insulted?)

So, we were released from the hospital and after a discussion with Linda, I said that it seemed the most important thing was for me to “jump start” my micro-capillary system (and cardiovascular too) no matter what cost. Which is why, after stopping for a 30 minute nap I was at the gym (with the hospital tag around my wrist), wrapping up my hands with my volunteer, Liz. Linda was there too because it seemed a fairly good chance (like 50% that I would pass out at least once while trying to sweat, as I was too weak for two weeks to exercise at boxing). Anyway, 25 minutes later and NO SWEAT. I was freaking and totally went berserk against the heavy bag for about six minutes. Then I rolled over to Linda and said, “I’m sweating!” And then boxed another 20 minutes. I got home, my heart was crazy with erratics and I FELT NOTHING. Woo hoo! (how long is that "felt nothing" going to last? Err…not long, like I FEEL ya now!).

My home care came and I told them the GOOD news: they don’t have to worry about my heart and pain; we just have to worry about pain control from my heart as no matter how much I scream, I won’t die. Now, our main concern is respiration. We not only cut the major concerns for night workers by 50% but I believe, based on the curve of the erratics and other heart problems (Which I considered the #1 autonomic problem), I honestly believe that (barring a faster oxygen conversion deterioration) I have at least an additional year. Yeah, I might have to sit inside a fridge during summer, be on oxygen a lot, have a pacemaker and use a motorized (gasp!) wheelchair but I’ll be alive!

And on that note, we came home to find an email from S.’s partner to say that she has come out of the operation which went very well and in the recovery room she was talking to her sister (so memory, speech and language all a go!). Hope we find out about sight in a few days. But yes, brain mass gone, and still speaking. Go S!

As for me, for going to the hospital, besides the INCREDIBLE amount of pain I will/am be in tonight (my blood pressure an hour after boxing? 178/156 – hey, but according to the heart specialist it is “livable”) and the recovery tomorrow, I think that my going to the ER actually worked (no not cured but on beta blockers AND I know what type of ‘wabbits’ to watch out for now). So, kinda of crappy in the pain/hospital way but kind of optimistic in the “Damn, I really may be going to Sakuracon!” realization. The specialist did mention that due to the path of my autonomic failure T.I.A.’s (mini stokes) are going to be more common (already had one, thanks!), and more indicative of the autonomic failures which will um, kill me.

Sorry for all the tech speak. Just: Went to hospital, went boxing – not advised to combine for other people but worked for me, now I just have to PAY for it (like in tears, since I don’t sweat, at least only 25 minutes a week – hee hee!)