Angelika_23 Posted May 2, 2011 Report Share Posted May 2, 2011 Hello everyone,I haven't been on in a while. Lots of stuff going on...Anyway, my pulmonary doctor wanted me to start getting some exercise, but I can't because of fainting and HR issues. He referred me to cardio/pulmonary rehab and my insurance approved it this time!My first day was Friday, and it was a BAD day. Three minutes in on a recumbent bike thingy (at the lowest and slowest setting) and HR was 169 and I was down for the count. Couldn't do the 7 minute walk, either. I ended up in a wheelchair and had to have a friend come get me.So I went back today and I was able to exercise for half an hour total on three machines, HR only got up in the 120's. I am super excited about that! They wouldn't let me do the 7 minute walk this time, but I am still excited I was able to do something, wimpy as it was!Isn't it odd how one day was totally bad and then the next time was not wonderful but I was able to stay upright and accomplish something?Angela Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 2, 2011 Report Share Posted May 2, 2011 That's great that your second day was good! Keep us posted on your progress. Quote Link to comment Share on other sites More sharing options...
Noreen Posted May 2, 2011 Report Share Posted May 2, 2011 Wonderful news! Keep at it,I would put off the walk for a little while, though. Best to stay low as the fall isn't as far. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 2, 2011 Report Share Posted May 2, 2011 With all this exercise talk lately I have been thinking I should give it a try, but I am in such bad condition there is no way I could go to a regular gym. I was wondering if cardiac rehab would be an option. It's so great to hear that your insurance approved this for you and to have seen progress in only ONE day?? wonderful! Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 2, 2011 Author Report Share Posted May 2, 2011 With all this exercise talk lately I have been thinking I should give it a try, but I am in such bad condition there is no way I could go to a regular gym. I was wondering if cardiac rehab would be an option. It's so great to hear that your insurance approved this for you and to have seen progress in only ONE day?? wonderful!Please do not think I made that much progress in one day; it is just that I was having a bad day on Friday and a decent day on Monday. Wednesday could be that I will be on the floor again. I was not trying to imply at all that I was already making progress, just trying to figure out what makes a good day vs. a bad one.I have a membership to the YMCA locally, but I have fainted on them several times so they don't like me to come in there anymore. I feel "safer" going to cardio/pulmonary rehab. They don't yell and try to call 911 when I collapse. They know what to do and do it quickly and efficiently. No drama. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 2, 2011 Report Share Posted May 2, 2011 Oh... I guess I had a **duh** moment! Yeah, I guess improvement in one day would be pretty miraculous. lol. Anyway, I hope it helps and please keep us posted. I'd feel safer in a rehab setting too. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 3, 2011 Report Share Posted May 3, 2011 Naomi don't be afraid to give it try, even if it's something small. I need to give it another try myself, it's been about a month since my last go round and crash. I keep getting back up on the recumbent bike and giving it a try. Sometimes my first step is house work, I'll vacuum the livingroom and see how I feel. Baby steps are fine..... Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 4, 2011 Author Report Share Posted May 4, 2011 Didn't have so much fun at rehab today. My HR was higher than it was on Monday, and tended to jump quickly.I was on a recumbent bike, and doing fine, in the 90's, and when I stopped I got dizzy and my HR went up. The nurses were impressed that my HR went from 90 to 150 in less than 20 seconds. So I ended up on the floor.I guess this is going to be one of those things that wax and wane. But darn I am so frustrated! WHY did it jump up like that AFTER I was done exercising? Isn't that odd?Angela Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted May 4, 2011 Report Share Posted May 4, 2011 That's the million dollar question, I've been trying for the past 6 years. I'm still at square one, even house work can cause a huge crash. Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 4, 2011 Report Share Posted May 4, 2011 Yes, it is frustrating when our bodies don't react "normally". I did cardiac rehab last fall and I think overall it helped a lot. But having said that, I had an episode at their gym about 3 weeks before I finished where I had a big "crash" and they ended up sending me to the ER. Once I had a couple weeks to recover from the crash, then I quickly got back to nearly where I was before the episode. When I tested out of the program they showed a 233% increase from where I had started 5 months before. Made me laugh because had they done the final test 2-3 weeks earlier, I would have been down to about 15% of where I started. Last week at the regular gym, I was doing my "cardiac rehab" program and my HR was up to 140 while exercising. Then I came home, rested for 2 hours (HR down into the 90s) and then took a shower. My HR when I got out of the shower was 150 and it stayed up for over an hour. I'm wondering if the exercise makes you dilate your peripheral blood vessels so that when you stand up afterward, your heart has to go faster to get the blood back to the heart and out of the extremities? May be a case where in the long run exercise is beneficial overall, but in the immediate situation may make things worse for a bit?Frustrating to say the least to have it all be so variable. Sure hope you find the cardiac rehab to be beneficial. I enjoyed it a lot, even when I wasn't having any kind of fun, or feeling well doing it. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted May 5, 2011 Report Share Posted May 5, 2011 Angela, I don't know why your heart rate would go up after exercising, but in my case I am finding exercise to be both helpful (over time) and very frustrating (in the short term). The mast cell disorder people talk a lot about things that trigger anaphylaxis for them, but not necessarily like eating a peanut would cause anaphylaxis in someone who is allergic - with mast cell disorders they use the analogy of a cup gradually filling throughout the day as you do things that "trigger" symptoms. For me that has been a helpful image. Some days I wake up with the cup already 3/4 full and it doesn't take much to tip it over, and other days I can do a lot more. For me, exercise seems to be a huge trigger in the short run - the more I try to do during the day, the more likely I am to end up with a flushing/tachycardia/shortness of breath, etc. episode at night. The more triggers I am exposed to (heat, standing, stress, exercise, eating, alcohol...) the more likely I am to tip over into a severe episode. It feels like the OI, hypotension, tachycardia, etc. are my body's reaction to ongoing anaphylaxis triggers (and the whole process over time has caused this nasty POTS business).So I guess what I am trying to say is maybe exercise is also a trigger for you and you are noticing your heartrate increasing as it tries to hold up your bp which falls in response to degranulation/anaphylaxis. Just an idea. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 6, 2011 Author Report Share Posted May 6, 2011 Okay,No floor time today! I did have several episodes of tachy, but was able to deal with it better. I did notice, that right before I get really tachy my heart - lurches - or something like that. Very hard to explain, but it does that lurching feeling, then my HR shoots way up very quickly. It does it at some of the oddest times. I don't understand it. Is it possibly my body's way of getting used to exercise again? Maybe adrenaline?Angela Quote Link to comment Share on other sites More sharing options...
comfortzone Posted May 7, 2011 Report Share Posted May 7, 2011 Angelika ~ What did your holter test ever say if you had one? I know with mine it was a baseline of sinus tach - average heart rate of 100 - and then a lot of palpitations - that showed up as paroxysmal atrial tachycardia - short runs of SVT ... pretty common for young people ('cept I'm not young) exercise, alcohol, lack of sleep, spring or fall, caffeine seem to trigger people...I too would get that lurch - or 'reset' thud and then off to the races lol... Now that I'm on a beta blocker it comes less often - and the tachycardia that's normal baseline pretty much went away. I get periods of fast - periods of back to lower - which is weird when you take the same amt. of beta blocker... Why a week of 90's to 120 -- same med -- and then this week 60 to 65.... I think sometimes I just function at a higher adrenergic state and I get what I get - sometimes the med wins - sometimes my tachycardia wins ~ c'est la vie!Much continued 'good' runs of days at your program ... Hope they are all very good indeed! Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 7, 2011 Author Report Share Posted May 7, 2011 Nowwhat,I am currently on a small dose of Toprol XL, and like you, some days I am "normal" and some days I am not. I can't figure out why. My holters have always come back normal but fast.The other odd thing I forgot is that the nurse noticed that whenever I am having my "spells" my skin turns red. My face, my arms. Isn't that just weird?Thanks for the good wishes!Angela Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted May 9, 2011 Author Report Share Posted May 9, 2011 No fainting today at rehab, and had less of the "lurching" episodes. HR did stay around 114 even seated, got just above 130 a couple times while I was sitting at a recumbent bike thingy. The different thing today was I had and still have some chest pain unless I am laying down. I am not sure what that is, but I wish it would go away.Angela Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 9, 2011 Report Share Posted May 9, 2011 Thanks for keeping us updated! Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted June 1, 2011 Author Report Share Posted June 1, 2011 I think I set some sort of record today. I was on a recumbent bike for less than two minutes, working slowly at the lowest setting. I still managed to get my heart rate over 160 and hit the carpet. I don't know if the heat is affecting me, although the rehab center is air conditioned.This "floor time" is getting real annoying.I go see Dr. Jaeger at Cleveland in a few weeks. He'll probably put a holter on me for a couple weeks. I wish my body would just suck it up and let me exercise! Sorry, rant over.Angela Quote Link to comment Share on other sites More sharing options...
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