I figured I'd show my head in here to update, ask a few questions and maybe motivate those who may need it. 2015 has been rough! I've spent approximately 2 months between 2 hospitals and 2 acute rehabs (3 IVIG treatments and 2 stress tests one was treadmill the other was chemical) Good news is my heart is A OK! One of my "diagnosis" from last hospital stay was excercise conditioned bradycardia and another was Hypertension. The hypertension is looking to be caused by a problem with my autonomic system. Anyway so I have a Muscle Biopsy scheduled for May 11th. My PCP is suspecting a Mitochondrial Disease may be at play. I have a Tilt Table test on May 1st and a Single Nerve Fiber EMG on the 12th of may to either totally confirm Myasthenia Gravis or rule it out. I haven't responded as well as expected to all the IVIG's and medications that I'm on, though I'm better now than I was before first hospital stay. So far it doesn't look like running will be in my future but who knows.
Anyway I've had to get home BP kit to keep watch while exercising and there is one thing I've noticed. My heart rate just doesn't seem right. I mean Just a few weeks ago an ER doctor was talking to me about maybe I have a problem with deconditiong (which I'm sure I have a little) but I would think my heart rate would be much higher.
Examples MY BP and heart rate taken RIGHT after a 6 mile bike ride on nowhere bike (done in 19:43) was 165/93 and HR was 59 Now I wear my garmin during bike ride so I can have a measurement of my HR and my ave HR was 128. I waited about 10 minutes than rowed 3200 meters (15:47 ave 20 SPM) but I can't trust my Garmin on the row because my heart rate got up to 245 and my average HR for the row was 221. Not sure what happens to the monitor while I row but my BP and HR right after ( I mean within a minute maybe 1 and a half minutes (yes I took it all sweaty and I trust the bp kit I have btw the HR on that AND on the garmin were both the same number when my BP finished) was 170/88 HR 63. Now I would NOT expect my heart rate to drop like that or if so be at least a little higher. I mean I'd LOVE to be in GREAT shape but reality is after 2 months in the hospital and maybe 4 days of not using a wheel chair , I just can't be. BTW if I hadn't tacked on those 2 miles on the bike my HR average would have been more like 106. I'm sure my resting heart rate is under the 39 it was at my last hospital stay. Can I blame all this HR stuff on me being a freak of nature? Oh and as far a the hypertension, it's much better now than it was 2 weeks ago. It was to the point that even sitting up got it raised high , let alone anything else. Now it's normal when I wake up. I just took it (like 15 seconds ago) and it was 130/76 with my HR at 55
So here I am 45. Got a big ASS pill sorter thing, taking more meds than I ever have in my life. Taking my BP several times a day each day, just to do what I can to see if I can keep my ass out of the hospital. Trying to remain active. Rowing makes my Heart rate go too high and Bike makes my diastolic pressure go up if I'm on it more than 4 or so miles. Oh and BTW I am now taking medication for my cholesterol. I've NEVER had bad numbers ever until I was in hospital last stay. So now dealing with unstable hypertension and high cholesterol, yet I have exercised conditioned bradycardia and a documented resting heart rate of 39 (wore Holter Monitor for 5 days)
See what happens when you stop running!!! Hope everyone is still kicking ass! I'm kicking my ass between rowing and biking each day
Your toughness is made up of equal parts persistence and experience. You don't so much outrun your opponents as outlast and outsmart them, and the toughest opponent of all is the one inside your head." - Joe Henderson
Walk-Jogger
Rocken, It's good to hear an update from you, although I wish the news was "more better". I don't have any magic words of advice to offer, but hang in there, and do what you have to, to take care of yourself. There's more to life than running. (I hope that isn't sacrilegious, LOL!)
Retired & Loving It
Rocken, It's good to hear an update from you, although I with the news was "more better". I don't have any magic words of advice to offer, but hang in there, and do what you have to, to take care of yourself. There's more to life than running. (I hope that isn't sacrilegious, LOL!)
+1. Here's pulling for you Rocken.
"He conquers who endures" - Persius "Every workout should have a purpose. Every purpose should link back to achieving a training objective." - Spaniel
http://ncstake.blogspot.com/
Feeling the growl again
I've been loosely following on fb whenever I see you post, said a few prayers when I see a hospital involved in the post. You have an incredible strength I haven't seen in many people. Hang in there and please keep us updated.
"If you want to be a bad a$s, then do what a bad a$s does. There's your pep talk for today. Go Run." -- Slo_Hand
I am spaniel - Crusher of Treadmills
old woman w/hobby
Yes, this.
steph
Thanks for checking in and giving an update. Hang in there. We're here pulling for you!
Hi rocken! I'm glad to read you can still put in so much work, even with your current issues.
FWIW, my resting HR has been measured as low as 30 (by EKG at the doctor's office, no less). It doesn't seem to be dependent on my fitness level, either. My exercise HR is also about the same now (I'm fat and out of shape) as when I was 15lbs lighter and quite fit. But yeah, mine usually takes maybe 3min to come down from~130 to ~75, then another 2-3 to drop into the 50s (walking around). Cycling doesn't get it as high -- usually about 10bpm lower than running HR when working at the same perceived effort.
You have an incredible strength I haven't seen in many people. Hang in there and please keep us updated.
+1
"I want you to pray as if everything depends on it, but I want you to prepare yourself as if everything depends on you."
-- Dick LeBeau
Prince of Fatness
There's not much to add to what everyone else has said. Just know that I am watching on FB from the sideline and pulling for you.
Not at it at all.
Rocken, you are the toughest person out there. Really incredible.
And we run because we like itThrough the broad bright land
Yup, fingers crossed they get to the bottom of things - hang in there.
Rocken - you are incredibly strong. hope the docs get to the bottom of the issues.
def keep us updated.
Ready, go.
I've been wanting to post in here for a few days but haven't had the energy needed. I still don't , in fact I may have over did it.
NO it's not sacrilegious! When you've gotten so bad where you can't do anything but breath on your own, just being able to to do the little things in life that you don't even realize takes any energy is enough (well not completely enough) I'll always be a runner at heart but if I can't get back to it, I won't die. I'll miss it but there is sooooo much more. Anyway I'll get back to this thread when I have the energy to do so, just wanted to say thanks to everyone!
Village people
This. Sounds like a lot is going on. I really hope things start to improve.