Life has been out of control busy, and it seems like every time I sit down to write about my heart failure, something pops up. But, as life continues to settle down, I'll do my best to update on a regular basis.
I'd like to start by updating my medical condition.
MEDICAL
As many of you know, my last update had me heading back to the Heart Hospital for another right-heart catheterization, a procedure ordered because of my bitching about being dizzy and light-headed from time to time. 'Bring an overnight bag, just in case' were the words of wisdom before I headed in. ...and the way I understood the appointment, if I woke from the procedure and the 'wand' was still in my neck, I was staying overnight...again. Well, as luck would have it, I woke from the procedure in the ICU, catheter/wand still in my neck...numbers not looking hot, apparently.
...then shit gets real.
Now, because this happened mid August, about 6 weeks ago, I'll do my best to remember, but at the end of the day, the memory, at my age, is always iffy.
Procedure was on a Monday...the rest of the day was spent with procedures and talks/meetings about a possible LVAD surgery...joy joy.
Tuesday brought more of the same, with visits from the chaplain, notary to make sure my Health Directive was in order...also met with a gal from insurance, along with 2 women, 1 talking to me about an LVAD, the other wanted to chat about the inevitable heart-transplant.
At some point, the surgeon stopped in to talk abut the LVAD, saying that the surgery would likely happen in 2-3 weeks...wait, what? ...there is NOTHING about the LVAD, or the surgery, that looks like fun, though would maybe give me a new lease on life until I'm ready for a new heart, a 'bridge-to-transplant', so to speak.
Wednesday rolls around, still in the ICU, and the LVAD chatter has faded...more tests, including a colonoscopy and another ultra-sound of the heart/chest/stomach. My ejection fraction still sitting at about 17 percent, at best. Who knew...
My final test was on Thursday was another treadmill stress-test, a runner with elevation. (...was able to get out of ICU today at lunch time)
I'm still not a fan of the mouth-piece I chew on during the test, but I feel comfortable on the treadmill, more than likely from the years of treadmill-intervals.
https://www.youtube.com/watch?v=nRg46ZMEQ74
The problem with my results, again, is that my VO2 Max is still sitting at 44ish, piss-poor compared to days-past, but too high to get placed anywhere but near the bottom of a transplant list...
Friday rolls around, and FINALLY, I'm released! Set up with new medication...and honestly, I'm not sure if they know what to do with me. My heart is crap, all the numbers show that, yet my treadmill number is almost too high for a kid in heart failure.
So, LVAD, not yet...new heart, inevitable...
...and to everyone to stopped by to say hey, THANK YOU...the love and support was much appreciated.
PHYSICALLY
Physically...well, physically I still feel pretty good, take away the dizzy spells and being light-headed from time to time.
I still wonder how I would be feeling, or if I would still be alive, had I not driven myself to the ER back in March. I more than likely would have done Leadman, and more than likely would have died in CO. ...looks like I dodged that bullet.
Most days, I feel great. I am responding well to my new medication...and I'm doing my best to drink lots of high-quality H2O and to limit my sodium intake.
Dr. H also asked me to limit my physical activity...walking and/or light spinning...cool, but NO racing or 'working' hard. I'm doing my best, but damn it's hard. Most days I feel good and I really want to ride, and most days I don't, but... (...but imagine getting so out of shape that I run a 1:53 and change half marathon? Hard to think about...)
I'm still doing my best to stay fit...elliptical when I can, light spinning, core...anything as long as the HR doesn't get over 120. 25 mile gravel ride from Gear West mid-October, but I'll roll easy...promise.
Weight is still steady at 192ish...could stand to lose 10-12 pounds before Christmas, though it's hard for me to lose weight without 'working' out.
Lisa has been great with getting me on track with my diet and who knows...180 may soon be the new me!
EMOTIONAL
...boy, where to start. I guess I need to start by thanking SO many of you for all of the support. I have been blessed with SO many amazing friends. ...and to Gabe, Michelle, Renee and Lisa, I'm not sure where I would be without the love.
What a roller-coaster of emotions over the past 6 weeks. So many days I feel good...some days even GREAT, yet then I get up out of a chair and nearly pass out and remember, I'm in heart failure.
Will there be a tomorrow? Will this be the last Packer game I see? Is this the last phone call to my sister? ...maybe I'll grow old and be able to walk Torun down the aisle...maybe I crap out while walking the dogs tonight...who knows.
...and I always think about why me? Who knows...maybe it's what I deserve? I know I don't deserve the love I'm blessed with... Every morning I wake up next to a beautiful woman and think, did I die during one of my procedures and this is heaven? SO many raw emotions everyday. ...and what do I do with these emotions? Doing my best at doing my best, but as most of you know, I have a hard time getting out of my own way. I am trying my best...
Today is a GOOD day...woke up with a smile, feeling full of life. Some days when I wake, I really beat myself up with the 'I deserve this' attitude, other mornings are somber. Let's ride today for all it's worth...
Thanks again for all the love and support...and remember, I'm Derek Lindstrom, and I can do anything!
