I know, I know, quit your bitching...I'm really trying to keep the blog updated, but life has plans for me most days, and frankly, the heart news is more of the same...ugh. I look forward to the day when I can talk about GREAT/NEW news...but alas, not today.
Not sure if I posted about the heart biopsy that I went through last month...oh joy. The test for cardiac sarcoidosis came back NEGATIVE, which is grand news, though beyond that, just seems like I'm treading water, deteriorating just a tad every week.
Test was simple in that a catheter was run up from my groin into my heart...from there they snipped a tiny sample of my heart, that's all. I was a mess for a day or 2 after that test...
So, how am I feeling? A solid C+ on most days, though I had a really hard day last Wednesday as I was really out/short of breath all day, to the point of it scaring me.
Sitting in a movie (Mission Impossible - Fallout, thumbs up!) and at one point my breath was gone, almost to the point of gasping for air...WTF was that? By the next day I was a tad better, and by Friday...all good. I brought this up to doc, who was NOT impressed...soooo, next Monday I will be repeating the Right Heart Catheter test, looking for numbers, though as much I'd like to think that they're looking for improved numbers, I think it's more to see how much I have 'slipped' in 8+ weeks...a prep for the LVAD. Bring that shit on!
(LVAD... Left Ventricular Assist Device)
Speaking with the nurse about my appointment scheduled for Monday, she mentioned I was going to learn all about the LVAD, when/where/why.
I did my own research (?) on the LVAD, and it's not as simple as I thought it was, it's actually open-heart surgery!
An LVAD is a surgically implanted mechanical pump that is attached to the heart. An LVAD is different from an artificial heart...an artificial heart replaces the failing heart completely whereas an LVAD works with the heart to help it pump more blood with less work. It does this by continuously taking blood from the left ventricle and moving it to the aorta, which then delivers oxygen-rich blood throughout the body. (Stole that last paragraph off Google...I obviously don't write THAT well!)
...oh joy.
So, is this the next step? ...a Bridge to Transplant as it's called, or am I still months away? I guess I'll find out more at my Monday appointment...make sure to pack an overnight bag, she says...wait, what? Again, WTF!
I guess the bigger question should be, how should I be feeling? I suppose that I should assume that now that they want to chat about LVAD and transplant, that I should just wrap my mind around that...embrace the suck. But, should I be sad? Mad? ...should I be crying? I honestly don't know...in a way I feel numb...getting through life day by day, knowing what's down the road. I'm not mad, sad, crabby...just, blah. When you think about it, I should want this done sooner than later...if it's going to happen, bring that shit on NOW...recover and LIVE life!
Surviving/running/racing with an ejection fraction of less than 20% for who knows how long...just imagine the energy/power I'd have with an ejection fraction of 60+ percent...I may be able to get back my KOM (Strava King of the Mountain) crown from Game Farm Road.
Look out, Jordan Roby...you and I...GFRoad...you may want to taper! :)
...quick back-story. I used to ride a lot out of Gear West in Long Lake, MN...Wednesday night group rides, 25 or 40 mile options. I would usually ride the 40 mile loop, because I could. There is a 3+ mile segment called Game Farm Road later in the ride, and a couple of years ago we got to the start of this section and Jordan, John W. and I just took off, 27+ mph for most of it, taking turns leading. Well, every time it was MY turn to pull, I couldn't...I'd sit back, working as hard as I could, just hanging on, letting Jordan and John do most (all) of the work. As we approached the finish, they were both peetering out, and I threw in a little push and crossed the line first, becoming KOM on the segment via Strava...averaging just shy of 25 mph. That KOM is long gone, BUT, maybe someday I'll be back and ready to toe that line once again...maybe next time I can take my turn pulling when it's time!
Break time...
(Wednesday morning...)
...another quick call from my nurse...more meds, this time to help with the quick weight gain, 8.6 pounds in 2 days? 2 words for you, CHU BBY.
I can tell I am becoming numb to all the procedures, as 2 months ago when I was scheduled for my first Right Heart Catheter test, it was a big deal...now, it's just another procedure, another surgery...again, bring that shit on...I'm Derek Lindstrom, and I can do anything!
Thoughts and prayers, please, as I begin this 'new' chapter, LVAD and transplant discussions...ugh.
