Let me preface this blog entry by saying every patient is different. So what I'm typing here is just my side of it. I'm in no way a nurse or doctor so what you're reading is purely from my experience or what I've been taught from our medication management training, dietitian, and VAD team. Again, every patient is different.
INR is kind of a big deal if you're living with an LVAD. I'm sure my LVAD friends know what I'm talking about here. Let me try and explain this so that our family & friends understand. And the nurses in my family will probably be proud of my INR knowledge. That's right...I'm talking to you Rete, Marie, Tina, Sharon, Cassie, and last but not least Golden Boy.
INR (International Normalized Ratio) - this is a lab test which measures the time it takes for blood to clot and compares it to an average. A patient's INR level is an important step in managing their health, especially if you're taking medicines such as coumadin. The higher the INR, the longer it takes for the blood to clot (risking uncontrolled bleeding). The lower the INR, well then the patient in most cases doesn't have adequate protection from clotting.
For us, Kevin's doctors prefer that his INR level is between 2.5 - 3.0.
INR can sometimes be the one thing that holds an LVAD patient from being discharged. I know a certain LVAD'er and his caregiver who are presently waiting to be discharged...INR is the last thing they're waiting on to be discharged. To say they've been through a lot is an understatement.. so maybe if you're reading this, you can send them some positive vibes. From my own personal experience with waiting to be discharged... the god damn INR results have haunted both Kevin & I. Waiting for that magic number to be where the doctors want it...playing with the coumadin dosage...5mg one day...6mg the next.... well, you can really pull your freaking hair out waiting. And this also pertains to being home and you get a result that's too high or too low...automatically the questions begin "what's he been eating? what are his readings?" Too low for the VAD team's liking and they just might admit you. None of us want that.
I remember when Kevin first got discharged we had to go to the lab twice a week (sometimes three times) just to have his INR checked. Once he was therapeutic, where they wanted his INR... it was once a week, then once every two weeks.... after the LVAD explant didn't happen, we had to get his INR checked once a week and it's been that way ever since February. Do the doctors still play with his coumadin dosage? Over the past month...not really... just minor changes here & there.
So if you're taking coumadin I'm sure you were told by your doctors about "vitamin K?" About how it's a natural blood clotting factor that can alter your INR. I had issues with this because we're a green eating kind of family. Kevin & I have always eaten very good because heart disease runs on both sides of our families. How ironic that he of all people has heart failure, huh? Not from a blockage.... from a virus..but I'd rather not talk about that now. Back to Vitamin K... what we were told is that if you eat a consistent amount each week of greens, then to keep on doing it. They (doctors) apparently work around what you consistently eat to prescribe the right dosage of coumadin. So even though we have this knowledge...LOL...listen to this one: The night before our last clinic visit I made fried tofu with brussel sprouts, onions & mushrooms over a bed of brown rice. We hadn't had this particular dish in ages. We eat the entire thing...two helpings each. We go to clinic, the guy comes in, sticks Kevin's finger to check his INR... it was 1.8... the brussel sprouts clearly made his INR drop. "Whoops" is what we replied with... sure, it's funny now... but not really when living with an LVAD(don't want any blood clots causing the LVAD not to work properly). His INR went back up to where the doctors wanted it but I'm clearly not making any "green" dish we haven't had in a long time until after transplant.
My guess is there is a learning curve with being discharged home with an LVAD. Also the same for the caregiver... most times if a number is off or something has gone wrong...or if I forgot to do the daily test on the PBU.....or if it's 11pm & I still have to do his sterile dressing change on his drive-line....being Kevin's caregiver...well, I take it personally. Like it's my fault. Tail between my legs. I probably shouldn't because we are a team. But I do. With every clinic visit I feel as if I'm being tested. Sort of like the same feeling when our boys were infants and we had monthly pediatrician appts...you know different shots every month...I felt as if I was being tested as a mother. Like if my littler one of the twinset didn't gain enough weight....well then I'd feel responsible because I wasn't producing enough milk for him. I was obviously wrong - I was a homerun hitter in that department, he's healthy, just on the smaller side. Maybe that's a mother thing?
I guess what I'm saying is that even though I don't have the actual LVAD implanted... I feel as if I do because I take every step with him. Then there are times when I look at him and think "holy crap. how is he doing this? how is he carrying around all the extra weight? how does he push every day to get through it?" And then I remember back to those two weeks in October...he's a fighter, he pulled through, and he defeated all odds. And then I look at our boys.... it's really quite simple. Three answers every time for all of my questions. Coincidentally they're the same three answers that get me through the every day.
Do me a favor if you're reading this...... give life everything you've got. You only get one chance at it. And if you're lucky......well, then the best doctors in the world give you a second chance. From the bottom of my beating heart, thank you to those doctors at Cedars Sinai that gave Kevin a second chance.