So I’ve been having trouble getting my Coumadin levels straightened out. For some reason, the finger poke testing doesn’t work on me. It always makes me much higher than what I really am, so they poke my finger, then wait for the results, and then they always make me go to the lab to have a draw done. Well, I’m supposed to be between a 2-3, and last time, I tested on the finger poke at 7.2. Seven… I’d be bleeding from my ears if I was really a seven. So they sent me to the lab, which draw the PT/INR, and my results came back the next day at 4.9. Which is still WAY too high. But my bruises are finally going away, and the blood draw they did did not make a bruise, and I always bruise, even before I had Coumadin.
The only conclusion I can come to is that for some reason my blood work is not accurate. So now we’re looking for reasons why my blood work might be off, or reasons why my levels would actually go UP when we REDUCED the dosage. Doc is afraid I’m not metabolizing properly… but how do we determine that? It’s been one month now, so I know that’s not enough time to be too worried about this, but we’re pretty certain I’ve already thrown another clot. My heart will not heal from the damage done if I keep throwing clots, and each time I do throw a clot, it means I could die. Like, you know, instant, sudden, unexpected death. So if the blood work is wrong and my levels are really lower than they are showing, I’m at risk for dying from a thrown clot. If my blood work is right and it’s really that high, then I’m at risk of dying from bleeding out internally.
Isn’t life lovely for me? Yay! Dying is just so much fun! (ahem) Sorry. Better now.
COMING TO GRIPS WITH IT ALL
One of the hard things for me to do during all this time is coming to grips with the new way I must live my life. Up until this point, yes, I’ve been sick, and had symptoms, but without a diagnosis, I could convince myself that, okay, as soon as they figure out what is wrong with me, I’ll get better. But to be told that it’s likely I’m not going to get better for some time, if at all, and that even if I do improve, there will always be at least some damage and that I’ll be on certain meds for the rest of my life just to stay alive… these things are scary, and I’ve been a bit angry, then sad, then frustrated, then sad again. Acceptance hasn’t come yet. Not sure it ever will. I don’t necessarily want to accept at this point. I still want to fight this and try to get my life back.
Congestive Heart Failure… pardon me for my ignorance, but I’ve always thought that congestive heart failure was something that would happen to only older people, people who ate an unhealthy diet of fast food and never exercised, people who were morbidly obese due to their poor habits and die (not due to health conditions – there are many reasons for obesity, after all)… I’m barely 40 years old. By all rights, that’s still fairly young. I did not eat poorly, wasn’t a fast-food junkie, cooked good meals at home and at decent portion sizes. I exercised, some, and tried to stay active. I’ve always been a bit full-figured, but I was never fat. How did I end up with Congestive Heart Failure? How did that happen?
How could that happen?
But the more I read, the more I realize that many people get CHF without having had these problems too. Sure, eating a poor diet can contribute. Being overweight can too and can worsen symptoms. Being elderly makes everything more susceptible, but even newborn babies and young children who are healthy in every other way can get congestive heart failure. I don’t know why my denial didn’t know that, but I kept thinking, “I can’t possibly have this….”
PULMONARY HYPERTENSION
The one that scares me more than the CHF is what the CHF causes. The way the doctor explained it to me is this: My heart is still very strong, and he says that’s very good. But the problem is, for reasons we aren’t entirely sure of at this point, the left side of my heart is not resting between beats. So when the heart is supposed to contract and pump, it’s only really pumping, never contracting and resting, which is causing it to pump too much blood from the left side of my heart into the right side, which has increased the size of the right side of my heart and caused some dilation of the valve. Additionally, the extra pressure and the fluid around the lungs is causing ‘pressure’, or in this case, hypertension, in the lungs. That’s why the breathing is difficult. The enlargement and the pressure and fluid is pushing on the pulmonary artery, thus causing pulmonary arterial hypertension, which is what’s making it hard for me to breathe and causes me to get winded easily and why I need the oxygen when the heart rate goes up.
I’m still not 100% sure I understand all the aspects of what they are telling me, but because my heart is strong still, because we caught it so quickly, because we are treating it so early, because I am so young, blah blah blah… the doctor thinks there’s a chance to mostly reverse any damage that has been done and that if I can lose the fluid from the body (we’re working on it), prevent any further clots from being thrown through the heart valve (taking Coumadin for that), and lose some of the weight I’ve gained since I’ve been sick (did you know CHF causes weight gain? I didn’t, but I do now!), and keep my salt and blood pressure both down, while exercising to keep the heart strong, there’s a chance in about a year or so, I might be able to have a mostly normal life, with some minor modifications and medication.
I suppose if I can make it through the next year, survive it and live through it and all that jazz, there’s a good chance you guys will have to put up with me for a while longer and maybe, must maybe, read a few of my best-selling novels that I know will be coming out in my future. After all, I have already determined I can’t die in the middle of a story – and there’s another another story.
NOT AFRAID OF DYING
It’s funny though. Through all of this, coming so close to death, thinking about it… I realize I’m not afraid of dying at all. I don’t want to die. I really don’t. I have so much left I want to do here before I move on to some other plane or phase of existence… but… I’m not afraid of dying.
It’s all the stuff leading up to death that I fear. The pain it causes others. The sickness. The weakness or pain or illness or hospital stay or whatever that happens prior to death. I like what Kenny Rogers says, “The best that you can hope for is to die in your sleep…”
Well, that makes going to sleep a little less palatable, but you get the idea.
BACK TO WRITING?
So I’m trying to get back into writing again. I’ve put it off when I was feeling so bad, because it’s hard if not impossible to get into the flow and write when my mind is so full of so many things and my body is miserable. But the itch is there again. It’s niggling at the back of my brain, and I’m writing stories and articles in my head that aren’t making it on paper. It’s time to tap them out and get them out of my head. Maybe NaNoWriMo will help me get back on track again. Are any of you doing NaNoWriMo this year? If so, be sure to add me and we’ll see if we can get ‘er done together!
Love and stuff,
Michy
