After several concerned emails I wanted to write and say that yes, I am ok and thank you for all the love!
I have taken a brief hiatus because every so often I need a break from talking about things like heart failure, mitral valve prolapse, autoimmune disease, pacemakers, defibrillators, doctors, hospitals, scleroderma and medical problems on the daily.
Sometimes I convince myself that if I don’t talk about it then the problem simply doesn’t exist anymore! Wishful thinking, I guess. And it isn’t just the writing I’ve been avoiding lately… I have yet to follow up with any of the docs who are currently reviewing DVDs of my most recent heart tests. I’m not saying I want to live in what therapists would most likely call denial, but a short trip there every once in a while isn’t so bad for the psyche. Every so often I have to remind myself that I am not in medical school and I can read things that do not include “heal yourself” books and heart research in the New England Journal of Medicine.
Today I could talk about how I have been retaining more fluid than usual (since my heart does not pump strong enough I am on a quest to find a delicate balance of sodium in my life). I could talk about how I wake up choking in the middle of the night if I do not lie on two pillows because of the fluid traffic jam, or the pills that I have to take to flush the fluid out of my body… how they drain me and keep me running to pee every five minutes. I could also spend an entire post on how nervous it makes me to wonder why I’m retaining fluid and the bigger badder question: is my heart getting “worse”?
But, I’d much rather focus on the good things happening. I am feeling generally great and I can walk all over the city from appointment to appointment which is what I did yesterday. I’m taking the subway regularly for the first time in three years!
Major progress and much more fun to write about…
Feeling awful awful terrible today. First time in weeks and weeks that I’ve felt so achy and sore. Bone crushing pain and extreme fatigue. I wonder why this didn’t happen while I was away from home for a while? What about it here triggers these flare ups?
I’ll never understand this. In bed all day long.
an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause.
such an effect or event manifesting or considered as a work of God.
a wonderful or surpassing example of some quality: a miracle of modern acoustics.
If you can detach this idea from organized religion in your mind for a moment, a miracle is actually a shift in forces of energy.
I believe they do not happen overnight, rather it’s something that is built up, constantly worked at. I am working toward a miracle for my heart. Working really hard. Reading, learning, meditating, changing my body through energy work, help from healers. Eventually I know I will reach total recovery.
I have a renewed faith in my body to take care of my heart, to create a miracle.
I’ve been avoiding writing about this because that means I have to think about it.
Last information I shared about my heart was the results of my TEE, the test the docs gave me to see if I would be eligible for a trial where they fix your leaky valve with a clip. Well, I wasn’t eligible which left me in the same place as before we started the trial testing: leaky valve, “moderate to severe” mitral valve prolapse, and an enlarged left ventricle (the reports say “severely enlarged” but I don’t like that), and worst of all, no plan.
Since most of my doctors seem indifferent at this point (they aren’t telling me to go and get surgery NOW but they say I will have to eventually but I risk waiting too long), I decided to take matters into my own hands. I called a dear friend, Dr. A, a cardiologist upstate who helped me through my original turmoil and sent me off to caring hands at the Cleveland Clinic. This particular doctor is old school, excellent at what he does, I trust what he says, he doesn’t sugar coat things, and I love that. I got copies of my tests and sent them off to Dr. A. He is going to review my tests. He also asked me to send copies of my test. He is going to send a copy to a doc at Cleveland Clinic as well as seek out a doc in Toronto who is supposedly the best in the game when it comes to valve repairs these days. I like this plan that he came up with so I am excited to see what everyone has to say after they look at my tests.
The hardest part is waiting.
Finally! I was able to gain some weight over the last few weeks. I love when I gain weight because it means that my body is healthy. I also feel more like myself when I have a few pounds on — I don’t really dig the “sick” look when I’m lingering around 100-105 lbs.
The only issue with this is my kicker (pacemaker defibrillator). Since there are three wires hooked up to my heart, they run throughout the left side of my body. The “third lead” is a wire that goes into the back of my heart by way of my lower ribs/ left abdomen. Since this wire is sending electric impulses with every beat of my heart the wire sometimes hits a nerve in my diaphragm causing my stomach to “hiccup” uncontrollably. Usually this happens when I lie on my left side, or if I lie on my back a certain way. Now that I’ve gained some weight however, it’s happening almost all of the time! My body expanded so the wire is hitting the nerves in my diaphragm quite frequently. My stomach is jumping all of the time now! It is super annoying. It takes my breath away every time it happens.
I like my weight and even plan to gain some more so we have to figure a way around this one…