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.

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.