FrankenSugar

I’m having a Melody Valve placed over my very leaky pulmonary valve at the University of Michigan – Mott Childrens Hospital. I have to be there by 7:00am tomorrow (August 17th, 2010) and they hope to start the procedure by 7:30am. There is risk that I will not wake up from the Anestesia because of the condition of my health. This risk is rather high, but not more than 50%.

If all goes well, they think my body will be able to pull off more water. I hope it completely resolves my edema. I know I have at least 5lbs left, if not more. It could be up to 20lbs more, but I don’t think it’s that much. This is not guarenteed to prolong my life; they say it’s only for quality of life. I’m doing this in hopes of giving my heart some time to relax, causing me to possibly die later than I would have without it. I care about quality of life in one regard though - I don’t want people to have to take care of me too much. They said it could prolong life, but since less than a thousand need the device per year, they can’t do a proper study on it and don’t have the data. It doesn’t sound incredibly dangerous – sounds pretty safe in-fact. -side note, they aren’t saying it’ll “cure” anything, just reduce symptoms.

Hopefully this procedure will be a minor operation as it’s supposed to be.

It’s been a tough few years since my Arrhythmias started, but it’s also been the most wonderful happiest time in my life. Michael and I are so well together. Everyone in my family seems to be persuing their interests well. All is good for the time being.

I’ve got to decide how far I want my doctors to go in trying to improve my quality of life, or how far in trying to save me; depending on how you look at it. There’s no certainties and one option doesn’t really seem better than another at this point. I’m praying for some clarity.

I’ve been put on a a med I was taken off of a few months ago. The new one was controlling my atrial arrhythmia well, but not the ventricular one at all. Now, I’ve got atrial flutter(on and off) but the ventricle is well-controlled. I hope we can get this figured out before we have to attempt ablaition.

Get a Paint Tool Sai trail. Pretty cool.

I haven’t gained any water-weight back. I am steady at 152-ish pounds for now.

I saw the doctor for a follow up. He wanted me to know my condition puts me at risk for sudden death at any time and that it’s a “good way to go”. I said I knew about the sudden death, and thanked him because I didn’t know if V Tach was really a horrid way to die or not. As long as I’m won’t be in a place like, the bathroom, grocery shopping, or in a car when I die, I’m content.

We’re still tweaking meds because my heart is a bit confusing right now, for the doctors and I. It beats at around 100bmp and I get premature ventricular contractions a lot.

I feel great though! I feel so much better than last month – my my, so much better. Thank God

I went to U of M. I got out last Tuesday. I went in weighing 180lbs and now I weigh 160, that’s a loss of 20lbs in 8 or 9 days; all water. I hope I can keep this water off of me. They switched me to bumex from lasix (diurtics, AKA “water pills”). I also was put on a different heart rhythm regulating drug. I’ve had a few episodes of rapid heart beat since then, but they seem to be getting milder. I have TONS more energy. They don’t know why my right leg is much more swollen than the left. They said if it was liver stress, it’d be both legs.

My stay at U of M was pleasant. Actually, I didn’t want to leave! I wouldn’t have minded staying longer until they figured it out. On the other hand, at the DMC, I was in such a rush to get out of there! With good reason too. They could have killed me there!

Boy oh boy my body is really enjoying packing on this water. My legs are worse than ever and it seems I’m still going to gain more. Going to see about going to U of M when June starts, if my new insurance is active by then.