To say the very least the last two years have been a long strange trip... injury, pain, mayhem, all inclusive to say the very least.
I went back to work in March after the operation on my shoulder and the one to slap my pacemaker in...I have a lovely new scar.
Ain't it just loverly? And every 5-7 years they open it up to change the batteries...groovy eh? It doesn't take as long to do it as the first time, supposedly. That's what I've heard anyways...
I've also convinced myself to do the valve operation that I need to do...I'm not happy about it,but it needs to be done...
I've seen the Bach Doctor a couple of times, and Sasha too. I've been emailing Dr. Sasha a few times...
Michael J. Landzberg, MD
Michael Landzberg, MD, is board certified in Internal Medicine and Adult Cardiology, and is the founder and director of the Boston Adult Congenital Heart (BACH) and Pulmonary Hypertension Service. His areas of particular clinical and research expertise include novel catheter-based diagnostic and therapeutic techniques, pulmonary hypertensive disorders, and coronary arterial issues in congenital heart disease. He’s recognized as a leader in the care of adults with congenital heart disease and sits on national and international task forces and committees.
Doctor Sasha is camera shy...silly boy.
Way back in June I had a cardiac stress test, like the past two years haven't been one? sheesh.
I guess it went okay.
In July my sister and I went to the Manning Bowl in Lynn for DCI. Drum Corps International. We had a great time. I even bought a Cavaliers t. There'll be a post on that coming up.
My thyroid's still fucked up...pfft...whatevah
Later on in July I had a cardiac echo. Yays for non invasive tests! I just hadta lay there and try not to squirm when the tech was jabbing the thingee into my rib cartilage. I felt bruised all ovah.
On that same day, I also got to go sit in a little teeny clear telephone booth...I'm claustrophobic. This wonderful test was to test my lung functions. Groovy.
In August was my pacemaker appointment. That's doing well. At least something is...
Since I've been back to work, I've been working a bajillionty hours too...when I first came back, it was all I could do to just crawl up the stairs when I got home.
On a better, sorta note, I've been actually losing weight. In February I was 201, in April 199, in August 193.6 and when I just had another test it was 192. There's something to be said for running around like Mike the Headless Chicken at work...
On August 22 I had my 7th and 8th Cardiac Catheterizations...ugh. Dr. Landzberg actually did it! Wow...I couldn't believe that. He's very pleased that I'm doing it...me, not so friggin' much. AND they only give you enough anesthetic to make you loopy, not enough to put you out...it's called "twilight sleep" and I fucking HATE it! When you're little and you wake up in the middle of an operation, you don't forget it. That is WHY I don't like "twilight sleep".
They don't sew you shut anymore, they use pressure instead. The guy who they used was very good. Unfortunately I had my period again...ugh. Must be being in the hospital. Pfft. Certainly didn't help having blood thinners injected. Oh yeah. I also had radio opague dye injected. It felt like I was swallowing the sun...very odd sensation...
The good news on THAT front was that ALL of my cardiac veins and arteries were clean and clear...unfortunately, my pulmonary artery is a fucking mess. It has stenosis (a sorta traffic jam) and a bend and one of my arm vein shunts has little feeders which are gonna make the heart valve replacement shit even more of a goat fuck cuz they're gonna hafta tie em all off.
You see the pulmonary valve...that's the one that needs to be replaced. It only has 2 flaps instead of 3. The Ventricular defect was fixed with a patch twice. My right ventricle is hypertrophic...sorta like this poor guy.
Sorta overgrows itself because it has to work twice as hard.
The aorta had to be fixed with an arm vein...I'm still wondering how the Hell they were able to just snag one...still haven't figured it out.
Ooops got off on a tangent there...so sorry.
I got to have another test WooHoo! NOT!!!
This one was a VQ Scan. This was to see how the blood flow to the lungs were. It turned out NOT good. The right one is at 3/4ths and the left one is a 23% so between the two I have 100% blood flow...That was what Sasha wrote me about. Now they need to find if the surgeon wants to do ANOTHER cath to put a stent in the Pulmonary Valve BEFORE the replacement or just do it during.
I got the directions for the VQ Scan but I didn't think about WHERE it actually was. I did okay until I saw Avenue Louis Pasteur. Shit shit shit! I felt fear all the way into my genetic material. All I had to do was see the sign and the building across the street and I wanted to run for the fucking hills. We parked and did all that. Went to information and got the way we were sposta go...unfortunately it was in the building that I remembered being in, the Fagen. Now, it's been 40 fucking YEARS since I've been there and I know it's changed some, but there's no way in HELL that you can tell a grown up that had shit done to them when they were young that they still don't feel that fear that most closely resembles the primeval fear of the dark and things that go bump in the night. It's the bowel loosening, involuntary peeing oneself type of fear. We, of course, were way too early. I just broke down...I was shaking and crying...
PTSD was raising it's ugly head. Dammit!
At least the surgeon that Sasha said is going to do my surgery knows his stuff.
Sitaram Emani
He's even done a heart transplant on a young girl. And other surgeries on little itty bitty babies.
I will get to meet him on the 18th of October when I go in for the pre-op tests...On the 19th I have the surgery. I get to spend 5-7 days in the hospital...I'm gonna miss my house.
That's the news so far...pfft.
