There is the tendency to spend too much time looking up medical terms, watching medical videos, etc. When I was in the hospital I watched videos of each procedure I was to have prior to getting it. My husband Dan thought I was crazy and that I was making myself into a basket case. But I feel that it helps to be in the know. For example, I think it helped me to warn physicians that I would have a problem tolerating a closed MRI and that my swallowing difficulty meant that I would likewise have problems with the TEE. Bottom line is that they knocked me out for both and I did fine. OTOH, watching a video of the new through-the-wrist cath technique lessened my apprehension about that procedure as soon as I found out that they would do it that way for me.
I don't spend all of my time doing research. I am back to taking my two one-hour walks each day, and I spend time with my trains and doing holiday things too. But I also have to be an informed patient and come prepared when I meet with my surgeon candidates. Therefore I do some amount of research every day. The other day I watched a video of what I believe will be very similar to my surgery: minimally invasive isolated aortic valve replacement. Here is the link to page with the video:
http://my.clevelandclinic.org/services/heart/patient-education/videos/valve-surgery-faq-videos
Now, a lot of things have to fall into place in order for me to get this minimally-invasive AVR option, but it's what I am hoping for. This is because minimally invasive surgery is less stressful and recovery times are shorter. On Tuesday I get a CT chest scan to assess the size of my ascending aorta. If the aneurysm is too large and needs surgical attention, then I suspect that a minimally invasive approach will be ruled out for me. However, last time it was measured it was dilated but stable. 4.5 cm is the cutoff...mine was at 4.2 cm. So we'll have to see.
The other issue is the surgeon...does he do mini-sternotomies....if so has he done a lot of them? This brings me to the whole issue of preferred surgeon and hospital. If I had my wish I would have my procedure at the Cleveland Clinic. That is the platinum standard in the US for heart surgery. Sure, I will probably get excellent care and an excellent outcome in Philadelphia, but Cleveland sets the standard for the nation. It is their website that I go to for information, videos and explanations. I have been following their renowned surgeons for years. I even have a favorite surgeon there. Dr. Roselli. I would go with him in a heartbeat (mine! :) But I live in Philadelphia so I'll try to be satisfied with someone here. Hopefully I'll find someone...either the surgeon my cardiologist recommended, or someone else. Luckily, I have time, although the clock is ticking and I definitely don't want another heart attack or stroke.
I just spent a week in the hospital. The curious thing is that nothing was done to correct my problems. Just a lot of testing but at the end of it all, I was discharged with no therapy having been done. They figured I had coronary artery blockages. I was pretty sure I didn't. I was right. You could almost feel the disappointment of the lead doctor responsible for my care when he told me I was being discharged. There was nothing he could do for me. I needed AVR, not CABG or a stent. So that's where we are!
I am really enjoying being home and playing with my "son" Loki. As a dog person, I never thought I would be so close to a cat. He's on my desk all day, we take naps together, we sleep together...we're hardly ever separated when I'm in the house. Dan has been just wonderful and our friends have been very supportive. Life is good. We'll make it all happen.
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