NM's Journal

Sometimes your path in life veers off into unexpected territory. After a year of tests and consultations, I've been told that neither open heart surgery nor a TAVI are recommended due to my weight. The risk is too great. Fortunately my aortic stenosis, although severe, is still at a stage where my only symptom is getting short of breath. So I will live the rest of what life I have enjoying my family and doing whatever I please. To be blunt, watching my family go through Alzheimer's and cancer, I'd just as soon go down this road. Every day is a gift. Enjoy!

Last January when I talked to the cardiologist, I pressed to have a TAVI rather than open heart surgery (see my journal). He said that he'd bring it up with the cardiac round table in a few weeks. Then there were months of tests, cardiologist visits, appointments with two different surgeons, and messages left at the cardiologist's office asking what the blazes was going on, I finally got a call a couple of days ago - they would bring my case to the cardiac round table in a few weeks!! They were supposed to have done that 8 months ago!! Arrrggghhh...

I have aortic stenosis and the surgeon recommended TAVR while the cardiologist is pushing for a mechanical valve and open heart surgery. It was explained to me by the TAVR coordinator that the TAVR was considered a "procedure" along the lines of, but not nearly as simple as, an angiogram and that I'd even be awake during it. Probably going home the next day. If this is so, then why aren't most people getting it? What's the downside/risk that I'm not understanding? Is it just a matter of mechanical lasting longer than tissue?

I absolutely love this cartoonist and have ordered several "heart" items to cheer me up and encourage me while I'm waiting for surgery and to help with my recovery. I hope this is okay that I share it, and all the heart-themed things are on sale this weekend. The Awkward Yeti - https://theawkwardstore.com/

Recap: have had echo, angiogram, x-ray, cardiologist visit, dental work, met with surgeon #1. Surgeon #1 gave me the run down then announced he was retiring in 2 weeks (!?!?) but he'd be prepared to operate the morning of his last day at work. I was a bit panicked that it was so soon, but figured he wouldn't want to mess up on his last work day. That didn't happen. So back to the cardiologist whom I asked about a TAVR but he dismissed the idea. Surgeon #2 then told me that because of my size, open heart wouldn't be a good option. In fact, of the 3 surgeons he worked with, neither of the other 2 would consider it. He didn't say one way or another if he'd do it. So now I'm going to be referred to the TAVR team - which is what I wanted in the first place. Now I'm waiting for a CT scan to see if my plumbing is okay for it. I sure hope so. All along I've been asking how they approach surgery and recovery with a person who is morbidly obese, but have been dismissed. I'm wondering if they've ever actually done it. At least Surgeon #2 was straightforward with me. I also did all my paperwork (will, etc) so another thing crossed off my list. I'm still enjoying life with my daughter and granddaughter, she's now 8 1/2 months old and has just cut her first 2 bottom teeth.

There have been some posts about what to take to the hospital and what you should have when you return home. I'd appreciate it if someone could point me to where I can find this helpful info. Tks

Got my appointment with the surgeon scheduled for Feb. 14/18 - Happy Valentine's Day. I expect him to outline my options for the aortic valve replacement. Have been told by several people to get my dental work done before hand. At the moment I'm more frightened by the dentist than the doctor, since I haven't gone in many years. I guess this is necessary?

I guess I got my wish. Got a call to have the angiogram tomorrow (Thurs.) morning at 8 am. I'm going to pretend it's so soon (3 days after cardiologist visit) because someone cancelled and not because I'm going to drop at any minute. So now I only have tonight to stew about it and find my peace. Reminding myself that everyone is very skilled, know their job and have done it many times before - it's just me that's the newbie. :)

The cardiologist is arranging for an angiogram soon and then a consult with a surgeon. Sometimes the waiting is stressful, on the other hand the procedures are scary to think about. So I'll just enjoy my day-to-day with my daughter and granddaughter.

The office phoned this morning and gave me an appointment for Jan. 8/18 - 1 month since the echo. That's pretty quick in these parts which is a bit scary. I'll have to get reading Adam's book to know what questions to ask. Advice would be appreciated.

I recently got my echocardiogram and 2 days later the nurse practitioner told me the results. I should have recorded the conversation because I only really heard a small portion of it. My left ventricle is not too enlarged and the walls are in good shape. The aortic valve calcification is now at the severe stage. So the next step is seeing the cardiologist. I'll take it as a sign of how bad it is by how far in the future my appointment is.

I'm grateful that people like John have reiterated that having these kinds of heart problems have nothing to do with healthy or unhealthy lifestyles. When you're severely overweight like I am, it's just assumed by many people, including those in the medical profession, that every single medical problem I have is because of my size. It doesn't seem to occur to them that slender people also have these exact same medical problems. (end rant)

That's what it felt like when I was told that my heart valve was severely calcified and I probably had less than a year to live. Excuse me? Where did you learn your bedside manner - Tactless University? I already knew that I had a heart murmur but last I heard it was just something to keep an eye (ear?) on. Now it seemed to be a big deal. I spent the next 24 hours in a state of stunned-ness. Then I told my 9-months-pregnant only daughter. Lots of tears from both of us ensued. I started madly researching on the interwebz, including hospices, end-of-life preparedness, funeral preplanning, even cremation urns and keepsake jewelry for ashes. Fun times. Thankfully I also found this site. I phoned my only sister and cousin and more tears. The next day I got the results from the blood tests and EKG - wait a sec it's not quite that bad, maybe you do have some more life to live. So now I'm waiting to get an echocardiogram to see exactly where I'm at. There's more verbiage under "My Story" if you're curious.