Sitting in limbo

Hi all, as usual, it's been a while since my last post.  I know I say that every time, for some reason I have been lax about updating the blog.  Maybe because we are now in the hot, muggy days of summer and it's hard to get motivated? Or maybe I'm just lazy.  Or too stressed.  Or all of the above.

I named this post after one of my favorite Jimmy Cliff songs, and it captures exactly how I feel at this moment.  I am waiting for some major stuff to happen, and it all has to take its own sweet time. There is nothing I can do to move things along any faster.

At the top of the list, of course, is my heart valve operation.  Since I last wrote an update, I met with Jennifer Lutes, the nurse practitioner for Dr. Stinis, the cardiologist who will perform my TAVR procedure.  She said my procedure had been approved by the medical committee, and is scheduled for Tuesday, Aug. 8.

That was welcome news, and  I would have been totally elated, except for the little tagline at the end. "When we did the CT scan of your body, there was an incidental finding, some enlarged lymph nodes.  It's probably nothing, or related to your history of Hodgkin's disease and radiation..."

That felt like a gut punch just when I was ready to hear some good news about the TAVR procedure, setting a date and talking about my recovery.

I know I am kind of a glass-half-empty kind of guy, but that information cast a shadow over things, and I found it hard to focus on the excitement of finally moving forward with my needed heart procedure.

My family doctor then ordered some blood work, which came back mostly normal, so that is reassuring, but she wanted me to see a cancer specialist to be sure.  So that appointment is set for next week.

In the meantime, the date for my TAVR is just over two weeks away, and I am waiting to hear from Dr. Stinis's office on my pre-op tests and other preparations.  I am both excited and nervous about that, but much less worried than if I was facing open heart surgery.

On top of all that, I am eagerly awaiting my daughter's return, in just under two weeks, from her study abroad year in Germany.  Both my wife and I can't wait for her to come home, it is so exciting to think about our daughter being here for the rest of the summer, until fall classes begin at UC Santa Barbara.

As a self-employed free-lance writer, my work is dependent on assignments from my editors and clients, and right now we are in a typical period of summer doldrums, which means I have even more time to sit and brood and imagine worst-case scenarios.

So in between sparse work assignments, I am doing little home projects, taking lots of walks, playing my guitar for the first time in a long while, watching soccer and baseball and trying not to be too impatient about the things outside of my control.

As Jimmy sings:

"Sitting here in limbo, waiting for the dice to roll,
sitting here in limbo, have some time to search my soul
well, they're putting up resistance
but I know that my faith will lead me on..."

Decision time

Well, here I am a few days after the July 4th holiday, and I am awaiting a big decision point in the treatment of my aortic stenosis.

As I have written about in previous posts, I have been pursuing the possibility of a TAVR procedure rather than open heart surgery to replace my aortic valve.  Most importantly, my history of chest radiation in the late 1980s puts me at potentially greater risk during open heart surgery, because the radiation may have caused damage that would be unknown until the operation begins.

On June 27th, I met with a surgeon, Dr. Tyner, for a second surgical opinion on whether I would be a candidate for TAVR.  His opinion was that TAVR should be my first option.

So a couple of days ago, I spent most of the day at Scripps Clinic in La Jolla, undergoing a battery of tests known as the "TAVR workup."  As I understand it, the tests are both a planning tool for the TAVR procedure, and a way of making sure there would be no impediments if I were to have the procedure.

The tests included a breathing or pulmonary test, in which I inhaled and exhaled into a mouthpiece to check my lung capacity; a "frailty" test which included a number of questions about my physical condition, a grip test and a walking test; a very extensive echocardiogram; and a CT scan of my heart.

Because the last two tests required contrast dye, I was turned into a human pincushion, getting three needle sticks for IVs.

But all of the tests went smoothly, and I was on my way home in the afternoon.

The next step is a meeting with Dr. Stinis, the interventional cardiologist, who would be the doctor performing the TAVR.  On Tuesday morning, a committee of doctors will review my case and determine if TAVR is the best course for me.  Later in the morning, I will meet with Dr. Stinis and his medical assistant, and learn which way the doctors want to go.  I am hopeful we will get the green light for the TAVR procedure, and maybe even set a date!

I have to say that I am a bit nervous right now, while trying to maintain an optimistic outlook that things will work out the way I hope and expect.

Either way, whether I end up having the TAVR or surgery, I am looking forward to having the valve replaced (and my coronary artery blockage treated) so I can feel better and return to my previous, more active, lifestyle.