Musings - a year after diagnosis

[Halya]

Sorry if this is too sappy and sentimental for some tastes. It's just been one of those times

Last year on this day, I found myself at the internist's office at a follow-up for gastro-intestinal issues. Out of the blue, I heard the words open heart surgery, aortic stenosis, bicuspid aortic valve. Things went a bit strange for a while. Incessant researching, tests stretching over another 3 months, and much internal questioning about what this meant. Finally I was told that, yes, OHS is a certainty for you, but it's still about a decade away, stay active, no restrictions, and come back in two years.

Well, I took that "no restriction" part (eventually confirmed by about 6 different doctors) seriously. Essentially, I was given a best before date and I was determined to make the best of every moment. Not just of the before but also of the after. My mantra has been "if I'm going to be a heart patient for life, I'm going to be the healthiest d**n heart patient my doctors are going to see!". In this health and outdoor-lifestyle obsessed town, I see this as a significant challenge that should hold long term motivation .

So, I've done many things that I once thought of as hard, improbable, or even impossible. Spelunking, run-walking 16 km with no training, hiking 25 km solo, 1700 vertical metres in a day, running in the dark, racing in a couple of 10km events, covering 200 km in a one week hiking trip, ... All things I thought other people did, athletic people, but certainly not me. Along the way I lost 40 kg, changed my diet, and have an abundance of energy that hasn't been there for a decade. Now I'm signed up to run 25 km in May and a mountain marathon in July.

While the diagnosis of BAV/aortic stenosis hasn't been the only impetus to these changes, it is always there in the background. Not as something scary or something to feel sorry for oneself about, but rather something that gives a deep feeling of gratitude. For the doctors that followed up on hearing the murmur, for a health system that is there when you really need it, for the scientists who developed the replacement valves, and just for living in a time where such miracles are possible and commonplace. Finally for this forum that helped normalize the situation and made it obvious that no one has to go this alone.

The point of saying all this? Well, thank you for all of you on this forum for being here and for the warm welcome. And, if it means something to someone newly diagnosed, so much the better. I'll be hanging out in the virtual waiting room if anyone needs me...

It's been a great year!

Halya

 

[pellicle]

Not soppy or overly sentimental at all, in fact an excellent post with a great message!

Happy to read it. , especially this bit

Well, I took that "no restriction" part (eventually confirmed by about 6 different doctors) seriously. Essentially, I was given a best before date and I was determined to make the best of every moment. Not just of the before but also of the after. My mantra has been "if I'm going to be a heart patient for life, I'm going to be the healthiest d**n heart patient my doctors are going to see!". In this health and outdoor-lifestyle obsessed town, I see this as a significant challenge that should hold long term motivation

 

[epstns]

Hi, Halya!

Long time, no "see!" I remember when you were first diagnosed, and how difficult it was for you to come to grips with your situation. I think I even remember telling you to "just live your life." Well, it sure seems that you took that advice to the limits and beyond. I am so happy to hear of your life make-over, and I can tell it has had a major positive impact on you. I applaud your effort and your numerous successes, and please do come around more often to help others realize that even a diagnosis of something like aortic stenosis does not mean that we have to live in a bubble until surgery. Some of us are lucky enough to get plenty of warning, and to be able to really live our lives until it is time for surgery.

I can also tell you that once surgery is behind you, you have every chance at just getting your life back on track and continuing to live to the limits. Life is good.

 

[camgough]

You have a great attitude and are taking advantage of your diagnosis. It's scary stuff to think about, but exercising is a great medicine!

 

[cldlhd]

Congrats on all you've achieved over this year. Coincidentally I was also diagnosed with BAV and ascending aneurysm this time last year,I believe it was on March 10th. I was in pretty good shape but it's funny how it motivates you. Obviously weight lifting was out with the aneurysm but I started a lot if hiking and brisk walking-about 5 miles a day- and dropped 20 lbs in 5 months. I just had my surgery a month ago and hopefully I'll be restriction free before I know it.
Keep up the good work and no it wasn't too sappy.

 

[Halya]

Hi Steve,

Yes, I remember you were one of the folks who helped "peel me off the wall" back in the day . There are no words to say how much that helped and how much I appreciated your wisdom! My normal coping skills were already exhausted from dealing with too many major life events in close sequence. Hearing sane words of advice here made it possible to move on a bit quicker.

I still feel unqualified to comment on many of the experiences that are posted here, but I will chime in where I might have something of value to add. Thanks to all of you for setting the example.

 

[Halya]

Thanks, camgough. Yes, I think I have developed an addiction to exercise. I'm okay with that. Makes one appreciate just what an amazing machine the human body is.

 

[Halya]

Hi cldlhd,

Congratulations on your ongoing recovery! Strange how different the paths can be even when the diagnosis comes on the same day.

I had already started on a committed exercise program when the diagnosis came, but it kind of put into overdrive! Hiking first, then when that wasn't enough to raise a good sweat, added running to the level bits, then the downhill bits, and finally some of the uphills. Then I discovered there was a whole sport called trail running.

My reasoning was: They run far in interesting places. They are just people. I am a people, too. Therefore I can also run far in interesting places. Just a bit slower . Simplistic logic, but it's working for now.

See you on the trails soon!

 

[Halya]

Thanks, Pellicle. Your stories of cross-country skiing in Finland were inspirational. I took up that sport this winter when there was too much snow for running. Took me back to the holidays I spent in Scandinavia as a child.

 

[epstns]

My reasoning was: They run far in interesting places. They are just people. I am a people, too. Therefore I can also run far in interesting places. Just a bit slower . Simplistic logic, but it's working for now.

See you on the trails soon!

I love your logic, and your attitude. If my knees would cooperate, I'd want to be out there with you. As it is, I have to settle for a stationary bike and "power-walking" on an inclined treadmill to minimize impact on my knees. At least when the weather is better, I go out and walk quite a bit. That is what I miss over the long Chicago winters.