Tuesday, September 18, 2012

A Little Touch of Heart

As many of my friends know, I have had severe breathing problems for several years. I could not walk far or fast, could not climb stairs, and was often huffing and puffing after the mildest exertion. This began, in earnest when I was working at Adobe systems in the 2004-2005 timeframe, even as I was walking 3 miles a day to work and back in downtown San Jose. After a bout of pneumonia in 2006, I was severely restricted as my colleagues at DERI in Ireland may recall.

I want to thank all the friends and colleagues who tolerated my disability and my slowness. I also want to let everyone know that those days are behind me now.

No, it was not my lifestyle or my weight..I am the same 280 lb or 129 kg now that I have been for a dozen years. No it was not my Myeloma which I am still living with and undergoing treatment for.

No, I had a hole in my heart. A little hole which I have had since birth. A minor congenital birth defect. And I have had it repaired. As I say, I have been darned like an old sock!

A Patent Foramen Ovale or Atrial Septal Defect is a remnant from the womb. Everyone has this little hole while gestating. But it is supposed to close up upon your first breath, when your lungs take over the job of supplying oxygen to the blood.

In 25%-30% of people it does not close. un-oxygenated blood from the venous side of the cardiovascular system is forced under pressure into the oxygenated arterial side, thus lowering the percentage of oxygenated arterial blood flowing to muscles and organs.

For most, the hole is so small, the effect so benign that it causes no impact. This is the current medical line. However, as we age and our heart's stiffen, it can become a possible site for clots and can lead to stroke. Protocol at many hospitals now is that once you have a stroke, a special type of sonogram is performed to see if a PFO or ASD is present.

In May I had two strokes while on Myeloma meds which increased the thrombophilic properties of my blood. Fortunately, they were minor, left no impairment, and pushed me into this protocol.

The 'bubble' test, where microscopic bubbles are dissolved in your blood while a cardio echogram is performed, was very positive, showing a literal stream of bubbles flowing from my right to left ventricles in just the way that is never supposed to happen. I have it on DVD. It is the most compelling video of myself I have ever seen. The test is not dangerous or painful and took less than 15 minutes. It needs a nurse to assist (she mixes the air with the sterile saline and shoots it into a vein through an IV). microscopic bubbles pose no threat and dissolve rapidly into the blood.

There is also a TTE test which I had that is a bit more involved (tube down the throat so the sonogram transducer is in the esophagus. Also safe, non-painful, but requires a bit of sedation for 15 minutes or so. http://en.wikipedia.org/wiki/Transthoracic_echocardiogram 

On Monday, July 23, I went in for robotic open heart surgery for an ASD repair at the Baylor Heart Hospital in Plano, Tx. On Wednesday I went home feeling ten years younger.


The robot is used to penetrate from the right side in four or five small incisions where catheters, cameras, drains, and any other tools can be inserted. The chest is NOT cracked as in the old days and there is no long scar.

I do look as if I battled a samurai and the camera went in through a slit at the base of my right nipple...that was a bit of an ouch for a few days. But only thin scars remain and they will fade in a year or so. Even the neck and groin incisions where the bypass catheters went in (had to stop the heart, so a little pumping help was needed) are soft, thin, and fading already. It has not been 2 full months yet.

The pain was virtually nil. I was standing Monday afternoon, walking Tuesday and Wednesday I went home. The folks (Nurses, PTs, OTs, Admins, Doctors, Dietitians, etc) at the hospital are a) wonderful, b) impressed, c) amazingly well trained and helpful, and d) did I mention wonderful.

My surgeon was friendly, conversant, articulate, and wonderfully competent. Among the best in the world as the Plano Heart Hospital has just been recognized. Thank you, Robert Smith!

My cardiologist is also friendly, articulate, competent, and very, very impressed that this returned me to such energy and stamina as I have not had in years. thank you Kevin Theleman!

But I have to thank my oncologist/hematologist for sticking with me and being smart enough to NOT make it all about the Myeloma. When we met I told him better breathing was a goal and we had to find out what was wrong there. He never wavered from thinking about that and helping me even as he also fought the Myeloma aggressively as he had to do. He has moved his offices somewhat further away now, but is worth the drive (and possibly a new car with better mileage) to stick with his treatment and his wisdom. Thank you Lee Drinkard!

I spent a couple of days and nights on the living room couch, then climbed to my bedroom with virtually no effort by the end of the first week. Today I carried a 100 pound piece of granite chess set down the stairs. I was huffing a bit, but my O2 saturation never fell below 96%...before, a 30 foot walk would drop me into 70% "go to ER immediately range".

Now, walks, stairs, lawn work, swimming, even scuba are once again no-fear activities. I literally feel like I am back in my mid forties. Doctors all agree; no cardiac restrictions, and I can resume my normal activities as I wish.

Which, of course, now includes Myeloma treatments. I was off all treatment for 4 months to get the heart and breathing thing fixed. That did give the Myeloma time to regroup and to start coming back...but now I am MUCH, MUCH more capable of tolerating the treatment and seem to be doing so quite well.

Six years! Six years of heavy breathing, tiredness, avoiding stairs, not going to conferences, and many other restrictions I put on my life. Six years of asking doctors why I did not have enough breath for normal activities. Six years of looking at my lungs and my blood, but never seriously at my heart. I had an Echo done in Ireland and was told my heart would last 100 years. And well it might...but THAT Echo was not the bubble test Echo and so did not reveal my little birth defect.

Fifty-seven years to find and repair a congenital heart defect. Fifty-seven years. Is this why I never could excel at sports? I tired very easily even at my peak in high school...running laps and bleachers was the world's worst for me.  I could hit softball homers repeatedly, but could not rapidly run the bases. Who knows?

But that is all over. I feel fantastic and, as I said, the normal activities of a middle aged man no longer hold fear and trepidation for me. I don't carefully plan my walks to the curb or my trots up and down stairs in our house. I know longer worry if I need to walk up a flight of stairs at a client site.

Twenty-five to thirty percent of you have this defect, too. You may never notice it. But if n ot found and treated, it can lead to strokes. Unfortunately, it is not typically tested for until AFTER the first stroke. But you CAN talk to your cardiologist about it and ask for it.

So life continues, work continues, and I continue. Looking forward to a vacation next year where I can get some downtime in a pretty lagoon or on a nice drift dive. It is GOOD to be back!

1 comment:

Keith Brown said...

What an amazing story Bill, and one that I think many people can relate to. Maybe they don't have the same issue, but we all face things that we are born with beyond our control. I hope things continue to get better for you, and thanks for being so open and transparent with your life.