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All I Want for Christmas is a New Pulmonary Valve

Dec 24

Posted by: ACHA
12/24/2013 8:32 AM  RssIcon

By Ken Woodhouse

... and that's just what I will be getting early in the New Year!

About a month ago (shortly after my latest round of regular heart tests), I got a phone call from my cardiologist. The gist of his call was to let me know that, based on the results of these tests, it's now time to think about (and start planning for) having my pulmonary valve replaced. He had consulted with the rest of his team, and the collective agreement was that it's time for intervention. (It's interesting to me how "intervention" can be an attempt at subtlety when the real meaning is "surgery.")

The next step was to schedule a consultation with the surgeon. Can you say déjà vu? (However, unlike two years ago, I've decided this time to wait until I was sure about my final decision before blogging about it.)

On December 6, I went to my regular ACHD medical center for a consultation with a world-renowned heart surgeon who has performed more than 4,000 congenital heart surgeries. While his primary focus is on children with congenital heart defects, he also serves as the director of the hospital's adult congenital heart surgery program. During the meeting, he said that, based on the results of my recent heart tests, he was actually surprised at my cardiac ability, specifically my endurance for cycling and running. He feels confident that I will be even stronger and able to cycle and run farther post-surgery and recovery.

Just recently—after getting the obligatory second opinion and asking a countless number of questions along the way—it became truly official. On January 9, 2014, I will be having my second open heart surgery (OHS) to replace my pulmonary valve. (You may recall that my only other OHS was back in 1981 when I was just eight months old.)

The surgeon specializes in homograft valves, and it was confirmed at my consultation that I will be getting the one they have "in stock." My expected hospital stay is 7–10 days, and I am planning to take 6–7 weeks off work for recovery.

While I wouldn't say I'm looking forward to the surgery, I'm feeling good about it. Fortunately, I have a very supportive home and work environment (including great health insurance!). And I am looking forward to testing the surgeon's belief that I will be even stronger post-op. I recently signed up for my very first triathlon—the 2014 Chicago Triathlon (sprint distance) in August!

Looking back, I realized that 2013 was a fairly uneventful heart year for me (in a good way!). While 2014 will clearly be more eventful (and, I'm sure, more challenging), I am looking forward to my journey from the operating room to the finish line!

Ken Woodhouse was born in 1981 with tetralogy of Fallot and had his first (and, so far, only) open heart surgery at the age of eight months. He is an avid cyclist and aspiring runner, having completed both century and multi-day bike rides across the country, as well as his first half marathon in September 2012. Ken writes his own blog about living a healthy and active life with CHD.

Copyright ©2013 ACHA

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7 comment(s) so far...


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Re: All I Want for Christmas is a New Pulmonary Valve

You will do well, Ken! My thoughts and prayers are with you.

By Gina M on   12/30/2013 9:08 AM
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Re: All I Want for Christmas is a New Pulmonary Valve

I'm a TOFer and had my PVR exactly 3 months tomorrow. My last when I was 3 years old. You will be surprised at how your endurance changes and improves. I was also surprised how fast the recovery was. Good luck! I'm sure you'll do great!
I'm starting my training for a 10k and running in March.

By Rebecca on   12/30/2013 9:08 AM
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Re: All I Want for Christmas is a New Pulmonary Valve

Ken-
First off, happy holidays! Reading your blog sure hits home. As a fellow ACHder (single ventricle) I was in a very similar position about 14 months earlier. Sounds like you have done your homework and feel confident about your decision.

I love the goals you have set, again very similar to mine. My first OHS was in 1979 and my second OHS was in November 2012 (fontan revision including arrhythmia correction and pacemaker placement). My surgeons told me to expect about 10 days recovery in the hospital. Not being satisfied with that I busted a** and was released after 8 days and more importantly on Thanksgiving day 2012.

Fast forward a few months and I am finishing cardiac rehab. I am also an avid cyclist so I decide to ride my bike to the last day of rehab. While not a long ride it was the first week of April in Chicago and still pretty chilly. I didn't care and I couldn't wipe the grin off my face the entire ride.

The beginning of June saw a metric century for me and summer 2013 found me training for my first triathlon (also sprint distance). Swimming and biking is not a problem but I absolutely despise running. In September I completed the Lake Geneva Trirock sprint triathlon. And surprisingly I started to like running. What a great feeling crossing that finish line knowing that just 10 months earlier I could barely walk the 50 yards down the hospital hallway.

While I like tooting my own horn on these accomplishments I describe my recovery to you as a realization that others in your position can end up back on track and even better off.

I wish you the best of luck in your surgery and recovery.

Sincerely,
K Fletch

By K Fletch on   12/30/2013 9:08 AM
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Re: All I Want for Christmas is a New Pulmonary Valve

Hi Ken,

Your story is very touching and very relatable. I myself, have tetralogy of fallot and received OHS at 6 months old in 1992. I was in your position a few months ago because, my latest tests implied severe pulmonary reguration and a severe enlarged right heart. When my cardiologist was debating the perfect timing of surgery,I kept telling myself positive things. Just remember you are in the best of hands, you go to a specialized center, and we've been through OHS when we were infants and we were alot sicker than. Now we are young adults who are healthy! Best of luck with everything!

By Stephanie on   12/30/2013 9:08 AM
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Re: All I Want for Christmas is a New Pulmonary Valve

I had a homograft placed several years ago, and I did well through the surgery and afterward. They "kicked me out" of the hospital 5 days later.
Recovery took about 5 weeks, and I started walking short distances, and increased them each day until I was able to go the whole way around the block.
I had no difficulties whatsoever, and I think/hope that you will do as well with a homograft.
Health to you!
Connie

By Connie on   12/30/2013 9:09 AM
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Re: All I Want for Christmas is a New Pulmonary Valve

I was born with Tetralogy of fallot with pulmonary atresia. I had My surgery in 1977 at 11yrs. old. I'm really interested on your upcoming surgery.

By Mary Bradley on   12/30/2013 9:09 AM
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Re: All I Want for Christmas is a New Pulmonary Valve

Good Luck with your upcoming valve replacement surgery. Let us know how it goes....


Danielle

By Danielle Sikorski on   12/30/2013 9:09 AM

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