Happy Sunday!

One of the greatest parts about running this website is hearing from the caregivers of heart valve surgery patients. Recently, I met Denise Hill via email. Denise’s story about her son John was so touching that I asked her if I could post it here in my blog. She was warm to the idea and provided me with a picture of her son, John Hill and his fiance, Tabitha.

There is no doubt that John is a model for us all… Even with a problematic Ross Procedure, he is moving onto bigger and better things!!

From Denise Hill:

Our son at the age the age of 16 received the Ross procedure in 1995. We initially saw it as an answer to prayer that would allow him a greater level of activity compared to receiving a mechanical valve.

Although he had excellent doctors, we still felt alone during this time. The Ross procedure had just started being performed in our area.

Our son also became part of a research study. After his initial surgery, he underwent an additional surgery 5 days after his first and had to have the two valves replaced four and a half years later because of the failure of the Ross. It was very difficult to be one of the 4% of people for which it failed. We are so grateful that we had understanding doctors who worked with him regarding his athletic activities. As parents we knew that the most important thing was for our son to be alive; however, we also had to balance that with our son’s quality of life.

At the time that the Ross procedure began to fail his cardiologist believed me when I expressed my concern that there was something more going on than what the tests showed. They got him into surgery sooner than planned and discovered an aneurysm that for all medical purposes should have ruptured. After fourteen hours of surgery, his surgeon said that there was no medical explanation for our son to be here except for that of a miracle. He played high school and college golf, has a great job, and is getting married this summer.

This was a very difficult experience for a teenager/young adult to go through. I still believe in the Ross procedure and only God knows why we went through all that we did with our son. I know his care is written about in many journals, so I can only hope that others will benefit from it. To his Dad and me he is a hero.

Thank you Adam for all that you are doing with your book and website.

Regards, Denise

CHUCK NOLAN FROM GEORGIA WRITES IN…

Adam,

I read and enjoyed your book last month. Since then, I decided to have a heart valve replacement with a Medtronic stentless valve implanted on Feb 28th by Dr Ed Chen at Emory U hospital in Atlanta…..along with a section of my dilated aorta….5 weeks today. I decided against the RP mostly because I am 54 yrs old, but would have gone Ross Procedure if I were younger.

I have some questions for you. I got off the pain meds quickly but, I am having problems sleeping….Any suggestions? Also, I am on Toprol XL 100 Mg 1xday….not a big deal, but I have noticed that I am very fatigued for several hours during the day and seem to perk up late afternoon or early evening, so I’m wondering if the Toprol could be the culprit….any thoughts?

Chuck

ADAM’S RESPONSE TO CHUCK:

Chuck,

Nice to hear from you! Glad to hear you enjoyed The Patient’s Guide To Heart Valve Surgery. And, congrats on your procedure and the quick departure from pain meds.

You raise a great question about sleep. I had serious problems with that as well. As you might recall, I needed Halcion to get me through the night for the first 6 weeks. I don’t suggest going that route. Any dependent pill behavior can trigger or compound cardiac depression.

Instead, I would suggest that you try to tire yourself out during the day so that you sleep at night.

I know you might be thinking, “Tire myself? But, I’m fatigued during the day?”

This is the problem with the first few weeks for some patients… You’re fatigued in the day but can not sleep at night.

That said, you need to push through the fatigue, avoid napping, and get back to your old routine pre-surgery. As I know and you know, that is much easier said than done. But, it will work! (I have to thank Nurse Chris from Dr. Vaughn Starnes office for this therapeutic guidance. )

So that you know, the “fatigue” you reference is very common. I was fatigued for the first eight months following my Ross Procedure. And, I was not on Toprol

Keep on Tickin!

Adam

Hey everybody,

Here is an interesting link to watching Dr. Paul Stelzer perform the Ross Procedure. The Ross Procedure is special form of aortic valve replacement. I had a Ross Procedure performed by Dr. Vaughn Starnes on December 21, 2005 and now I’m fully recovered and surfing again!!!

Ross Procedure Video By Dr. Paul Stelzer

Keep On Tickin!

Adam

Adam Pick is the author of The Patient’s Guide To Heart Valve Surgery, a unique book which integrates the clinical facts of heart valve surgery with the personal experiences of an actual heart valve surgery patient. This special book divides the valve surgery process into four sections which address the challenges and opportunities faced by both patients and caregivers. To learn more about Adam’s heart valve surgery book, click here.

On December 21, 2005, nearly 435 days ago, I had open-heart surgery to fix a congenital defect in the aortic valve of my heart.

After thirty four years of life, my bicuspid aortic valve which suffered from stenosis and regurgitation, needed to be replaced.

As many of you know, this open-heart medical operation (known as the Ross Procedure) triggered a series of challenging lows (e.g. cardiac depression) and a series of memorable highs (e.g. my engagement to Robyn).

Well… Two days ago I experienced another memorable high that I wanted to share with you – my friends, family and blog subscribers.

“What happened?!” you wonder as you see my smiling, much in need of a shave, face.

This past Saturday, I dug my dusty, nine-foot, eight-inch McTavish surfboard out of the garage. Then, I reached into the dark corner of my closet and grabbed my RipCurl wetsuit.

Yep…

It was time to complete my physical recovery from open heart surgery.

It was time to surf again.

The day was a surfers dream. Sunny, with just a few swooshes of cloud in the blue skies above. I think the high in Los Angeles on Saturday was around 80 degrees Fahrenheit.

The Pacific Ocean held to its name. It was symbolically calm and glassy.

And the waves…

The waves were as playful as a six-week old puppy. Perfect for a longboarder like me…

Or, more accurately, perfect the longboarder I remembered to be (prior to my surgery).

With booties strapped on, I entered the cold, salt water with no expectations.

This would be my first time on a surfboard in eighteen months. This would be the first time that my new heart would experience a surfing adrenaline shot. This would be the first time that my stitched sternum would feel forces controlled by the one-and-only mother nature.

Come to think of it, I was a surfing virgin again.

Fear and anxiety bubbled up as my chest smacked down on the white, waxed fiberglass board. I started to paddle.

“As long as I don’t break,” I thought to myself, “Everything will be fine.”

Fifteen feet into my initial paddle, however, that thought transformed.

There was no pain in my chest. There was no discomfort in my nine-inch scar. There were no heart palpitations that I could feel. There was nothing but a boundary-less emotion of joy.

Chilly water splashed overhead as I slipped through an oncoming wave. More chilly water from the next wave and the next. About a minute after entering the water, I was outside the breaking waves amongst the other surfers in the line-up.

“Is this really happening?” I thought to myself. “This must be some kind of wonderful dream.”

I tested my chest once again.

Using my hands, I thrust my body upward to strike the traditional, surfer pose you see as you drive along Pacific Coast Hawaii in Malibu – butt on the board, legs on the side, chest slumped but upright, eyes gazing to the water’s horizon.

Again, no pain…

Hmmmmmmmm…..

“Don’t get cocky Adam,” I thought to myself, “Take it easy… You did not come out here to go nuts. Just get used to your surfboard. Paddle around a little. Then, call it a day. You’ve been through a lot.”

Needless to say, those thoughts disappeared.

In its place, came an empowering voice that screamed aloud, “LET’S HAVE SOME &$^%*#@ FUN!!!”

In the distance, I saw a friendly mound of bulging water that was going to peak about twenty feet to my right.

Instinct took over.

The time was now.

The hunt was on.

Nanoseconds later I was paddling to the peak.

“GO! GO! GO! GO! CHARGE! CHARGE! CHARGE!” the empowering voice was now yelling in my head. Like a windmill, my arms circulated, cutting through the water, powering me forward.

And then it happened….

The water’s energy transferred to my board.

The need to paddle disappeared.

I angled to the right.

There was only one thing left to do…

One thing.

My internal cheerleader rose again and rang-out, “UP!”

I lept to my feet.

I was surfing again.

I would spend the next 45 minutes frolicking in the water with Jeff. (Jeff recently had a heart attack and had three stents inserted. Already, two months into Jeff’s recovery, he’s surfing. How incredible is that?!)

The magic of the day extended when thirty dolphins or so showed up to celebrate with us.

We had our own surf party to celebrate my recovery and my belated 35th birthday.

Thanks to each of you for your support and encouragement. I’m not sure where I would be if not for your love and help during my recovery!!!

Keep on tickin,

Adam

One of the advantages of the aortic valve replacement using the Ross Procedure is the fact that patients do not require the use of any medications (e.g. Coumadin) following the operation. Recently, however, I learned from Lee Crowley that Dr. Ryan suggests that all Ross Procedure patients take Beta Blockers. My cardiothoracic surgeon, Dr. Vaughn Starnes, has a different opinion as I am not currently taking any medication. Yet, I found Lee’s email to be very interesting. Therefore, I thought I would post it for all you to consider. Here it is:

I am on 50 mg Toprol XL 2X/day. Dr. Ryan (William Ryan III) puts almost all of his Ross patients on a Beta Blocker, as I understand it. I actually called him a couple of weeks ago to see if I could reduce the dosage, and he recommended I not do that at this time.

He said the reason for the Beta Blocker is two-fold.

• One, it keeps my BP in check. He said Ross patients need to keep their Systolic pressure below 120 (preferably around 110). My “normal” BP well before my surgery was around 135/80. Now, it is usually around 112/70.

• Second, the Beta Blocker will reduce my heart rate, especially during activity. This is important to reduce the stress on the heart, especially while it goes through remodelling. I had significant LV Hypertrophy.

Dr. Ryan said he likes to keep his Ross patients on a Beta Blocker indefinitely most of the time. He strongly believes it will help the longevity of the valves. He said I will probably be able to reduce my dosage to 25mg 2X/day at 1-year post-op, and down to 25mg 1X/day one year after that.

I mentioned side effects in my previous post. One side effect I attribute to the Toprol XL is I feel a little sluggishness when I play tennis. I play at a pretty high level, and feel a “micro-second” slow when I play. That’s the best way I can describe it. I played tennis right up to my surgery and did not have this problem. Also, I am cold a lot more often than before, which is a known side effect.

I also occassionally have weird, vivid dreams that I did not have before. I actually enjoy this side effect.

These are not really significant in the grand scheme of things. I can definitely live with them.

I hope your recovery continues to go well. I really enjoyed your pictures of the surgery.

Lee

[Lee Crowley is not a medical professional. The information presented above is presented for discussion purposes only.]