15 Year Anniversary!

 Today is 15 Years Since My Septal Myectomy at Mayo Clinic!  

It's hard to believe, and lots has happened since my open heart surgery, but I wanted to post today to let everyone know that it was totally worth it. The best decision I ever made.  I have been working full time since the surgery, have started another blog about HCM - HCMBeat.com, and have a busy life as a wife, mother and daughter. 

Of course the COVID pandemic has been challenging for all of us, but I am grateful for the blessing of the great medical care that has allowed me to continue living my best possible life, even if it is currently limited by the circumstances.

If you are on the fence wondering if this surgery is worth it, I am here to tell you it absolutely was.  You can see a collection of resources I gathered about myectomy on my new blog - HCMBeat.com.

Meanwhile, wishing you all good health!

Getting Back Up On the Horse Again

Me on Ladybug
(Photo by Jennifer Granger)

On Monday of this week, Martin Luther King Day 2018, I did something that I wasn't sure I would ever do again.  I rode a horse.  Her name is Ladybug, and she is an American Saddlebred horse who teaches people how to ride. She and I have a lot in common. You see, she is a retired show horse. I am a retired show rider.



I started riding at the local stable near my house when I was 11.  From the first time I visited and rode a tall flaxen chestnut gelding named Mardi Gras (I did grow up in New Orleans!), I was hooked.  Soon, I was spending all of my spare time at the stables. Every day after school, and all day on weekends and holidays, you could find me at at Audubon Stables. With all of the practice I was getting, I was soon able to work up to the fancier American Saddlebred horses, the main focus at Audubon.

An early horse show - Age 12

A later show - age 15 on my first horse, a pleasure horse named Son of the Great One

During college - Age 19 on my first five-gaited horse - a gelding named Breezy Ayres

During law school at Age 23 on my last horse - a five-gaited mare named Symbol's Bright Jewell

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I continued to ride throughout middle and high school, and into college and law school.  Upon law school graduation, I moved to Los Angeles, California and started my life as a working adult.  Though I tried to keep up with my riding, it was more difficult to do as a busy professional and it was necessary to travel long distances just to reach areas where horse facilities are located.

Life continued, and the time passed with no time for horses. I met my husband, we married, and decided to have a family. Just before Thanksgiving 2001, we were delighted to welcome our son, Jesse. While struggling through the haze of sleepless nights, I began suffering unexplained headaches that I had ascribed to the stress of the pregnancy and feedings every three hours. Instead, I was diagnosed with a golf ball-sized Acoustic Neuroma (AN), a benign (but still potentially fatal) brain tumor on my auditory nerve. The large size and location of the tumor, which was already compressing my brain stem and causing neurological impairment, meant that immediate surgery was my only realistic option.  

I had two surgeries to treat the AN, one to relieve my hydrocephalus by implanting a ventriculoperitoneal shunt, and another to remove the very large tumor that was compressing my brain stem. I suffered through a lengthy and arduous recovery process.  The suddenness of my illness, compounded with the complications from the after-effects of treatment, left me without a compass or frame of reference for a completely unfamiliar and terrifying situation. Since the tumor was located on my right balance nerve, a nerve that was ultimately severed during surgery, I had to learn how to get by with a compromised vestibular system, which included re-learning how to walk, and adapting to having only one working ear. I also had to learn to take care of my 2-month-old baby under these new and unpleasant circumstances. 

As my months of rehabilitation began to pay off, my previously known but not very symptomatic hereditary heart condition, Hypertrophic Cardiomyopathy (HCM), decided to rear its ugly head and remind me that it was not to be forgotten. About ten months after brain surgery, I almost fainted after walking off the elevator in my condo building. My then-cardiologist referred me to an electrophysiologist in his practice, who recommended I get an Implantable Cardioverter Defibrillator (ICD). My ICD was implanted in 2003, protecting me from sudden cardiac arrest, but doing nothing to improve my worsening symptoms. My shortness of breath gradually worsened until I was unable to walk up the slightest grade without feeling short of breath.  Chest pain became my constant companion.  I avoided stairs and hills wherever possible.  I tried increasing quantities of various medications for years, but ultimately, I maxed out on the dosages.

At that point, I decided it was time to consider open heart surgery. After a huge amount of medical research, soul searching, and inner reflection, on August 11, 2006, I decided to travel to Mayo Clinic in Rochester, MN in order to undergo septal myectomy surgery.  The surgery went as planned, and my surgeon was able to remove the obstructive tissue in my heart in order to reduce my cardiac symptoms.

The last twelve years since my open-heart surgery have been far better. Though I still run out of steam faster than many of my peers, I have been able to live a fairly normal life, but that life did not include horses. In fact, I had pretty much resigned myself to that chapter of my life being over. My myectomy did wonders for my heart, but of course it didn't do anything to improve my balance. I didn't think that I would ever be up to riding again.

Then, at the suggestion of an old horse friend, just as the 2017 holiday season began, I started a Facebook group for Audubon Stables. Over just a few days, 80 people joined the group and were sharing stories of the horses we rode and the fun times we had back at Audubon Stables. They even started planning a reunion.  And all of this talk sparked something in me that had been long dormant. I resolved that when the new year began, I would find a place where I could try riding again.

I did some internet research and located a suitable riding stable with a lesson program. I made arrangements with the instructor, Jennifer, and a few days later my husband and I got in the car and headed out to Lake View Terrace - a 30-minute freeway ride from our home.  We parked next to some horse trailers, and meandered over to the barn where we found Jennifer. The recent fires had burned their way up to the property line of the ranch (which had fortunately escaped harm), and as we looked out at the charred hillside, Jennifer and I worked together to clean and saddle Ladybug. Soon, it was time for me to see what I could do. Jennifer led Ladybug up to the mounting block, and I had a moment of hesitation.  What if I was not up to this?  I pushed aside the fear, got on, and for a split second, it felt like the first time I had ever been on a horse.  Soon, though, my muscle memory took over and it was just like it ever was.  It took me a minute to get in sync with Ladybug, but I forgot about the challenges of the past fifteen years, and just rode.  My focus was on how the horse felt, which diagonal to post on, using leg pressure to get the horse to go straight on the rail. These things made me forget my fear and just ride. There were no worries about what might be. I was just doing the one thing I have always loved and my lesson went by in a flash.

Now, I can't wait 'til I can go back and ride again!

Click here to learn about Acoustic Neuroma 

Click here to learn about Hypertrophic Cardiomypathy 

Click here to learn about the American Saddlebred 

© 2018 Cynthia Burstein Waldman, All Rights Reserved

Come and see my new blog about HCM - HCM Beat.  There are many resources and new stories about items of current interest in HCM, including a page of resources about septal myectomy.

Also, you can follow HCMBeat on Facebook and Twitter at.https://twitter.com/HCMBeat.

Mayo Survey Ten Years Later

This morning I filled out this survey which Mayo Clinic sent to me on the ten year anniversary of my myectomy.  All of the questions in the survey are specifically targeted at patients with Hypertrophic Cardiomyopathy.  The survey asked me how I am feeling now, what medications I am currently taking and whether I have had other cardiac complications or procedures in the ten years following my myectomy surgery.

Ten years after I had my open heart surgery, I am so glad that I chose Mayo so that I am able to participate in and benefit from all of the meaningful research they are doing on the condition.

TODAY IT'S BEEN TEN YEARS SINCE MY MYECTOMY!!!

TEN YEARS!


Wow! It's hard to believe that today it's been ten years since my surgery at Mayo Clinic with Dr. Joe Dearani.  So much has happened in that time...

You can see from the above picture taken on our vacation to Vancouver last week that my son Jesse is now almost 15 years old.  He is taller than his father and will be starting high school next week.
 And I have continued my legal work at MGM (I left for a brief time a few years ago during some corporate re-shuffling, but have been back for 3 years).

In addition, I have continued to be involved in efforts to help other patients get the best care for their HCM, and, today, in commemoration of my tenth myectomy anniversary, I am proud to announce the creation of a new blog and news/information page about HCM which you can find at www.HCMBeat.com.

It has been a long journey, but so worthwhile. Special thanks to Mayo Clinic, Drs. Joe Dearani and Steve Ommen at Mayo Clinic, Drs. Robert Siegel and David Cannom here in Los Angeles, the Hypertrophic Cardiomyopathy Association, and all of the other patients, family and friends that made my journey possible.  I couldn't have done it without you, and I am so lucky that I had all of you in my life.

Here's hoping for another 50 years of good health.

For the latest in my story and about HCM, come on over to HCMBeat.com.  Hope to see you there!

8 year anniversary today!

Exactly 8 years ago at this time I was in Rochester, MN on a bypass machine with my heart stopped, allowing the fabulous Dr. Joe Dearani to remove a large hunk of muscle which was obstructing my blood flow. I am infinitely grateful to him, Dr. Steve Ommen and the rest of the staff at the Mayo Clinic for giving me a second chance at a normal life.  I promise that I will not squander this gift.  I have been working full time, and spending my free time doing fun things with my family.  My son Jesse is about to turn 13, and tomorrow starts the 7th grade.  Time marches on!

Here is a picture of me at the Hollywood Wax Museum yesterday, hanging out with Lucille Ball.

Continuing the climb...

My surgery was almost 6 years ago in August of 2006, and I am still surprising myself with the results. 

Yesterday I went with Jesse and Vince to visit the Will Rogers State Park here in Pacific Palisades, CA.  We decided to take what is described as an "easy walk for the whole family" to the top which is called "Inspiration Point" and has a sweeping vista of the whole city of Los Angeles as well as of the coast.  The walk is 2 miles roundtrip and is 300 feet elevation.  Experienced hikers may think that it is an "easy walk for the whole family," but before I had my surgery, I couldn't even walk up my own driveway without feeling miserable!

Once we started up it seemed fine, so I kept going even though Vince had told me at the outset that maybe I should stay behind.  We climbed higher and higher and I started to get concerned about whether I could make it.  But before I had a chance to wimp out, we were there!  Above is a picture of me at the top.  It seems that my mind is still stuck in a before surgery framework, but my body is able to do what it needs to do.  I didn't even feel any real discomfort.

Meanwhile, I have started swimming again for exercise.  I also surprised myself a few weeks ago when I joined the local Y and swam laps for the first time, really, since my surgery.  I was able to go for 30 minutes with only stopping for a minute or two periodically to rest.  Even in my pre-diagnosis days, I was really only able to go for 25 minutes or so without tuckering out.

Of course, I have been conditioning alot, and ever since surgery (actually, even before) I have been going to the gym at least 5 times a week and doing the elliptical trainer and bike, but who knew?

On the negative side, just to remind me that I am still not cured of all of this HCM nonsense, I have been having a little more chest discomfort (which really feels more like pressure in the neck and jaw) and with my doctor's blessing, have increased my diltiazem (calcium channel blocker) just a little bit to see if that helps the issue.

Pretty great, but not perfect, unfortunately!

Until next time....

See you at the top!

Cynthia

Cynthia@4hcm.org