Adam's Heart Valve Surgery Blog – Page 57

I just received a very appropriate email from Phil about age groups and heart valve surgery.

Phil writes, “Hi Adam – On Friday, I was diagnosed with severe aortic stenosis due to a bicuspid aortic valve. I’m 48 years old with three great kids and a loving wife. This was a complete shock to me and I’ve spent the weekend digesting the uncomfortable news that open heart surgery awaits me. It’s odd. Although I knew about the murmur, I was told this wouldn’t impact my heart for 10 or 20 years. Now, the doc says the valve is calcified and surgery is a must. Is heart valve surgery common for my age group? Thanks, Phil”

Phil raises some excellent points in his question. In fact, Phil’s story brings back several memories specific to my own diagnosis and surgery. Like Phil, my valve disease rapidly progressed from moderate to severe aortic stenosis. Like Phil, I had a bicuspid aortic valve. Like Phil, I was told surgery would not occur until I was in my 50’s. (FYI, at the time of my surgery… I was thirty-three.)

Picture Of Calcified Heart Valve Leaflets

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Hi everybody,

Thanks for all of your emails about Ethan, our six-month old son.

So you know, Ethan is doing ab-soooooooo-luuuuutely wonderful. He’s been very, very, very busy adjusting to his new life and his new parents, Robyn (my wife) and me. Here’s the latest Ethan update:

• Ethan watched his first Michigan Wolverines football game. As I went to Michigan for college, I was very happy to see him cheering for the right team.

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I just received a great patient story from Annette about asthma and heart valve disease.  Here is what she writes:

Don, my husband, had his aortic valve replaced with a cow valve and his mitral valve repaired on July 21, 2009.  Prior to the surgery, Don suffered from severe asthma. His situation was so bad, eleven years ago, we moved from Illinois to Florida in hopes of helping his bad asthma. Unfortunately, the move did not help.

Don Houdek – Double Heart Valve Replacement Patient

Well… Don and I are happy to report that – since his heart valve surgery – he has not taken any asthma medicine. At check-ups, Don’s lungs are showing up “clear” when the doctor listens to him.  I have to admit, this was one of the best perks of having his heart valves repaired and replaced.

Thanks so much for your heart surgery book which relieved our anxiety!

Regards,
Annette Houdek

I just received a fantastic, patient update from Anita. As you can read below, Anita is hiking and camping just six months after mitral valve repair surgery. Here is what Anita wrote to me:

Hi Adam,

As you may remember, I had mitral valve repair at The Cleveland Clinic on March 30, 2009. Doctor A. Marc Gillinov was my surgeon.

I am doing great. In fact, last weekend, Mike and I visited the Adirondack Mountains near Lake Placid, New York. The journey (hiking, camping, climbing) was magical.

Anita, Heart Valve Surgery Patient, With Mike

I climbed two of the “High Peaks” which required us to hike uphill for two miles as we reached a 3,800 foot elevation.  Each of the peaks had spectacular views at the top. I felt so happy and so grateful to see the all of the beauty that was present.

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I just received a roller coaster email from Sarah about endocarditis, swine flu (H1N1 virus) and heart valves that made my head spin. In the end, Sarah raises some great points for patients and caregivers about endocarditis, swine flu, fevers, false tests and dental work. Here is what she writes:

Adam,

I just returned from a very scary 36 hours that landed me in the hospital with fears of endocarditis.

Last Friday, I called my primary care doctor because I had been fighting a cough, congestion and fever for over a week. She did a quick test for the flu, it came up negative. I told her that I had dental work to put on a crown about 10 days earler, two days before the fever started. Well, that set up a red flag for the possibility of a heart valve infection (endocarditis) even though I had used amoxicillin as advised by my doctor before the dental work.

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Jan just sent me an interesting email about pleural effusions and heart valve surgery.

In her note, Jan writes, “Dear Adam, I am the caregiver of my 59-year old brother who had aortic valve replacement (with a bovine valve) at Vanderbilt University Hospital on July 13, 2009.  The valve itself has done okay but he has been in-and-out of the hospital twice since surgery. Fluid continues to collect between his chest wall and right lung. The fluid has been drained twice. Is this common? Thanks, Jan”

It sounds to me like Jan’s brother is experiencing a post-operative complication known as a pleural effusion.

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Elizabeth Taylor just announced that her heart valve repair was successful, adding that “it is like having a brand new ticker.”

The message on her Twitter page comes two days after she announced she was having heart surgery at an undisclosed hospital to repair a leaky heart valve. In a short message, the Oscar-winner thanked fans.

 Elizabeth Taylor

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I just received an excellent question from Julie about trace heart valve leakage after surgery.

Julie writes to me, “Hi Adam – My husband, who had mitral valve prolapse surgery on October 31, 2008, went for the annual check-up with his cardiologist. In review of the echocardiogram results, we were told that there was slight leakage in the mitral valve. The cardiologist told us that it was okay. But, when I asked him if the valve could require surgery again, he said that was possible. Do many patients experience heart valve leakage after surgery. Thanks, Julie and Jon!”

I can directly relate to the concern and worry that Julie carries regarding the trace regurgitation in Jon’s mitral valve.

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Considering my fascination with medical technology, I recently came across an interesting video about the use of stem cells to create heart valve replacements for the treatment of valvular disorders including aortic stenosis and mitral regurgitation. That said, I thought you might find this video very interesting:

In the past, I have written several stories about stem cell use for heart valve development. Here is one story which chronicles Dr. Magdi Yacoub’s ongoing research about heart valve replacements generated by stem cells.

Keep on tickin!
Adam

I just received a great patient story from Bobbie Ayala about insurance providers, misdiagnosis, her procedure and Dr. Fontana. Without further ado, here is what Bobbie wrote me:

Adam,  I have been reading your book and following the stories in your blogs for over a year.  The information that I received dispelled many of the fears I had about heart surgery.  I want to share my experience with you.

I am a 57 year old female.  I was diagnosed with aortic regurgitation and I also had a 75% colluded coronary artery.  I had seen a cardiac surgeon at Kaiser and he was absolutely no help.  His recommendation was to “wait and see”.  Furthermore, he made some comments to the effect that if I wanted surgery he could schedule it next week.  For the record his name was Dr. Pfeiffer (do not recommend).  Anyway, the experience was to say the least scary and awful.  Then I started reading your book and following your blog.  I realized that maybe this surgeon was also incorrect.

In July, I was able to change my insurance from Kaiser to Blue Cross Anthem.  With my new insurance, I could choose the doctor and hospital I wanted.  First, I checked out the best Heart Hospitals in the United States and determined locally, the best was Cedars Sinai.  (I also contacted one of the doctors at Cleveland Heart Institute and was given the advise, “Do not wait!”)

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I just received a great question from Jenny about sleep after heart valve surgery.

Jenny writes, “Adam, I had mitral valve replacement seven days ago for regurgitation. I’m struggling a bit as I deal with the some of the post-operative challenges you address in your book. I’m really having an issue getting a good night of sleep. Sleeping at the hospital was tough enough. But, it’s gotten worse since I came home. I feel like a Zombie. And, the night sweats continue. Is this common? Thanks, Jenny”

Over the years, I have spoke many patients – especially tummy sleepers – that have expressed several sleep problems following heart valve surgery. Some of those problems include:

• Inconsistent sleep, waking up often
• Insomnia
• Night sweats
• Discomfort getting in and out of bed
• Heart pounding noises
• Mechanical valve replacement clicking

Finally, some patients may have an adverse reaction to medication intended to enhance sleep. Personally, I had a very, very, very strange reaction to Ambien. One night, after taking a 10mg Ambien pill, Robyn (my wife) found me sleepwalking through our house. When Robyn approached me, I responded to her as if I was a character in a book that I was reading. When I woke up the next morning, I had no memory of the episode. Needless to say, that was the last time I took Ambien.

As many former patients read this blog, maybe they can share their thoughts on this topic. Did you experience any problems sleeping after heart valve surgery? Scroll down to post a comment!

I hope this helps Jenny (and perhaps you) learn more about sleep after heart surgery.

Keep on tickin!
Adam

As you may have seen, the recent post, Did You Travel For Heart Valve Surgery?, has generated a lot of interest and response – as over 25 patients and caregivers have commented.

I have also received several emails from patients wanting to know more about traveling to The Cleveland Clinic for heart valve repair and heart valve replacement surgery.

That said, I called The Cleveland Clinic on Monday to better understand the scale and scope of patients traveling to the world’s number one cardiac care center. I learned three great factoids (from their patient education team) that you might find interesting. For 2008:

• More than 50% of Cleveland Clinic patients reside outside the state of Ohio;
• Patients from 89 countries came to The Cleveland Clinic for cardiovascular care; and
• Patients from all 50 states came to The Cleveland Clinic for cardiac surgery.

I hope this information helps you learn more about the patient profile at The Cleveland Clinic. To get direct patient feedback about surgeons at The Cleveland Clinic, please visit our Heart Surgeon Database.

Simply type “Cleveland” into the city search field. The search results will share actual patient experiences with the following cardiothoracic surgeons – Svensson, Roselli, Gillinov, Mihaljevic, Smedira, and Pettersson.

Keep on tickin!
Adam

I guess this patient success story would classify as ironic.

According to The Scottish Sun, a vegetarian teenager from Scotland, who was suffering from a rare cardiac condition, is now being kept alive by a pig heart valve replacement.

Robyn Cairney, 18, of Ruckazie, Glasgow was diagnosed with aortic stenosis and regurgitation after she collapsed at the gym. Over time, the condition caused her aorta to narrow, which allowed blood to dangerously flow back to her heart. The most common symptom is shortness of breath with exertion, resulting in some patients feeling “out of shape,” according to the American Heart Association.

“It came totally out of the blue,” Cairney told The Sun. “I was at the gym and became unwell during a mile run. I couldn’t breathe and wouldn’t stop coughing. Then my lips started turning blue and I knew that something was seriously wrong.”

When the valve becomes excessively obstructed or leaky, the valve must be repaired or replaced.

“The doctors told me that I would need to have a valve taken out and replaced by one from a pig,” Cairney said. “It was a bit of a shock being a vegetarian, but I realized it was a life or death choice. Obviously everyone is going to pick life, so now I’m a vegetarian being kept alive by a pig.”

Cairney was fitted with the pig’s valve during open heart surgery at the Golden Jubilee Hospital near Glasgow. This type of valve replacement could last for 20 years. Cairney may have to undergo surgery in the future to have a mechanical valve fitted.

“I’m just glad I can get on with my life now and am determined to make the most of everything I do,” she added.

Keep on tickin’ Robyn!
Adam

I just received a great question from Carol about traveling for heart valve surgery.

She writes, “I have concerns about choosing a hospital that is highly regarded for heart valve replacement surgery but out of town. Have any of your readers traveled significant distances for their surgeries? Were there any problems? How did they handle follow-ups? Thanks, Carol”

Carol raises a very good point. In fact, her email reminded me of my gut reaction when I was diagnosed with severe aortic stenosis and told I needed surgery.

“Even though I live in California, I’m going to The Cleveland Clinic or The Mayo Clinic!” I thought to myself. “No messing around… I want the best surgeon… That surgeon must be in Ohio or Minnesota.”

So you know, that is a very, very, very common thought among many of the patients and caregivers I have spoken with over the years. Interestingly enough, that thought often turns into reality for some patients. So you know, I recently learned that over 50% of heart surgery patients at The Cleveland Clinic are not residents of Ohio (e.g. Robin Williams).

However, when I took the time to research and evaluate surgeons for the procedure I wanted, I found some heart valve gurus right in my own backyard. As I live in Los Angeles, I located several, highly regarded surgeons within 10 miles from my home – including Dr. Starnes (USC), Dr. Trento (Cedars) and Dr. Shemin (UCLA).

I admit, I was lucky. This is often not the case for many, many, many, patients out there. As a result, patients must travel – by car, by plane – to have surgery done.

Mary Billings – Heart Valve Surgery Patient
(Traveled From Fiji To Los Angeles)

In fact, I know patients from Fiji, Trinidad, Somalia, The Philippines and Malaysia that have traveled to the United States for surgery. Recently, I featured a story about Patrick’s journey to The Cleveland Clinic from Brazil.

The points I am trying to make are two-fold.

• First, each patient case is unique. Please take the time to evaluate your surgical needs. Then, research the surgeons and hospital that provide the best care for you.
• Second, traveling for heart valve surgery does occur – and, quite frequently. That said, many hospitals have services to make your pre- and post-operative time very manageable.

I believe several of our readers did, in fact, travel for their heart surgery. If you are one of them, can you help Carol? Simply scroll below to post a comment or read other patient posts.

Keep on tickin!
Adam

I just received an email from Kevin about the use of recliners after heart valve surgery.

Kevin writes, “Hi Adam – At 58 years of age, it’s finally time to get the valve fixed. My aortic stenosis is now severe so I’m preparing for the surgery – both mentally and physically. One quick question for you… Does it make sense to use a recliner instead of regular bed during the early part of the recovery? I hear it can be pretty painful getting out of a regular bed. Thanks, Kevin”

This is a fantastic question for patients and their caregivers to consider. Plus, I give Kevin a lot of credit for proactively thinking about what happens when patients return home from the hospital. By the way, to learn more about stenotic aortic valves, click here.

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I just received a question about the Ross Procedure for aortic valve replacement from Evelyn.

She writes, “Adam – The stenosis in my aortic valve is getting worse and I’m starting to feel the symptoms. My valve has been upgraded to severe stenosis from moderate status and it looks like surgery is in my future. I’m investigating my options and considering the Ross Procedure. By chance, do you know how many Ross Procedures are performed each year? Thanks, Evelyn”

Evelyn raises a great question. In fact, when I first learned of the Ross Procedure, as an alternative to traditional approaches, I thought to myself, “Sound goods. But, what is the surgical success rate of the Ross Procedure? And… How many of those procedures have been done?”

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One of the critcal learnings from my heart valve surgery experience was:

The patient (or their caregiver) must, at times, be tenacious. We must, at times, ask questions that may or may not be silly. We must, at times, stand up for ourselves and our hearts. Ultimately… we must, at all times, be our own, best advocate.

I am reminded of this belief as my inbox is often filled with patient and caregiver emails that radiate frustration and confusion. Many of these emails begin, “Adam, I really need to vent right now. I’m having problems with __________.” However you chose to fill-in that blank, I can relate.

Patrick Hightower – Heart Valve Surgery Patient

Recently, I received a patient story that illustrates just how far certain patients and caregivers will go to get the best care. Here, for your review, is the educational and inspirational story of Patrick Hightower:

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Since my heart valve surgery, I have been fascinated by the strategic, corporate acquisitions of leading device manufacturers in this industry.

In fact, I began writing about the ongoing consolidation of heart valve manufacturers years ago. As of late, the “urge-to-merge” has really focused on the minimally invasive technologies for both heart valve repair and heart valve replacement.

That said, it was somewhat expected that a company like Evalve, with its MitraClip technology for mitral regurgitation, would be acquired. However, for some reason, I didn’t think that Abbot Laboratories would be the gobbler. I thought Edwards or Medtronic or St. Jude might be the buyer. (Then again, I think Abbot was one of Evalve’s investors.)

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Waking up today is never easy.

When I see the September 11 on my clock, I know I need to stop and think.

I also need to… remember.

Specifically, I remember Scott Weingard, my friend and fraternity brother. Among all the goodness in Scotty, he had an infectious laugh (more like a giggle) and positive outlook on everything. Scottie radiated possibility – both on and off the basketball court.

Today, like many days, I am thinking about Scotty. My prayers are with him, his family, our friends. To learn more about Scotty, please visit the Scott Weingard Memorial Website.

Keep on tickin!
Adam

Dr. Vince Gaudiani has provided us with several insightful videos in the past. As you might recall, we recently featured Dr. Gaudiani’s two-part video series about heart valve surgery. Given Dr. Gaudiani’s 25-year career as a cardiac surgeon, this video was applauded by our patient and caregiver community.

Yesterday, I learned from Dr. Vince Gaudiani that he has created a new video titled, “How To Think About Surgical Outcomes?” Considering our ongoing discussion about (i) how to manage patient expectations and (ii) how to prepare for surgery, I found this video very, very, very interesting.

Above, you will find the first part of the video. In the next few days, I will post the second part. Simply press the play button and make sure the volume on your computer is on.

Thanks to Dr. Gaudiani for taking the time to share his unique experiences, thoughts and data. It should be no surprise that if you visit our Heart Surgeon Database, Dr. Gaudiani has received several glowing reviews from our patient community. (Just type “Gaudiani” in the last name search field.)

Keep on tickin!
Adam