Adam's Heart Valve Surgery Blog – Page 59

Hey everybody,

I could really use your help… I’m just finishing up the 2010 revision to my book, The Patient’s Guide To Heart Valve Surgery.

As many of you know, one of the current chapters in the book is titled “The Best Piece Of Advice”. In this chapter, I feature thoughtful comments, tips, tactics, tricks and strategies from many former heart valve surgery patients.

Needless to say, it’s a great chapter with some valuable ideas. That said, I wanted to add some more quotes from those who have already had heart valve repair and heart valve replacement surgery.

So… What is your “Best Piece Of Advice” for future patients and caregivers? To answer that question, simply below to leave a comment. (Or, you can scroll down to read 15+ responses from recent patients and caregivers.)

In advance, thanks for taking the time to help out!!! Who knows… Maybe your ideas will be featured in the new edition of the book? 🙂

Keep on tickin!
Adam

I just received a great, follow-up question about medical tests used to diagnose heart valve disease from Sophie.

Sophie writes, “Adam – Thanks for the recent blog about cardiac MRIs and echocardiograms. Unfortunately, my aortic regurgitation continues to become more severe. It looks like I’ll need surgery soon. To better diagnose it, I’ve been told I may need a transesophageal echocardiogram. Can you tell me what happens during a TEE? Is it painful? Thanks, Sophie”

To help Sophie better understand what happens during a transesophageal echocardiogram, I was super lucky to find an educational video that details this medical examination used to help diagnose heart valve disease.

If you have never heard the term before, a transesophageal echo uses an ultrasound transducer that is positioned on an endoscope and guided down the patient’s throat into the esophagus (the “food pipe” leading from the mouth into the stomach). The TEE test provides a close look at the heart’s valves and chambers, without interference from the ribs or lungs. TEE is often used when the results from standard echo tests are not sufficient, or when your doctor wants a closer look at your heart, according to The Cleveland Clinic.

I hope that helps Sophie (and perhaps you) learn a little more about transesophageal echocardiograms.

Keep on tickin!
Adam

Josh has an interesting set of questions regarding keloid scars and sternal wires.

As you can read below, Josh is specifically looking for help from our blog readers. Here is what Josh writes:

Hey Adam-

Things are going great 5 months after my aortic valve replacement and ascending aortic graft.  Most of the unpleasant sensations have subsided to a very manageable level. However, I do have an issue that I wanted to ask you and the blog members about…

I have two problem areas on my incision site that I saw my surgeon about today.  First, the bottom of my scar has a fairly large raised keloid (shown below) which is very sensitive to the touch.

Second, the top of my scar has a prominent bump that turns out to be part of the sternal wires that were used to fuse the bone that are sticking out.  Most of the time these wires are left in place, but my surgeon said they could do a removal.  He further added that if we were going to remove the wires, he’d have a plastic surgeon consult and help with the re-closure of the incision so as to try to avoid the keloid problem again.

Has anyone had any experiences with one or both of these issues?  My symptoms are not intolerable, but they are fairly uncomfortable.  I’m not looking forward to another surgery, but my understanding is that it’s a fairly simple outpatient procedure.

To leave me a comment, please scroll below!

Thanks and hope all’s well,
Josh

I just received a fantastic question from Gwen about waking up in the intensive care unit after heart valve surgery.

She writes, “Adam – Thanks so much for all your help. While I’m still anxious, your support has made me feel somewhat ready for my upcoming heart valve operation. I have one more question for you about the intensive care unit. When I wake up from surgery, exactly how many tubes are going to be sticking in/out of me? Keep on tickin! Gwen”

Interestingly enough, this question triggered a very, very, very unique memory for me.

Me (Adam) In The Intensive Care Unit

So you know… My doctors and nurses did not explicitly detail the patient experience within the intensive care unit. Looking back on it, that would have really helped manage my expectation as I came out of general anesthesia.

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I’m fascinated by the different tools and technologies that help surgeons reconstruct the human heart.

On this point, I just came across an interesting video about the use of extracellular matrix for heart valve repair. In this educational video, Dr. Marc Gerdisch of the St. Francis Heart Center describes extracellular matrix and how it is being used to enhance tissue function in repaired mitral valves.

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Throughout the highs and lows of my heart valve surgery experience, my support group never wavered. Their commitment to me and my recovery was extraordinary considering the challenges (cardiac depression, pain management, Vicodin addiction) I faced.

Me (Adam) With My Family

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Together, as patients and caregivers, we’ve learned that the human heart can do some odd things after valve repair and valve replacement surgery. In particular, the heart can pound a little louder, the heart can beat a little faster and, if you received a mechanical valve replacement, the heart might make a clicking noise.

That said, I just received an interesting question from Rita specific to very fast heart rates after heart valve surgery.

She writes, “Hi Adam – I have a question. Has anyone had ventricular tachycardia after mitral valve replacement. For ten months, I’ve been telling the doctors about the episodes I’m having. Finally, an episode was caught on EKG while I was on treadmill. They are now going to do an EP study and possible ablation. The doctors are looking for scarring among other things. Plus, the doctors may also look to see if anything is genetic. The VTAC episodes are really scary to say the least. Have any patients on your awesome blog experienced this? I would love to hear the outcome. I had atrial fibrillation after surgery. Now, I am wondering if it was VTAC the whole time? Thanks, Rita”

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There really is nothing better than waking up in the morning, turning on the computer, clicking my email inbox and receiving a patient success story from one of my readers.

The story below comes from Mark Hurst in Michigan. As you can read, Mark did not let heart valve surgery inhibit his altruistic bike ride for a Make-A-Wish Foundation charity event. If you’re looking for some inspiration, please continue reading:

Hi, Adam –

I am 41 years old, and (quite suddenly) had aortic valve and aortic root replacement on March 30, 2009.

When I was initially diagnosed with severe congenital aortic dilation and scheduled for near immediate surgery (3 days later), one of the first resources I found was your website.  The information on the site really helped me get oriented to and educated about what was happening to me. It also gave me hope that full recovery is very possible.

Mark Hurst – Heart Valve Replacement Patient

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Amy just sent me an interesting question about my newsletter. She writes, “Adam – I’ve been coming to your blog for three months now. In May, I was diagnosed with severe regurgitation from mitral valve prolapse. I’m curious to know, is there a hidden fee if I subscribe to your newsletter? Is it really free? Thanks, Amy”

The answer to Amy’s question is a very, very, very simple… Yes, It’s Free! There is no hidden cost to signing up for my newsletter. I know there are a lot of Internet scams out there, but my free newsletter is definitely not one of them. Maybe that is why several thousand people have signed up!

If you would like to subscribe, simply click the button below. That way you can stay up-to-date on all the latest news, insights, research and opinions from our growing heart valve community. Plus, in the next few weeks, I am going to announce a number of helpful changes to this website that you will not want to miss.

I hope that answers Amy’s question.

Keep on tickin!
Adam

Through your stories and my ongoing research, I have learned that properly diagnosing heart valve disease can be tricky. That said, I always encourage patients to get a second opinion prior to any surgical treatment (if possible).

However, Gregg just sent me an interesting question about the use of M.R.I.’s as a diagnostic tool for valvular disorders. [If you have never seen an M.R.I. of the human heart before, please see below… Can you identify the two valves that are opening-and-closing in this image?]

M.R.I. of the Human Heart

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I just received a great question from Sandra about heart valve disease, enlarged hearts and valve surgery.

Sandra writes, “Hi Adam, I read that you had an enlarged heart before your surgery. I was wondering if it has returned to normal size since the surgery?  I had mitral valve repair due to severe mitral regurgitation and an aneurysm repair in July 2008. I was told that my heart was enlarged and that it may not return to its original size. I exercised quite vigorously before my diagnosis thinking that my shortness of breath was due to being ‘out of shape’. The more short of breath I became, the harder I exercised. Now, I am wondering if this caused the heart to enlarge even more. My echo at 4 months post-op showed the heart still enlarged. I go again in September for another echo and I’m curious to see if it has returned to normal. Thanks, Sandra”

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Here’s a great patient success story about John Doss, a 56-year old Karate instructor from Michigan. Doctor Ali Kafi, Chief of Clinical Cardiothoracic Surgery, from Detroit Medical Center, performed the aortic valve replacement.

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During the video, Dr. Ali Kafi references the use of a mini-sternotomy. To give you a visual comparison of a mini-sternotomy incision versus a full sternotomy scar, please consider the pictures below. The first picture shows a patient with a mini-sternotomy.

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Sarah just sent me another interesting story about women, optimistic thinking and heart disease that was recently posted at the Los Angeles Times. Here are the details:

Many studies suggest that people who possess a sunny outlook on life tend to have better health and live longer. Here’s more evidence for the theory. A study by cardiac researchers showed that optimistic women had a lower risk of developing heart disease or dying of any cause compared to pessimistic women.

The study, published today in Circulation: Journal of the American Heart Association, studied 97,253 postmenopausal women ages 50 to 79 from the U.S. Women’s Health Initiative study. The women did not have cancer or heart disease at the start of the study. They completed questionnaires designed to assess their emotional outlook.

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I have the privilege of speaking with caregivers from all over the world.

As many of us know, heart valve surgery can be just as trying on the caregivers as it is on the patients. For this reason, many of their stories are both emotional and inspirational. That said, I thought you might like to read an email from Denise about her son, Eli, and his recent aortic heart valve repair:

Eli & Dr. Marc Bleiweis

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As we have discussed before, most minimally invasive treatments for heart valve disease continue to show encouraging results. Recently, additional results for high-tech devices from Edwards Lifesciences, Medtronic and Evalve have been posted.

Specific to the MitraClip for mitral valve repair, I just saw an announcement which detailed the results of 107 patients for the nonrandomized Everest 1 and 2 studies.

• A full 66% of patients did not require surgery and maintained a mitral regurgitation grade of less than 2 at 12 months, the primary efficacy end point of the study.
• In all, 32 patients needed mitral valve replacement surgery within 3.2 years of receiving the MitraClip. Of these procedures, 84% were successful.
• 9%, had a major adverse event during the follow-up period, including one non-procedure-related death.
• Overall procedural success was 74%, and 64% left hospital with a mitral-regurgitation grade of 1 or less, as opposed to grade 3 or 4 at study entry.
• In all, 32 patients needed mitral-valve surgery within 3.2 years of receiving the MitraClip.

“Surgical options were preserved,” the authors, led by Dr Ted Feldman (Evanston Hospital, IL), write in the August 18, 2009 issue of the Journal of the American College of Cardiology. “The fact that there were no in-cath lab deaths during this procedure in over 100 patients compared with, for example, stent therapy, shows that this is acceptable in terms of safety, all the more so given that this is a brand new intervention,” Feldman told heartwire.

Investigators also highlighted the “steep learning curve” seen in the study, with the first 30 procedures taking over four hours, while the last 30 typically took under three hours.

A randomized trial, comparing percutaneous mitral-valve repair with the MitraClip with surgical valve replacement or repair is ongoing; one-year follow-up will be completed in October, Feldman said. The MitraClip received a CE mark in Europe last year.

Keep on tickin!
Adam

I just received a great question from Leticia about exercise prior to heart valve surgery.

Leticia writes, “Hi Adam, I have been diagnosed with a bi-cuspid aortic heart valve. I have no symptoms or shortness of breath. My cardiologist hopes I can go for another 10 years without surgery. I’m concerned about my hobbies, which are aerobics and I teach ballet. I love my exercise and my doctor states that I don’t have to change my lifestyle unless I’m feeling symptoms. I’ve just read stories about athletic people having to reduce activity until after surgery. I don’t want to pass out one day and seriously injure or kill myself. Do you have any other info on exercise and bi-cuspid aortic heart valve? Thank you, Leticia”

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I just received a follow-up question from Rob about pumphead and memory loss after heart surgery that you might find interesting.

Rob writes, “Hi Adam – I have a quick question. My dad just had open heart surgery two days ago to repair his mitral valve (it was a 4+ for regurgitation). He also has had previous issues with atrial fib.  Today, he was having some issues remembering particular words/phrases. This concerns the nurses and us because of the possibility of brain issues after surgeries like these. I have a doctor-friend who says some of this is normal based on all the drugs he is on and the use of the heart-lung machine. Did you experience any of the brain and thought issues with your surgery? Do you have any insight on that? Thanks so much, Rob”

Although I did not have any direct cognitive problems following heart surgery, I have written about this post-operative complication on several occasions.

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Okay… Ready for some heart anatomy trivia?

The question is, “How much blood moves through your heart valves in one hour?”

A. 5 gallons
B. 10 gallons
C. 50 gallons
D. 100 gallons
E. 500 gallons of blood

To find out the answer, scroll below the beating heart.

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Thanks to all of you who have requested an update on Ethan, our four-month old baby boy.

So you know… Ethan is doing greeeeeeeeeeaaaaaat!

• He’s about 15 pounds now, having doubled his weight since birth.
• He’s doing his best to communicate (via coos, grunts, and crys) with Robyn and me.
• He’s sleeping pretty good, waking up only 1-2 times a night.

Best of all… Ethan is a very, very, very, very smiley baby. Personally, I can’t get enough of his teeth-less smiles. It really does melt my heart each time I look at him. Last week, he started to laugh which is incredibly funny.

Here are some recent pictures of Ethan, Robyn (my wife), Donna (my mom) and me. In the first picture, Ethan is in his Lion towel – after bath time with his mommy.

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Ray just emailed me a great question about heart valve disease.

He writes, “Adam – Try this one on for size… I’m 57 and newly diagnosed with severe stenosis in my aortic valve. The docs think I need surgery soon. I can’t believe it. I feel fine. No real symptoms. But, the echo shows my heart is already dilated somewhat. Even though the cardiologist told me what is wrong… I want to see what is wrong. Do you have any pictures of heart valve disease? Thanks, Ray”

Like Ray, I experienced a very similar thought upon diagnosis, “What does a diseased heart valve look like?” That said, please find several pictures below to help Ray (and perhaps you) better understand the visual anatomy of several different types of valve disease.

First, however, I thought you might like to see what a normal heart valve looks like for comparison. Here are two pictures of a normal aortic heart valve and tricuspid heart valve:

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