Susan's Heart Valve Journal

This works for me. Hope it will for you.

For anyone who needs a friendly reminder, today. You can do it.

December 1, 2017. It was the ultimate paradox - the day I dreaded and looked forward to at the same time. At this hour last year, I was in an OR just outside of Philadelphia while my surgeon and medical team repaired my leaking mitral valve and chords.

In what seemed like a minute, I woke up in a beautiful private room in the CICU with smiling nurses around me. I was able to speak to my husband and sister and felt an enormous surge of relief that surgery was behind me. I don’t remember much of the first day except that I ate the world’s greatest ice chips while I was in and out of the best sleep I had in awhile.

On some days, It seems like yesterday and, others, forever ago, but I am so happy to celebrate my one-year anniversary, today, and to tell everyone in the waiting room and those who are recovering, that you, too, will look at your procedures as a memory in no time.

We never know why trials and tribulations come our way, but I know that many good things and people - including the wonderful heart warriors on this site - have come into my life as a result of this one. I know I was meant to take this path and am grateful for the strength and blessings that have come from it. You, too, will find the best in the experiences that make you who you are.

Thanks to everyone on this site who provided encouragement to me. I can never sufficiently express how grateful I am for your support, but I will always be thankful to each and every one of you.

All the best to Debbie, Paul, and Brian, tomorrow, and to Jane and Jennifer on Tuesday. You are all in good hands and will be putting your procedures in the rear view mirror very shortly. Stay positive and focus on all the great adventures that await you. We'll be watching for your updates and cheering you on every step of the way! You can do this!

Today is a big day for several of our heart warriors. All the best to Joan, Dan, David, and Paul. Best of luck to Roxanne, tomorrow, too. The waiting is over - time to join the recovery club! We'll be ready to welcome you. You've all got this!

Saw this hands on CPR training tool in Santa Ana, California airport and spent five minutes to refresh my knowledge. Everyone should know how to perform this life- saving activity. Feedback is provided on hand positioning and compression depth/speed.

My (fraternal) twin sister and me - celebrating one of our 40th high school reunion weekend events. Nine months post mv repair. She was my cheerleader every step of the way! Shout out to the caregivers who lift our spirits and speed our recoveries.

Eight weeks after surgery, I was taken off nearly all the remaining post-operative medications by my surgeon. A few weeks later, my cardiologist put me back on low dose metoprolol and, another drug I hadn't taken before, lisinopril. Based on an echo-cardiogram I had at his office at the end of January, he told me that my ejection fraction dropped to 40% and these drugs would aid in "heart remodeling". I asked him if there was anything else I could do (like exercise) to improve it since I didn't want to take prescription drugs, and he said, "No. Clinical trials have shown that this combination improves ejection fraction if taken soon after surgery. If you don't take them now, they may not work, later." I reluctantly agreed provided I could have another echo-cardiogram in three months.

I had one at his office in May. Despite multiple phone calls, I could not get a return call with the results. I was repeatedly told that, "The doctor had to sign the report and they would get right back to me." After six weeks passed, I called a new cardiologist to have my records transferred. I simply couldn't continue taking medications without knowing whether or not they were effective.

I finally had the appointment with my new cardiologist last week. He said, "I don't see one echo-cardiogram where your ejection fraction was below normal." (NOTE: I've had three echos and two TEEs since my original diagnosis in July 2017 and the EF was normal in all of them.) He told me that I could stop taking both drugs as he "could not find any evidence why they were prescribed in the first place."

What do I do with this information??? Do I call my original cardiologist and call him out on his diagnosis? Do I call my lawyer? Do I just forget it and move on?

I took these medications for six months and would still be taking them if I didn't switch physicians. I am not happy that I was needlessly subjected to this treatment and the side effects that go with these drugs. What would you do?

Wherever you are in your journey, you will relate.

At the request of one of my heart sisters on this site, I was asked to re-post some advice I gave to a young girl facing mitral valve repair surgery. I'm glad this resonated with her and maybe it will for you, too. Instead of repeating that post, verbatim, I will explain why I told her to create her own story instead of focusing on mine.
I'll give you a little background first. Years ago, I was employed by a company president who was an incredible workaholic. He was a cancer survivor and had been on the right path to good health for years, but he was backsliding in a big way! His physician said, "You don't need a doctor, you need a coach." So, I assisted him in the search for a professional in our area in hopes he could get his personal and work priorities in check, but we didn't find one that suited him. Long story short, he decided he could do it on his own and I decided to leave my job and go back to graduate school to become a coach, myself. Although I don't make my living as one, I utilize what I learned every day.
After years in business, I couldn't understand why I would repeatedly see executives, managers, and employees struggle with personal and professional goals. I had even been there myself a few times. Many described themselves as "stuck" - so paralyzed that they couldn't even see the next step to get out of their ruts. So, after a year of academic study, I found out (in a nutshell) the importance of positive imagery, visualization, and moving toward your goals without fixating on the barriers to achievement.
Most of what people worry about never comes to fruition. They also spend tremendous time, energy, and pain trying to change other people or things that are not within their locus of control. I learned that a good coach will guide clients to identify in very clear detail what they want to achieve and will also help them react differently when they encounter people/ things that are not within their ability to change. This results-oriented thinking can be applied to almost anything in life - including heart surgery.
Like most of you, I was not prepared to hear the news that I needed surgery. However, once I accepted that my heart defect wasn't "within my control," I decided to focus on the things that were. I knew I could educate myself about my condition, determine my options, make an informed selection, and prepare. I also decided that my goal wasn't going to be getting through surgery or recovery, it was going to be getting back to my healed self and normal life. Yes, I had interim activities to get there, but ultimately, I relinquished all the worry about the process to my medical team since those outcomes were within their areas of expertise.
Like most of us facing surgery, we have already been through some kind of adversity. We possess the skills and abilities to persevere during difficult times and we have done that successfully on many occasions. I was confident in my resilience. I knew I would use those same behaviors and coping mechanisms, if and when I needed them, but I didn't dwell on it. Instead, I chose to look at my surgery like a multi-step project, a means to an end - no different than what I used in school and at work for decades. Some parts would be more challenging than others, but for me, it was about maintaining forward movement toward the goal - remember, it was achieving my healed self, not getting through surgery. Sometimes the steps were small, but the emphasis was not about trip, it was about the destination.
Some people set their goals too short or they feel that they can't influence any part of the process. It was L. Frank Baum who wrote, "If you don't know where you're going, any road will take you there." The same is true for anything you want to achieve.
Part of my advice to other heart patients is to create their own stories. We have the benefit of learning from others on this site and it's great, but the danger is predisposing yourself to ways of thinking that may create perceived barriers to achieving your own goal. I see this in business all the time - the energetic new hire quickly has the wind taken out of his sails by someone who can't wait to tell him "exactly how it is around here." I'm sure you have also encountered people who want to tell you every horror story and medical procedure gone wrong when you mention you're having surgery. While they may think they're being helpful, their feedback can be counterproductive.
Does positive imagery alone work? Can you create the result you want by simply imagining it? No, not all the time, but don't underestimate the power of the mind, either. What you can do, is keep focused on your goal, move through or around barriers as they reveal themselves, and keep looking ahead. When we concentrate on where we want to go, the path to getting there is clear. You will instinctively take deliberate and purposeful steps.
I would also be remiss by failing to mention that I am a Christian and I do believe that we are also guided by our faith and our beliefs in this process. All of our experiences as individuals shape the way we approach our lives and the curves in our paths.
I hope this long message helps someone out there. I will leave you with another favorite quote for anyone who is still on the fence about what's ahead:
"Resisting change doesn't recapture the past, it loses the future."

I'm curious why some of us left the hospital on multiple prescriptions, including metoprolol, while others are released to wait and see if anything's required. Do some surgeons prophylactically prescribe these meds to prevent afib or other complications? Why don't they all do it? Is there a downside to taking these meds in the short-term? Are there issues when they're discontinued?

I didn't want to do it, but I am switching cardiologists. I'm at the end of my rope, I have been waiting over 5 weeks to get the results from my last echocardiogram. I was put on two medications back in February to improve my post op ejection fraction. I have no way to know if they have been effective without this information. I've called the office three times - assured that I would receive a call back, but, to no avail. I really liked my cardiologist, but I can't live with his response time (assuming he ever calls me back). My new doc's office is calling to get my records transferred, so I probably will hear from him, today.

I am in a far less demanding profession and I have never made anyone wait that long for a return call - not ever!

Do you think cardiologists lose their enthusiasm to treat patients after surgery? Let's face it - there's not much money to be made for maintenance appointments.

I have a question about health insurance coverage. I see many people traveling to many of the top hospitals and surgeons across the country. Are you covered by plans from your employer or purchasing private health insurance that permit treatment anywhere in the country? Is anyone opting to pay for their treatment outside of their medical coverage? I was fortunate that my plan allowed me to go to my surgeon of choice, but Mt. Sinai, Cleveland Clinic, etc. were not options under my plan. I don't want to be too intrusive, but I'm curious if you're willing to share.

I just saw a posting about this medical device. It's currently marketed directly to EMS and Fire personnel. Does anyone have any experience with this product. I'm considering fund raising to provide one to my local ambulance association. It's not currently sold to consumers.
https://youtu.be/PlxzaQdo1fM

Question to my fellow mitral valve repair and replacement friends - were you told that your ejection fraction decreased after surgery? Were you placed on a beta blocker and/or ace inhibitor to facilitate heart remodeling? If so, how long did you take them?