Susan's Journal

Just watched Open Heart on Netflix. All of you Dr. Eric Roselli heart warriors, you're in the company of another famous alum. Highly recommend watching it. Maybe Henrik will join our HVS community. ❤

New FDA-approved valve offers greater options for younger patients requiring future valve replacements.
 https://www.facebook.com/100064935241938/posts/pfbid02mjru8KgrLVtV1kppyBk1wM697hBp5QvdKwmi2a68U2byiJzHZ19XYSzC9DUUryEjl/?app=fbl

Question- Will an annulplasty ring set off an airport security alarm? I heard the beep and was 'randomly' selected for the body scan in both directions on my flight to/from California?

Every once in awhile, you meet someone who is truly special - today, my twin sister and I had the good fortune to meet two of those people! Our Sweet Ana and her beautiful daughter are simply amazing! We enjoyed every moment we spent in their company!!

Heart warriors - I value your opinions, so don't weigh your words.

My 95-year old aunt was admitted to the hospital for a low heart rate twice in the last few weeks. Two years ago, she was diagnosed with aortic and mitral stenosis. At that time, a different cardiologist thought she was too frail to recover from TAVR. Now, a new cardiologist has evaluated her, consulted with a surgical team, and wants her to have TAVR next week. The nurse said that her valve is the diameter of a pencil and that she is at risk for a mild or significant cardiac event or a stroke. Other than the fluctuating heart rate, she doesn't have any symptoms. She has some hired help at home to perform daily chores, but othetwise lives independently.

My aunt agreed to all of the pre-surgical tests. I'm going to get copies for another opinion or two.

She is of sound mind and will be making the final decision. But, she wants my opinion.

How old is too old for TAVR? I'm concerned about the urgency her doc has about performing this procedure so quickly. A medical professional may think there's only upside, but I'm not sure about that. Your thoughts, please.

Celebrated my 6th Anniversary (a little early) with a Florida vacation with my sister/OHS cheerleader! Wishing everyone from the Class of 2017 a very Happy Anniversary!
x6

Woo-hoo!  It's 5 years, today, since my mitral valve surgery!   Thank you,  Adam and the whole HVS community, for all of the great advice,  information,  support, and laughs!  

Happy Anniversary to the entire Class of 2017! ❤x5

Thanks to Adam and the heart warriors on this site who get us through the before, during, and after of heart valve surgery. Whoever needs to hear it, today - We see you and we understand.

A few years old, but still funny! Happy Valentine's Day Heart Warriors! ❤ https://abcnews.go.com/amp/Lifestyle/cardiologists-create-hilarious-heart-healthy-memes-celebrate-valentines/story?id=45400003

I heard from a friend who had heart surgery a few years ago. He asked me a question, but I couldn't answer it. He saw his pO2 arterial levels (on the patient portal) that were measured during his surgery. They were in the 300s, 400s, and 500s for nearly three consecutive hours and remained high (>100) for two days afterward. He thinks he may have been subjected to oxygen toxicity. Does anyone know if these numbers are too high for a patient on bypass? He still experiences shortness of breath and thinks it might be related to this prolonged elevation. Any feedback would be helpful.

Fellow Heart Warriors: I was placed on metoprolol succinate (extended release) about a month ago to address PACs. The good news is, my heart beat seems to have improved, but my blood pressure is increasing. Has anyone else had this experience or know why this could be happening? I'm experiencing the highest BP numbers I've ever had - systolic in the 140s and 150s and diastolic in the 90s and low 100s. Any insight would be greatly appreciated!

The Cleveland Clinic's latest alum. ❤ https://www.cleveland.com/healthfit/2020/10/arnold-schwarzenegger-tweets-from-cleveland-after-heart-procedure-at-cleveland-clinic.html

Good morning, Heart Warriors! As I mentioned a few weeks ago, I was required to wear a ZIO heart monitor for two weeks following an annual EKG showed PACs. Well, my monitor results showed: PACs - 12%, PVCs - 2.5%, and 8 brief episodes of tachycardia (that I didn't even feel). My cardiologist assured me that these issues can be common among mitral valve patients and, in hopes of preventing afib, he wants me to take Toprol XL (time released metoprolol - beta blocker) or a calcium blocker. A third option is to see an electrophysiologist, but it's still likely a prescription would be indicated. Since 2018, I've managed to remain off all medication. I didn't love metoprolol after surgery - I took it for nine months - but, I think it may be the lesser of all evils. When I did take it, I felt tired, had some intermittent lightheadedness, and just felt a bit "off". I initially blamed many of these symptoms on the surgery itself, but, looking back, I think it was the medication. Does anyone have an opinion or experience with a similar situation? Any advice would be greatly appreciated! I need to get back to my cardiologist with my decision next week.

Annual Cardiologist Visit Walked in expecting a short appointment and "See you next year!" -- but, my recent cardiologist's visit revealed my bp was 150/90 and my EKG showed PACs (premature atrial contractions). Both results are uncharacteristic for me! I have been under a ton of stress, lately, so I'm hoping that is the temporary cause. My doctor prescribed the Zio XT wireless heart monitor and it will be my latest fashion accessory for two weeks. Does anyone out there have any experience with this monitor? Any advice on using (and removing) it is greatly appreciated! Thank you!

Happy 14th Anniversary, Adam! Thank you for giving us access to excellent information and the support of incredible people. Your book and this site made all the difference for me in my heart journey as I know it did for others. We truly are lucky to have this resource and the commitment of countless medical professionals who gave us all our second chances. I wish you many, many decades of happiness and good health! ❤🍾🥂

Interesting study. I found out at an early age that I was allergic to penicillin. I've been taking fluoroquinolones for years. Adam - this might be a timely topic for the next newsletter. https://www.nytimes.com/2019/09/17/well/live/antibiotics-fluoroquinolones-cipro-levaquin-heart-valve-problems.html

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!

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?

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."