Susan's Journal

It's hard to believe, it's been 7 years since my surgery. Where does the time go? Congratulations to the Class of 2017! Celebrate today and everyday! x7

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?