Tracy's Journal

We are so fortunate that our valves are fixable in this day and age. I am also grateful to this site at which we can receive and give support to each other. Almost 20 months post Mitral repair and doing great. Running is my passion. It took months for me to run distances that I was used to- I think I’m finally there. My pace is slower but I still can run. ♥️🏃🏻‍♀️ For the runners in recovery, you’ll get there with lots of patience.

Just wanted to share something with the group. No matter where you are in your journey- the planning stages, hospital, newly recovering or months/years out........ Take a look at this site for tips and encouragement! You. Just. Don’t. Quit !!!! You do what is required for you to have a better heart and better YOU! That’s what WILL get you through all the bad days that lead to those great ones that keep us out there, alive, well and regaining a new normal. ❤️

Today, I am 18 months post Mitral Valve Repair. I am currently sitting in J5, at Cleveland Clinic for my every 6 month follow up Cardiologist appt due to Mitral Regurgitation. Even though I feel great, 4 weeks from running a marathon, the anxiety is real. What if the echo showed increaswe in a leak, etc., what if the metabolic stress test appears different. What if.......???????? Here’s the thing..... focusing on the what ifs doesn’t change the discussion I will soon have with Dr, Phelan. I have a marathon and life to live....... I’ll update later.

1 year ago today, I began cardiac rehab. I was terrified, not feeling good, weak and barely handled 5 min on the readmill at a speed of 2. If it wasn’t for Beth, my nurse, I probably would never have returned. I remember sobbing to her explaining I used to run. She encouraged me to work hard and never give up. I did just that. Although it’s been a rocky year, I did my best to not let doctor visits, days I just needed to rest, unexpected hospital stay, and now on the 6 month watch list for regurg, etc, to not consume my mind. I’ve learned over the last several months to trust your after care medical team, just like we trusted our surgical team as they worked their skilled minds/hands to fix our valves. Today, one year post cardiac rehab, I jogged 12 miles. Live without fear- live each day. That’s the best gift to give yourself.

Adam, thank you for creating this site. For all the past ♥️warriors and soon to be ♥️warriors, thank you for being so supportive and understanding, in our world of ♥️ valves. Never give up, or stop searching for answers that will help you be the person of great health you deserve. This Christmas, hang on to those precious moments; they are such special gifts. Whether you are fully recovered, on the couch recovering, in the hospital or awaiting surgery, Merry Christmas to all of you. God bless you all. #togetherstrongertogether ❤️

Yesterday I had a 2pm follow up recurrent pericarditis appt. I was called back, nurse took my BP, did it again (we all know “that” face), said just a second, returns with the my doctor and 2 others. checks it, I hear her say 189/80 (My BP typically is 105 ish/60-70ish). EKG Machine comes in, I am feeling fine, the quick procedure begins and I start to feel clammy, room spinning and about ready to pass out, telling myself breathe, breathe, breathe. Out of no where, it feels as if someone is stabbing me in the front and back of head. I’m trying not to make a scene, but can’t help it, out of this world pain. That is about the last thing I remember. 3 hours later, the doctor and my husband are trying to walk me out. I’m sobbing, can’t hold my self up, no idea where I am, my husband brings me home. From Day 1, just a bit over a year ago from Mitral Valve Repair, I have followed instructions of my medical team, been patient, etc. My doctor 💯 % believed I needed to go form her office to hospital via ambulance. I asked her please don’t make me. My husband was begging me and I said no over and over and over (during the brief moment I was coherent). After we arrived home, on a Friday night, without me knowing, my doctor text my husband multiple times over the course of 4 hours, my husband asked if I wanted to read the texts. I started to sob, my husband was scared beyond belief, my doctor sick with concern. All this taking place while I was in/out of sleeping , most often confused, scared all while dealing with head pain, chest pain, etc. In my ♥️, I absolutely knew I should have go as my husband, in the sweetest caring way begged me to go to the hospital. This pain episode is a repeat that landed me in the hospital for 3 days. This time I’m not sure what came over me as i refused to be evaluated.. My 😇 doctor is not booting me off her patient list, she is speaking with my ♥️ Med team on Monday and help get to the bottom of this. For the most part, all the warriors in this group have had their own share of battles. Im sharing because sometimes, it isn’t “just” about the patient!, this case, ME. After all I’ve gone through this past year, now is NOT the time to give up!!!! For those beginning the recovery journey, please remember not to refuse medical help when you absolutely know it’s needed; don’t allow fear to get in the way.

I am just shy of 1 year Mitral Valve Repair. Today, I had the 2 week follow up from my recent hospital admission (recurrent pericarditis) with my cardiologist. I’m guessing he’s been practicing for 25+ years. I’m his first patient ever that has had recurrent pericarditis. He is at a loss as why it happened again. He stated the ekg in hospital showed elevated ST Segment and Early Repolarization, which is an indicator of pericarditis. I’ll continue on the current med treatment and follow up in 6 weeks. He’s frustrated as I’m “one of his healthiest patients with a recovery of many setbacks”. We hope for improvement in 6 weeks or he’ll go to plan B. I asked the cardiologist about “ the annular ring that “was not seen” on the recent echo while in the hospital. He states it’s still there, the tech wasn’t looking for it . (I hope 🤪) Despite it all, I continue to keep my head up and walk forward with strength and faith. Setbacks only make us stronger along the way of life.

In February 2018, 3 months post op, Mitral repair, I was diagnosed with pericarditis. It took about 2 months to feel better. Last week, 11 months post op, the pericarditis returned. I was in an incredible amount of pain, the cardiologist admitted me to the hospital for 2.5 days. While there, I had an echo. I see my cardiologist for a follow up in a week. Today, the echo was released in the patient portal. The report states: “Previous noted annular support ring not present as noted on previous reports.” I am very confused as all other (5) post op reports noted the ring. Does anyone have thoughts on the report? Thank you in advance.

Thank you Adam for the interviews you shared with us from the Heart Summit. Dr Bolling made a comment- When I see patients for a follow up after Mitral Valve Repair, I send them off with “Bye, have a great life” (or something similar). That statement really hit home for me. I am 11 months post op Mitral Valve Repair, removal of growth. 3 months ago, through echo and follow up TEE, it was determined I have mild to moderate regurgitation. My local cardiologist, whom I very pleased with, stated my body did not accept the repair as it should. At this point, my heart Is functioning perfectly and my LV is within normal range. Of course I am frustrated. While I’m grateful the tumor was noticed and removed, I’m frustrated to now have regurgitation. I know some people live with regurgitatation for many years. I am on a watchful waiting every 6 months. I’m very type A- I want to speak with my surgeon to hear what insights he has. I have not made an appointment yet as I don’t want to appear “overly crazy 😜 “. However, making an appointment continues to pop into my head. After listening to the Summit videos, making an appt is definitely in the forefront of my mind.

I had a follow up echo, 9 months post op Mitral Valve Repair. I learned last week that I have moderate Mitral Valve Regurgitaton. I head to the Cleveland Clinic at the end of the month for a TEE and metabolic stress test. I’m now putting some “signs” together that I was thinking were “normal”. The fatigue and exercise exhaustion has gone through the roof over the last month. Anyone else have a quick onset of symptoms with regurgitation. If you are reading this and have/had moderate Mitral Valve Regurgitation, understanding each case is different, I’d appreciate your insight.

I am 9 months post op, removal of fibroelastoma, Mitral Valve Repair. I am an endurance athlete and decided to be safe and send my records to Cleveland Clinic for a Cardiac Sports Dr to look over. Today, I received a call that the doctor has looked over my records and would like me to come in for a consultation, spend the night as it’s quite possible a TEE is warranted. Of course I will go for the appointment as I believe a 2nd opinion is important even if post op, but gosh, the suggestion of a TEE threw me off a quite a bit. I’ve had one before, it’s not the procedure that bothers me, it’s the unsettling feeling as to why it’s suggested. I’m awaiting a call back as I’d like to know what information was gathered to suggest the possibility of a TEE. Thank you for listening.