Miriam's Journal

A big thank you to Adam for his interview with Dr. Johnston regarding radiation heart disease. It was so informative and addressed some really important issues regarding the presentation of heart disease in patients like me and the best treatment approaches. Well done!

Hi everyone. I was hoping to get some input about my Afib. I developed Afib after my surgery (replacement of mitral and aortic valves, repair of tricuspid, aortoplasty), which was 5 months ago. I've taken metoprolol since then for rate control but it hasn't worked. Just did a 3 day Holter monitor and it showed I was in Afib 100% of the time so my cardiologist referred me to an electrophysiologist. This doctor prescribed Amiodarone and has also scheduled a cardioversion. I had no idea I was in constant Afib as I feel pretty good. I have radiation heart disease and my surgeon said the constant Afib is not unusual in radiation patients. I've heard about some negative side efffects from Amiodarone and was hoping to hear about anyone's experience with this medication. Also, if anyone has had persistent Afib and how it was treated. Thanks!!

About three days after I got home from Cleveland, I was hospitalized with Covid pneumonia and spent 5 days in the hospital. I was treated with steroids and Remdesivir. I couldn't take Paxlovid because I'm on coumadin but what I was given worked and I'm much,much better. Now I can concentrate on recovering from my valve surgery and moving forward with rehab. It's been a long journey but there have been many helpers along the way, especially at this site. It's deeply appreciated!

Hello everyone! I'm sorry for the long "radio silence" but my recent surgery had a number of complications that kept me from posting. On September 19, I had my aortic and mitral valves replaced along with a tricuspid valve repair and repair of my aorta at the Cleveland Clinic. I was in the ICU for a week because of unstable A-fib, which was eventually brought under control with an external pacing device. I was then moved to the step-down unit and started on coumadin and was discharged from there after five days. I had issues, too, with significant pleural effusions, which were expected because of my radiation heart disease, which were drained in the step-down unit. I also had a mini stroke and several TIAs while there. After discharge on October 3rd, we returned to our hotel room and about 12 hours later, I had a major stroke. I was taken by the Cleveland Clinic EMTS to the emergency department, where they quickly diagnosed the stroke and did an emergency thrombectomy. It was kind of amazing. They used a catheter in my leg artery and went all the way up into the brain and pulled out the clot. I am forever grateful to them for their prompt and expert care. They managed to control the damage although I do have some significant deficits. After 2 days in the neuro Icu and 5 days on neuro step-down, I was transferred to a Cleveland Clinic rehab hospital, where I spent 7 days and was discharged yesterday. My husband and I drove for 7 hours yesterday from Cleveland to Virginia. My husband is truly a super-star and my hero! We are so grateful to be home! I will now continue my rehab as home care and my local hospital has an excellent home care service. I hope everyone is well

I wanted to thank Adam and all of the kind souls for your advice and support in my journey to figure out what to do about my heart issues. I traveled to Boston for a consult with the adult survivorship clinic at Dana-Farber and saw a brilliant cardio-oncologist who told me the Cleveland Clinic is really the only place to have the surgery I need done. I went to Cleveland last week for testing and am scheduled for the commando operation on Sept. 19th with Dr. Michael Tong. Dr. Tong spent a lot of time with me and he is a very kind and thoughtful person. He's so intelligent and was so open with me that I have complete confidence in him and the support I will get at the Clinic. Dr. Tong will replace the mitral and aortic valves with tissue valves, repair the tricuspid, and replace the fibrous skeleton of the heart. Thank you all again, I would have really faltered without this site. I'll keep you all posted!

I've just returned from my consult with the Cleveland Clinic and the conclusions by the doctors there were not positive. I'm a poor candidate for surgery and surprisingly, not a candidate for TAVR. The damage from the radiation treatment is bad and the other issue of the surgery being a re-do of a median sternotomy done for a tumor biopsy years ago plus my age. They have suggested a "commando" operation where they would replace the aortic and mitral valve and repair the tricuspid valve. The surgery also involves replacing the fibrous skeleton of the heart. It's a 6 hour surgery with a 2 to 3 week hospital stay and probably going home with pleural drains. It's very risky, with a high mortality rate. The Cleveland Clinic was very good and very thorough but I'm questioning the value of going through with this because of the quality of life issues after the surgery. Thanks you for listening, I just needed to unburden.

I'm planning on trying to get into the Cleveland Clinic for evaluation and surgery for my heart valve issues. I was diagnosed with Hodgkin Lymphoma after biopsy of a mediastinal mass through a median sternotomy and treated with radiation to the thoracic cavity followed by chemotherapy. I have severe aortic regurgitation, severe tricuspid regurgitations, and moderate to severe mitral regurgitation so this will be a complicated surgery because of the past median sternotomy and radiation. I also have moderate pulmonary hypertension. For those of you who have been to the Cleveland Clinic, did any of you need long term accomodations for you and your family? What did you do and where did you stay? Also, for anyone who has had something similar, were there any centers that you thought were good if you didn't used the Cleveland Clinic? I am so appreciative of any help anyone can give.