mara's Journal

Thankfully I have been on colchicine 2x a day and forced myself to take it easy and have been symptom free for almost 2 weeks. I am going to wean off the medicine and fingers crossed that will be the end of that awful journey!

I’m dealing with pericarditis which I didn’t see coming. It’s very painful and really knocks you out. It went away and I picked up my pace exercise wise and then it came back. As I mentioned in other posts I never saw this coming. Just thought I was on a straight path to healing. It’s hard to sleep or get comfortable so I’m also exhausted and definitely bummed. Has anyone else experienced this?

At 5 weeks I suddenly did not feel well. It hurt to take deep breaths. Ended up in the closest emergency room Memorial Day weekend. They did a catscan and chest X-ray and found some fluid around my heart. Also my heart rate was high. I had caught a nasty chest cold from kids I’m sure that didn’t help. Some Advil and a lot of rest and I felt better. Now it’s a week later and I feel it on the other side. Also achy and tired again. A bit bummed because I thought my recovery was going so well! I guess it’s definitely an up and down process. Anyone else experience any of this?

Even though friends and family are so supportive what a gift it has been to have this community. It has been very helpful sharing this crazy ❤️ Journey with other heart warriors. Thanks Adam for creating such an informative and vibrant place for us to connect.

Had my preop checkup today and all is well. My heart looked strong and I don't have symptoms making it hard to accept that my surgery is in 2 weeks. I am having minimally invasive mitral valve repair on April 16th at NYU Langone. The waiting and overthinking is very stressful. I am ready to have this whole thing in the rear view mirror. Anyone have the minimally invasive surgery? How was the recovery?

I thought I posted in my journal before but I guess not, not sure where I posted lol. Anyway just posting for the first time. I am just trying to make sense of all of this. I have severe mitral valve regurgitation and have begun to accept the fact that I will have surgery possibly in the fall. I am in information gathering mode now so I can make the best decisions for best out come possible!! I am also trying to live in the now or otherwise I think this would just consume my thoughts 24/7 if I allowed it to. That would be sad because I still want to try and enjoy life as always. I imagine there will be plenty of time to stress as the actual surgery date is set and becomes a reality. I am trying to only think positive and healing thoughts but there's no doubt it can be a challenge. Anyway that's what I've got to share for now to be continued

Hi this is my first post on this website. I am not sure how to add photos but will try eventually :-)) Anyway I have been on a watch and wait scenario with my mitral valve prolapse, but it then worsened to having severe regurgitation. Still on the twice a year echo schedule and nothing has changed. I am very active and have danced my whole life. I still take class 4-5 days a week and do some performing and teaching. I know that I will have to deal with my valve problem at some point and decided to have a surgical consult. At this meeting I was told I should probably do the surgery within the next 6 months. I definitely did not see that coming and just thought at some point in the future I will have to deal with this. I just never thought of it as too big a deal because that's how my cardiologists represented it. Now of course with this latest development I got really freaked out and know I have many decisions to make. Such as when is there ever a good day for this? Which hospital, which doctor and which procedure. Now I am in information gathering mode and then will make my decisions. I will be college searching with my 3rd child next week who is a highschooler. If there was anyway I could heal this through the power of my mind body and spirit I sure would give it my all. The thought of all of this is overwhelming. I've now allowed myself roughly a 1/2 hour a day to obsess, discuss, research or whatever else I need to do on this topic. I just took an awesome vacation to kind of regroup, clear my head and take some deep breaths. I like to think of it as plastic surgery for my heart valve I actually read that somewhere didn't make it up. Until next time.....