Suzanne's Posts

Hi Suzanne, I am certainly wishing you a very good and uneventful month ahead during your surgery countdown! I am also counting down my days. My surgery is March 8th and I feeling a lot of emotions, but more and more I am looking forward to recovery from the MVP- as you are. Together, we will recuperate!

hi I had my surgery 5 years ago! There are 3 things that I found really helpful. A claw for in the hospital and at home i got mine at Lowe's. I didn't know enough to bring it to the hospital and if I dropped something I couldn't pick it up. Also antibacterial hand wipes!! About 8 packs. I ran out. Here is a funny story. I am very germ conscious especially in the hospital! Well it was really hard to get up for the antibacterial hand soap in the room so i thought I'll just put some in a cup. I put about three good pushes worth in the cup. Then a nurse came in to give me my medicine . She filled my cup and i washed the pills down only it was the cup with the soap and i drank it all. I was horrified - so my fault. And third buy yourself a recliner with a remote. Even the handle kind is not the best because you have to hand move it. I slept in it for two weeks!! And really recovery is not bad. Each day is better and it makes you feel so happy to be on the way up! when you walk it is so great. Five years later I remember it as a happy time. I definitely had a few scares but mostly just things I didn't understand. so just make your place to come home to so comfortable before you go.

Hi Suzanne, I had the mitral repair, the appendage closure & a maze ( ablation) 8 months ago. The wedge pillow, v neck tees & a husband willing to make me smoothies got me through the first few weeks! The first few weeks are tough, the fatigue mind boggling, but by 4 you'll feel pretty good, by 6-8, very good...it's all so doable!

Hi I’m Suzanne and am new to this site. Thank you for creating it! I just got back from the Mayo Clinic where I was diagnosed with “Maliginant Bileaflet Mitral Valve Prolapse Syndrome.” This form of Mitral Valve Prolaose is very rare and I was told that I can go into cardiac arrest at anytime so I will need 3 surgeries...1) Mitral valve repair or replacement, 2) Ablation to try and stop the PVC’s 3) Implantation of an ICD. My numbers are actually very good. 69% ejection fraction and only moderate registration, however I am extremely symptomatic, with PVC’s , ventricular couplets, bigeminy , a severely dilated Left Atrium and I am almost to the point of being bed ridden. I was implanted with a pacemaker on July 12th of this year because my heart rate was at 30 beats per minute & I was also put on a beta blocker. I never really felt any better and my doctors here in NY were not sure what to do with me. I saw a surgeon at NYU and one at Columbia and both said that because I do not have severe regiratatuon they would not do surgery on me. That is why I ended up going to the Mayo Clinic. I am young & used to be very active and would like to get some quality of life back. The cardiology team at Mayo is discussing my case and will be getting back to me this week with their plan. I would like to research surgeons that are extremely experienced with this type of mitral valve surgery, but I do not think any other surgeon will operate on me because my regiratatuon is not considered severe, however if any of them are aware of this rare MVP, they may change their mind. Is there anyone here that has also been diagnosed with Maliginant Bileaflet Mitral Valve Prolapse Syndrome or anyone that had surgery for moderate Mitral Valve Regiratation? Thank you and I wish you all much health and happiness as we travel through this journey together 🙂

Hi Suzanne. Welcome to the site. Biy, you've been given a tough pill to swallow. I hope you can get the help you need and can find a surgeon. I'm sure the Mayo clinic is a good choice and they will work to find answers for you. Please keep us updated on your progress.