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 Suzanne! I am still waiting for my surgery so I do not have any words of wisdom for recovery but there is a wealth of knowledge "in the room". Many have been through some complex surgeries and are doing fantastic. I will pray for you now that your surgery goes smoothly and you recover quickly and get back to an active life as soon as you can! Godspeed! :-)

Hi Suzanne, Totally agree with your thoughts. The surgery was not an issue for me, since I had nothing to do but show up! That is the surgeon's work. The recovery is our part, so read as much as you can, and get your home prepared to come home. Prepared meals, frozen in advance, comfortable sleeping arrangement, ( I needed to have my head elevated for the first while). I found Adam's book very helpful as it mentioned things like how it is helpful to have jar lids loosened, etc. One of the must helpful ideas that a friend had was to come over and wash/dry my hair in the kitchen sink when I first came home. Hope this helps.

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.

I found that having some kind of pillow to sleep at night like a wedge or body pillow really helped. I am not a back sleeper so I wasn't getting any sleep, but then I saw on this site that a body pillow helped and I was able to at least move slightly to the side and get some sleep. Resting is important as well as moving around as much as you can.. If you can walk every day it will do wonders. Again, at your pace.. even if is 10 minutes every few hours.. take it at your own pace. I was feeling that I wasn't doing enough after reading posts from obviously much more athletic people than me during recovery and I was getting exhausted. You will need some help in the first few weeks, exhaustion was my biggest issue, but every day gets better and before you know it you will be back to yourself again. .Best of luck with surgery sending prayers your way.

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 on week 3 of recovery so front zip sports bra helped, non scented baby body wash per doctor, and I also cut my hair short to help. Also since you can't shower while in the hospital, I had dry shampoo to use. I was in for 7 days without washing my hair :(. It felt so nice to shower when I got home. I also brought my own PJs to wear fot the last few days. Short sleeve and front buttons. I got tired of the hospital gown. Hope this helps.

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 🙂

Welcome to the community! How frightening to be told that you have a rare condition that could kill you and then that you can't get the surgery yet, especially in a place like NYC. I hope you get the information and assistance you need, so that you can get back to living a full life again.

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.