My surgery is exactly one month from today and I can’t wait! I have been very symptomatic for over a year now & it took that long to figure out my diagnosis, ...Read more
My surgery is exactly one month from today and I can’t wait! I have been very symptomatic for over a year now & it took that long to figure out my diagnosis, Malignant arrhymetic bileaflet mitral valve prolapse syndrome (the rare deadly kind)
I had surgery in July to implant a pacemaker & another surgery in November to replace it with a defibrillator. The defibrillator is needed to protect me from going into cardiac arrest, but it does not relieve the symptoms.
AntiArrhythmic medications would help the symptoms but I have a prolong QT interval & those medications could put me into cardiac arrest so I can not take them.
I am thrilled that I found a surgeon who will operate on my valves. He believes fixing my leaking valves will not only fix my valves, but it will fix my electrical issues & symptoms as well.
Counting down the days to an inmproved quality of life ❤️
Gina Fiorentino Hi Suzanne, I am certainly wishing you a very good and uneventful month ahead during your surgery co ... Read more
Gina Fiorentino 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!
Susan Roberts Wow you have been on quite a journey, glad you are on the countdown to your surgery!
Steve Farthing Hi Suzanne, Will your doc be able to repair your mitral valve (not replace)?
Wanda Mroz I hope all goes well for you. I had a mitral. Alive repair two and a half years ago. I did not howe ... Read more
Wanda Mroz I hope all goes well for you. I had a mitral. Alive repair two and a half years ago. I did not however have all the other issues. Prayers and healing thoughts! ♥️🙏🏻
Suzanne Mazzarella Hi Gina,
Thank you for the well wishes. We will be recuperating from our successful surgeries togethe ... Read more
Suzanne Mazzarella Hi Gina,
Thank you for the well wishes. We will be recuperating from our successful surgeries together! 😁
Suzanne Mazzarella Thank you Susan!
May you have a successful surgery as well 🙂
Suzanne Mazzarella Hi Steve,
The surgeon said that my valves are 100% repairable so I am happy about that😁
Suzanne Mazzarella Hi Wanda,
Thank you for the prayers & healing thoughts. I saw that you had mvp & tricuspid repair li ... Read more
Suzanne Mazzarella Hi Wanda,
Thank you for the prayers & healing thoughts. I saw that you had mvp & tricuspid repair like I am going to have.
Good to see how well you have recovered!
❤️
Hi!
Today I just had a consultation with another surgeon and I am now scheduled for a mitral valve repair, tricuspid valve repair, left atrial apendage closure ...Read more
Hi!
Today I just had a consultation with another surgeon and I am now scheduled for a mitral valve repair, tricuspid valve repair, left atrial apendage closure and ablation surgery for next month!
I am still letting the news sink in.
I am fine with the actual surgery, just a bit nervous about the recovery.
Any suggestions that might be helpful during recovery? ❤️
Joey Hardee Hi Suzanne! I am still waiting for my surgery so I do not have any words of wisdom for recovery but t ... Read more
Joey Hardee 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! :-)
Bonnie Stone-Hope Hi Suzanne,
Totally agree with your thoughts. The surgery was not an issue for me, since I had nothi ... Read more
Bonnie Stone-Hope 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.
paula Murphy hi I had my surgery 5 years ago! There are 3 things that I found really helpful. A claw for in the h ... Read more
paula Murphy 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.
Civita Fahey I found that having some kind of pillow to sleep at night like a wedge or body pillow really helped. ... Read more
Civita Fahey 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.
Marie Myers I rented an electric recliner for a month. It made it easy for me to get up by myself. After a month, ... Read more
Marie Myers I rented an electric recliner for a month. It made it easy for me to get up by myself. After a month, I was feeling much better, and went back to sleeping in bed.
Barbara Wood Hi Suzanne, I had the mitral repair, the appendage closure & a maze ( ablation) 8 months ago. The wed ... Read more
Barbara Wood 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!
Toni Z Hi, I’m on week 3 of recovery so front zip sports bra helped, non scented baby body wash per doctor ... Read more
Toni Z 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.
Suzanne Mazzarella Thank you all so much for the helpful suggestions and personal experiences!!!
As I read each one of y ... Read more
Suzanne Mazzarella Thank you all so much for the helpful suggestions and personal experiences!!!
As I read each one of your posts, it made me feel less nervous.
You all did such an amazing job recovering that it gives me hope. Thank you again ❤️
Thank you for the well wishes. We will be recuperating from our successful surgeries togethe ... Read more
Thank you for the well wishes. We will be recuperating from our successful surgeries together! 😁
May you have a successful surgery as well 🙂
The surgeon said that my valves are 100% repairable so I am happy about that😁
Thank you for the prayers & healing thoughts. I saw that you had mvp & tricuspid repair li ... Read more
Thank you for the prayers & healing thoughts. I saw that you had mvp & tricuspid repair like I am going to have.
Good to see how well you have recovered!
❤️