My Story - Mitral Valve Stenosis

Cherie Dawn · Sep 29, 2014

I was 34 and trying to exercise to get in shape and loose this weight that I have been holding on too for 11 years. I felt out of breath, not a normal our of breath feeling that you feel when you are trying to work out and are out of breath from being out of shape. I went to the Doctor and explained this to them, she looked at me funny but decided to do an EKG, low and behold she says nothing wrong. A year goes by and I find another MD to go to and explain all my symptoms to her, she listens to my chest and keeps asking me if I smoke or are around smokers (never even tried smoking). She asked about my medical history and wanted to do an eko on my heart. TaDa!!!! She thinks I have MVS. Scared and not knowing what any of this means, I get an apt to see a Heart Dr. He scared the day lights out of me, mumbling to the eko tech about how sever my damage is in front of me with out even telling me what was going on. First thing out of his mouth was - Do you have family in SA or Houston? My husband and I looked at each other afraid and answered the Dr. Come to find out he wanted me to see a surgeon to see if I qualify for a balloon valvuloplasty. So we traveled to SA to see a specialist. I had the procedure done 08/2013. He felt good about work he completed but the damage is sever and we are unsure how long it will hold but would like me to hold out until I'm older to have a replacement. Last month I went to my DR for my last 6 month check to release me for a year and have been having worse symptoms. My symptoms are shortness of breath every time I move, when I am moving I get extremely Hot, no energy. The Dr. Checked me again and my score went from a 7 to a 14 my opening is getting smaller. Here I am 36 and I am scheduled for open heart surgery for October 10th 2014. Not sure what valve I am going to choose but I am leaning towards a mechanical since I am so young and would like to only have 1 open heart surgery.

I am a mother of 3! I work full time and only want the best for my family. I know I need the surgery to feel better so that I can get in to shape and be here for my family.

I am not nervous about the surgery but I am very nervous about the recovery. We will be traveling to SA which is 2 1/2 hours from my home. I think I will leave my children at home to keep there life un disturbed as possible. But I am debating on that too, not sure if I should take them or leave them - They say recovery in the hospital is 5-8 days, that's a long time for them to be away from school, my dad lives with us, so its not like they will be alone, but I have not decided what to do.

Does anyone have any good recommendations for the recovery at home and has anyone had to juggle the family while at the hospital?
Should I get a recliner? Should I get a potty seat for my toilet (mines low)

I am going crazy trying to get the house clean from top to bottom (even baseboards) so that I don't have to worry about anything when I return.

Just not sure what all to do, so far the post that I have read have been helpful, I am also looking for more post on post surgery story's of success!'

I know I have a tough road ahead, but I am ready to start feeling better! I need to be more active for me and my family.

Thank you for reading my story, I look forward to meeting new people, reading your story's and words or wisdom.

Cherie

tom in MO · Sep 30, 2014

Sorry about your failed repair. I did some good cleaning before hand as well. It's good therapy.

Per your questions, I'd leave the kids at home for most if not all of it. They will just be in the way and bored at the hospital. Maybe have them there for the operation and coming out of recovery, so they know you are OK but not for the whole week. Have them stay the weekend and go home the following Sunday? I don't know your kids, but my high school daughter wanted to go to school the day of my surgery. It's nice to have visitors, but "not for too long."

I had no need for a recliner. I sat in a chair and laid in bed. I also had no need for any type of toilet aid. Not in the hospital or at home.

Recovery time "depends." I had no complications and was initially told 3-5 days. However, my vitals were not "perfect" and my INR did not come up quick enough so they kept me for 7 days. The nurses led me to believe my surgeon was "cautious" and it was true. Twice the daily head surgeon told me I probably would go home, but my personal surgeon kept me there.

Good luck!

Cherie Dawn · Sep 30, 2014

Thank you for your advice, My daughter and I are close and shes wanting to be there, I am just cautious, I really don't want them to see me all 'jacked up". Since my surgery is on Friday I probably wont be feeling up to visitors until Saturday or Sunday. So I think that you are probably right, thought about setting them up on skype or something so that they can see me that evening or next day if I am up for it. Its nice to know that I may not need the seat or recliner....its just so uncertain of what will happen and what I will need after. Here's hoping for fast recovery. I have been seeing alot of post about following the doctors care on eating, walking and breathing.

How was your recovery at home? Tom? Is there any do's and don'ts you suggest?

Nupur · Oct 1, 2014

I have no specific advice. I am also pre surgery. I also plan to leave my son at home to travel to Cleveland from CA for surgery. Don't know how I will juggle everything! But I am sure everything will work out for you. Just wanted to wish you best of luck!

dornole · Oct 1, 2014

I had mitral stenosis at age 34 also, but better luck with the balloon so I have not done the replacement yet - so I can't help you with recovery from OHS. But even with the valvuloplasty, I know that my kids would have been creeped out to see me in the hospital (I had a Swan Ganz catheter coming out of my neck and looked like a cyborg). I think your idea of calling, or Skyping if you don't look too creepy is a good one. If your kids are old enough, I think involving them in helping get ready for your return (give them something to "do" at home - cards, flowers, baking) would be a nice way to let them show their concern and love. Mine were only 6 year old, 3 year old, and 18 months old so all they knew was they were mad I left without any notice. : ) I wish you a great outcome and smooth recovery.

Cherie Dawn · Oct 1, 2014

Thanks dornole! The advice and support from this site is amazing! Lets see if my kids will actually work together while im gone....will be a true test for them to work together! I wish you over 20 years before you need your replacement!