Dee Siverhus - Heart Valve Journal

My Journal

2154 days ago

Well, This diagnosis is getting real! It seems so weird. I have known I have MV Prolapse since my early 20's. Never any symptoms. Then dx was upgraded to murmer ...Read more

Well, This diagnosis is getting real! It seems so weird. I have known I have MV Prolapse since my early 20's. Never any symptoms. Then dx was upgraded to murmer about 10-12 yrs ago, still no symptoms. About 3 months ago I started experiencing some SOB and eye crossing- like double vision I could not control. I went back to my cardiologist that I had not seen in 3 years. Now my Murmur condition is classified as severe. ... So this starts the journey... I found Adam's book accidentally, I devoured it quickly. The weirdest thing is, I used to be an operating room nurse and surgical first assistant on the Cardiac service. I just never thought it would happen to me. I think perhaps I'm in shock or denial or something... Like Richard, I have had 2 surgical consultations and one more scheduled. I too am getting some mixed messages about approach and actually even if my valve is repairable. Apparently, I have thickened leaflets but not stenosis. One surgeon didn't even mention it, the other is debating going straight to replacement. By the way, I'm a young 55 years old skinny white female. (oops, sounds like a personal ad) My two newest concerns are how often does the first surgery not work? I've been reading about re-do's within a 12mo - 4yr time frame. I was hoping if I absolutely have to do this that I will be good to go for at least 12 years. Secondly, how many people develop Afib afterward that didn't have this issue before? So far the two surgeons I have seen are about 50-50 on Min Inv. Both said, the benefits don't really outweigh the risk. Still pending one more opinion.

Kelly Stoll Hi Dee. I met with a few surgeons and the results were very different. I'm 37 and had a 6" sternum OH ... Read more

Kelly Stoll Hi Dee. I met with a few surgeons and the results were very different. I'm 37 and had a 6" sternum OHS with valve replacement. The first surgeon actually mentioned 3 seperate surgeries based on my current condition, family history, and being a young female. Ha! That was a solid NO. The last surgeon I consulted with is the one we picked. I knew the moment he walked in, this was the right person for me. As my cardiologist said, you have to be able to trust the person doing the procedure. Best of luck to you with your search.

As for Afib, it happens in some but not all cases. I was told 50% chance, based on prior symptoms but so far, no issues. There are also some things they expect with younger patients, like rebound effect of you go on/come off of bp meds post-op.

Most of all, try to take it one day at a time. It can be overwhelming and a difficult journey at times. Hoping you find the answers you are seeking and all goes well for you as you continue forward.

Susan Lynn Hi, Dee! I had thickened leaflets, am also tall and thin, had a mini-thoracitomy 7 months ago - to ... Read more

Susan Lynn Hi, Dee! I had thickened leaflets, am also tall and thin, had a mini-thoracitomy 7 months ago - told my cardiologist and surgeon I was only doing this once. Three days in the hospital, no post op afib, and easy recovery. My surgeon was so confident he could repair my valve, we never even discussed replacement options. With your background, you're better versed than I, but do your homework and choose the surgeon and procedure that's right for you. Good luck!

Chris Purvis Hi Dee-I am not sure about the overall success rate but I’ve seen some on here post redo surgeries ... Read more

Chris Purvis Hi Dee-I am not sure about the overall success rate but I’ve seen some on here post redo surgeries for MV repair while others get by just fine. Hope you get some more posts about this so you understand the pros and cons. A Fib is totally differnent they say 40% experience it after surgery but watching the recoveries on this site I would wager that number is higher without a doubt. I was 8 days post op and it started..good news is they can treat it and you can move forward with your life once that has been done. I wouldn’t worry about that just yet though. Get your definitive answers on repair/replace and then move forward. A Fib is something you just have to be aware of during your recovery.

Carmel Robertson Hi Dee. I ended up seeing five specialists. The last three all agreed I could have a repair and the t ... Read more

Carmel Robertson Hi Dee. I ended up seeing five specialists. The last three all agreed I could have a repair and the two surgeons said if it was done properly it would last the rest of my life. I’m 62, have Barlow’s disease; the characteristics are thickened mitral leaflets and people are generally tall with low BMI. I had my surgery done minimally invasively by a very experienced surgeon. So far I have had an excellent outcome. I did have three bouts of Afib, none before surgery but five months on, I am on no medications and my heart is working just fine. I found the operation and recovery tough and it took all of four months to start feeling normal again.