pulmonary valve surgery

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
S

sauergk

Hello! This is my first posting & I'm very new to all of this. I was hoping to have some feedback regarding my condition. You see, I had cardiac surgery as an infant to open up my pulmonary valve. I am 41 yrs old & have always been healthy, plenty of energy. As far as I was concerned I was healed. At the urging of my parents to check on my heart "just as a precaution" I spoke to my dr who suggested an echocardiogram. That got the ball rolling...a ball I never saw coming. The cardiologist told me that I have atrial septal defect (whole in my heart), a tricuspid leak & I found out later that my pulmonary valve has to be replaced (when they openned up the valve they created a leak). I was also born w/an enlarged heart. The right side is significantly larger then my left. I was told to have surgery by this summer to fix the tricuspid leak, close the whole & replace the pulmonary valve in hopes to decrease the size of my heart. It has all come as a shock. Whatever feedback, advice, prayers are all so very appreciated. Also, what am I facing prior to and especially after surgery. I am married & have 2 younger children so I am especially concerned, because of them, with getting through all of this well & as quickly as possible. Thanks sooo much! Linda
 
Hi Linda and welcome.

It is indeed a shock to hear you need heart sugery when you feel good and do not have symptoms. However, it is better to have things fixed when you feel good so you are lucky this was identified early on before any more damage can be done.

Heart surgery is no picnic but it is very common and the chance of anything going wrong is so slight (usually 1-2%). You will be unable to work or drive for about 6 weeks and it will probably be 6 months to a year before you really feel like OHS is a distant memory.

You have come to the right place for guidance and support.
 
Atlanta Sweetheart

Atlanta Sweetheart

Linda,

My son was born with Tetralogy of Fallot, a hole in his ventricular septum and his pulmonary artery was too narrow. The hole and the pulmonary artery were corrected when he was 22 months old. In correcting his pulmonary artery, the valve no longer worked. He never had a problem until he was 28 years old and had moved to Colorado and skiied at high altitudes. He had a pulmonary valve replacement with a bovine valve. He is doing very well, there are no restrictions on his activities. His surgery took about six hours, mainly due to previous scar tissue. The actual vavle repair was about probably just over an hour. He was in the hospital for four days and back to work at 8 weeks. He is back to skiing with more energy than ever. It is amazing that you've gone so long without symptoms. He was short of breath and fatigued by the time he had surgery. After surgery his heart was back to normal size within 6 months. It is always a shock to find out one has problems, but I am sure your repairs will go well. I was shocked to find out it was time to repair my mitral valve this summer, I had no symptoms that I knew of, but now I feel better than I have felt in years. Good luck to you!
 
Dear Linda,

I was born with tetralogy of fallot and I turned 40 this year. I had surgery at 6 weeks and at 6 years of age. I had a pulmonary valve placement with a cadavar valve when I was 25. It has been 15 years and so far there have been no problems. My next cardio appt is in 3-4 weeks so I am starting to get a little nervous. I was back to work and my usual state of health within 8weeks of the the surgery.

It was also a shock to me when I was told that I needed surgery again. I was in the cath lab 3 weeks after the cardio appt and was having surgery 6 weeks after the cath.

You will definitely need help after surgery. Your energy levels with be low for a little while and you will have lifting restrictions for about 8-12 weeks and won't be able to drive for about 4 weeks. Feel free to ask as many questions as you like. Or you can always private message any of us also.

There is also another website you may be interested in. www.achaheart.org
I am also active on that site.

Where are you planning to have the surgery? How old are your children?

Debbie
 
Hi Linda and welcome to the forum. Hearing you need to have open heart surgery is never a fun day! I was shocked too when I found out about my pending surgery. I'm only 4 weeks post-op but I will tell you that for me the hardest part was waiting the 8 weeks or so that I had before surgery. The apprehension and nervousness was really bad. I'm 45 and in reasonable health. I keep telling everyone that it wasn't nearly as bad as I had imagined. There isn't much pain (more like soreness and aches) and recovery has been smooth. I would expect you too will have a smooth recovery. Find yourself a great surgeon and facility and learn all you can about what they plan to do to you. This is a great place to learn and ask questions and the internet has all the info you could want. I'll add you to my prayers and keep us informed of what's happening!
 
Hi Linda, My 17 yo son was born w/ a different set of CHDs but he just got a pulm valve in May. I would suggest making sure you cardiologist and surgeon specialize in adults w/ chds, there hearts are just so different then adult that need CABGs ect, Lyn www.caringbridge.org/nj/justinw
ps Justin was out of the hospital in 4 days and can't believe how much better he feeels, he didn't realize till after his last surgery (his 4th) how tired he was before it,
 
***As far as I was concerned I was healed. At the urging of my parents to check on my heart "just as a precaution"

You are very lucky your parents had the insight to push you along! The PC's are now finding that adult patients who were *fixed* and discharged as children should have been followed through life as many are experiencing problems now.

I agree with Lyn 100%, find a Cardiologist/Surgeon that specialze in Adult CHD. Where do you live? There are several great ACHD clinics.
 
pulmonary valve

pulmonary valve

Hi Linda,
My 15 1/2 year old daughter is having her pulmonary valve placed on Dec. 6th. She too had her valve opened and a hole as well. The hole was repaired during her 1st surgery. They told me she could go years and years without her pulmonary valve like into her 30's or 40's so it came as quite a shock this Aug when they told us it was time. But with new technology (MRI) they can determine when this is necessary better than than before. Before the MRI's they told us we would know by her declining activity level and shortness of breath. Erika has neither. But after comparing the MRI from last year there is significant change. So I am grateful that they were able to determine that before there was irreversible damage! I am so glad you got check out too! Please let me know what you decide to do and how you are doing.

Judie
 
Just wanted to wish you luck, at least you know now and consentrate on getting fixed and recovering Paula x
 
Back
Top