Coarctation Repair looking for someone who has had it done.

[haley1298]

Hi, this is my second post on here. My husband age 40, has severe coractation of the descending aorta. He has a fifty percent pinch, along with mitrol valve prolapes. Both leaflets are floppy so he has mild mirol valve regurgatation. Some mild leakiness of the tricuspid valve. He was sent for more tests to Mayo Clinic. We meet with the Congenital Cardiologist yesterday and with everything on computers now a day we actually got to see his aorta in 3-D. We obviously saw the coarctation right away as it is so severe. He has several blood vessels that have grown from his upper aorta to by pass the pinch and down into the descending aorta to help the blood flow. He will be having heart surgery to cut the pinch out and put the two ends back together on Sept. 22. They could barley feel any lower pulses in him at all. The blood pressure in his legs barly reach 100 so it is pretty severe and they told us without surgery his mortality rate is not good at all. We are pretty scared and worried, but waiting the next two weeks I think is going to be a bit hard. We have two daughters, one is 6 the other is 3 so we are trying to get them ready for him to be gone for a week or so. Has anyone had any of these procedures at such an older age as it is caught in most pediatrics???

 

[PJmomrunner]

Hi Haley:

I'm glad you are trying again to seek out someone who has had a coarctation repair. Maybe a west coast valver will respond tonight, but if that doesn't happen, make sure you post to the thread again to keep it in the "new posts," okay?

Best wishes,

P. J.

 

[Paul_R]

My coarctation was repaired when I was 7 years old, also by end to end anastomosis. By todays standard that is considered pretty late as well. I know your husband is 40 but I believe many of the issues are still the same. I am 41 years old know and the repair is still trouble free.

I can tell you Coarctation repair was among the first congenital heart defects that surgeons learned how to repair. Mine was repaired in 1971. So the repair methods have been well tested.

You may want to ask your cardiologist if your husband also has a bicuspid aortic valve as well, because they frequently are a coexisting defect in people with coarctations.

People with repaired coarctation will have to have their blood pressure closely monitored for the rest of their lives and have yearly echos done of the coarc repair to watch for anurysims and disections.

I hope this has been of some help.

 

[haley1298]

Thank you.

Thank you.

Yes your post has put my mind in a better place... It is hard to believe that it was never caught up to this point. Heck had my husband not mentioned his two heart murmors to his cartiologist at our medical staff here they would have sent him home and we still wouldn't have known. I have been pushing for four years now to find out what was going on with him, but over the last six months since his last ER trip I have been pushing non stop, now look who looks stupid.... The medical staff here thought I was lossing my mind but I knew there was something wrong. Now we are going to Mayo Clinic and St. Marys in Rochester MN and they just laugh when they read the notes from our clinic! I do feel better knowing the surgery is the same, it is just that he is lucky to have not passed from this by his age. Thank you so much for putting it into perspective for me!

Thanks

 

[sam]

Coarctation repair

Coarctation repair

I was 23 when my COA was discovered.I had surgery 6mo later and now I am 42. The best advice I can give you is to help you prepare for when you get home from the Hospital. The most important thing you can have is a nice comfortable recliner. I was not able to sleep in my bed for a few wesks. Get yourself a few nice fluffy pillows , it helps to souround yourself with pilllows. And have whomever is bringing you home from the Hospital bring those pillows with them for the car ride home. Every bump you hit you will feel. Hold a pillow between your arms and you chest. It might be a good ideaar to have someone keep the kids for you for a few days after you get home. When you are able to sleep you want to stay asleep, when you are sleepin time and pain go away faster. when you walk carry that pillow inbetween you arms and you chest. Everyday it will get better , I will not try and fool you it is not always fun times, but you dont worry about the pain and discomfort like you are now, you deal with it the best you can and soon everything will be back to whatever normal is..LOL

 

[Heather Fisher]

I had mine repaired when I was 4 years old. That was in 1960. My dad had his repaired in his 20's before I was born. Since his surgery was done in the 1940's it has been around for a long time. It's a good thing you have discovered the coartation now and are going to have it taken care of. Good luck, your girls will do fine. I do remember my dad having surgery for an aneursm of the aorta when I was 8 and my sister was 10. Just explain to them what is going on and they will be able to handle it.

Heather

 

[inlaguna]

I had my coarc repair in the early 70's. I have had Dacron in me for 30+ years. They mentioned on other posts.....but higher blood pressure tends to be more of an issue with this defect even after surgery.

I will also echo the comments about the bicuspid aortic valve. Often coarc and bicuspid valves are common together. Got some more Dacron and a Bovine valve put in about ten months ago as a result of this relationship......and an anuersym.

Get lots of information and make informed decisions. Good luck.


Dan

 

[Mama2Rylan]

I had my coartation repaired when I was a few months old and hadn't had any problems with it up until now. I just had open heart surgery a few weeks ago, and was told that they need to do some repairs on my coarctation (having the coarctation fixed when at a young age, often times it does not "grow" with your body) I also have a bicuspid aortic valve which needed work on as well....Well with the surgery over, and a procedure that wasnt really planned on, everything is working out ok for me. As for your husband, I would really stress that he find out everything that might possibly be wrong with his heart before the surgery. With heart defects, alot of times there is more then just one thing that can be affected. I mean I learned when I was 10 that I had scoliosis (curvature of the spine) and that was linked with my heart defects. Bottom line is to try and learn everything you can...Don't worry, we will all be here praying for you and your family

 

[haley1298]

Thank you.

Thank you.

I had my coartation repaired when I was a few months old and hadn't had any problems with it up until now. I just had open heart surgery a few weeks ago, and was told that they need to do some repairs on my coarctation (having the coarctation fixed when at a young age, often times it does not "grow" with your body) I also have a bicuspid aortic valve which needed work on as well....Well with the surgery over, and a procedure that wasnt really planned on, everything is working out ok for me. As for your husband, I would really stress that he find out everything that might possibly be wrong with his heart before the surgery. With heart defects, alot of times there is more then just one thing that can be affected. I mean I learned when I was 10 that I had scoliosis (curvature of the spine) and that was linked with my heart defects. Bottom line is to try and learn everything you can...Don't worry, we will all be here praying for you and your family

Thank you so much! We appreciate the prayers and we will keep good thoughts in mind for your future and your family! The surgery is the day after tomorrow...... It is coming up soooooooooo fast. It is nice to have a site like this to come to and read what everyone has to say on all issues. It has helped me gain strength and I thank everyone on this site for that! We do know he has other issues with his heart but his bicuspids valve they say is good. He has some mitral prolapse with regurgatation, his heart is enlarged onthe top left side, his chest x ray shows the notching of coaractation, but I still have lots to learn and I am learning something new just about everyday. I love him so much that I try to be as educated as I can!