- Dec 29, 2008
- formerly Atlanta, GA.
A little late but thought I would share my experience… I was diagnosed withBAV at 37, was monitored yearly and had an ON-X valve via minimally invasive (3 inch scar. Center chest) at age 47. I was only in the hospital 3 days post surgery…10 years later I would make the same choices and have no regrets. I do not limit any of my activities because of warfarin.. I just make sure I stay in range. I home monitor INR with no issues I take low dose.30 year old BAV patient with mild to moderate regurgitation here. I have been dealing with extreme anxiety towards my heart, hoping some of you wonderful people can help.
1. The Ross Procedure ….
2. My understanding is that TAVR ….
3. Are there any encouraging studies or stories from your cardio about life expectancy? …..r
could really use some positivity on this one,
As I read your questions it brought back so many memories…here are some learning…
1. anxiety… I worried so much I gave my self symptoms… chest pains mostly and usually around the time of my annual cardiologist visit… that can happen! Try not to worry so much…there has never been a better time in history to have so many valve repair options. BAV is common .. doctors have lots of time and opportunity to perfect their technique.
2. Don’t listen to horror stories about warfarin… i found it really is easily manageable and not a big deal if you are a good pill taker and do home testing every weekour two. And you can have greens. I eat salad every day! Dose the diet!
3 . Your are researching options early… how awesome it is you have lots of time to do this. . It your surgery is 10 plus years out there will be new advances. At the time of my surgery the onx valve was the latest. Ibrtyou will have better options. I wanted a Ross procedure too, but am now glad I went with the Mav option.
4. It sounds like you like knowing the details… Learn to read your annual echo reports… monitor av diameter and pressure gradients if you have aortic stenosis My valve diameter was 1.1 diameter when diagnosed and was stable 10 years. Then it narrowed to .7 quickly. They will likely do surgery when it gets less than 1 . You will notice it in your recovery time when exercising.
5. When it is time for surgery… interview at least 2 surgeons at different hospitals…try to find one experienced in whatever repair option you want/need. Surgeons need to be good “mechanics”…don’t be put off if they don’t have great bedside manner. I found a surgeon experienced with the onx valve (difficult at the time) and minimally invasive at a hospital specializing in heart surgery. He made no promises on incision size but he gave me the smallest incision he had done at the time.
Good luck and try not to stress while you wait.