About ten years ago, docs detected a heart murmur and sent me for a doppler echocardiogram. It revealed aortic valve stenosis. I had another doppler echo three years ago, and there was no change. I got a case of cellulitis six weeks ago, spent a week in the hospital with IV antibiotics, and came home with shortness of breath, that my home care nurse detected. Saw my GP in follow up and he ordered another doppler echo. Unfortunately, this time, the condition has worsened. Back when I first was diagnosed, I did a little research, and they were replacing valves with pig valves. Now, modern science has advanced, and perhaps I won’t need a porcine valve, but either way, the thought of heart surgery is terrifying. Anyone have any experience with this condition, this surgery? Would love any feedback. And of course, prayers.
My uncle had this done last year. Surgery went very well and recovery was fast (for him, don’t know if that’s usually the case). He was 79, and had been long diagnosed and knew the surgery was coming at some point in his future.
My daughter has a functioning bicupid aortic valve and some stenosis. This has been monitored since birth and at some point in the future, she will need valve replacement. Probably in her 40’s.
The advancements in medical technology during my D’s 20 years has been amazing. Yes, I agree that heart surgery is especially frightening. I would want a surgeon well experienced in valve replacement. Prayers for you during this stressful time!
I had open heart surgery to repair a congenital defect – atrial septal defect – many many many years ago (1978). That was no fun. However, my understanding is that now a valve can be replaced through a relatively small incision, resulting in virtually none of the unpleasantness I experienced.
I was horribly anxious about my surgery between the time it was scheduled and the time it took place (two months), and I vowed that if I ever needed something like that again, I’d try to have the surgery immediately so I’d have less time to brood!
My advice is for you to find out if you need the surgery, find out your options, and – once you know what you’re going to do – have it done as soon as you can. Also make sure you have the surgery at a hospital that does lots and lots and lots of these. Travel to a major metropolitan area if necessary.
I don’t think I’m telling you anything that you wouldn’t figure out on your own.
ETA: This is a fairly routine surgery that is performed frequently. Assuming you have an experienced surgeon, I don’t think you have to worry about the outcome being a positive one.
Hugs, @Montegut
Prayers of course. Feel free to come here to vent and seek support. Cardiologists are amazingly talented doctors. Think positive and prep well for the road ahead.
DH’s favorite aunt had this condition and had heart valve surgery done ten years ago. It was the best thing for her. Her quality of life has improved dramatically, she began walking as part of the recovery physical therapy but she kept at it, and she now walks 5 miles every day. She is now in her early 70’s (but she will only admit to being 39!)
Yes, surgery can be scary, but it not only can save a life, in her words, it gave her new life.
Sending best wishes and positive thoughts to you.
I am sorry you are going through this. My Dad had heart valve replacement surgery about 5 years ago. I guess he was 79 or 80? It was very scary for all of us. But he did beautifully. He was determined to get back on his feet quickly and he did. As @3puppies said, it really improved his quality of life. He has always been an active, outdoorsy guy but had really slowed down and would have died by now without the surgery. He contemplated not having it, but I know he is very glad for these extra years.
It sounds like it has not impacted your life much until now so it is shocking to now have to contemplate the surgery. I think if my Dad would have one piece of advice it would be not to put it off until you feel crappy. Best wishes for a positive outcome!
A good friend of mine had a history situation similar to yours, Montegut. She had valve replacement in her 60s. Was home from work for about a month, and feels great. She has since retired, spends lots of time doing stuff with her grandkids and traveling to many cool places with her son and other friends.
If a second opinion would give you some reassurance, I’d say do it. Please keep us updated we can continue to send thoughts and prayers your way.
If you need heart valve replacement, there are several options as described at
http://www.heart.org/HEARTORG/Conditions/More/HeartValveProblemsandDisease/Options-for-Heart-Valve-Replacement_UCM_450816_Article.jsp
I’m so sorry for the worry. My oldest son has AVS by having a bicuspid rather than a tricuspid valve and more than likely will need a valve eventually. We do, in fact, have a friend who had this valve replaced many, many years ago and thrived. He did great. You will be in my thoughts.
I really think I have read recently about valve replacements being done way less invasively than before. I hope for you what I read was correct.
My husband is scheduled for an aortic valve replacement three weeks from today. The leaking valve was discovered a year ago when he needed a cardiovert for his afib. At that time it was minor and they were just going to watch it. One year later, his heart was out of rhythm again and the valve was graded 4+ which means no more waiting and watching, must have surgery. His surgery will be complicated by his emphysema.
Forty years ago, my younger sister had her first of four surgeries to replace valves. I remember her being in the hospital for weeks. I also remember the remarkable change in her life when her heart was repaired. I am holding on to the hope that techniques have improved even more over those forty years and that even with H’s other health complications, the surgeon is experienced and qualified. He will probably be in ICU an extra day and might need to be in in-patient rehab for a few days due to his lungs, but by summer he should be outdoors overseeing our yard help and by next fall will have enough energy for a cruise. My job is to keep him calm and focused on the benefits. Good luck to you, Montegut.
@lotsofquests: I am eager to hear how today’s surgery compares with that of forty years ago. I am sure there are lots of differences. As I mentioned above (Post #2), I had open heart surgery 39 years ago, and it wasn’t a whole heck of a lot of fun.
Good luck to your husband.
Prayers for your husband, @lotsofquests. My main symptom has been shortness of breath, and I did a peak flow meter, which registered half what it should be, at the doc’s office, and today, I did a pulmonary function test. Whoo, that was tiring. So I am worried that my lungs may be involved, even though they sound good and I am a swimmer. I am happy to hear your husband’s surgery is scheduled three weeks from now. I am scared they’ll put me in, and I’ll die on the table, not having had a chance to put my affairs in order. Although I am anxious to get back to work to make up for the time I lost while in the hospital for cellulitis, I am not going to push myself unreasonably, but I need to earn a little money before a lengthy rehab sits me out again. The respiratory tech who did my test today was surprised that I had never seen a cardiologist, Monday will be my first visit, since the aortic valve stenosis was discovered almost ten years ago. Thank you for all your advice and especially your prayers. I will keep y’all posted and let you know what the cardiologist says Monday.
Montegut, the day that my husband had his catheterization, they brought him back to the room and told him they wanted to do a few more tests. Almost before he knew what was happening, he had major surgery scheduled for the next week. We asked a bunch of questions, scheduled an appointment to meet the surgeon, and went home and discussed what was happening. When he met the surgeon, he asked if he could delay. The surgeon let him schedule it 8 weeks from the day he met him. My husband, like you, had things he wanted to do before such major surgery and rehab.
He is making fairly good use of the time. He has gone to the gym to use the treadmill at least 3 times each week. Besides trying to strengthen his lungs, the PA also told him to eat a good diet with lots of protein. He has a nurse come to the house once a week for his lung treatment (his emphysema is a genetic condition) which is reassuring to me; the nurse will alert the doctor if his condition starts to deteriorate.
I am not a dr. but I think the shortness of breath is because your heart is not pumping the oxygenated blood efficiently. My sister also had shortness of breath and I don’t think her lungs were ever a problem. My husband, of course, is a whole different story.
I will keep you in my prayers and will share more information if you like since we are a few steps ahead of you in the process.
Thank you, lotsofquests. My pulsoximeter readings are 97 percent, so I thought I was getting good oxygenated blood. We’ll see what the doctor says Monday. Prayers for you and your husband as well.
I was born with a bicuspid valve and had my aortic valve replaced 7 years ago at age 57. The surgery was not as horrible as I feared, but it’s a very serious surgery with a substantial recovery period (I was out of work for 11 weeks; could not drive for 6, which at first is because of drugs/weakness but then because they don’t want you hit in the chest by the airbag if there’s an accident, so you’re instructed to ride in the back seat for 6 weeks postsurgery.) Depending upon where you live and access to a major medical center, you might want to travel for your surgery. I had mine at the Cleveland Clinic and it was an amazing experience. My cardiologist told me that it’s the place he’d have heart surgery if he needed it. But there are a number of excellent places around the country where you will get the most up-to-date treatment. (For example, if I had my surgery at our local hospital, they would have opened my entire rib cage; my incision at CCF was 4 inches.)
I will PM you.
89 year old mother in law recently diagnosed with leaky valve ( don’t know which one) she is also resisting going to a cardiologist as recommended by family dr after having echo done).
Wish you success with your options @montegut.
Open heart surgery isn’t always necessary. Inquire about whether transcatheter aortic valve replacement (TAVR) is an option. It isn’t done everywhere, so you might have to go to another hospital.
Depending on where you live, there are a number of excellent cardiac places. I know I’ve heard of HI folks traveling to Stanford and Cleveland Clinic for their cardiac issues and surgeries. Even our local hospital does quite a few cardiac procedures and surgeries.
TAVR is only an option for those not able to withstand regular surgery and have decreased quality of life. SouthJersey, this option is one reason your MIL should get to a cardiologist.
Monegut, I’m sorry you are faced with this. Cardiac issues can be like that, one visit and suddenly life as you know it is massively changed with a new diagnosis. It is overwhelming to contemplate at this point, but there is the promise of increased exercise tolerance with recovery as a motivator. Hugs.