bicuspid support

[kmc]

Hi, I am scheduled for ascending aortic aneurysm repair and possible valve replacement on July 7 in Los Angeles. I am scared. I hope to save my bicuspid valve because it has minimal regurgitation; the doctor is going to make a game day decision. If it is replaced he is going to put in a bovine valve. Does anyone have a bovine valve? How does it work? Has your life style changed? Has anyone undergone this or similar surgery and kept their bicuspid valve? How long is it supposed to last? There seems to be a lot of knowledgeable people on this web site.

How long does it take to be pain free after the surgery? When do you get a full night?s sleep? When can you ride a bike? Golf? Swim? I realize every one is different but it makes me feel better to hear from people who have been through this. There is certainly a bond among us bicuspids and other OHS survivors. (or soon to be survivors in my case).

Kevin

 

[KAJ]

Kevin,

My biscupid valve was replaced and an ascending aortic aneurysm repaired. I did not have a choice, my valve had to be replaced or I would eventually suffer the consquences. Because of my past history, my surgeon said that mechanical valve was the only way to go.

As far as the pain goes, with the exception of some chest muscle soreness, I basically was pain free about 4 or 5 weeks after surgery. My surgery was this past March. Despite having some major complications 5 days after surgery, I believe (and I credit God) that my recovery has been very good. I went back to work in 6 weeks. Last week I started cardiac rehab. If your insurance can pay for it, or you can afford to pay for it yourself, I strongly recommend it (with your cardiologist's approval of course). It is rather intense but is certainly a confidence builder . For 3 times a week, an hour a time, I use the tread for 20 min, and various of bike machines for about 8 minutes on each bike. Tomorrow they start me on the rowing machine. My rehab is in the morning but by end of the day, I have very little energy left. Bottom line, I think is well worth the effort.

Last but not least, sleep. It has only been within the past 3 weeks or so that I finally started to sleep through or least almost through the night. It took at least 6 weeks before I could sleep comfortably on my back.

Please keep us posted throughout the process.

 

[Phyllis]

Dick has a bovine valve and 1 1/2 years post op is doing great. He was walking 3 miles at 6 weeks, riding a bike and swimming at 8 weeks and back to tennis doubles and golf at 3 months. Although 70 at the time of the surgery, he was a very athletic and active 70 and he is right back at it now. His only difficulty was back pain from the way they spread you out in the OR and had difficulty sleeping for about 7 weeks, but massages and Tylenol PM helped. He has the Edwards Magna bovine valve and they are predicting 15-20 years- hopefully that will be true. As you search this forum, you will find many threads on types of valves, preparation for surgery and post-surgery. Best wishes to you and please post with any questions you may have. There is always someone here to lend a hand.

 

[CCRN]

Bicuspid buddy

Bicuspid buddy

Hi, I am scheduled for ascending aortic aneurysm repair and possible valve replacement on July 7 in Los Angeles. I am scared. I hope to save my bicuspid valve because it has minimal regurgitation; the doctor is going to make a game day decision. If it is replaced he is going to put in a bovine valve. Does anyone have a bovine valve? How does it work? Has your life style changed? Has anyone undergone this or similar surgery and kept their bicuspid valve? How long is it supposed to last? There seems to be a lot of knowledgeable people on this web site.

How long does it take to be pain free after the surgery? When do you get a full night?s sleep? When can you ride a bike? Golf? Swim? I realize every one is different but it makes me feel better to hear from people who have been through this. There is certainly a bond among us bicuspids and other OHS survivors. (or soon to be survivors in my case).

Kevin

I had the same surgery 4 weeks ago. I took my pain meds pretty religiously for a couple of weeks and now just when I feel crappy and can't shake it off. I'm still a little slow and find if I do too much my body tells me by going into a mini coma for several hours. I only had a one time event with really bad pain and it was relieved...eventually. (This won't happen to you. I was allergic to the originally prescribed med and there was a communication problem.) I have been told not to do much more than walk around before my post op appt on July 15. I would LOVE to ride my bike. I biked to work before my surgeon put a stop to it. However, it takes 8-12 weeks for your sternum to heal and you don't want to do anything to mess that up. It's like starting all over again if you do. It's kind of weird........after surgery your body kind of takes over and shows you who the real boss is.....just when you just think you can control yourself, your body takes control from you and ya just have to go with it until it decides to let you take the helm again. That's the best I can explain it. You're going to be fine. When you think about the 5-6% risk due to the aneurysm alone and having the surgery by a skilled surgeon with a calculated risk of 2% or less, your odds of having the surgery are actually better than living without it. Don't let this scare you. Well, being scared is just normalcy. I don't play golf so I can't help you there and I only had sleeping problems until I went off the Dilaudid and on Mepergan for pain. I was told no swimming as well. No one can predict how long the valve will last. Some people live their entire lives without having problems with their bicuspid valve. I wanted a pig valve bad but, after the discovery of my aneurysm, my surgeon told me he didn't want to have to go back into my chest again and I concurred. There's a great risk of bleeding with redo sternotomies. If you're very healthy with no other risk factors it's an option and your age is also a factor. You need to be aware of this and discuss it with your surgeon. I was up to it but my surgeon made the call and I believe he made the right choice for me. We did have some mighty lively debates over the choice before that fat boy was found in my chest. It's nice to have choices......makes you feel in control of something you really have no control over. The control thing was an issue for me. Hope this helps.

 

[T-Money]

Hi KMC,
I had the aneurysm repair with a dacron tube and had a mechanical valve put in. I'm 32 and decided to do mechanical to minimize my risk of re-op. I am very happy with my surgery and, minus a few hurdles, feel that my recovery has not been too bad. I hope all goes well.

 

[Mary]

I had my aortic valve replaced with a bovine about 3 weeks ago. I've been sleeping very well at night for the past 10 days. The pain is minimal at this point. I find that I might take one extra strength Tylenol at bedtime because I'm stiff in my chest area. Otherwise, I'm not taking anything either to sleep or for pain.

The only med I'm taking is 325 mg enteric coated aspirin once a day.

I'm a swimmer, and I expect to find out when I visit the surgeon in two weeks how long until I can resume. Concerning golf, Pam Osse's husband is a golf pro, so she could tell you how long he was unable to play.

It's a tough surgery, but I've come through it very well (knock on wood). I have fewer concerns about undergoing another OHS now, than I did beforehand.

 

[mmarshall]

read some of my post surgery threads...personally...what i went through was not bad at all. one thing you might want to do though. i had my cath taken out and the incision tube removed before they took me out of icu the next day. talking to the surgeons office...one of them recommended that i bring a pair of pajammas and flip flops (open toe if possible...you will be wearing socks). once the cath is out and they stand you up...the nurses will help you put on your pajammas. you are going to be walking the halls the next day once you are in your room. it is just a comfort thing to be able to have you pj's and slippers walking down the hall. although if you like everyone checking out your back side...then flash em' all...lol

 

[coryp]

Hi, I am scheduled for ascending aortic aneurysm repair and possible valve replacement on July 7 in Los Angeles. I am scared. I hope to save my bicuspid valve because it has minimal regurgitation; the doctor is going to make a game day decision. If it is replaced he is going to put in a bovine valve. Does anyone have a bovine valve? How does it work? Has your life style changed? Has anyone undergone this or similar surgery and kept their bicuspid valve? How long is it supposed to last? There seems to be a lot of knowledgeable people on this web site.

How long does it take to be pain free after the surgery? When do you get a full night?s sleep? When can you ride a bike? Golf? Swim? I realize every one is different but it makes me feel better to hear from people who have been through this. There is certainly a bond among us bicuspids and other OHS survivors. (or soon to be survivors in my case).

Kevin

I just had surgery 6-7 in Los Angeles (Cedars Sinai) and am recovering just fine. I am 34 and had a bovine valve put in, as well as root remodel, ascending aneurysm reapair and hemi-arch. Valve seems ok and I jsut went for my first post op MRI today (awaiting results for healing confirmation).

I went with the Bovine valve for various reasons but my Dr. felt it was bes for someone with tissue disorder like me. They give the valve 15-20 yrs (less in young people).3 weeks post-op and I cannot sleep through the night (this is probably the worst thing) and a little pain, but mostly the shoulders back and upper triceps. Chest is not that painful. No golfing and swimming for at least 8 weeks, not sure about the bike.

Who is your surgeon?

 

[kmc]

kmc's wife

kmc's wife

This is Julie, Kevin's wife. Thank you everyone for your stories. They are helping us to plan for next week. Cory, we have the same surgeon you did. In, fact, we were in his office for our preop visit while you were in the hospital. We were so relieved to find a Dr. who knew something about this, especially after some discouraging consults in Seattle. Kevin calls Dr. R his "zen master".
We are having a huge send-off party at our house on Friday, and then we fly to LA Monday am. I think the stress of the party is a good thing because it is distracting both of us as the one-week countdown begins. I'll take my laptop to LA and keep you posted!!!

 

[kmc]

thank you

thank you

Thank you every one for your responses. It really helps to hear from other people who have gone through this. I appreciate your support. Things are crazy trying to get ready for surgery. We're having a party. I almost have my work situation figured out, thanks to cell phones and email. I am lost on the valve question but hoping to keep my original equipment because I was told by my surgeon that I have a "beautiful bicuspid valve" just like the CBS logo. Yeepee.

Kevin