new to the list and so many questions.....help

[heartweave]

I am new to the forum. I was recently told I need to have an AVR soon. How soon is still up in the air but sometime this year. I am totally freaked out. I have had lots of major surgeries but none to my heart. I think the fact that I have had so many surgeries is complicating the issue for me. For the last 3 years I have had a major surgery each year. The biggest was 13 years ago when I jumped from a burning building and shatter my spine and pelvis. I had an 16 hour spinal fusion spent 3 months in the hospital, 6 months in a body brace and 2 years in a wheelchair. I was told I would never walk again but my peripheral nerves began healing and I am blessed with ambulation. I have overcome stage 4 breast cancer with radiation to the left side which will probably complicate the AVR. I also have lost over 200 lbs and exercise daily.

Here are some questions as I embark on this next step....

Did everyone have symptoms prior to the AVR? I have a bisupid with 0.7cm stenosis. I am 57 years old, 146 lbs. I am tired but assumed this was from chemo and getting older. Last year after the 8 hour spinal surgery I did not recover well. They are now saying it is because of my heart. My new cardio said he WOULD HAVE NEVER AUTHORIZED THE SURGERY because of my stenosis.

Next question....how long was your surgery? I am looking at the minimally invasive approach with bio valve. It is still all up in the air but this is the working plan. The surgeon said it would be about 2 to 2.5 hour but is this correct? How long were you in bypass? Complications?

I want to get at least one more opinion. Does anyone have suggestions for surgeons in Northern California. I have been with Vincent Gaudiani who comes very highly recommended.

I have watched several surgeries on You Tube.

What was the recovery like? Hospital stay and afterwards? Is it feasible to have the surgery and travel in 2 months? I am planning a trip in June and am getting married in July. I can either have the surgery in February or March or wait until September. I am not sure it is worth the risk in waiting.

My surgeon said I need to psychologically get ready for the surgery. How does one do that? I have had 6 major surgeries and I am really not in the mood to spend another half a year coming back....on the other hand.....I don't have a choice.....

How do you get ready?

Any insight would be so greatly appreciated.....

Thanks for listening....

xoxo
Leah

 

[Paleowoman]

Hi Leah,

I am just about to undergo AVR for bicuspid aortic valve - in two weeks time. I can't answer some of your questions for obvious reasons but I'll try the others.

My valve area size when last measured in November was 0.9, my pressure gradient 68 mm/Hg and my ejection fraction 79%. I'm just 60 and very fit, 110 lbs, never overweight. I have several other health problems. The cardiac surgeon told me when she saw me on November 11th that surgery would be 3 to 4 hours, that is with "minimally invasive" surgery for what it's worth, i.e. it's a sternotomy which is not as long a cut as a full sternotomy, but the heart and lungs are stopped just the same, I can't see the diference between it and full sternotomy apart from the length of the cut ! I'm having a bio valve too. The surgeon was very uncommunicative, depsite being the top cardiac surgeon in my area, plus she tried to scare me into having surgery sooner than I'm having it by telling me I could go into left ventricular failure anytime or get my heart suddenly stop ! My main emotions at first were that a) I didn't want surgery right now and b) I was annoyed with the surgeon for trying to scare me and not answering my questions properly. Since then I have spoken several times to my cardiologist and GP. I'm now ready psychologically to have surgery.That took about five weeks to happen. I would think everyone is different to how they adjust to this as it was definitely a matter of 'adjusting' to what's going to happen. I have no symptoms of stenosis and I feel extremely well physically which made it hard to accept that the time for surgery was now, but I appreciate that it's best to have this surgery before symptoms develop.

Finding out about this surgery, talking to other medical professionals, asking questions on this forum and getting insight from others, all those things, plus time, have helped me adjust psychologically. At first I was also given lorzepam to help with anxiety but that actually caused a bad rebound effect even though I was only taking a very small dose (half a mg) - so cutting that was very good once the rebound effects stopped.

PS - I knew I had bicuspid aortic valve when I was 25 and was having regular echos over the past seven years, but none of that prepared me for when I was told that now was the time for surgery.

 

[enkaynj]

Hi Leah,
Focus on the post-op future that you will have and everything you go through now will become very bearable.
I would not watch any videos of the operation before or after the surgery. I started watching one on you tube but it made me more anxious than ever. So I stopped watching those. Sometimes, ignorance IS indeed bliss.
I can assure you (as would most of the others on this site) that life becomes easier after a valve replacement surgery whether you go tissue or mechanical.
Pick a good surgeon based on some research and leave everything in his/her hands so you can be stress free. Instead focus on taking care of things that you can control for ex: getting your personal finances etc in order before the surgery. Not to scare you, but I for instance, went to a professional photographer and had a few family portraits taken.
Hope this helps.

 

[Paleowoman]

I would not watch any videos of the operation before or after the surgery. I started watching one on you tube but it made me more anxious than ever. So I stopped watching those. Sometimes, ignorance IS indeed bliss.

I think it depends on the patent. Some patients like yourself, for example, don't want to know the details and for them ignorance is bliss, but for others, myself, for example, ignorance generates anxiety of mega proportions ! My surgeon said to me when I asked her some questions about surgery "leave the technicalities to me" and wouldn't answer my questions. This made me highly anxious because I wanted answers - I watched a Youtube video of surgery and one of my questions which had been really preying on my mind was answered in a few minutes ! (I actually found the video more fascinating than I could have ever imagined). Then I asked a cardiac surgeon on a cardiac surgery website some other questions, and I asked questions here, and then I got more details from a cardiologist friend ! The more I found out the less anxious I have become But it all depends on the patient !

 

[enkaynj]

Anne, I agree, it is a personal choice.

 

[Sten Osis]

Did everyone have symptoms prior to the AVR?

I had shortness of breath and angina, which I thought was gas or indigestion. I thought I was just out of shape and the angina ("indigestion") always went away if I just kept riding (cyclist). The doc said that the heart
will compensate and then eventually give up.

Next question....how long was your surgery? I am looking at the minimally invasive approach with bio valve. It is still all up in the air but this is the working plan. The surgeon said it would be about 2 to 2.5 hour but is this correct? How long were you in bypass? Complications?

I had the full sternotomy and a mechanical valve to replace a severely stenotic aortic valve. The entire thing was about 3 hours with about 20 minutes on the heart/lung machine. The amount of elapsed time meant nothing to me, but it did for my wife and mother, who were waiting for me. Somebody on this forum said that it was like being awake and then being awake again. He was right. I got all prepped and then got wheeled into the surgery. I remember saying, "Wow, there's a lot of lights in here". Then, I was waking up with a tube in my throat.

What was the recovery like? Hospital stay and afterwards? Is it feasible to have the surgery and travel in 2 months? I am planning a trip in June and am getting married in July. I can either have the surgery in February or March or wait until September. I am not sure it is worth the risk in waiting.

For me the recovery was easy. I was in the hospital for four days. The nurses were great! Everyone was really nice to me and now I look back on it thinking that it was not at all a negative experience. The second day home I began walking and within 2 weeks I was up to 5 miles/day. You should be able to travel, depending on your surgeon and cardiologist's instructions.
Two months after my surgery, I was allowed to do anything except lift over 20lbs. and ride the bike. The heart heals quite fast. The sternum takes more time.

How do you get ready?

Once I was diagnosed and got a firm second opinion, I asked my surgeon if I could get it done within a week. He laughed and said he'd see what he could do. I was scheduled out 18 days from that date. They called me that afternoon
and said that could get it done in eight days. I jumped on it. That gave me less time to obsess over it and made me feel like I had some control.

Then the big day comes. You get to the hospital and simply hand yourself over to the experts. They know what they're doing and you have to trust them. Once you do that, it's easy. Just go with the flow and all of a sudden you'll be in recovery.

 

[Marcia58]

leah,

i had a mitral repair via a mini thoracotomy. i was under the care of anesthesia from 6:30-2:30, but that included prep and recovery time. Travel? i live in indiana and had my surgery in late march. in late august, i flew to portland, oregon ALONE. in october, my husband and i flew to hawaii, where i climbed diamondhead and went parasailing!

i vote "don't wait"!

 

[Ovie]

The wait for the surgery (4 months) was worse then the actual surgery for me. The anxiety was awful. It's hard to say don't get stressed over it, because I'd be a hypocrite. Also with all your previous surgeries I can see the intimidation factor. I was having issues breathing, I was a smoker and partied hard ( I was 25 when I had my surgery, I'm now 27 ) and in awful shape going into surgery, but after the first day or 2 it's pretty crazy how much better you feel then you'd imagine considering your heart was just cut into.

I also watched YouTube videos on AVR surgeries, and to be honest had no issue with it, I wanted to know what was going to be done to me and saw it as more educational, however I know people who refuse to watch them, even after their surgery is done and they've recovered.

I wish you the best of luck, I'd say get it done sooner then later, be confident in your surgeon, and just know that it has to happen, for the better and hopefully this can be the end to having to continue to consistently have surgery.

Another thing, you sound like a very strong person..to be honest if you survived not being able to walk and in a wheelchair with thinking you'd never walk again, AND having breast cancer, this should be a walk in the park!

Good luck and hope to hear a good outcome.

 

[Jkm7]

I think it depends on the patent. Some patients like yourself, for example, don't want to know the details and for them ignorance is bliss, but for others, myself, for example, ignorance generates anxiety of mega proportions ! My surgeon said to me when I asked her some questions about surgery "leave the technicalities to me" and wouldn't answer my questions. This made me highly anxious because I wanted answers - I watched a Youtube video of surgery and one of my questions which had been really preying on my mind was answered in a few minutes ! (I actually found the video more fascinating than I could have ever imagined). Then I asked a cardiac surgeon on a cardiac surgery website some other questions, and I asked questions here, and then I got more details from a cardiologist friend ! The more I found out the less anxious I have become But it all depends on the patient !

Would you share with us the name of the cardiac surgery website, Please?

I would like to visit there.
Thank you.

 

[Paleowoman]

Would you share with us the name of the cardiac surgery website, Please?

I would like to visit there.
Thank you.

It's a UK website so I'm not sure they would answer your questions, but here's the website: http://www.scts.org/patients/default.aspx I also asked a question on the Cleveland Clinic's website enquiry form here: http://my.clevelandclinic.org/webcontact/WebMail.aspx That's American so they're more likely to respond.

 

[Ragnar]

Hi Leah,
I'm three weeks post-op and abt 10 yrs younger. I can say that this procedure was much easier than the knee surgeries.

I can't yet talk abt the symptoms.

Easy to say; difficult to believe - the waiting is the hardest part. The worst part abt recovery for me, so far & all things considered, is that I am not allowed to drive a car.