new to forum need AVR

[heartweave]

I am new to the list. I would like to speak with others who have had AVR. I was diagnosed with bicuspid aortic valve 13 years ago as I was going into surgery for spinal fusion after jumping from a burning building. I was told it was something I would probably have to deal with in my 70's. I am now 57 and the time has come. My numbers are creeping up and my stenosis of 0.7cm with aneurysm 3.6. I have had multiple surgeries (not cardiac) over the last 13 years. 7 years ago I was diagnosed with stage 4 breast cancer left) and had radiation and chemotherapy. Has another else had radiation over the left side and if so did this complicate the surgery?


I have had one surgery or another every year for the last few years. Usually I bounce back right away but last year I had an 8 hour surgery(back)and did not do so well. I retained lots of fluid and had pressure over my chest, dizziness and fatigue. They put me on lasix and redid my stress echo. I decided to change cardiologists. My new cardio said he would NOT have authorized the surgery with my strenosis and that I would probably need an AVR within a year. I did finally begin to recover over the course of a few months and am now back to exercising 2 hours daily without symptoms except I poop out by evening. I have met with a great surgeon, Vincent Gaudiani. Has anyone worked with him? I am also getting a second opinion at Stanford. Dr. Gaudiana wanted to do the surgery in February or March but most important he said he wanted me to be psychologically ready for the surgery. What does that mean? What if I am not ever psychologically ready to have my heart stopped? My cardiologist thought I could wait longer especially given the fact I don't have symptoms. One question I have is......did you have symptoms prior to surgery?

I hae a lot going on right now. I am getting married in July and going on a one week family trip in June. I am also sending my youngest daughter off to college next fall. I would prefer to wait if I can but I do not want to compromise my heart or worse, risk, irreparable damage such as thickening of the muscle or congestive heart failure because I was trying to schedule in this surgery

My surgeon said...oh you will be good as new in a month. Really? What is your experience? I have had multiple surgeries in my life and have found that often the outcome was different than what was portrayed. I would rather hear from those who have had the surgeries. I know we are all different.

The surgeon suggested a minimally invasive approach, biological valve....

Here are a few questions., sorry I am babbling....I have been really wanting to talk to all of you

Did you have symptoms prior to surgery? Was your surgery immediate? How long was your operation? How long in ICU? Hospital? What was your recovery like? Did you wait until you had symptoms? Did you feel much better after the surgery? I certainly don't want to wait until this becomes an emergency situation. My plan is to redo the tests the beginning of February and get a few more opinions. Any suggestions for good surgeons in California? Meanwhile, I want to get as much information as possible.


Any suggestions and conversation with others would be great and helpful. I am open to emails or even phone calls.
Thanks for listening....

Leah

 

[Agian]

Greetings from SA.

I wouldn't have thought 3.6cm qualifies as an aneurysm. It's great news that you've been offered a minimally invasive approach.

Your back operation was 8 hours!! My mother has had spinal fusion and a knee replacement. Given what I've read about AVR, recovery should be gentler.

I'm sitting on a valve area of 1cm, my aortic root is 3.9cm (from 4.1) and the ascending aorta is 4 (from 4.1, six months ago). My gradients are mild to moderate. No symptoms from the stenosis, as yet.

What does 'psychologically ready' mean? The vast majority of people would find OHS frightening. Zen masters are rare.

 

[Guyswell]

Sounds like your post-op problems after your back surgery were related to your stenosis (considering your new cardiologist's comments about not clearing you for surgery). An aortic valve area of 0.7 qualifies as severe aortic stenosis. "Pooping out by evening" sounds like a symptom others have experienced. In your situation, you really should consider getting this done early in the year so you can enjoy the marriage and family trip. Since you've done the research and know the risks of waiting too long, you're well on your way to being "psychologically ready". Cardiologists and surgeons know that it's time for surgery when the risk of doing nothing, outweighs the risk of surgery. From the patient's point of view, you're psychologically ready when you acknowledge that surgery is inevitable and start to worry about the risks of waiting too long. The surgeon you choose should know about and be comfortable dealing with any side-effects from your previous radiation treatments in the chest area. It's very possible that you will be feeling surprisingly good within 1 -2 months of your surgery. Six weeks after my most recent AVR, I started riding my bike again.

 

[escargome]

OK, first, welcome to one of the best sites for just plain getting stuff off your chest. I'm not pushing you into surgery (trust me). But being pooped by the end of the day is a symptom (I used to chalk it up to getting old and outta shape, WRONG). Do you find yourself sighing or taking bigger breaths through out the day? Possible symptom. Little things like that are sometimes symptoms that our hearts/bodies compensate for. So get opinions from surgeons and or cardiologists (take your most recent test results with you if you can). Good cardiac hospitals and doctors are with USC Keck or Cedar Sinai, or UCLA. I was born with bi-cuspid aortic valve, finally at age 56 it was time to get a brand spanking new cow valve. Was in ICU 24 hours, in hospital 5 days, home from work 8 weeks (my pcp was a nervous nelly). That was 5 and half years ago and I haven't looked back since. Talk truthfully to the doctors you see. Ask questions till you are comfortable with understanding the answers (one thing I believe is that if a doctor does not have time to answer your questions, then you don't have time to consider him as your doctor). So good luck as to travel this road and remember, someone is alway here to yak with and answer questions.

 

[AZ Don]

Welcome to the forum and congratulations on your upcoming marriage. I expect your surgeon is right, that you will be feeling as good as new within a month of the surgery.

My surgeon said...oh you will be good as new in a month. Really? What is your experience? I was walking a mile a day by the time I came home, started increasing that and adding stationary bike after 1 month (Dr's told me not to increase 1st month, otherwise I would have), I was swimming at 2 months - and that is after a full sternotomy.

I have had multiple surgeries in my life and have found that often the outcome was different than what was portrayed. I would rather hear from those who have had the surgeries. I know we are all different. This was no where near as painful as my knee surgery 30 years ago. The pain was not bad and I didn't need Rx painkillers after I was home. OHS was easier than I expected.

The surgeon suggested a minimally invasive approach, biological valve.... That means you will likely have less pain and much easier recovery than with OHS.

Was your surgery immediate? Because of my risk due to the aneurysm it was scheduled rather quickly after my aneurysm and bicuspid valve were diagnosed.
How long was your operation? About 3.5 hours.
How long in ICU? About a day
Hospital? About 5 days.
What was your recovery like? See: http://www.valvereplacement.org/forums/showthread.php?41644-Good-to-be-back-home&highlight=
Did you wait until you had symptoms? Did you feel much better after the surgery? My surgery was due to aneurysm rather than my bicuspid valve, which was spared. I didn't have symptoms but I felt as good at 2-3 months as I did before the surgery. I expect you will feel better, and probably sooner.

 

[big_L]

My surgeon said...oh you will be good as new in a month. I'd say maybe two months is more like it. I felt pretty good after a month, but now four months later, I really feel better

The surgeon suggested a minimally invasive approach, biological valve. You realize that this valve will likely need replacement in maybe 10 years or so, right? You need to decide what you can live with - tissue vs. mechanical. You can find a ton of information on this site re- valve types/selection.

Was your surgery immediate? I was told that it was time in April and I had surgery in August. You need some time to prepare mentally and logistically, but the waiting was torture for me. Don't put it off too long. You are taking some risk by waiting, some would say maybe 1% chance per month of sudden cardiac death. You are also risking some permanent, non-reversible changes to your heart muscle if you wait too long.

How long was your operation? 3-4 hours

How long in ICU? one day

Hospital? Five days

What was your recovery like? Not too bad. First two weeks were tedious. Once you can lay flat and sleep well, it's easier.

Did you wait until you had symptoms? I would have said NO before surgery, but the Drs said I was compensating. Now I'd say, yes I may have been a bit symptomatic - more easily winded than normal and more tired late in the day.

Did you feel much better after the surgery? Maybe not much better, but some better. No complaints.

 

[Sten Osis]

Leah, with a minimally invasive approach, it's certainly believable that you might be "good as new" after a month because so much of the recovery is the incision itself. I had the sternotomy and felt awesome after a month, although I wasn't allowed to get back into my usual high activity level until 10 weeks has passed.

 

[Eva]

I am new to the list. .....

Leah,

Welcome aboard! You have gone through a lot with great courage! You can go through this surgery too.


I was told it was something I would probably have to deal with in my 70's. I am now 57 and the time has come.

I was told I would probably need my surgery in my eighties! I had it at 57!

did you have symptoms prior to surgery?

My symptoms were increased fatigue! I stopped walking thinking I was getting lazy, I got out of breath talking on the phone or taking the stairs up, even while sitting down doing nothing! I regarded those symptoms as sighs which I related to age, stress, etc. except the real cause which was deterioration of my valves!

I hae a lot going on right now. .... I do not want to compromise my heart or worse, risk, irreparable damage such as thickening of the muscle or congestive heart failure because I was trying to schedule in this surgery

there you go! Very wise thinking!

Once you accept the necessity of the surgery (now rather than later), you took a big stride towards preparing yourself mentally for the surgery.
It is also important to feel you trust your surgeon and that he/his office always welcome your questions with answers that can help reduce any anxiety you may have.

After all, this has become like a routline procedure for surgeons!


.............

Leah

My surgery was around seven hours (two valves replacements). The good news was the breathing tube was removed before I woke up in the ICU! I was very alert and I felt I was just resting in the hospital! I stayed 12 or 13 days because my INR was stubborn, of which 8 days in the ICU as there were no regular rooms available.

My recovery was great! Only the first couple of nights were hard, yet they passed!

Yes, I felt much better immediately after surgery. I allowed my hubby and sisters to pamper me, especially the first week I was back home. Yet, one of my sisters insisted on staying one month! I enjoyed the break!

Good luck and ask as many questions as you have.

 

[Rachel]

Hi Leah,

Welcome - hope you get some good recommendations for a Cal doc. My advice to you entering surgery is to take really good care of yourself right now - the better shape you're in - the better shape you'll be when you get out. Also please remember that we're all different - I'll share with you my experiences but you'll have your own and you really won't know how you'll do - until you go through it.

Did you have symptoms prior to surgery? Not that I would have attributed to my heart (I did nearly pass out while driving my car - which is why I went in to see a doctor at all)

Was your surgery immediate? - I waited 6 months from my initial doctor visit - took me 3 months just to see a cardiologist (I had a 5.2 cm aortic aneurysm) I was only concerned about that - not my valve - once I finally saw my surgeon I was scheduled for surgery 10 days later

How long was your operation? - I think about 3.5 hours

How long in ICU? Hospital? - Surgery was at 7:30am - surgeon briefed my posse at around 11:00am - they woke me up at 5:00pm - stayed in ICU until 10:00am the next day - graduated to a regular room and stayed there for 3 days

What was your recovery like? - Restful - I enjoyed my husband's full attention - it brought us closer together - I walked twice a day - I slept when I felt like it - I didn't have to do household chores and didn't have to go to work for a while and the best part - I ate like never before and didn't gain weight for the first 3 months!!!!

Did you wait until you had symptoms? - I did not - but I did actually have to beg to have surgery (first cardiologist wasn't going to fix my aneurysm for another 20 years....I could have died a young woman)

Did you feel much better after the surgery? No - I didn't feel bad before and it took me a long time to mentally get over the whole thing because for me it was quite a shock - I'd say I was back to a "normal" routine after 3 months (I looked and acted normal) - but it took a year for me to really feel normal.

Having the "right" attitude is key - think positively - seriously - you'll be fine