11 yrs. after diagnosis....surgery?

[Guest]

Hello--
I was diagnosed with both aortic and mitral regurgitation in 1998 (possibly phen-fen related). Surgery consult at that time indicated I might need surgery in 1-2 years. However, I was asymptomatic, so just kept monitoring.....I had convinced myself I was going to escape this outcome.....
I am now 66 and experiencing loss of energy and SOB. Had a stress echo a week ago....could only last 7 1/2 minutes rather than the 9 I always did previously. So, cardio set me up with a surgical consult later this week.

Now I need to start getting educated, as the way I feel I am quite sure surgery is in the near future.

What was the worst thing? Pain, inability to sleep, finding comfortable position.....I had a total hip replacement 7 years ago and found I had a very difficult time sleeping on my back...began to dread nightfall. Realistic recovery prognosis? I have been a moderate exerciser (water aerobics and walking) and would like to return to those things.

Help! Any advice/suggestions would be welcome! I am one of those people who want to KNOW....I can deal with a lot if I know what to expect!

Pat

 

[netmiff]

Pat, from what I hear about hip surgery, recovering from valve replacement is a walk in the park compared to hip replacement. Yes, sleeping can be an issue, few of us slept the night through the first few weeks, but frequent naps can make up for that. A lot of people slept in the recliner, and found that worked for them. Me, I half sat-up with million of pillows behind me.

From the day I got home, I was only on Tylenol OTC (over the counter) meds for pain. And they have you walking before you leave the hospital, depending on where you are, it will be something like 3 times round the nurses station, or down the hall and all the way back. I had to climb as many stairs in the hospital as there were in my home, too.

A lot of the driving and weight restrictions are for full sternum cracks, if you do minimally invasive, that is not so much an issue.

Someone witll be along soon that has had both and will fill you in beter than I

 

[kfay]

Hi Pat, welcome. I see that you are in MN...do you know that the cardio that put the whole phen-fen/valve connection together is at the Mayo clinc? Is that where you are having surgery?

While it is different for everyone, quite honestly, for me, the wait before surgery was really the worst part. I'm not saying the surgery itself and the recovery were a walk in the park, but the anxiety and worry beforehand were just pure misery for me. I was never in a lot of pain (in fact, I'm sure your hip surgery was probably much more painful) but rather a lot of discomfort. Sleeping isn't easy. It was hard to get comfortable. I was lucky in that I was able to sleep on my side as soon as they pulled out the chest tubes, it takes most people a while to be able to do that. You should be able to get back to your walking and water aerobics pretty easily. In fact, they will encourage you to start walking almost immediately.

Make sure you feel confident in your surgeon. Ask how many he has done and what is his success rate. This surgery is more complicated than CABG so make sure he has done a fair amount of valve surgeries.

Best of luck to you.

 

[Mentu]

Hi, Pat, you are not alone in learning that the time has come. I learned I had a bad aortic valve about 10 years ago and it seemed as though surgery was not in my future. That ended this year with appearance of shortness of breath, fatigue, chest pain...I think you are familiar with the list. My AVR was 11 weeks ago and I've now returned to work and am in the middle of my Cardiac Rehab program. The message for you is that there are others like you here in VR and we will be happy to share our experiences and knowledge with you. Thoughts of surgery can be very daunting at first and can generate anxiety but my own experience is that the experience of surgery was not nearly as bad as what I conceived in the weeks before mine took place.

If you have been reading posts in VR, Pat, then you will not be surprised that I would encourage you to learn as much as you can about your problem as you can while you begin making preparations to talk with your surgeon. This is a good place to begin doing that. Also, this is a good place to talk about the things that are bothering you as time passes. Let us know how we can help.

Larry

 

[ALCapshaw2]

Welcome Pat,

YEP, good sleep can be an issue for a while. MANY found they slept only a few hours at a time. NAPS are GREAT!

Many also found that sleeping in a recliner was more comfortable for the first few weeks post-op.

You will be able to engage of almost any moderate exercise you desire. See the Active Lifestyle Forum to learn what some of our more physically active members 'do for fun' (including marathons, bicycyling, etc.)

Browse through the Pre-Surgery and Post-Surgery Forums to get a feel for how members felt Before and After Surgery.

You may also want to browse through the Valve Selection Forum, starting with the Sticky's to learn the various choices/options, and then dig more deeply into the various manufacturers of the different types of valves. OR, just let your Surgeon suggest/decide. It's up to you.

Feel Free to ask ANY questions as they come to mind.

'AL Capshaw'

 

[Guest]

Thanks...

Thanks...

Thanks to all!
Yes, I know about Dr. Heidi Connolly at the Mayo Clinic who made the connection between heart valve damage and phen-fen. I saw her twice for second opinions after the initial diagnosis. She said the appearance of my mitral and aortic valves were "consistent with" what she had seen with phen-fen. No one will make a causal connection of course. My surgery will be at Abbott-Northwestern in Minneapolis (Minnesota Heart Institute)

And what is all the bad press about hip replacements? I found that to be relatively easy....no painful rehab which seems to be usual with knee replacements. If valve surgery is no worse than that I have no worries!

Actually, does anyone have any comments about side effects of heart-lung bypass? I have heard of personality changes as well as cognitive declines. Ah....I guess it really doesn't matter...once the symptoms got to me, I just want to feel better.

Pat

 

[ALCapshaw2]

AH, Cognitive Impairment, that is the elephant in the closet.

Ask your surgeon if he uses the "Best Filters" and if he believes in (slightly) longer warm-up times to minimize cognitive impairment.

I recall reading about studies to look into the 'Pump Head' syndrome, but don't recall much in the way of results.

The "Best Filters" quote came from a surgeon I know.
The longer warm-up time came from a discussion on VR.com. Ask "Tobagotwo" (a.k.a. Bob H) for details.

'AL C'

 

[river-wear]

Welcome to the forum, Pat! I don't want to further alarm you regarding your question about "pumphead" but here are a couple of articles you might want to read for more information:

http://www.scientificamerican.com/article.cfm?id=pumphead-heart-lung-machine
http://www.scientificamerican.com/b...an-open-heart-surgery-make-you-dim-2009-01-09

It seems to me that it isn't conclusive and there are new things they are doing all the time to improve OHS techniques. I would also argue that it's better to lose a few IQ points than to say no to the surgery.

 

[OldGeezerWNC]

Good Morning
I agree with Al, my wife got my Christmas present early for me. A new recliner with heat and vibrator. One thing I did was to build a 6 inch box for it to sit on. Bolted it to the box for safety. This helped me a whole lot. Especially in the getting out of it part. I just lean forward and I'm out. No pushing upward with my arms on the arms of the chair. I spent 3 months in the recliner after my first OHS. But I had a ruff time of it. Wife has a friend she works with her, whose mother had a triple bypass and was back to everyday stuff after just three weeks. Everyone is different so just spend some time reading in all the threads here and you find lots of hints and tips. Keep a notepad close by and when something peaks your interest write it down and research it or ask your Doc. I head into the hospital tomorrow prepping for my second OHS in 5 yrs, first was 5 bypass CABG, Weds will be AVR and as needed bypasses. This morning we faxed a list of questions and thoughts and concerns over to Asheville Cardiology, to give my Cardiologist Dr. Micheal Unks a day to look at and then help me with some answers tomorrow evening during rounds. Ask, Ask, Ask the only dumb question is one that's not asked...... Well maybe not.
Why do we drive on parkways and park in driveways? If I can help, After I come out of the fog ask away. Dec 16th AVR St Judes, porcine tissue Hamsters of the World Unite!!!! Rick