Anxious for hindsight!

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C

cmcherry

I wish I'd found this site sooner as I'm scheduled for AVR on 20Aug in Atlanta Ga by Dr. David Langford.

I was definitively diagnosed in 1972 with aortic stenosis via heart catherization at the impressionable age of 14. Thirty years have passed and I became noticeably symptomatic on 01Jul. I've known surgery was likely in my future, I just thought it would be later! My echo gradient went from 38mmHg to 60mmHg since last year.

My youthful experience and natural inclinations led me to a BS in Biomedical Engineering in 1981, so I've also had substantial technical education on this subject. I've worked in the medical device industry throughout my career.

Shortness of breath, mild dizzy spells and angina keep reminding me I'm not the man I used to be! Timing has been deliberate to get my girls (5 and 6-1/2) in school and support for my wife during this trying time; we just moved to GA from VA in May!

Looking forward to getting this behind me and doing whatever it takes to do it right!

I'll be back...;)
 
Welcome Charlie!

Welcome Charlie!

Hi Charlie,

Welcome to this wonderful on-line support group. You'll soon feel right at home here. Just consider yourselves amongst friends.
You will find a wealth of information here from all kinds of people, and most of us have been where you are today. We will all be there for you to help you through this. It is not as bad as you think it is. The waiting period before surgery is the absolute worst.
Most doctors/surgeons are great and know what they are doing, so put your trust in him and his medical team.
Once you are out of surgery and in the CCU ward, you'll be taken care of by very well trained hospital staff. Usually it is one nurse for one or two patients. There actually is very little pain afterwards, just quite a bit discomfort.
I had two AVR surgeries in 2000 for Aortic Stenosis,(read my story for more info) but had no idea that a bad valve was the problem. I had become so used to feeling crappy that it had become normal to me.
Everyday day I just continued on with what I had to do until I finally sought help with what I thought were menopausal problems. It didn't matter where I was, I was always hot, perspiring and felt so tired.
The tests showed that I had this from birth, and that the valve was bicuspid. Two leaflets instead of the normal three. I had to have surgery within a few weeks after diagnosis because I was near death, the surgeon told me.
I am two years post-op and feeling fine now. Doing whatever I want. Life is great again!
I received a St.Jude's mechanical and it's doing great. I don't hear it unless it is very quiet in the bedroom and I am on my left side. For the rest it sounds like a regular heart beat to me. I don't hear a click with this valve.
With a mechanical valve you have to be on Coumadin for the rest of your life, maybe you already have been told. You didn't say which valve you have chosen.
I am on Coumadin for the rest of my life but it's not much of a problem once it is stabalized. You just take a few pills a day depending on your dosage and you test often to know where you are.
I have a protime machine and test at home, (See ad on this page)and am not dependent on going to labs.

Come and see us often, and ask anything you can think of. We are here to help!
Good Luck!


Christina
AVR's 8/7/00 & 8/18/00
TMC, Tucson. AZ
Dr. Gulshan Sethi
St. Jude's Mechanical

"Be thankful for every heart that touches you and grateful for every heart you can touch"
 
Hi Charlie--I can only echo Christina's comments about this site. It is a great place to talk and/or gather information and share stories. I had valve replacement surgery 2/99 with a St. Judes due to the same congenital defect as Christina. So far, so good. I was only off work for 6 weeks and started back full time and have had maybe 2 sick days since for flu bugs (never had any before either!) and can run circles around the youngsters. I don't consider myself to have either a heart condition or a health problem, just something I have to keep tabs on with the coumadin, etc. I'm glad you found this site--it is a great place to listen, learn, and gain support. Good luck!! Susan:cool:
 
Providing hindsight!

Providing hindsight!

Welcome Charlie!
I'm pleased to have another member with a biomedical background, although I left the engineering ranks many years ago. We have many folks here with strong science and technology backgrounds, attorneys, a psychologist, and all with extensive practical experience with valve replacement surgery. This is a great place to get questions answered, to help others with your own expertise, and to get LOTS of caring support as your surgery draws near.

Oh, by the way, be careful what you ask for here ("eager for hindsight") since we almost always deliver (see below)!

--John
 
Georgia girl

Georgia girl

Hi Charlie, Welcome to this wonderful site. I had my AVR at St. Joseph's on March 25th..I am almost 5 months post-op..I have a mechanical valve, on Coumadin, no big deal. Have my own Protime so I can test at home.....My Valve replacement was due to the Cardiologist finding an aneurysm..and Dr. Brown operated on me 3 days later. NEVER remember O.R...ICU..Pain, tubes..Just woke up Late the next day. Home in 6 days and doing great. We have Becky going in on 20th too, Dave, on 21st and Adam on 22nd...Keep chatting. We'll get you thru this..Bonnie:) :)
 
Hi Charlie-

Glad you found this site. You'll be amazed at the vast amount of experiences we have here. It's the only place where valvers and their families can come where everyone gets it as far as this surgery is concerned. It doesn't matter what your background when you have to go "under the knife" for a heart valve, it's a daunting surgery to have to face.

My husband has had 3 valve surgeries, 2 lung surgeries, has a pacemaker and has had lots of other pretty bad stuff. But he's still here and ticking and clicking along.

You're young and that's a big plus in the recovery phase.

I wish you all the best and soon you'll have a shiny new heart to brag about. The surgery will give you back your life.

Take care, we'll be here for you and hope that someone can post for you after surgery, so we know how you did. Talk to you later.
 
Good Luck Charlie,

I'm sure you will do fine. You mentioned your echo gradient and i wonder if anyone knows what the numbers need to be when surgury is a must. I know my ejection fraction and valve area gradient but i am not sure what the important factors are to determine if you need surgury now. My heart is enlarged and will get bigger as time goes on, i am told, but is there a chart that shows normal vs time to get a replacement valve vs too late and your heart may be too damaged?

Thanks for any replys.

I'll be thinking about you Charlie,
Bob
AI,AS
 
Metrics for determining replacement

Metrics for determining replacement

I was told by my cardiologist in VA last year that the pressure gradient across the aortic valve was a key indicator. He noted when it reached 50mmHg it would be time to seriously consider valve replacement. Last month, after nearly passing out during light exercise, my gradient was measured at 60mmHg. From a mechanical standpoint there are other key parameters; my surgeon noted effective flow area (typically 'quarter' sized - 'dime' sized time for action). My cardiologist here in GA told me to consider valve replacement given my symptoms; weighing it against the impact on my life style. I could probably defer my surgery, but why? To me this was a no-brainer given my otherwise healthy heart (normal size/walls) and desire to remain active and healthly. My particular situation did not (does not) demand immediate intervention due to imminent, life-threatening dysfunction.

So, the best I can tell you is each case needs unique assessment and evaluation although there are guidelines. My studies in the 70's/80's were not specific to your question. I'm sure there's more out there!
 
INDICATORS FOR SURGERY

INDICATORS FOR SURGERY

In answer to Bob's question, I was told that when the Aortic Valve Area drops to 0.8 cm squared, then it is time to consider valve replacement surgery.

Other indicators include whether one is symptomatic (short of breath, increased or high blood pressure, enlargement of the heart, etc). I would expect that when the heart begins to enlarge due to higher pressures needed to push blood through an ever narrowing valve, then the heart muscle is "on the road" to *permanent* heart damage which *cannot* be corrected by surgery. This would be the time to have a serious discussion about timing of surgery with one's cardiologist and surgeon. Putting surgery off until severe symptoms appear can result in serious long term loss of function. Bottom Line: SOONER is usually BETTER once critical indicators are observed in catherizations and / or echo cardiograms.

'AL'
 
Hello Bob and Charlie......Join the ranks of the engineers. My husband, Tyce, is a software engineer.....designs air traffic control systems mostly for military, ie US Navy, China, Canadian Air Force, etc... Next Wednesday will be 8 weeks for him post op AVR St. Jude's mechanical. He, too, was totally asymptomatic and we knew about the leak for 3+ years. His only symptom was that he had difficulty sleeping for about 2 weeks.....this from a man who could zonk any time. One night I didn't like his breathing and said, "We're going to the hospital!" There his heart rate was 196 and he was in afib. Our cardio immediately admitted him and after he went back in to NSR said....that was your sign. Within a month he had had surgery and now it seems as though it was definitely a very long time ago.

We have a friend who is a pathologist who says that once valves start to go bad they go quickly, and it's better not to wait long from the first sign until the surgery. I think in many cases, people have a tendency to ignore signs.

One of the issues Tyce had trouble with was that he didn't feel bad presurgery. Once they got him back in NSR, he thought he'd be fine for a year or so....NO WAY!

I wish you both the very best of luck and will definitely put you on my prayer list.....Henslyee....you keep us up to date really well....I'm getting overwhelmed with trying to remember how many!

Good luck, guys, you will be in my prayers.

Evelyn
 
hi charlie, bob, and everyone!
first of all, charlie, welcome to this great place. everyone here is so wonderfully supportive and caring, not to mention informative. i could never have made it through my husband, joey's , surgery without them!
as al mentioned, joey's surgeon also felt that there was a "cut-off". since joey had no symptoms for the longest time, he decided that he would let joey go to 0.5 (cm squared?) at which point he would insist on surgery.
evelyn's friend, the pathologist, was right in saying that once valves go bad, they go quickly.
joey went from 0.9 to 0.7 in a matter of 6 months and then down to 0.6 in about 2 months!!!
by the time the surgeon got in, he said that it was down to 0.4 andhe was shocked that joey was still walking around!!
bob, i think the cardios use different gauges for the necessity of immediate surgery. naturally, a measurement of 0.7 or less is a good indicator that it should be done (even if no symptoms appear). on the other hand, dizzy spells, etc are also indicators that things are getting worse. you have to trust your cardio and surgeon and know that they are doing the right and best thing for you.
charlie, christine was right on the mark, the waiting is the worst. once you get in there, the surgery will be behind you in no time and you will be on your way to recovery (also not such an easy deal!).
try and relax and be with your kids and wife these next few days. it's just around the corner.
we will keep you company while you wait.
stay well, sylvia
 
Hey Bob!
Was thinking about you the other day...have you picked a valve/surgeon/date yet?

Best,
--John
 
On my way!

On my way!

Well, it's o-dark-thirty here in GA. My wife and I are about to depart for my pre-surgery heart cath later this morning and tomorrow afternoon I get my clicker. She's not likely to post, so I'll update as able.

After weeks of anticipation and inaction it feels good to get on with it! I'm looking forward to regaining my zest (in time)! My wife's 'ascared' as she couldn't handle my prior energy level!

Thanks to all for your support!
 
Charlie-

You'll do just fine. We'll be thinking about you and praying for you.

Bon Voyage and smooth sailing! Talk to you later.
 
Charlie

Charlie

Welcome to a great place. Whenever you have a question, come in here and someone will answer. I had congentital heart murmur since birth, had repair at eight yrs old, and then replacement at age 36. I have been doing quite well. I needed the replacement due to time and deteration of the valve. I was very lucky when I had my bypass. You will be lucky also, like the rest of us. You take care now. Wish you luck on today's results.

Caroline
09-13-01
Aortic valve replacement
St/ Jude's valve
 
anxious for hindsight

anxious for hindsight

dear cmcherry

I am hoping everything has gone well with your surgery. I too am making plans to have an aortic valve replaced at St. Joseph's in Atlanta. I am meeting with Dr. Doug Murphy two weeks. I would appreciate your input on the hospital and the care you are receiving there. Do other Dr.s in the practice come and check on you or only Dr. Langford. He was also recommended to me by another world renowned Dr. I'm sure you're in good hands. Please write back when you feel up to it.
 
Same doctors

Same doctors

Hi Queenie, I'm Bonnie and we 3 have the same group of Doctors in Atlanta. The Peachtree Cardiovascular and Thoracic Surgeons, P. A. Mine was W. Morris Brown.....I had my AVR 3 days later at St. Josephs's when they found I had anAneurysm.,,on Thursday and was operated on..Monday..by Dr. Brown. Met him once at my bedside..Their Nurses come by everyday..E-mail me at my private e-mail under Members..and I will tell you about St. Joseph's..Great hospital and staff. I saw Dr. Miller once and Dr. Murphy for 3 week checkup. I'm 5 months today and just returned from a 7 day motorhome trip to Fla. Doing Great.:) :)
 
WELCOME QUEENIE!!! Not only have you come to a wonderful place, I'm sure Bonny and Charlie will watch over you very carefully.....It's nice to know people who have had procedures done and who use the same cardios.........welcome aboard!!

Evelyn
 
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