Need some info

[needinfo]

Hello folks and hope all is enjoying a happy and healthy Holiday season. I am an active 44yo male with AI diagnosed in childhood. I have enjoyed annual checkups and echos (until this year). Recently I visited my cardio for my exam and he now informs me I have progressed to "severe" and surgery is needed. I am goinmg for a second opinion in early January. I have always known that surgery is immenint but now? I feel great excercise pretty regularly, and am very active with no limitations. I have always been told what symptoms to look for and I have none of them. Anyway, I have been doing alot of research on AVR and it is so confusing, as evident in this forum from the many threads I read.
As a man I am very hard headed and and bullet proof sometimes. The thought of taking drugs for the rest of my life and the huge scare that comes with the territory totally turns me off, as does the idea of having another surgery in 10 years to replace a homograph. The Ross is very appealing, but not sure if I am a candidate or not. Thats my story and here is my question.

It has been reccommended to me to use UAB (Birmingham Al). I understand that here have been some major advancements in minimally invasive AVR and it is being done there. Does anyone have any information on patients that have been there, or, anyone who has had MIS for an AVR?

Thank you for your time......and MERRY CHRISTMAS!

 

[ALCapshaw2]

Did you obtain a copy of your EchoCardiogram Report?
If not, that is a good place to start.

It would be helpful to know your 'numbers', especially the Effective Aortic Valve Area and Gradients. Several members have reported NO symptoms, yet their valves were in need of replacement. This is often the case for people who are in 'good shape' and have 'adjusted'. (They also come back and say "OH Wow, I guess I was symptomatic, I just didn't realize it until after I got 'Fixed' ".

I had my AVR at UAB but with a Full Sternotomy.
They have at least 4 surgeons now including:

Dr. Athanasuleas (sp?) who has a special procedure for CHF patients.
He was recruited from one of the other B'Ham Hospitals.

Dr. James Kirklin (son of Dr. John Kirklin who started the Heart Program at UAB many years ago and for whom the Kirklin Clinic is named). He is the Head of the Transplant Team.

Dr. David McGiffin from Australia is the #2 guy on the Transplant Team. Some consider him to be the go-to guy for High Risk Surgeries. He is highly respected for his skill and demeanor.

Dr. Pajaro is the youngest member of the group, recruited from Florida (the CC FL Branch if I remember right). He was highly regarded there per one of my Valve Company resources. I suspect he was recruited to help provide 'continuity' at UAB if/when another one of the older surgeons decides to retire.

I'm not sure which Surgeon(s) do Minimally Invasive Procedures at UAB.

There is another Surgeon, at Vanderbilt University Hospital in Nashville, who specializes in Minimally Invasive Heart Surgery by Thoracotomy (through the ribs), by the name of Dr. Michael Petracek. He is a 'Big Fan' of the St. Jude Valves. Do a GOOGLE Search for
his name to find links to his website and a video of one of his procedures.

Two of the Top Ross Procedure Surgeons are Dr. Paul Stelzer (>400 RP's) in New York (see "StretchL" signature line in the Members List for a link to his website and Photojournal of his RP) and Dr. William Ryan in Dallas, Texas. Both have been used by several of our members.

'AL Capshaw'

 

[Phyllis]

You already got great information from Al and I just want to welcome you- especially as another UM fan- **** graduated from UM as well as my son and my daughter-in-law- go Canes!

 

[skeptic49]

It's amazing how you can walk around and do most anything even though your valve is in bad shape. Like Al says, if you are in good physical condition, the body adapts and this can fool you. I'm in the severe range myself with a bicuspid aortic valve and a 4.3cm ascending aortic aneurysm, yet I feel fine and can do most anything...well, I get winded and I can't push to hard or else I get chest tightness. But I don't feel like I need surgery even though I do.

The goal is to get the surgery before any permanent damage is done to the heart. Al is right: get a hold of your echos and take a look at the numbers.

Best wishes,

Jim

 

[needinfo]

Thank you guys...I will be keeping an eye on the forums. Regarding the echo results, I will get those on the 30th, both the regular and the TEE (boy that was a party). As for the Canes....thats the home team, I am with them through thick and thin! Hope everyone has a Merry Christmas, I am off to play Santa for the family gathering tonight!
Take care....

 

[ChouDoufu]

like you, i'm 44, but didn't know about my valve problem until four years ago. at a
routine blood draw for a cholesteral test, the clinic doc says, "everything looks fine,
except for that murmur.....but you know about that, right?" wrong, it was a complete
surprise. i'd been running marathons and doing long-distance (500 miles per week, up
to one year long) bicycle tours, didn't know anything was wrong.

had an echo at the local va; have stenosis and regurgitation. apparently also have
vegetation so large, the doctor at first thought my valve was prosthetic. anyway,
then did a TEE for better readings. doc said i'd need the valve replaced someday
(10 years maybe?), but until then do annual echos, wait and see. in the meantime,
could do any exercise except competitive sports up until the point where it started to
hurt.

well, seems time is up. thought i was asymptomatic, other than feeling tired and
now it's difficult to run longer than 2 miles. but reading on this forum, i've found
other symptoms that before i would have ignored or blamed on the weather or
democrats in congress.

seems i've had some serious deterioration recently, in terms of effective valve
area and peak gradient pressure, so have decided to do the surgery asap. if all
goes well, and the doc agrees after the cardiogram, then will have aortic valve
replaced in less than two weeks. as my girlfriend suggested when i told her about
the valve options, i'm gonna "get the meat one."

good luck.

 

[Bina]

Welcome to the group.
I had my OHS at the age of 45 and was in denial of my symptoms, until my echo numbers got real bad and my doc forbid me from driving my car.
You are young enough and probably fit enough to get through this with no problems.
Have a nice holiday.

 

[zipper2]

Just want to say hello and welcome .

I was in denial 1st surgery 16 years ago now 2nd surgery coming up

Jan 8th hasn't fizzed on me (YET)

Ask away any questions don't be shy. Glad your here.

zipper2 (DEB)

 

[Freddie]

Welcome to the family "needinfo"
I had my surgery 7 days after being told I needed one. You want to talk about denial. I figured that once the surgeon look at my results again my operation would be canceled.
Anyways, enjoy the holidays and ask anything, someone is sure to answer.

Merry Christmas

 

[needinfo]

I would love to have "the meat one" but dont want to go through another OHS in 10 years. Meet with the 1st doc on Tuesday and go from there maybe it wont be as bad as he says, we will see. The more I read about the Ross, the more I like it, but again, who knows.
Funny thing about second opinions is if the second doc tells you what you want to hear, do you go with that or get a third one...???

 

[dtread]

Needinfo, I guess I am wondering why you have Aortic Insufficiency (AI)? Do you have Bicuspid Aortic Valve (BAV), or is there some other reason? During at least one of my echocardiograms they showed me the Bicuspid Aortic Valve. You could actually see that it was malformed during the echo, plus I had a piece of calcium built up on one of the leaflets.

I had "mild" aortic stenosis associated with my BAV, but I had chest pain as symptom. However, I am very active and do a LOT of cardiovascular exercise (primarily bicycling), but also in the gym. I had chest pain as primary symptom for 15 years prior to my surgery. Now, post-op, I do not have chest pain, which is great.

Have you had Cardiac Catheterization yet? That procedure can provide more info than the Echocardiogram and provide a better picture of your condition.

I got mechanical heart valve, and like you I had reservations about taking Warfarin (aka Coumadin). I've found that my concerns about taking Warfarin were basically groundless, as the side effects are practically nil. Once I got on home monitoring the anticoagulation routine became a piece of cake. I have noticed that my hair is getting thinner, but whether that is due to the Warfarin, or just part of the aging process I do not know.

Hopefully the mechanical valve will last longer than I will. At least they are projected to last a lifetime. Not having the prospect of having to have a re-operation in the future is priceless. Something to think about anyway.

 

[francie12]

If you are interested in the Ross, check out posts by StretchL. He had a very positive experience and kept us informed in detail, including pictures. Very informative.

 

[Dawn-Marie]

Hi ~ I have no advice for you, but i wanted to welcome you to the VR family. Lots of people here will be able to help you though.

Hope you had a wonderful Christmas and i hope you have a happy New Year!

Best wishes,

Dawn-Marie

 

[Dina]

It's amazing how you can walk around and do most anything even though your valve is in bad shape. if you are in good physical condition, the body adapts and this can fool you.

The goal is to get the surgery before any permanent damage is done to the heart. Al is right: get a hold of your echos and take a look at the numbers.

Jim

Just want to re-emphasize the import of what Jim says...I had tricuspid
regurgitation(severe)for 16 years before I had surgery,I was almost
asymptomatic for 14 years,and now,even after surgery,the damage
cannot be fixed,I may improve but not to what I would like. I wish you
all the best and glad that you found this site-Dina

 

[needinfo]

Needinfo, I guess I am wondering why you have Aortic Insufficiency (AI)? Do you have Bicuspid Aortic Valve (BAV), or is there some other reason? During at least one of my echocardiograms they showed me the Bicuspid Aortic Valve. You could actually see that it was malformed during the echo, plus I had a piece of calcium built up on one of the leaflets.

I had "mild" aortic stenosis associated with my BAV, but I had chest pain as symptom. However, I am very active and do a LOT of cardiovascular exercise (primarily bicycling), but also in the gym. I had chest pain as primary symptom for 15 years prior to my surgery. Now, post-op, I do not have chest pain, which is great.

Have you had Cardiac Catheterization yet? That procedure can provide more info than the Echocardiogram and provide a better picture of your condition.

I got mechanical heart valve, and like you I had reservations about taking Warfarin (aka Coumadin). I've found that my concerns about taking Warfarin were basically groundless, as the side effects are practically nil. Once I got on home monitoring the anticoagulation routine became a piece of cake. I have noticed that my hair is getting thinner, but whether that is due to the Warfarin, or just part of the aging process I do not know.

Hopefully the mechanical valve will last longer than I will. At least they are projected to last a lifetime. Not having the prospect of having to have a re-operation in the future is priceless. Something to think about anyway.

Its a bicuspi valve, have ad a Cath, and thanks for the info on Warfarin...I have thinning hair already!
Happy New Year!

 

[dick0236]

I would love to have "the meat one" but dont want to go through another OHS in 10 years. Meet with the 1st doc on Tuesday and go from there maybe it wont be as bad as he says, we will see. The more I read about the Ross, the more I like it, but again, who knows.
Funny thing about second opinions is if the second doc tells you what you want to hear, do you go with that or get a third one...???

Yep,if I got two different opinions I would go for a "tie breaker". The better time to go thru this type of surgery is BEFORE problems occur. I was also asymptomatic although I had known for several years that I had a "heart murmur". I truly believe that I am still "looking down at the grass" (golf term) because I had the problem corrected before any real damage could be done.

I am not sure about hair loss being a side effect of warfarin. I have been on warfarin 41+ years and still have a full head of hair, although at age 73 there is a lot of grey in it.

I do preach one thing about warfarin. Although I have never found managing warfarin difficult, at least for the past 35 years, you MUST take the drug as prescribed and test routinely. If you start "skipping doses, doubling up doses or go long periods without testing" warfarin may cause serious problems....I been there and done that.

 

[needinfo]

More question????

More question????

Well at least my Hurricanes showed up to play at the San Franscisco Peanut Bowl we were not TOTALLY embarassed. Maybe next year...
Has anyone heard of repairing a dialetd aortic root (ascending) with a sleeve? Seems that my Bicuspid is "very healthy and beautiful" but the dialation has caused it to spread to the point where it regurgetates. I am more confused now than ever as this is the first I have heard of this as a problem/solution. Anyway I vist Dr Kirklins team on Jan 12 at UAB and we will go from there.

 

[gadoty1]

Not to be negative but if you choose the Ross it doesn't mean you won't need another surgery in 10 years. I had it done 8 years ago for BAV and had to have my aortic valve replaced again last month. There are a lot of success stories for the Ross but don't forget that nothing is for sure with it either. Now I have an On-x aortic valve and i have to watch my pulmonary valve cause they tell me it will eventually wear out too. As for coumadin i have had no problems at all with it. It is all a very personal decision and i can't say that i wouldn't have the Ross again if i could rewind 8 years back. I would look into repairing your bav, they didn't even tell me that it was an option when i was going thru it the first time. As for symptons i didn't realize i had any either until after i was fixed. I am 6 weeks out now and i feel better then ever. Way more energy and even more healthy menatlly. By the way I love my o-x valve. I feel like i have this durable peice of equipment in there that i never have to worry about again. Whatever you choose make sure you have an excellent surgeon that specializes in what you want done. God Bless!

 

[needinfo]

Thanks for the info, there is so much out there to digest and try and make the right decesion. I have placed my future in Gods hands, and know he will lead me the right direction. Btw, what was your given life expectancy and durability of the On-x valve?

 

[needinfo]

Thanks ****, would rather be "looking at grass" than up at roots (although I see alot of roots in my golf game!)