New Member who is confused !

[davidfortune]

No Holds on Life

No Holds on Life

John,
Welcome? Sorry you're here - I understand the feelings - I think we all do. I'm to young for this. I haven't been to a doctor in 18 years - I don't have health problems. I am fit, healthy, active... Young. These things happen to old men not 30, 40, 50... year olds (no offense to those older as my perspective on old is constantly changing).

Putting you life on hold - Definitely not necessary. Careful, regular, scheduled monitoring of your heart is what you need. You go to a dentist twice a year to check on those pearly whites and they can be replaced. Regular cardiologist appointments should rate higher than dental exams in terms of importance (no to minimize good dental hygiene especially for BAVers).

Read through posts of others with your same issue (also young guys or girls) who leave very active lives.

Challenging - yes. Scary - yes. Thought provoking - yes. Life Stopping - NO.

As Bob (tobagotwo) said - The key is watching for elargement of your Left Ventricle. This would signal that the heart is struggling with the amount of regurgitation (leakage) that your valve has and is starting to enlarge (which is a bad thing since it means that the heart is weakening). Ejection Fraction (EF), Regurgitation Classification (Mild, Moderate, Severe), Blood Pressure (within reason) are all almost irrelevant since each cardiologist and each echo can view things and classify those things differently. Measurement of the Left Ventricle (LV) stated in terms of End Diastolic Diameter (EDD) and End Systolic Diameter (ESD) are the most key metrics to watch. Watch the others sure but key in on those two.

Live your life, eat right, exercise and watch your heart.

Sucks to be here but this is the hand we're all dealt. My philosophy is deal with it, learn from it, use it to make my life better and make me a better person and maybe use it to be able to help other people at some point. I'm not saying dismiss it cause we can't (or at least shouldn't do that) but deal with it. Thank God (if you believe) that is was found before you needed emergency valve replacement because the damage was already severe. Take the time to learn as much as you can, talk with family, friends, new friends here on VR.COM, doctors... Get input, ideas, and suggestions. What i think you will find is that there is no "Right" answer for valve selection. There is only what you hope is the lesser of 4 evils (1. Ross, 2. Mechanical, 3. Tissue, 4. Repair -Yes CCF does a significant number of repairs) for you. None of them are great choices but given the alternative (that your valve is damaged and has to go) you have to make a choice. In the end it is a bit of a "crap shoot", "roll of the dice", or "God's Providence" (or some combination of all of those) that factor into how long your (or my) valve choice will last and whether it will be easy or challenging for each of us.

Take heart (no pun intended) there are many excellent surgeons and continuing improvements in medical technology (like the On-X mechanical or Edwards Perimount Magna) that are continually changing the landscape of anti-coagulation and tissue valve longevity.

This is a stage in life, but it is encouraging to see those on the other side of this surgery say that the surgery feels like a distant memory.

Best of Luck,
David

 

[Gemma]

Hi John,

My boyfriend Jim and I are in Chester - nice to see another British "face" here. Jim also had aortic regurgitation caused by a congenital BAV, and he had his valve replaced with a mechanical valve in December 2003.

I think most of your original questions have already been answered. If you're leaning towards a mechanical valve, two of the best which are available in Britain on the NHS are the Sorin valve or the On-X. On-X have had lots of press because they're trying lower-INR or aspirin only options, but the Sorin valve is very similar in terms of pressure gradients etc (I'm no scientist but Jim was impressed when the surgeon talked to him about that, and no doubt in the past 3 years there have been further improvements to the design of the valve). With current aortic valve models, the recommended INR range is 2-3, which means your blood takes 2-3 times longer than un-anticoagulated blood to clot. This is still something to be aware of, but much less of a concern than 10 years or so ago when anticoagulation management was less good. Jim rides a motorbike, went body-boarding last week in Newquay, has a beer now and then (he had to stop drinking much before his surgery as he was put on an ACE-inhibitor and the combo would've caused problems, and he's never liked more than a pint at a time since then), works as a precision engineer and is doing up his go-kart right now for a weekend meeting in the Lake District next week. So warfarin hasn't restricted his life. If you regularly drink a lot and are a stuntman, probably not the best idea, but for the average person it tends not to cause as many problems as they may expect.

I was only planning a short answer! Will shut up now, but hope this has helped a bit. Welcome to the "family"

Gemma.

 

[sue943]

Hi John, good to see yet another Brit.

I see you are in Coventry, does this mean you might have surgery in Birmingham? If you get referred to a cardiologist there by the name Of Dr Neeraj Prasad then consider yourself very fortunate, he is superb.

 

[LaughClown]

Im also in the waiting room and 22y/o so probably considered a youngin'. I have to have AVR soon annd have a BAV. As I have been mulling over the valve considerations, some thing s have gone through my mind that I thought I'd share. I thought about getting a tissue valve since in ten years they will probably have a med free life long valve and could get it done then. Then someone told me something I thought was a good point. No one knows what the state of medical care is going to be in 10-15yrs nor my financial ability to acquire it. I could be put in an extremely tight spot in ten years with a tissue valve, since I could either not have access to it or the ability to pay for it. Also if some valve is made in the next decade or two, and coumadin is worse then surgery, I could probably just get them switched then anyways.
These are only meant as things to consider. Im obviously leaning towards a mech valve, but Im still weighing my options as you are.

 

[JMCEWAN]

Once again thank you for all the replies. Feeling a lot better about my future prospects now. All your posts have been greatly appreciated.

tobagotwo - Loved the reply concerning the scar !! Thats one of the list and the scar will be forgotten about. No more questions and answers needed about this.

BDMc - 21 years post op. Fantastic. Great to see people are so active after the op aswell. Very reassuring because when the doctor first tells you you think it is the end of everything.

Gemma - What a small world it is. I was in Newquay last weekend aswell for the RipCurl competition. Not entering just watching of course. Can't surf but bodyboading is good fun. Again good to see that even if I choose an mechanical valve and am on Warfarin this sort of activity doesn't need to stop. I have beeing looking at the On-x valve aswell and it is good to know it is available in the UK.


LaughClown - What you are going through now is exactly the though process I am going through. Tissue and wait to see what happens over the next 10 - 15 years but that definitely means a second more risky op. Mechanical and warfaring and ticking (how bad really is this ?) . The On-x valve looks favourite at the moment as it has just been granted permission to do trials using lower levels of anti-coagulation.

Sue943 - Thansk for the advice on Dr Neeraj Prasad. I will look him up to see if he is an BUPA's register as a authorised heart surgeon.

davidfortune - Great reply. Really informative. I am going to see my cardiologist to discuss the results of my TEE so will use this and the info other people have posted to get all the info I can. He is going to have so many questions to answer !

Once again . Thank you one and all. There will be many more questions to come I'm sure.

John

 

[OldManEmu]

Surgery

Surgery

Chris I found surgery no where as bad as I imagine, I was 41 at the time of surgery with CHF. At 39 with No other health problems surgery should be straight forward. I couldn't believe how quickly post surgery I felt better. Most of the statistics they hit you with are based on >60 years with other health issues. Being hairy I can hardly see my scar 20 month post operation. I am surprised that any one had heard of Rip Curl and Australian Surf Company in the UK.

 

[Gemma]

I am surprised that any one had heard of Rip Curl and Australian Surf Company in the UK.

Are you kidding? The RipCurl Boardmasters competition is THE reason thousands of people (surfers, bodyboarders, wannabes like me ) flock to Cornwall every August. And they make great clothes too! (Shame they're so expensive - I bought a new hoodie while in Newquay - thought Jim was going to have a heart attack when he saw the price on the till!!).