26 year old son trying to choose between Ross or mechanical valve at St Barts. Any advice?

[Pefki]

Born with critical severe aortic stenosis in 1997. Balloon catheterization at 3 days and then valvotomy at 3 months. Since then, all good, regular check ups, stenosis increasing but no problems till about 8 months ago when started having symptoms, shortness of breath, tired, some dizziness, especially going up hills and stairs. Surgery scheduled for 18/4 but struggling with the dilemma of which surgery. Does the mechanical valve change a young person's life completely? Can you hear the clicking? Do you need to be careful with food and drink? Does the testing of the blood interfere with travelling and life in general. I am not a disciplined person, I travel alot, I am involved in alot of groups, studying, full time work, many many interests.

[Rosie1066]

hi, like you I was born with congenital heart disease with aortic stenosis. As a child I was pretty limited with what I could do which was no fun for a child. I eventually had a HVR in 2009 and it changed my life completely for thee better. I opted for a mechanical valve as they last much longer than the tissue type and I did not fancy having to go through the operation again at a later date for a replacement tissue type valve. I have had no problems with my valve and now lead a perfectly normal life.

Im on Warfarin which is a problem to me as i am one whose unfortunate people whose Warfarin levels never stabilise and I do have very regular tests (normally ever 2/3 weeks and sometimes weekly) but I’m so used to it now and just take it in my stride. I normally have a Warfarin test done just before I go away on holiday and after I come back. So, unless you are traveling for extended periods it probably wouldn’t be too much of a problem. But that is me - most people don’t have to test as frequently as I do.

If on Warfarin, then yes you do have to be careful with certain foods mainly Cranberries and some green vegetables and careful with your intake of alcohol - no binge drinking.

Yes, I hear almost every heart beat in the background but I find that kinda reassuring and it doesn’t bother me in the lightest.

I have no regrets with my mechanical valve.

[Pefki]

Thanks Rosie, can I ask something irrelevant now that I am getting bag ready for hospital, should I only have button down pyjama tops? Is it too hard to pull pyjamas over the head for a while?

[Hidden in reply to Pefki]

hi noting your new (welcome) if you hit the reply button just under Rosie’s reply then type your reply she will get an alert just like you will have from my reply. Then there’s more chance she see’s you asked her something 😊

I haven’t had surgery but have read here and elsewhere button down will make life easier and More comfortable

Can’t advise on valve but wish you the very best with your surgery.

👍

[Pefki in reply to Hidden]

Thanks

[Rosie1066 in reply to Hidden]

I had my valve replacement at St. Thomas’s in London and I think most of the time I was in their gowns. It was such a long time ago now I can’t really remember.

[Yumz199725]

Hi pefkiI was also born in 1997 with a critical heart condition I had surgery at a day old you can read more in my bio. I hope your surgery goes well. I will also be having a valve replacement eventually at St barts. Wishing you all the best for your surgery 🙏❤️

[Pefki in reply to Yumz199725]

Thank you. Surgery date 18/4 which feels too soon.

[Yumz199725 in reply to Pefki]

I'm sure it does feel to soon but I'm sure you will be glad to have it done once you have had it. Not long to go now 6 days wow. I have aortic regurgitation and stenosis but mine hasn't got to the point of needing medical intervention yet I'm dreading when it does. Anway keep us all updated with how your feeling and how your op goes. Take care! ☺️

[Hanibil]

I had a mechanical valve in 2005 at age 48 this was recommended by my surgeon and cardiologist as at that age if I had a tissue valve the likelihood that a tissue valve would require replacement more than once in my lifetime was highly likely, and of course that comes with all the trauma and risk of further operations. I have to say it was one of the best decisions I have ever made, yes I have to take warfarin but that creates no problem whatsoever, especially if you have a home monitor to keep an i on your inr. 18 years on at a recent examination I was told the valve is working fine.

[Cliff_G]

PefkiI've had a mechanical valve for 5 years now and it's not causing any serious difficulties. A bit annoying now and then, but isn't everything. It does help that I can get to my doctor's anti-coag clinic without difficulty but if that weren't the case I'd simply go on to self-testing

You can find our charity's post-op info at aorticdissectionawareness.o... on pages 72-74. Note the last section there about self-testing, and the links at the back, p91, about this.

Drinking and eating restrictions aren't anything you shouldn't do anyway - drinking is ok, but not binge drinking, eating dark green veg with high vit K isn't usually a problem as no-one eats huge quantities (eeuw). If you keep your diet reasonably constant, then the INR should remain fairly level. In fact, you can go to the clinic too often. I know (and the nurses) that paracetamol will put up your INR so if you catch a clinic when you're on paracetamol, they might try to correct a change.

Yes, the valve clicks but it's a bit of a friend to me now, and only a slightly more obvious beat than normally.

If you do cut yourself, you do have to be a little more careful and maybe stop what you're doing until it stops, but I have cut myself without noticing and only found out later. Once stopped, final healing does take more time.

HTH

[Anon2023]

hi I had a mechanical valve at 50 as the surgeon told me that it would probably not need changing in my lifetime. Warfarin is a nuisance but survivable and the clicking gets on my nerves but , again, it’s a minor inconvenience. I think the bottom line is that once you’ve had ohs you will appreciate anything which prolongs the length of time needed before you have to go through it again. I’m not trying to frighten you but it’s major surgery and the recovery takes a long time. Xx

[Pefki]

I am now 2 weeks post mechanical valve and aorta replacement surgery and home for 1 week. Still take some pain killers, contracted pneumonia day 2 post op which set me back a bit but have finished the antibiotics. Apart from the odd codeine and paracetamol, and the 5mg or warfarin, I am taking iron as I very low. I'd like to ask, how much should I be checking the vitamin k content of everything I put in my mouth. I follow a mainly Mediterranean diet which I grew up on, not normally alot of red meat but alot of vegetables, legumes, pasta and rice, everything cooked in olive oil etc. I am very slim and active(except for the last 6 weeks leading up to surgery). I'm under the impression that aslong as I stay away from big amounts of green leafy veg(which I love), I should be ok. Going back for second post hospital INR check today, first was 2.4.

[Pefki in reply to Pefki]

Also, getting some blurry vision for some periods most days like the start of a migraine which I used to get very often, but it never goes any further than blurry vision. Could this be the warfarin or low iron or the iron tablets? Did anyone else get this strange symptom? I can ask at the anticoag clinic today but not sure if that is their expertise.