Decisions decisions!!

A place for GUCH Patients and their families to exchange experiences and gain support. So please feel free to ask any questions you may have.

Moderators: Moderator6, Moderator2, Moderator5, Moderator1, Moderator3

Decisions decisions!!

Postby Kthorley88 » Wed Apr 01, 2015 4:47 pm

Hi everyone ny name is Kim. I am 26 and had bicuspid aortic valve with calcification and aortic regurgitation and dilation all my life. Always had regular check ups and this has never prevented me doing anything I have wanted to. However a few weeks ago I was told that my aorta was now dilated at 51mm and surgery needs to be done in the next few months. This has come as a big shock and has turned my world upside down. I will be going to Glenfield Hospital in Leicester under Dr Lotto. I need to go back and have a camera down my throat to check on the calcification level but if this is too high then a valve replacement will need to be done. Being told that the biological valve will last a maximum of 5 years at my age and the mechanical valve will result in being on warfarin for the rest of my life doesnt fill me with joy. Fairly sure Im not ready for kids in the next 5 years as I am concentrating on studies but equally if I can prolong the warfarin taking that has to be a plus. Obviously need to make a decision soon but would be good to speak to someone who has been there.

Thanks in advance

Kim x
Posts: 1
Joined: Wed Apr 01, 2015 4:36 pm

Re: Decisions decisions!!

Postby gingerach » Thu Apr 02, 2015 12:56 pm

This is just my experience but I had a piggy valve replacement when I was 19 and was told it would last upto 10 years. It's now been 16 years and I'm starting to have problems but still not ready for surgery. I'm trying to see how far I can push it!

I don't know if other people have had similar experiences or not. It might be worth asking your cardiologist.

Good luck with your decision.
Posts: 5
Joined: Tue May 16, 2006 9:07 pm
Location: Sheffield

Re: Decisions decisions!!

Postby lisap » Sat Apr 04, 2015 4:51 pm

Hi Kim

I had to make this decision just a few weeks ago as a matter or urgency after having endocarditis. My choice was ross procedure or mechanical. Chose mechanical valve as I didn't want to have two valves being messed around with and also the less likely risk of needing further surgery down the line. I am now 5 weeks into my mechanical valve and feel fine. Getting used to warfarin is not too much of an issue. If you need any further info please let me know as this is a hurried reply. Good luck

Lisa P

Angios, TOE's, MRI's & CT's
AV replacement surgery & aortic root enlargement 28th March 08
AV replacement (mechnical), aortic root enlargement and conoventricular septoplasty 26 Feb 2015
Endocarditis Winter 2014
Bristol GUCH patient
User avatar
Posts: 369
Joined: Wed Oct 10, 2007 6:51 pm
Location: Devon

Re: Decisions decisions!!

Postby Forlyd » Sat Apr 04, 2015 10:13 pm

Hello Kim,
First, remember we are all different. What is a success for one may not be as good for others.
I am probably, according to my doctor, the oldest survivor of Four Fault Tofs in the world My "Piggy" pulmonary valve was put in in 1975. Yes it's 40 years old this November !!! I was also told the piggy valve may only last 5,10,or 15 years. I was told by the surgeon in 1975 that my chances of survival were 50/50 but, if I allowed them to use a new untested anti-rejection drug, and that drug worked, my chances would be increased to 80/20. Naturally I jumped at the chance.
My piggy valve now has a moderate leak. Unfortunately my tricuspid valve has a severe leak which badly affects my other major organs especially my liver. Because of this my life expectancy is only four months.
I will be 67 years old in July. When I was 7 years old, doctors told my parents that I would be lucky to see my 12th. Birthday ! I have confounded my doctors before and I will do my best to surprise them again. Yes, even though I have a piggy valve, I have been on warfarin for many years and only find the constant blood tests a bit of a pain in the butt ! But hey it keeps me alive ! So Kim, the piggy tissue valve can last a long time, and taking warfarin is nothing to be scared of.
I have had 2 children and now have 7 grandchildren so my op in 1975 did pay off.
A little hint though, if you can find a devoted man to help you out it will make a huge difference !!! I have been very lucky in that
respect and would not swap him for anything.
Take good care of yourself Kim.
Love from Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
Posts: 231
Joined: Mon Feb 09, 2009 2:04 pm
Location: Newcastle-upon-Tyne

Re: Decisions decisions!!

Postby Tricky Dicky » Wed Apr 08, 2015 12:20 pm

Hi Kim,

There's a useful webinar at about valve choices for GUCH patients. A tissue valve won't last as long in the aortic valve position as it will in other valve locations (hence why other people have tissue valves that can last a long time).

I had a bicuspid aortic valve which was operated on (valveotomy) in the 1970s and lasted 50 years until it needed replacing last November. I opted for a mechanical valve rather than a tissue one. I don't find taking warfarin to be a problem, scratches etc don't seem to take any longer to stop bleeding. The local doctors surgery does the blood tests which should settle down to being monthly or so.

I've had open heart surgery twice now and really wouldn't want to be having it every 5 to 8 years in order to replace a tissue valve.

Having said all that, I'm a bloke and not faced with the 'not having children' issue that warfarin brings.

For more views you could try the Somerville foundation facebook page, the ACHA forum or (might not be working anymore).

Is the On-x valve a possible option for you? It's a new mechanical valve that doesn't require as much anti-coagualtion drugs (maybe you could still have children with one??)

Good luck,

Tricky Dicky :D
Tricky Dicky
Posts: 122
Joined: Wed Aug 16, 2006 1:32 pm
Location: Camberley

Re: Decisions decisions!!

Postby G-10 » Tue Apr 28, 2015 10:59 pm

Hi Kim.
This story sound very similar to mine. I'm 31 years old male and was in your shoes 6 months ago. I've had a bicuspid valve all my life and went to glenfield hospital every year for check ups to be told all is well, Then out the blue I'm told its best to change it. I was very shocked. I had a camera down my throat and was told i had heavy calcification. I made the decision to change it. After lots of thinking.

I was also at glenfield hospital and my original surgeon was mr lotto. I went with a different surgeon in the end as mr lotto was busy and could not give me a date with a few months notice. All my contact prior op was with mr lotto and he seems good. I found the liaison nurse chris very helpful and very supportive. He even arranged me to speak to someone on the phone who had a op and was around my age as I had lots of questions for some who had been through it.

I went for the mechanical valve as I was told it should last my whole life. And tissue valve will only last around 10 years. So if I lived until 70 I would need 3- 4 ops. Mr lotto also thought mechanical was best for me.

I'm now on warfarin and all seems to be going well. I was in the hospital for 10 days. I found glenfield hospital to be fantastic and could not have asked for more. I'm lucky that I live round the corner from there. They are a heart specialist hospital and if you do need the op I'm sure you will be in good hands.

If you want to speak to some one who has been through what you might have to ask the liaison nurse for my phone number and I'll try to answer your questions,

All the best Jiten
Posts: 3
Joined: Tue Apr 28, 2015 10:22 pm

Re: Decisions decisions!!

Postby NikCus » Thu Jun 16, 2016 9:08 am

Dear All

I found this post interesting in particular since my husband and I are looking to speak to someone who has a mechanical aortic valve. We want to know of a first hand experience. My husband is due to have his aortic root and valve replaced on the 16th August this year at Barts - we were given some options mainly:

1. repairing the bicuspid valve - little chance of this and surgeon will only know during operation
2. mechanical valve which lasts a lifetime but you need to take warfarin and the ticking noise - we are concerned about this - my husband is 37 years old
3. Pig valve which lasts 10 - 15 years then you are facing another open heart which the surgeon does not recommend or we are hoping that by then we could replace the valve through the groin - catheter procedure which is already being done...

We had two opposing views from two different surgeons in london - One who is against mechanical and one who is more cautious and insisted on mechanical.

Your experiences will help us make the right choice. thank you.

from Malta
Posts: 2
Joined: Thu Jun 16, 2016 8:12 am

Return to General Discussion Group

Who is online

Users browsing this forum: No registered users and 1 guest