Help and advice needed.

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Help and advice needed.

Postby Mike T » Sat Dec 06, 2014 6:41 am

Within the last 48 hrs I have been told I need a replacement aortic valve, this came out of the blue and has knocked my family for six. Apart from asthma I am a fit sporty 46year old male, now facing life changing decisions.
My consultant told me about the two valve options and the thought of further surgeries in the future is steering me towards a mechanical valve.
I would like to hear from anyone who has undergone the mechanical operation and get their views, I don't think I am too bothered about the noise but the lifetime on warfarin scares me. I would like to know recovery times and fitness levels and the amount of training/ keep fit you can do. AlsoI do like to socialise and have the occasional drink but the conflicting information about alcohol and diet is worrying me.

Any advice would be great
Mike T
 
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Re: Help and advice needed.

Postby Forlyd » Sun Dec 07, 2014 12:13 am

Hello Mike,
It must have been a bit of a shock to be told you have a "dickie ticker ". I was born with one. Cannot say I know anything about mechanical valves but am very familiar with tissue pulmonary valves. I had mine put in nearly forty years ago. Although it has developed a small leak it has served me very well up to now. It did save my bacon ! Yes, having to take Warfarin for the rest of your days is a bit of a pest. The thought that you are consuming an ingredient of rat poison can be a bit scary but it is in such a tiny dose that you should come to no harm, and it's anti-coagulation effect is most beneficial. Having to repeatedly get tested for correct dosage is a real pain in the neck, but it is all keeping you alive and in as good a condition as is possible. Sadly the time has come for you to accept that your heart is likely to restrict and change your life in the future. Restricted drinking of booze, less HEAVY excercise, and maybe less excitement ? It's not the end, only a bit of change of lifestyle, so don't let it get you down Mike. Best wishes for your op when it comes. Love from Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation 2001.Bivent.fail & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
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Re: Help and advice needed.

Postby Mike T » Sun Dec 07, 2014 6:55 am

Lydia,

Thanks for the reply, I have spent the last 24 hrs worrying and looking at virtually every post/blog on the Internet. I have got myself into a right state. Reading about various complications of the operation and long term quality of life. I have a 15 year old son who doesn't know yet, he sits his exams in a few months and I am worried it will affect him.

Right now i feel a mixture of feelings sadness,anxiety and anger, I was hoping to speak to someone who has come through the other side (mechanical op) and get a first hand experience.

If there are any bloggers out there who can help I would really like to here from you,

Mike
Mike T
 
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Re: Help and advice needed.

Postby Tricky Dicky » Sun Dec 07, 2014 11:10 am

Hi Mike,

I've always had a dodgy heart and knew that one day I would have to have a valve replacement, but it still came as a bit of a shock when it happened (I had an angiogram as part of a check up and they said that I'd be in for surgery within the week - which I was).

As I'm 50 and don't want repeated operations I opted for a mechanical valve which was fitted three weeks ago. So far so good, no real problems with the warafarin, the INR test is just a fingerprick test which sould settle down to once a month at the doctors surgery. I'm getting used to the noise - thump thump thump (as is my wife). Already managing one hour walks in the local woods and looking forward to getting back on my bicycle, confident that I will regain my fitness. I don't envisage entering any bike races but am sure that I'll be able to get back to riding with my family and friends.

As far as alcohol is concerned it is recomended that you don't exceed the national guidelines (up to 3 units a day) and no binge drinking.

Good luck and get in touch if you would like to know any more,

TD
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Re: Help and advice needed.

Postby Mike T » Sun Dec 07, 2014 12:59 pm

TD thanks for the reply,

Would you mind answering a few questions,

Were you given a choice of tissue v mechanical.
Were you told how long either would last.
What is the make of your valve and was that the only choice
Did your surgery pass without any complications and if so how long were you in hospital for.
Do they start you on wafarin immediately.
Can you hear a tick from the valve
Does your local GP support home testing.
How often do you have your bloods checked.

Sorry to bombard you whilst still recovering but your answers might just put me a ease.
Mike T
 
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Re: Help and advice needed.

Postby Tricky Dicky » Tue Dec 09, 2014 1:35 pm

Were you given a choice of tissue v mechanica Yes

Were you told how long either would last. Tissue - 8 to 15 years, mechanical shouldn't need replacing

What is the make of your valve and was that the only choice St Jude, I wasn't offered a choice but maybe I could have asked for a different one, if I had wished.

Did your surgery pass without any complications and if so how long were you in hospital for. I was in for 10 days, there is some slight leakage around the side of the valve which may require a minor operationin the future, and it took a while to get my blood values settled.

Do they start you on wafarin immediately. Yes

Can you hear a tick from the valve Not a ticking as such. I can hear my heart beating a lot more than I ever used to be able to (my wife can also hear it). Can you remember space dust that kids used to put on their tongue? The valve makes a crackling noise like space dust from time to time.

Does your local GP support home testing. When I was first discharged the district nurse came round to take blood samples. From now on I go to the GP surgery for the practice nurse to do a finger prick test, they don't currently support home testing.

How often do you have your bloods checked Currently it is tested weekly, but if it stays stable this could move to monthly tests.

Hope that helps,
Tricky Dicky
 
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Re: Help and advice needed.

Postby nurseylou29 » Thu Jan 01, 2015 8:47 pm

Hi Mike,

I have a different heart problem, but have been taking Warfarin since I was 17 (I'm now 36). It has not caused me any problems, and although I am not much into alcohol, on the few occasions that I have had a big blow out (best friends hen night etc) I have not suffered any ill effects.

My GP surgery does support home testing, and I have recently purchased a coagucheck machine in order to be able to do this. I did have to pay £200 for it though as help is means-tested and as I work I was not eligible for funding - but it's worh checking with your cardiac unit as funding is available if you are on a low income. My local area does not support self dosing though, so I still have to telephone in my result so I can be told what dose of warfarin to take (& as I am a nurse, this is somewhat frustrating!!). Some areas will send you on a course though so that you can learn to self dose.

Hope this helps,
Louise :D
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Re: Help and advice needed.

Postby Marj_eo » Thu Jan 01, 2015 11:37 pm

Hi Mike! I had aortic and a mitral mechanical valves at the age of 47 (result of a congenital condition). That will be 9 years ago on 5th March. I don't find warfarin a problem and I self-test and manage dosing. I had to buy the coaguchek machine but it was definitely money well spent. I had very supportive GPs who helped me "fight" the Health Board to be able to do this. But, it was worth it for me and also for those who have now benefitted from the protocols that were set up as a result. I do hear my valves "click" especially when things are quiet!
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Re: Help and advice needed.

Postby Beckyw » Wed Feb 25, 2015 12:16 pm

Hi mike,
Just a comment on the tick tick ticking!
It soothes babies to sleep very easily and you become surprisingly use to it! My husband had his tick tick as the children called it removed in October and I still find it too quiet when we are sat close together!
Best wishes for a healthy future!
Beckyw
 
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Re: Help and advice needed.

Postby G-10 » Tue Apr 28, 2015 11:32 pm

I'm 31 and needed a replacement aortic valve 6 months ago. I chose a mechanical valve as I didn't want repeat ops. My valve is a sorin carbomedics. I can hardly hear the valve ticking. Most of the time I forget it's there. I was in hospital for 10 days. I pretty much eat as I was before the op. I stopped drinking alcohol now as you can't have more than 1 drink a day on warfarin. I never used to drink often but when I did I had quite a few. My fitness level is quite good now, better than some friends who don't have mechanical valves.
G-10
 
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