Valve replacement

I was 29 when I had my first heart surgery. Never knew I had a problem prior to that. I was terrified. I subsequently had mitral & aortic valves replaced aged 36. I had mechanical valves put in which was 25 years ago. Still going strong and was a complete life changer. Wait till you are on the other side and life will start anew. Good luck and best wishes to you xx

[MichaelJH Heart Star]

Hello and welcome to the forum!

There are members here with mechanical valves ticking happily after over 40 years. Are you on Warfarin with home monitoring?

[Hidden in reply to MichaelJH]

Yes on warfarin and regular monitoring .

[Hidden in reply to MichaelJH]

Does anyone know the make of valves they have in and do they get regular checks on them?

[Jocastina in reply to Hidden]

My new mitral valve is Carbomedics

[Hidden in reply to Hidden]

No idea on the make of the valves other than these ones being mech. I have an annual Echo, latest showed increased leakage, but, it's a bit more complicated than that.

[werd]

I had arv done in 1974 when I was 26.now 73 my valve was a borg shillie possibly spelt wrong. I do my own inr testing and monitoring. It is still going strong. Only downside is hairloss. I used to have a head of hair like a helan coo now I am more like a bald eaglYours drew

[Aortic43 in reply to werd]

How do you manage your own testing my docs won’t let me do that

[Gdav in reply to Aortic43]

I think it really depends on who is on at the INR clinic... when I went to my first I was told the GP doesn't sponsor home testing, 7 months later , spoke to another nurse who has put me forward for home testing strips sponsorship as long as I purchase the tester. Just waiting for a haematology appointment and it's all go.Keep persevering, you may get lucky with the nurse on the day.

[werd in reply to Aortic43]

Ask your gp for a reason for not proscribing inr testing strips as the do not come out of his budget. It is the local health board that pays for them. In my case forthvalley. The local health board pays for all your medication not the gp. I was the patient rep on the working group when they moved inr testing to GPS from in-house hematology at falkirk royalPs GPS get paid for the service. If they lose you they lose money

Yours drew

[Farmer87]

This is some positivity right there I like it! I've been waiting for new valves for years and I'm only 34! Mines only max of moderate so I can't get an operation yet. I would really like it done so I can be "normal" again and do all the things I miss.

[Hidden]

There's quite a few had surgery done young.

My parents turned down the option in the early 60s, which I wouldn't argue about. Eventually, had my first AVR at age 33, as many will testify an absolute life-changer. It kept on going for the best part of nineteen years, which for a Tissue valve wasn't bad going.

Had my 2nd and 3rd ops in quick succession, now fitted with mech Aortic and Mitral valves.

Never found Warfarin a problem, regularly checked at hospital which is only 5 mins away.

[linnielizzie]

Great post for someone about to undergo the same surgery (me) - just focussing on 'the other side'. 👍😀

[Goldery]

Thank you for your post! I'm eight months post-op, aortic root replacement (mechanical valve), had no idea there was a problem with my heart previously. Always so good to hear from people further down the line and doing well. Thank you!

[Tubbylardo in reply to Goldery]

Snap

[niffum32]

Hi I would just like to ask if you ever had AF like you I had mitral valve replaced when I was 40 when congenital was found and subsequently aortic valve replacement in 2015 when I was 57 after the aortic valve replacement I started to have AF which I believe is quite common usually when it spikes lasts only 2-3 hrs and then goes back on its own but at the moment it has lasted for three days I take sotalol medication along with my warfarin and ramipril

[Hidden in reply to niffum32]

I am in permanent AF and have always had it. My valve disease was caused by contracting rheumatic fever as a child but it was misdiagnosed which is why both mitral & aortic needed replacing. I also go into heart failure during which time the left ventricle becomes enlarged. I do take a lot of medication but i’m fine with that. Once I understood what was happening I was able to deal with it. For me personally I need to understand why things are happening and how it is being treated and I can cope. Ask for clarification from your GP or consultant if you feel unsure of anything. Also there are great leaflets you cannot access explaining things in layman’s terms.

[niffum32 in reply to Hidden]

Hi thank you for replying like you I need to know why and it is a bit dis-concerning at the moment I have already e-mailed AF nurse I had before being discharged thank you for your advice take care

[Lakelan in reply to niffum32]

Hello may I ask you a question. I have been informed last friday that I have an enlarged heart with severe heart failure. I am 51. Looks like its congenital and have always been prone to chest infections. Started constantly needing the loo during the night and thankfully my doctor saw the signs and requested an ultrasound. Sadly I had the procedure but there was no consultant follow up so all weekend all I have had for info is the internet... how old were you when you found out and how old are you now. I am a single parent and have a young family and am so worried.

[Hidden in reply to Lakelan]

I was aged 29 when I was first diagnosed. I had had rheumatic fever when I was younger that was misdiagnosed which is believed to have caused the valve disease. This was my first heart failure event. Had always had a heart murmur. My son was 7 and I was pregnant. Had to have emergency valvotomy to open mitral valve. I had mitral stenosis and aortic regurgitation. I was terrified. Have been on medication ever since to control and treat symptoms of heart failure and AF. Aged 36 underwent valve replacement surgery so have now got mechanical mitral and aortic valves. Am in permanent AF and heart failure. I am now 62. I cannot take your worry away but a positive mental attitude definitely helps. My son was my inspiration and my reason to get through one day at a time at the beginning.

I hope this helps. Keep smiling and good luck xxx

[Lakelan in reply to Hidden]

Thank you so much. I was given the news o Friday then that was it no consultant to talk to nothing. Have cried most of the weekend as all very negative Info on the internet. I am a single parent with two young girls and my world fell apart on friday. Thank you so much for your reply. X

[niffum32 in reply to Lakelan]

Hi Lakelan sorry for not replying sooner have just been in hospital over the week-end after AF did not subside and eventually getting into see my doctor sent me to A&E as he could not tweek tablets as it was going to fast waited all weekend for Cardio Version and pleased to say it worked and back on track. In answer to your question I was 40 and had a ten year old daughter when I had my first operation, I am now 63 I had no problems during my pregnancy and like you worried about the future. That was the time I started to think positive and I do have faith and at times turned to my faith which helped, I was determined to see my daughter gain a Degree at University which she did. I do believe when you have a life-threatening operation/disease you do have a different out-look on life I would just keep on pressing for a follow-up sooner rather than later which unfortunately in these times at the moment you have to do and think if it was life threatening you would have been admitted into hospital. While I was in hospital a 70 year old lady was waiting for a valve re-placement she was diagnosed as life threatening did not live in the same area as myself and had a place at the hospital been in since Thursday and was hoping for the operation this week. Keep reading all the positives other people have like I said to the lady she was getting worried as the time was drawing closer think of me I have had two operations you can do it. Hope my reply is of some help and take care

[Lakelan in reply to niffum32]

Thank you for your support. I think it's a life changer for sure have finally ditched the chocolate and biscuits haha.. I think it all came as a shock thought diabetes would have been my downfall. Take care and I am so thankful for this page and you. X

[Tubbylardo]

St. Jude bi-leaflet valve here. Titanium awesomeness.

[Clairealou]

Good to read this post as there are a few on here who have had multiple surgeries. I am having my 5th valve replacement next month but have struggled to find people who have had more than 1 or 2. I’m hoping I’ll also get a mechanical one this time but it’s never been possible before due to endocarditis. Fingers crossed! Good to hear about the INR strips on prescription. I didn’t know about that. Will speak to my GP. Thanks all