Intro

[Happy2BHardcore]

Hi everyone I'm Happy2bHardcore I've just joined as I've got aortic valve regurgitation serve which was caused by doing hemo dialysis while I waited for a kidney transplant and I'm absolutely devastated by this news going through this now I'm 37 and I'm really lonely and isolated.I'm so scared and worried about what the future holds for me and just need some support and information from people from the same boat as they say.Many thanks

[BeKind28-]

Hello

I am so sorry and of course you are going to feel devastated think most people would a natural response to what has happened

I am sorry you feel lonely and isolated is that because you have no friends or family around you or because you feel this way with your condition

What you have I have not been through it but hope members that have or had similar when they see your post will reply but any heart or health conditions are going to make most of us feel anxious

Doctors are so advanced now in what they can do so try not to look to far ahead stay in the now which I know is not easy and put your faith in your Consultants

You could also give the BHF Nurses a ring who might be able to help with your concerns

Let us know how you get on x

Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm

[Happy2BHardcore in reply to BeKind28-]

Thank you for talking to me my friends have become few and far between as I've had kidney failure for 15 year's now but even when I do socialise with the few I feel so different and isolating now and then hearing from a consultant that I have a form of heart disease at 37 is devastating news and of course you use Google for help and it's just frightening me even more to be fair

[BeKind28- in reply to Happy2BHardcore]

Hello

No need for any thanks it is a pleasure to talk to you

I know at your age my circumstances were different but I had started with agoraphobia again not life threatening but still slowly but surely because I could not get out one by one friends started to disappear and in a way I understood they wanted to get on with their life's and so they should but still it hurts and you feel lonely as you say and isolated

Is there not one friend family member you could confide in ?

I know this must seem dreadful at your age especially watching everyone else while you possibly feel life is stood still and dealing with kidney failure was enough at a young age without this last blow you have just had

Regarding the kidney failure my ex husband had that and he went on to have a successful transplant and I mean successful sadly though covid struck and that is how we lost him had it not been for that though I feel he would have still been here

I know kidney and heart issues make it more complex but take this a day at a time because the medical staff can and do work miracles

I should take my own advice but please keep of Google it throws out the worst scenario and just makes us worse and we forget it does not have our personal information and medical notes but your Consultants do

Life must seem unfair and some of us seem to get dealt more than we ought to but when we do it is what we do with it as life can still be good maybe in a different way to others but we can still enjoy what we have and make the most of it

Take one day at a time everything is ok with you today so see that as a good day and so on and wait and see at your future appointments what plan they have as they always have one and let us know how you get on x

[Happy2BHardcore in reply to BeKind28-]

Thank you so much I really appreciate your response and I'm trying my best to cope and really mentally I'm struggling as I'm feeling ok i really didn't know i had it until they did a scan after my transplant so it'just been in the back of my mind since then and I'm really sorry to hear about the loss of your husband 😢 I hope you are coping well with you are going through you seem like a awesome person again thank you for taking your time to talk to me I really appreciate it 😃 x

[BeKind28- in reply to Happy2BHardcore]

Hello

I know you are trying your best to cope and you are doing really well

Have they any support groups in your area that maybe something you could ask about or look on FB there are a lot of private support groups on there

It was my ex Husband and it was my Daughters who I felt so bad for as it shattered their world

You can try and look at this as a positive so many people do not know anything is wrong with their heart and it goes untreated and could then become serious they know you have now so can start planning the best treatment for you

Stay strong and keep us updated with how you get on x

[Happy2BHardcore in reply to BeKind28-]

I will keep you posted bekind28 😃 x

[BeKind28- in reply to Happy2BHardcore]

x

[Happy2BHardcore]

Sorry I felt the need to thank you

[BeKind28- in reply to Happy2BHardcore]

x

[Yumz199725]

Hi happy2bhardcore,

Wow kidney failure is alot to go through 💔. I don't know what your going through with the kidney problems but I can relate to the aortic regurgitation mine is also severe. It's also alot to process valve problems on top of everything else you poor thing, I have been dealing with this my whole life I was born with congenital heart disease bicuspid aortic valve and I have moderate to severe aortic regurgitation and moderate stenosis so will eventually need a valve replacement surgery to fix the valve. Are you under a cardiologist yet or was this just a doctor who diagnosed this. Hopefully you will be monitored every year with echos and ecgs. Wish you all the best and keep us updated. I have my yearly check up in November so will let everyone know how that goes. I'm here if you want to talk x

[Happy2BHardcore in reply to Yumz199725]

Hi yumz199725 how do you cope with all this happening to your heart I hope your OK and it's kidney dialysis treatment that caused my aortic valve regurgitation it was discovered after I recovering from a kidney transplant and I had a ultrasound scan on my heart and i got it confirmed by a cardiologist doctor at the hospital I have the same check up as you every 6 months to a year with ecg and echo like yourself I'm really devastated as I was living with kidney failure since 2009 and it's just piled extra mental strain on me as I'm 37 now but I've had problems from young age like yourself which sucks so bad hope you're OK

[Yumz199725 in reply to Happy2BHardcore]

I think because I have dealt with it my whole life I've never known any different so I guess you could say makes it easier but still alot to process x I had no idea kidney dialysis could do that to your heart valves 😕😥💔. Yeah it's worse when you have to deal with it at a young age I'm 26 so I get it it's tough! Hope your echo goes well!

[Bowlsnut]

hi so sorry to hear you now have a heart problem . From my point of view I am 10 weeks post operation of replacement aortic valve and pulmonary bipass . Yes get tired but walking and joined the Urban sketchers carnt draw haha looks like Disney but the people are lovely and laugh at each others sketches .. we don’t talk medical which is refreshing. They can see my scar trying to embrace it. Take care

[Happy2BHardcore in reply to Bowlsnut]

Hi bowlsnuts thanks for talking to me hope your feeling better after you're operation gosh that must of been scary and what's urban sketchers a art group or something along them lines I'm no good at drawing myself lol but I'm willing to join anyone anything similar to help me take my mind of things at the moment

[Bowlsnut in reply to Happy2BHardcore]

The urban sketchers are all over the country. Just google your area . meet up with your paper and pencils and make new friends. Once a month something to look forward too . No costs to join . Hope you will be sorted soon 🤞