Mitral Valve Replacement Surgery for my younger sister,any help muchly appreciated worried sick and completely in shock

[WorriedOlderSister]

Thank you for reading this.

My younger sister is 37 with four children,4,7,15 and 18.In April this year she picked up a chest infection and went to the gp,he listened to her chest and heard a heart murmur,she was then sent for various tests xrays and scans.They showed fluid on her lungs and mitral stenosis,the condition has rapidly deteriorated in the last two months and she became quite poorly and was kept in hospital.After every test known to man,including a camera into her gullet to see the valve she needs a replacement mechanical valve.Today we were told she's now on the list for her surgery and it's imminent any day,her condition was caused by having rheumatic fever as a child.

This is shocking for myself my mum and her children to take in,its come from nowhere and we are devastated,I'm trying to hold it together for everyone but I'm losing my grip and I'm absolutely petrified for her,I can't eat properly or sleep it's constant worry and heartache I just wish it was all over and done with and she was home,I'm very close to her and I don't know what to say or do when she gets angry and upset,sometimes I walk away to get fresh air so she doesn't see me upset,this is the hardest thing I've ever had to deal with in my 43 years I am so lost and don't know how I'm going to watch them take her down to theatre they also said they may fit a pacemaker if needed,anyone been through same surgery or worrying sick?thanks for reading

[marypw]

Hello OlderSister - last October my husband had an angiogram and the nurse came out and told me that they weren't letting him home and he needed an urgent triple bypass. I did the initial weep and then I said to the nurse 'I've got to be a grown up haven't I?' and she said 'yes' and that's what you have to do!

It's not easy and surgery day is nerve-wracking but you can get through it. If you need to be an emotional jelly, you can be in a few weeks time (and I was), but right now you have to keep it together.

Remember that the standard of cardiothoracic surgery in this country is world class and also that what is scary for us is just routine for the surgeons.

Do read up everything you can about the op on the BHF website and you can phone or email the BHF nurses if you have a particular query. There are lots of people on here who've had the surgery and can give you advice, but it's pretty tough on relatives as well, so I understand how you feel!

[WorriedOlderSister in reply to marypw]

Thank you for taking the time to reply I appreciate it xx

[Fredders]

I can appreciate how worried you are, it’s a normal reaction. I have been through two open heart surgeries in the last seven years, both times for aortic valve replacement. The first time I had a tissue valve and the second time (last November) a mechanical valve. I also ended up with a pacemaker this time as I got complete heart block in the lower chamber. Read through the posts on here, there are plenty of us who’ve had major heart surgery, read up on it (the BHF booklets are very good) and ask us any questions you have.

To help when she comes home one of those v-shaped pillows is useful as it will prop her up like the hospital beds do so that she can hopefully get some sleep, as lying flat is difficult for the first few weeks. She will probably feel like she’s been run over by a truck but she needs to make sure she takes the painkillers as they will allow her to move about. You’ll be surprised how quickly she will start to improve - I was driving again after six weeks and back at work after 12 weeks. She may have bad days when she feels down, but I’m sure you and her kids will be very supportive and help pick her back up. Once she gets home she’ll need to continue with the walking she will have started in hospital, but don’t let her overdo it, she needs to gradually increase the distance, there are no prizes for overdoing it.

As I said earlier, do post any questions you have and you and your sister will get lots of support on here.

Wendy

[WorriedOlderSister in reply to Fredders]

Thank you so much Wendy x

[Mary_Janet]

Hi Older Sister,

I too am a younger sister who caused my older sister and older brothers a lot of worry this time last year. I was fit and well and developed endocarditis and was found to have a severely stenosed aortic valve. Long story short I was in hospital for nine weeks which included a lengthy treatment for my infection and the surgery a mechanical aortic valve replacement.

Like your sister I have teenagers, then 14 and17yrs but not younger ones. The kids were brilliant and coped far better that I thought. My 14yr found the length of my admission hard but managed. My 17yr son surprised me with some of his comments and his maturity. When I came home from hospital my son was really helpful and meant my husband could carry on working. My family had no warning about my admission and I went from being the one who does most things at home (and working) to not being there. They all seemed to cope with school, work, housework oh and the installation of a new kitchen!

I am sure you will be so worried for your sister. I know my siblings were. My sister was great , due to work and distance she was only able to visit once a week but in between sent me texts, phone calls and cards. Once home she came with cooking. The important thing was that she was there for me and if I was feeling emotional she would listen and support me. It is ok to let your sister know that you are worried. Heart surgery is scary but as Fedders says the surgery is done across the country every day and certainly in my case the staff were brilliant. If you are feeling particularly stressed about your sister it maybe worth having a chat with your own GP. It's a tough, tough time watching someone you love go through illness and surgery. Your sister will be fine but it is a tough old road. Your support will mean so much to her but you need to look after yourself too. Wishing you and your sister all the best.

Mary

[WorriedOlderSister in reply to Mary_Janet]

Thank you so much I am about to write an updated post xx