Traumatic major heart surgery

[Belinda36]

Hi I am 36 and had major heart surgery 6months ago, I collapsed at 9month pregnant due to my aorta dissecting. Unfortunately the baby was brought via C section and died, I also needed a hysterectomy to try and stop the bleeding, I went on to haveing multiple heart surgery’s to try and save my life.

Triple heart bypass

Aortic Root repaired

Right ventricle

I was on a ECMO machine and in surgery for 23hrs I was then transferred to the heart transplant unit in papworrh as the doctors were unable to get me off the bypass machine I went on to have an RVAD until they realised my right ventricle had also detactched . 18 days later I was then moved back to Leeds we’re i eventually was woken to all the horrific news and covered in scars. Unable to walk talk eat or drink. No baby or unable to have children in the future. I have a husband and a 6yr old girl who are both grieving and been amazing. I really need advise on how long I have left I have been for a ECHO scan this week to find I have two leaking valves and this will never be able to be treated as no one will open my chest up again as I’m luck to be here. How can I increase the health of my heart and is there anything I can do or take to help on this journey

Thanks

Belinda xx

I have no idea what my life expectancy will be I was in hospital on intensive care for 3 months

I went for an ECHO this week to be told I have two leaky valves (unsure which ones)

I am so worried as I want to go back to work at some stage but still recovering

I really want to know what my life expectancy could be and what can I do to get well

No surgeon will open me up again as I’m looking to have survived

Any advise would be great

Thanks

Belinda x

[bee862]

I wish I had some advice for you. I’m sure you will get some on here. I have found everyone very helpful on here.

I’m so sorry to hear of the terrible time you have had. I wish you well

[Kazcoles64]

Omg im so sorry to hear all that you have been through it's so awful bless you. You should really talk to your doctor for answers im shocked you not been told how this will affect your life expectancy. I wish you all the luck in the world and hope you go on to have a long and happy life with your husband and little girl xx

[MKB38]

Poor you. I don't know what to say, I'm so sorry for your loss. Looking ahead, make the most of the future with your husband and daughter. Make a list of things you'd like to do together so that you've got things to plan for and look forward to. Hopefully the doctors can advise on the outlook for you. Take care, you are in our thoughts. Love M x

[laura_dropstitch Heart Star]

So sorry to hear you have been through such a tough time. I really think your doctor should be able to answer most of your questions, certainly better than we could. You should write down exactly what you want to know and make an appointment to discuss. I think most heart conditions include an element of uncertainty, but you should be able to know more than you do currently.

I'm 37, have a six-year-old girl and can't have any more children, so I can definitely relate to that side of your experience. If you ever want to message me directly to chat, please feel free.

Lots of love x

[gal4God]

Praying!!! I’m glad I made the decision as a kid to adopt wen I get married and start a family. I didn’t even know the risks for the heart condition I have, just knew their could be risks. I had my tubes tired too protect my heart.

[Heartlady1]

Hi Belinda.... so sorry to hear of everything you have been through and also for your loss.

You ask about life expectancy.. . But this is something doctors are always reluctant to discuss.. .. as that is so difficult to predict.... and I don' think that helps us as then we think this is a finite date. ( I did push my doctors 're this question many moons ago... and at the time they said I may only have 12 months.... and here I am 23 years later) so it' not something I would focus on asking.

More importantly I would suggest asking questions around getting your health and body back to fitness levels. And what kind of fitness do they feel you will be able to achieve... along with any timescales. Also what can they suggest in terms of exercise... what should you do.. . And what should you not do. For example I have been told to avoid steep inclines . .... but I can walk on flat. So now I just say "I don'

[Heartlady1]

.... do hills. I think the more you can focus on what you can do to build up strength will give you a sense of being in control.... rather than it controlling you. I am sure you are spending lots of time with loved ones.... as I did too... and please try to enjoy rather than worry about the future. I found that instead of constantly worrying about the future ( which I did initially) I coped much better when I decided to live in the moment. And some days were bad days.... but lots were good days.

Write down all the questions that you have before seeing your doctors... as it' very easy to get distracted and forget to ask otherwise. All the very best to you and your family

Karen x

[mauschen]

Oh Belinda,

What a storm you and your family have been through! When you break down the complex information you have provided, in my opinion you need multidisciplinary intervention. For this reason, no one will be able to accurately predict a time frame for life expectancy.

We are all individuals and as so there cannot be a standard timeframe particularly in such complexity. For example, someone else with a dissecting Aorta may not have suffered the same complications as you.

Has anyone suggested a psychologist to help you to separate the physical and emotional trauma and scars?

My own heart disease apppears mild in comparison to your own yet I too worry about what lies ahead so I get where you are coming from.

I also feel your pain as I too lost a baby at full term and could not have more children. My daughter was 7 yrs old at the time and I found it very difficult to deal with her grief which was very different to my own. In those days people including doctors would tell you that you that you were young and would get over it but believe me, you never do. I am now a grandmother three times over and with each of my daughter’s pregnancies, I relived the trauma. For this reason, I beg you to consider asking for pschological help. Don’t burden yourself with further trauma and anxiety. Your cardiological team have brought you to a stable condition and no doubt are managing your care with a fine tooth comb. Try to leave them to deal with this burden while you learn to cope within your family unit. Afterall you will need a strong family unit to be with you to face the challenges of the future that heart disease will bring. Let your body heal, let someone else help you heal your mind, soul and family. One thing at a time Belinda, don’t try to run before you can walk.

You have touched our hearts today and we will be with you when you need help or someone to talk to. We feel your pain yet in your situation we cannot help, we can only be here on the forum when you want to talk.

Please feel free to message me if you want to talk about your beautiful baby and perhaps contact sands.org.uk a charitable organisation to help in cases of stillbirth and neonatal death.

Take care!