2 Years Ago:: 2 years ago, I had... - British Heart Fou...

British Heart Foundation

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2 Years Ago:

Brand profile image

2 years ago, I had enjoyed a successful CABG x 3 & a New/ Rebuilt Aorta courtesy of an 11 1/2 hour op.

It transpires that was the easy part! 2 years last night I was to suffer stroke, sepsis & a virus that chewed away at my upper lip. My throat became totally blocked, requiring a tracheotomy and I was put in to a coma.

My wife & daughters got a call at 4am to attend me and say their goodbyes.

Somehow, I continued to live!

Over the next 3 weeks I was to experience more shocking back to rythm and "we've done all we can - it's down to him if he wants to carry on". I was being shocked 3 times and hour or 20 times in 24 hour period. All reports about my status commenced with how many times I had been shocked that day.

6 weeks post op, I woke up from the coma & medicated sleep with complete muscle wastage. I could not talk, move my arms or legs, or sit up using my own muscles, I had an array of wires and tubes connected to me, including an NG Feed, which I was hooked up to 12 weeks total.

After 5 more weeks of intensive therapy my mobility had improved sufficiently to go home, where my recovery was to continue. 10 months after the op, it transpired that I had suffered depleted iron stores (they should read beetween 100-300 & mine was only 30) So, a Ferritine Infusion was order and completed. Last check, my iron count was still 287 - so that's been a positive result.

So, back to today. I am reflecting that 2 years ago I could've been dead, and given how my long term recovery is going, I sometimes wonder if the surgery was worth it, and whether it was worth saving me.

I had to surrender my license, am not allowed to ride a bike, unable to leave the house without a responsible adult and use an electric wheelchair for anything more than the shortest of walks (12-14 metres). My memory recall is like the lottery - pick the right ball and the memory pops up.

I win about 1/3rd of the time.

Then we have cognition & balance issues. I can stand at the top of the stairs and wonder how to walk down them. I have learned by rote to do various tasks, and even then completion can be open to luck. Sometimes, I can barely walk 4 metres or bend down to pick something up, without coming over light headed or dizzy & needing to sit down.

My heart issues have been resolved - but the legacy of Stroke, Sepsis & Multi Facial disfigurations have left long lasting changes to my speech, ability to eat or drink and destroyed most of my taste buds or senses for texture of food.

I've referred to myself as a 'mobile vegetable' on numerous occasions. My ability to undertake any activity is limited, I have no chance of undertaking paid or volunteer work, let alone managing myself. Prior to the op, I had plans to become a mature student at the local Uni - now I can barely read more than a tweet. This post has been edited to put right all the faults in grammar and spelling.

It appears that my love for my wife kept me fighting to survive - but she understands when I say, sometimes, I wish I'd been single!

This has been the worst 2 years in my life by a country mile - it puts Lymphoma to shame and the Kidney Stone was nothing more than a 'Trump Card' with health conditions as the subject of reference.

All others out there waiting for, recovering from, or undergoing treatment - I wish you all the very best. I hope my experience has continued to count towards those 1 in an XXX% chance of things going wrong. I did suffer several of them & survived, meaning I took the hit for quite a few other patients :-)

After almost 72 hours of reflection - and struggling to write this, I'm off to bed.

(hopefully, no more corrections needed).

22 Replies

Wow, that is some road you are travelling! My hubby always says “you never know what is just round the corner “ and it’s probably as well we don’t!Four years ago my hubby got up one morning and just didn’t feel right, I phoned the doctor, got an immediate appointment and took him. The doctor sent him for a ‘precautionary’ blood test at the hospital - he came home 4 weeks later following a CABGX4! His recovery was going well and at his post-op check up his anti-fib and anticoagulant meds were stopped - 9 days later he woke unable to speak, understand or see properly - he had had a stroke!

He largely recovered within about 3 months, and returned to work, driving a combine at harvest time and cutting hedges all winter, although some aspects of his memory and his word finding abilities didn’t fully return.

Last year his diabetes became difficult to control, then in November he had another HA and in March had a stroke that affected his left side. Another 15 weeks in Rehab and now he’s learning to walk again but uses a wheelchair most of the time. His left arm doesn’t work too well either yet.

He sometimes questions the financial cost of the outcomes of his original surgery, but he’s still here, very determined and making tiny steps of progress every day. He has a heart failure diagnosis too, but doesn’t know that, as I doubt he would fully understand the actual meaning of the term!

He too is in the tiny percentage where things sidestep the path and don’t go according to the rules but still managing to “glory on!”

Best wishes to you and your family and may you have many more ‘anniversaries’ to reflect!

Jane

Brand profile image
Brand in reply to Janma123

Sorry to hear your husband also signed up to 'take the hit' for the benefit of many others - but at the same time, glad he seems to be moving in the right direction. I've often felt it has been my MH that has suffered most since waking up - if I could survive the surgery, I'm confident of beating that.

Janma123 profile image
Janma123 in reply to Brand

I’m sure you will - you are a determined character! Onwards and upwards!

I am one of the lucky ones.cabg x 5 just over 4 years ago, and back to full fitness.All went well for me apart from a few hiccups.I would just like to say I have total respect for you and my heart goes out to you.I will say a prayer for you and your lovely wife.Good luck for the future.

Brand profile image
Brand in reply to Ravaging

I am glad all went well for you. I like to hear nothing more than someone who has to undergo this rollercoaster but was able to get off at the endof the ride and walk away. It's what we all hope for.

Dear Brand

What a truly magnificent, uplifting survival story that has { and still is } taken incredible strength of mind, let alone body, to be here to recount, in such brilliant details, your sheer fight for life.

Yours is one of the humblest stories I have ever been lucky to read about and gives me the chance to realise just how lucky { not a word I use a lot } that I am.

My warm wishes extend to your amazing family and their own fight in seeing their Dad/Husband/friend fighting to be in his corner of their world.

Please take care.

Brand profile image
Brand in reply to Blue1958

Thank you very much - it's been an interesting journey, and as I frequently say:

"it's not the one I signed up for" - but I am learning much from it. I think that is the silver lining.

Brand I have read your post with tears in my eyes. You have been through so much, and my heart goes out to you and your wife.My husband had a major stroke 5 years ago not from surgery just a blood clot, 5 weeks after my surgery.

He lost his left side and a lot of his sight.

January of this year he had multiple strokes rushed into hospital and never came home again, he passed away at the end of May.

He had all the symptoms of dementia but caused by the strokes. Every now and then he would come back to me for just a little while. One of the last things he said then was “I am done” we had 52 years together and I wanted him to stay a little longer but his words let me know he couldn’t fight any longer. Finally he just fell asleep.

I send you and your family all the strength and love. Keep fighting for as long as you can. Someone said to me that no matter what the sun will rise tomorrow and we will carry on as best as we can.

Love and best wishes Pauline

Brand profile image
Brand in reply to 080311

Pauline, I am so sorry to hear your husband succumbed to the effects of his stroke. On the plus side, you managedd to enjoy 52 years together. My wife and I won't match that as we met in our late 30's early 40's.

I can fully understand what he meant when he said "I'm done" - there is that point where striving to stay alive just becomes more painful & trouble than you get in life quality.

Whilst I am convinced that some, or much, of my behavioural issues are connected to the many times I had to be shocked back to rythm (surely this must've interferred with blood supply to my brain?), I have now very much stopped worrying about anything and just take each half day as it comes (I can really forget something happening in the morning by tea time) - and do what I can to minimise the load put upon my wife by my situation.

I do think of you often (when I remember 😆) and hope that you are finding a way to cope with the absence of your husband. I can't imagine that scenario, but I know my turn will come. Take car, and will catch up with you in future posts.

Gosh, that makes pretty tough reading. You’re strength to carry on in the face of adversity is incredible and by the sounds of it, you have an amazing family that help make that possible. I haven’t been through half of what you have but I understand when you question whether it’s all been worth it. It’s hard when you are where you are, not for being ‘brave’ or ‘inspirational’ as many will tell you, but because you have no choice. However, it’s good that you can come on here, let off some steam and make us all count our blessings. I hope you and your wife continue to make progress and find some pleasure in the day to day. Good on you for carrying on and showing everyone the tough side of life. It’s easy for us to all say we’re fine, when we’re not. We’re all here for you so please continue to share when you need to. Hope you had a good nights sleep x

Brand profile image
Brand in reply to Clairealou

Thank you very much. My wife and I have some really great times and we often joke that we would be too unsuitable for GoggleBox (I've only seen clips in twitter discussions) - but it is that 'dark or inappropriate humour' that gets us through.

080311 profile image
080311 in reply to Brand

That’s made me smile this morning, reading your reply John and I had many tears but oh my goodness we did laugh. Sometimes the ludicrous situation we found ourselves in was unbelievable! You talk about black humour and there was so much of that! As you replied to me, we had 52 years, and I am grateful for everyone of them. Johns best friend lost his wife very early and he was left to bring to up their 3 children the youngest just 18 months old. She died from breast cancer, but I never heard him complain he just got on with the hand he was dealt. He did a wonderful job as 3 grown children and 7 grandchildren. Life can really give us a curve ball but it’s the only one we get!

You are inspiring and I for one am glad I have got to know you a little.

Best wishes Pauline

Kristin1812 profile image
Kristin1812Heart Star

What a journey, and what great writing, really from the heart. Your spirit and humour shine through. Thank you for posting. It really put my winges and niggles in perspective,

Brand profile image
Brand in reply to Kristin1812

Believe me, your whinges and niggles are still as valid - we each live with our own whinges and nigggles and despite the apparent difference in severity of issues, they all create similar levels of stress. Thank you for your kind words.

What an incredible, brave man you are to have been through everything you have experienced and still keep fighting. You are an example for us all. Thank you for sharing, I feel very humble and privileged to be able to read your post. May I send you all the love and strength for your continued journey and your continued recovery. My heartfelt best wishes also to your wife and children. Take care, Judi

Brand profile image
Brand in reply to Heyjude31

Thank you very much, ultimately - I am living with the cards I have been dealt with.

I'm just glad the kitty is so little 👍

Hi Brand

Thank you for speaking so honestly and openly, when telling us what you went through two years ago and what life is like for you now. After reading your post the thing that struck me most was how I need to stop whinging about minor aches and pains.

As a matter of interest were you taking anticoagulants before you had the stroke?

I think the story you've written here is so unusual that it needs to be shared to wake other people up to the fact of how fortunate they are. Why don't you offer it to a newspaper or magazine. You could send what you've written above and see if they would like to interview you to expand on all that you went through. You have suffered so much, why not make some money from it to compensate? The other thing you might like to think of is doing a blog. Now I know nothing about blogs but I believe you make money from people reading them. I know making money may not interest you, it's just a thought.

I'm full of admiration for you and your words hit me deeply. I read your post just before going to bed and thought 'hell how do you answer that post'.

Best wishes

Jean

Brand profile image
Brand in reply to jeanjeannie50

I do not know what medication I was on post operation. Apparently it was a long and demanding operation involving 3 or 4 teams to complete. I know that when my family visited, I resembled a 'corpse wrapped up in tubes and wires connected to numerous machines'

Apparently, the stroke was considered more of a possibility after the op due to how much the op had taken out of my body. It seems like my organs had enjoyed the 4-5 hours of being disconnected and had a break, and concluded that they wan't some more down time 👍, so there was a constant fight between my brain and body as to who was doing what.

All I can tell you with certainty is that every day whilst I was in hospital I had visits from various staff who came to see me and be surprised that I was still breathing and improving. Other patients in the bay were somewhat bemused by the constant visits I recieved day and night. From them, I learned that I was not expected to survive but they threw everything they had at me to disprove that outcome.

It was an amazing experience, some good, some bad and half of which I have no memory of.

But I would not want to go through it agan. 😉

Brand. What a truly inspiring and positive story. This is what I believe our forum should be about. People sharing their experiences good or bad. But most of all you show that self belief and determination can help others to a more positive attitude. Not once in your post have you been critical of doctors or the treatment you received. You have taken everything thrown at you and got on with itThanks for sharing with us you have made my outlook for today and onwards much more positive

👌

Brand profile image
Brand in reply to gilreid1

Thank you for your wonderful words. My initial post was a 'getting it off my chest' scenario - but all of my post op posts or comments have been written in a manner to say "just cos things go wrong, it's not the end of the world'.

My experience has to count for something.

My wife knows the importance she played in my survival, but as someone who spent much of her life as a Tenders & Document Creator, she roasted me over the quality of my grammar and spelling in my post 😂 I think that's her way of telling me she loves me and is glad I survived.

Hello :-)

I am full of admiration for you how you have dealt with all you have been through your strength and determination to

You deserve the love of a good women and I am glad she was there she must be as special as you :-)

I wish I could be half as strong as you are and I wish you all the best :-) x

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