1 Year On - Not How I Expected Things To Be

1 year ago, last night, I was taken by Ambulance to the local A&E, from which I was admitted to the local Cardiology Ward, for the second time in a few months, and after being told I needed an operation fairly soon if I was to survive.

Within the week I was transferred to Essex CTC where I was to undergo 11 Hours of life saving Open Heart Surgery, but after which I was to suffer complications such as a Stroke, Sepsis and and HSV that ate away half of my top lip. The result of these complications meant I was in a coma for 3 weeks fighting for my life and another 3 weeks coming out of the coma and being moved to the recovery ward.

I woke up in the middle of September with almost complete muscle wastage - able only to turn my head left and right and make some attempts at trying to talk. With great care and help from Physio’s I was able to get sitting, standing and walking again to the point where, after about 4-5 weeks I was able to be discharged back home to Suffolk.

From this point, I carried out the various exercises I had been given, and slowly started to improve physically, but kept experiencing lighted moments or dizzy spells - so had to give up my Driving Licence, any hopes of riding a bike, and even walking too far without fear of having a turn. By February we had a acquired a wheel chair to allow me to get out of the house, which allowed me to try and develop my muscles and improve my overall wellbeing.

Then, on 7th May, I woke up with almost no ability to walk and finding cognition and the act of reasoned thinking or memory a difficult task. Trip to the GP, and a blood test or two later, and I was advised that I had depleted my Iron Stores, and had a Ferretin Level of 28 (should be between 100 - 300). My Cardiology Clinic, GP, and the Essex CTC were all of the conclusion that this was a sign of how ill I was post op, and how much recovery my body still needs. Iron, apparently, is the stuff that carries all the nutrients and oxygen around the body (via the blood stream) to give it the energy to function and repair itself.

So, a Ferretin Infusion was arranged, about a month ago now. We are also trying to see what improvements can be made to my diet, or the size of the portions I can eat. Post op, my drinking consists of a litre of heavily diluted squash and a can of Caffeine Free Pepsi Max - each and every day. Now transfer that to food, and you see the dilemma. Nothing sweet, nothing that could come from a bakery, no take away or fast food, no chips, very few processed foods and no condiments. Only 2 types of cereal available for breakfast - and portion sizes that make a hospital meal seem somewhat generous in portion size.

Considered thinking is: I have at least another year to go like this, maybe 2 - such was the state of my health. This conclusion was arrived at following another trip to A&E last week, or the week before, on the advise of my Cardiology NP because my memory and cognition had almost switched off. Apparently, I was asking my daughter for the name of her youngest son, after having spent a few hours in his company interacting with him!

So each day, I get up, get myself up, washed and dressed (if I remember all of the duties attached to hygiene etc), and assemble my breakfast of a bowl of cereal that I have with my Pepsi Max. My day then consists of me sitting in my chair or walking to the garden and watching the flowers for insect activity. On good days, I try to do some washing up, and make any phone calls that need to be made. I try to do some exercises as well - but too much activity or thinking can leave me drained like a rechargeable battery that has been totally used up and in need of recharging.

And then, I go back to bed! I don’t lay on my side or sitting up, I lay in exactly the same position you find yourself when you wake up post operation - except my bed is totally flat. And that is how I spend the night, either awake or asleep, according to how lucky I am.

If I’m lucky, my wife will agree to go out in the car and I get to get out of the house and have a ride in the wheel chair, or I get to visit the viewing point for the Port Of Felixstowe, or see my daughters and grandchildren, where we can play Guess Who? 😏

When I signed the consent form for the operation, none of this was even considered, let alone voiced. My choice was simple, die or operation and hope for the best. Well, I survived, but I do question whether it was worth the effort some days. The stresses on my wife and daughters to help me through the days and nights was not part of the plan and is taking its toll. I am existing, but not living. I realise that I am luckier than a lot of people - but it doesn’t stop me feeling like a drain on society, on family and on the NHS Resources - all of which could be used to help some one is able to give more back to society.

I live in the hope that things will get better, and I can justify the efforts of all at Essex CTC and the local NHS bodies by contributing to society again. One day, I might even be able to eat Fish & Chips again, or a Sandwich, or have a cup of tea - but in truth, I’m not missing them. I would also like to think that I can make use of my camera again and create images that I like and am happy to share.

Most of all though, if the statistics are right, for all those surgeons cautions about ‘1 in so many could experience this or that’ - I took on all those complications for one hospital last year, which means loads of others benefitted - statistically - from my poor luck. That at least gives me some satisfaction.

It’s just that I had hoped, expected even, to be enjoying the weather more and also getting out and about in the car, on my bike and taking pics with my camera of the amazing sights Suffolk has to offer. Maybe next year.👍

[Chappychap]

It's brave of you to post. You may feel that your world has shrunk, but there's still an entire universe for us to explore within whatever perimeter life throws around us.

The very best of luck for the coming year!

[Hidden in reply to Chappychap]

Thank you, I know you are right, and try to think that way, just sometimes...

[jeanjeannie50]

This post contains your honest thoughts on how you are feeling right now and I have a lot of respect for you for having the courage to share your feelings with us here.

Having worked in a nursing home and seen what some people have to live with. I've made my wishes known to my daughter what I will and will not put up with should my health deteriorate below a certain level.

You will always have us here on this forum to talk to and lets face it we could have some lively conversations and laughs, on so many different topics.

I'm lost for words on how to comfort you, but if you can still type there is the thought that you could give written support to other people. You have expressed your thoughts so well in your post, I think you would be good writing to others. There are so many lonely people in this world who would love to have a typewritten conversation with someone. Could that someone be you?

Wishing you well and sending healing thoughts your way.

Jean

[Healthyheart1 in reply to jeanjeannie50]

That's a lovely thought Jean, regards Sheena x

[Hidden in reply to jeanjeannie50]

I try to be supporting and encouraging on here. In terms of writing to others - maybe in the future, but for now, coming on this forum is as much as I really do. I have a look at Twitter sometimes for fun, just to see what people are getting upset about that day, but otherwise I keep things light on the mind.

[Hidden]

Hello

What an awful lot you have been through

Your family love you unconditionally just like if this had happened to them you would to , you are not a burden to them you are someone they love that they are grateful that they still have you around

I sense deep down you are a strong character and even though some days seem such a struggle I think you will keep going till you do get a better quality of life back again just some days it may not feel like you will but do not give up hope you are still here and that says you still have things you need to do so keep going and know you are much loved by family and friends and they would be devastated not to have you around , keep pushing forward you will get there x

[Hidden in reply to Hidden]

Thank you, I know I'm not a burden on my family - they've made that clear in conversations discussing the visits they had to make to say their goodbyes because I was not expected to survive the day or night. I think I am struggling to adjust to the idea that I will not get my old life back. It's the idea that I will never be able to work again or become totally dependent on someone else to get me out of the house. It's that independence thing - the thing that we as humans treasure so much.

[Hidden in reply to Hidden]

Hello

I get the Independence thing must be very hard to try and adjust to but you did survive and I believe everything happens for a reason you are still here and you may not see it now but there is a reason a purpose you were chosen to survive , your job is not done on this earth there will be something in the future that you will draw from all this that will make you realise this is what I can now do x

[Hidden in reply to Hidden]

And there, in that paragraph you explain my life philosophy. I've always said the little things we choose, but the big things seem to be 'ordained' - I'm not religious, I've just seen to many things that have defied logic or assumed outcomes!

[janeytrace]

Aww what a struggle thankful you have some glimmer of joy having family around you. How brave you are and hope you find good health and get to do the things you want to.

[francesw47]

How brave to post in such an honest and open way. You are still here, and your post shows that you are fighting to improve..and I would hope that over the next year improvements happen and you can do at least some of the things you mention. All I can say is hang in there and keep fighting - and we are always here to listen.

Frances

[Hidden in reply to francesw47]

Thank you.

[MONIREN]

You sound like a fighter, just now exhausted from your fight so far. Hate that you have been through so much! Life can be so unfair. We are here to be a listening ear and to cheer you on to fight longer!!

[Hidden in reply to MONIREN]

Thank you, it's why I like this forum.

[080311]

Morning Brad,

Reading your post as made me take stock. You have written so well expressing your feelings and hopes for the future. You really are an inspiration, I remember talking to you about the op before you had it and as you say we sign the forms with fingers crossed.

I do read everything you post and you are a fighter and will get to do some of the things you talk about.

I send you and your family very best wishes

Pauline

[Hidden in reply to 080311]

Many thanks Pauline. I hope things are going well up north, I know things are not easy for you either.

It was just the reminder that Sunday was the 1 year anniversary of it all kicking off big time. My wife and I spent most of the afternoon recounting the various aspects of my health care over the last year, with my daughters joining in via text occasioanally.

When it was presented to me in such a way, it made me realise how much had happened, how much had changed, how much may still change and how little of these changes were conveyed as a possible outcome. It is fair to say it was a tad overwhelming.

The sad thing is, in 2 weeks time, I will probably have forgotten that I ever wrote this piece unless I have a look back at my profile and posts.

It's amazing that I can remember everything from my time in hospital here, and Basildon, even the 'alternate life' I lived whilst in coma and under sedation. My wife was totally amazed at how detail I could give about our '2 weeks in Hong Kong' - where we stayed, where we went, what we ate, the trips to connect with her family on her mums side, or visit where she grew up.

But since coming home, I have almost no memory of what has happened. I try to keep a journal so I can look back and refer for conversations etc. We went to the refuse trip yesterday - it's a 20 minute journey each way. When we got home - I could remember we'd been to the tip, but could remember nothing else - and still can't! Amazingly, I no longer seem to be bothered by it. I seem to accept it as part of my current life.

Responding to these posts will use up just about all my 'mental energy allowance' for today - the rest will involve sitting in the garden watching the flowers blow in the wind and seeing the various insects visiting them. Strange - as a child, I loved doing that - seems like I've gone full circle.

[080311 in reply to Hidden]

Oh Brad, I have a tear in my eye. Sometimes life can be so very cruel. I know sometimes I write to people who have just been diagnosed that the life they new as flown out of the window and a new life as flown in, but your new life is really unbelievable.As you know or maybe you have forgotten! John my husband had a huge stroke 5 weeks after my surgery, life for him as become very difficult apart from his left side he lost a lot of his sight, I remember being told in hospital and being more worried about his arm and leg but it’s the sight that as caused the most problems.

But this is the hand we have been dealt, our youngest son managed to come to see us a few weeks ago for his 80th birthday, he lives on the south coast and every time he booked a flight he had to cancel with a change to the rules. He is used to seeing his Dad on FaceTime but seeing him in the flesh after 19 months he was upset how frail he is.

We still laugh thank goodness, sometimes the observatory of some situations just as us laughing 😂

I wish you and your family better times ahead you keep plugging away.

Best wishes Pauline