Handhold, in HDU with respiratory failure and terrified

[Seafour]

Just that, is anyone awake?

Can I ask a (probably silly) question? How come your resp rate could dip as low as it did at home on the ventilator? I’d have thought the whole point of it was to stop that being able to happen?
Very sorry you’re so poorly btw. I hope there’s something good on the breakfast trolley

Chestynut I don't mind anyone asking any questions, knowledge is power after all.

I don't have a tracheotomy, I should have because my diaphragm is completely paralysed so I'm always at risk of respiratory arrest. Part of the back story is that it took ten years to diagnose my paralysed diaphragm so I didn't progress through the medical system in a usual fashion and nobody medical can explain how I survived an unsurvivable condition for so long.
When it was diagnosed I became the respiratory medicine depts pet project, everyone had an opinion and lots of consultants saw me as an interesting pair of lungs that happened to have a body attached. At the first MDT meeting there was a split of opinion and this was fed back to me as "we haven't decided what to do with you yet" I was told decisions would be made.

I sat and listened to the conversations going on at the end of my bed and then explained in plain English and without foul language that my body might be broken but my brain wasn't, life is hard for me, did I want to complicate it further by dragging a ventilator around for the rest of my life, simple answer NO. My logic is that they can't explain how I lived for ten years and they can't say that I won't live for another ten or even twenty before I need a tracheotomy and a permanent ventilator.

So I'm ventilated on BIPAP the machine takes over my breathing completely while I'm attached to it, it's the only time my lungs get fully inflated when I'm awake I breathe using my intercostal muscles. I ventilate for about fourteen hours out of twenty four, leaving ten hours to do everything else.
The pay off is worth it and it's my choice, I have a supportive consultant who has come to respect me. In return I listen to him and evaluate what he has to say and then do what's right for me. That was never more important than when it came to leaving hospital, general medical opinion was that I shouldn't leave HDU, I'm critically ill and at risk of dying therefore I couldn't be discharged it wouldn't be safe.
Well I didn't agree and did swear, in the end we reached a compromise and I'm never discharged from HDU and we have a clear set of rules regarding when I come in and it's always by ambulance under blue lights.
Having me has been good for the hospital, they now have a medical HDU and a dedicated Acute Respiritory HDU, my second home, I felt honoured when I was invited to cut the ribbon when it opened last August.

I think it's very easy for Drs to forget that there is a person behind the symptoms, I get to see some harrowing things from my bed, there is currently a sweet old lady in her 94th year fighting to take off the mask forcing oxygen into her frail old lungs, family around her bed quite clearly flooding her with love, compassion and care. But she keeps repeating "I don't want this, please let me go" I understand that she's ill and confused but nobody's listening to her. I hope she recovers but I've come to learn that it's unlikely and whatever independence she had will be hugely diminished.

A Dr asked me recently why I have such a cavalier attitude to my wellbeing, my answer is simplistic "medics don't have all the answers, I survived an unsurvivable condition for ten years, ten long years when the medical profession let me down badly but I didn't die because it wasn't my time to go, when it is I will know just like the 94 yr old lady, she knows and for her the process may be prolonged and because of that she might be denied the peaceful end to a long life.

User145 no need to apologise it actually made me chuckle because I used to run my own business consultancy and had an actual PA, it conjured up a beautiful image of the old me dictating a letter from my hospital bed

You're awesome, I'm loving reading your posts, keep on writing them please. Much love, luck and strength to you 💐

You are so brave OP It sounds so distressing, and I'm only sitting here reading ...not living it. You're attitude to it all is amazing

Spamfritter my resp rate was off the ventilator, because I'm not permanently ventilated we have a set of checks we go through every time I come off it. Oxygen saturation, resp rate, bp, we listen to the air entry and score accordingly. I have to be well enough to breathe safely but for me over the ten years I was undiagnosed there were many many occasions when I was critically ill and my GP was happy to prescribe antibiotics over the phone.

If the score says so we dial 999 and let the ward know I'm on my way, a respiratory doctor and nurse meet us in resus and they stabilise me, I then either go straight to HDU or stay in resus with a respiratory nurse until there's a bed. The system works well, I've only once spent a night in resus.

Gosh op bloody well done on getting drs to listen and make changes. I was in hospital once with a 94 year old who had a uti. She decided she didn’t want treatment and staff were wonderful. They closed her curtains and ensured she was fully aware of the implications of her decision. They made her comfortable and called in family. It was really humbling to watch. Nursing with dignity and respect-how it should be. Hope you stabilise soon.

Haggis unfortunately all too often families dictate that "everything possible has to be done to save granny" and the medics have their hands tied by what the family wants. Just because we can extend life doesn't mean that we should, in my opinion.

Seafour sounds like you eventually got a fantastically supportive team, I’m pleased you have been supported to make the right decisions for you.
After all it’s you that lives with the condition day in and day out.
Did they never find the cause?

That poor lady in your bay
Decisions should be based on quality not quantity and sounds like she’s had enough.

Wow.
Thank you for taking the time to write that, it’s fascinating and sobering. I’m glad you have good people are you today; I hope you continue to feel better as the day progresses x

What an inspiring woman you are Seafour
Hope today sees more improvement and a greater ability for tea drinking - not the too-milky kind, we demand a proper cup of tea for you

Humbled Seafour. What a journey. Did you get anything nice for breakfast?

I confess to being a milky tea drinker - it's basically milk with a drop of tea.

I find your posts fascinating and I hugely admire your outlook on life.

I look after children who are in BIPAP and who needed non-invasive ventilation, (I work on a continuing care team), I hope we bring as much to our families lives as your PA brings to yours. We have recently been in talks about renaming our roles as we are currently called Specialist Nursery Nurses but no-one can come up with a job title that describes what we do.

I hope you are home as soon as you can be.

You write very well about your life with warmth, self-deprecation and humour. It is very humbling I have to say.

Chesty my diaphragm was paralysed when I broke my neck in a surfing accident, I made a decision not to take up the offer of an air ambulance and went to the pub for a desperado instead. It's a long story and I promise I will get to it.

Threewheeler tea is sorted and I have my own big mug that they keep in the staff room.

Festive I nibbled on toast

Oddsocks I will have a think about an appropriate name but I'm full of admiration for what you do.

Apollo why thank you, your comments have made my heart skip a beat.

When I was on low carb bootcamp a number of people were urging me to start a blog and I do think about it often, I kind of like being anonymous at the moment, I have no desire for public scrutiny and the inevitable unpleasant comments that come from going public right now. As always I'm interested in what the MN gurus think?

Today I have had a shower, I smell so much nicer than I did, I hadn't realised how much vomit was in my hair.

My consultant has agreed that we can now manage at home as long as I only come off ventilation for essential breaks, but I have batteries which means I can go anywhere and do anything. Steroids, antibiotics constant SATS monitoring and I'm packing up ready to leave.
I need to get home to Lola

I am so pleased you have been released before the weekend! Yay for batteries, steroids and ABs.

Home and been asleep since I got here, no Black Friday shopping for this lady

@Seafour

Why have you stopped posting on the low carb bootcamp thread?

I wondered where you had gone!

Hi scfi I had some problems on the bc there was someone there who accused me of being a fake/fraud claiming my story was untrue. I don't need that in my life.
I won't lie, it upset me deeply - there were tears but one thing I have learned is sometimes the best thing to do is extract yourself from a situation that is hurting you. I don't have the head space for messages that upset me.

But I'm here now

You are bloody amazing Seafour, I hope you know that. When life throws shit at you it can go one way or another and you have looked it in the eye brave as fuck and with good humour.

PS I also have a Lola, but she's an overweight Labrador cross, currently snoring on the couch. I can just imagine how excited your Lola will be to have you home

Thank you for your openness Seafour. I’m going back to nursing next year, and you’ve reminded me how important dignity in end of life care is. You’ve also reminded me to re-learn my oxygen provision!

So the background timeline:

Strange childhood, neglect, abuse, Married twice to abusive men, shit relationship with my parents but fought hard for my independence and career.

1999 Five kids from two dads, provided a nice life for us but after a number of years alone I decided to dip my toe.

Met my current dh when my dc's were 5,9,15,17,19 he was a single parent with sole care of his four dc 2,3,4,6 in autumn that year we combined forces and shoehorned the youngest seven into his home. What could possibly go wrong.

We were permanently skint, childcare bills, school shoes, Christmas

We moved to a wreck of a house trusting that we would be able to do it up eventually.

2006 we married

2007 we started project build and in August went on holiday as we did every year with close friends for sun sea and surfing. Someone surfed into the back of my neck and knocked me out, rescued by some lovely lifeguards who did try and immobilise my neck and urged me to let them send me to hospital. But I felt ok and there were the kids and we'd driven hundreds of miles in two cars and going home in a few days and a million other mundane mum things that didn't really matter that much went through my head. So I went to the pub.

The next day I had a fizzy painful feeling in my right thumb, I did see a gp, got some painkillers and anti inflammatories swelling and bruising in my neck caused some pressure on a nerve, happy with the explanation went on my way.

By the day we were due to go home the fizzy, tingling pain had consumed my whole arm. Cue the worst car journey of my life.

Home August bank holiday weekend a building project nearing completion, first grandchild arriving any day, six teens to get ready for return to school university and a new contract for me to start in London.

I went to my gp, physio, got a slow referral to a spinal consultant and eventually seven long painful months after the accident had an MRI scan. Turned out to be a dick shit of a consultant because he said there was nothing wrong with my neck but did ask about my lifelong lower back pain and showed me a huge disc bulge at c4/5, he did say " if you ever wet yourself, treat it as an emergency" and advised me to see a shoulder specialist. By this time I had an arm that was agony and all but useless.

Sorry to drip feed - tired, more later or tomorrow

Sandunes there were so many people along my journey who could have spotted the signs but I'd say the single biggest clues were not being able to breathe properly lying down and lots of nurses must have guessed at my resp rate because it's really slow but was never documented or commented upon.

Luckily I’ve never been taught to make a guess at clinical observations, but most of my career was in theatres so we were at ITU level. But you’re right, guesses or maybes do happen and it shouldn’t.

You are one very very brave person