Handhold, in HDU with respiratory failure and terrified

[Seafour]

Just that, is anyone awake?

Considering all that you've been through, I wouldn't be surprised if you didn't believe in a higher power, a greater purpose, fate, destiny (call it what you will) but regardless of all that, does well it's not normally something you survive make you feel like there's some reason you're alive?

If nothing more this thread has reached people. I'm recovering from a nasty case of pneumonia but I took a walk with my family today & my brand new nephew. I could only manage 15 minutes and I was exhausted but I thought of you as the icy sea air hit my lungs and I appreciated the ability and the moment so much more.

Bobbi thank you for thinking of me on your walk, I miss the sea so much but sand and wheelchairs are never a good mix. I hope your recovery continues

We will get onto why/how I survived but there's some more harrowing stuff to come first.

Always hard to loose pets who have been there for you unconditionally.

Keep posting you inspire me and I love you x

@Seafour I'm thinking about how much you've inspired mumsnetters with your post. Imagine how many people you could inspire with a book...

And yes, I do believe your writing is book-worthy. I would never have guessed you left school at 14.

I admire you. Your former "friends" are chumps.

I too love they way you write, I'm going to look for the lowcarb boot camp

@Seafour I just read your whole thread and I am so humbled by it. I've been glued to your every word since half 6 this morning while getting ready for work and I'm going to be late now!

You write beautifully and I wish you all the best in the future

The reality of my predicament slowly began to sink in, I took to the internet but there wasn't a whole heap of information out there, was it just a bit paralysed like other bits of me, with some residual function. I assumed that had to be the case, the respiratory doctors included me in their daily ward round and I asked for a meeting with one of them and the ward manager.

It was clear to me that lung volume recruitment (which I couldn't do alone) was keeping me conscious at least and possible alive. It was still not being done methodically and the result of one missed session was me in a semi conscious state unable to even press my call bell, two missed sessions and I was in real trouble. Coming back from an episode like that was like dealing with the worst hangover you've ever had.

Assurances were given, nothing changed and one morning my dd, concerned that she'd been phoning, texting for two hours with no response telephoned the ward and asked if I was ok. She insisted on speaking to a nurse who said I'd had a very peaceful night and was currently sleeping. She wasn't happy and asked the nurse to wake me and have me call her, she didn't, she must have felt completely helpless. A lovely hca was sent to wake me, she couldn't, two rounds of volume recruitment had been missed two lots of anti spasmodic and pain relief medication too. I felt as if they were trying to kill me, it went way beyond sloppy care or late drug rounds it felt completely unsafe.

I was assured as soon as an HDU bed was available I would be moved, I begged to be allowed home with oxygen in the meantime but I was told I was critically ill and had to stay. I remember saying to one doctor " if this is the best you can do for a critically ill patient, the mortuary must be overflowing with us". The respiratory doctors were lovely, they treated me like their most interesting patient ever, meanwhile I was stuck on a ward where a sloppy attempt at covering up mistakes had been made ten years earlier, there was resentment among some of the staff that I'd sued the hospital for sure but in general there was little leadership.

I felt as if I wasn't going to get out alive, that probably sounds a bit dramatic but I'd been stuck there for over a month and there had been issues about my safety most days. I didn't want special treatment, just enough care to keep me alive. My PA was coming in each day, dealing with all my personal care, dh every evening, getting me ready for bed and ensuring my legs and right arm were correctly splinted but I still didn't feel safe.

It was a Wednesday, 3:00am volume recruitment was done, oxygen wasn't put back on, 6:00am volume recruitment was missed, day staff came on shift and I got shouted at for taking my oxygen off, 9:00am volume recruitment was missed. My PA arrived did extra rounds of volume recruitment and asked for the oxygen to be increased in line with instructions given by respiratory doctors, it wasn't done.

I was drifting in and out of consciousness and in my lucid moments begging my PA for more oxygen, it must have been awful for her. She went to the ward manager but was told the nurses knew what they were doing.

Shortly after 11:00am I stopped breathing, complete respiratory arrest, if my PA hadn't been with me nobody would have noticed. The nurse running my bay started chest compressions saying she just needed to get the co2 out and I'd be fine, no emergency button pushed, no real attempt to save my life. I don't want to insult any of you lovely people but co2 builds up in your blood you can't push it out of someone's lungs by jumping up and down on their chest, the fact that a nurse with over fifteen years post qualification experience didn't still leaves me speechless.
PA and an HCA jumped into action, one going for the ward doctor the other pushing the emergency button. HDU doctors arrived, dh was told to come NOW, a bed would be ready in HDU in two hours. It wasn't until the night shift started at 7:00pm that I was moved, it transpires that HDU had called the ward numerous times to find out what the delay was.

If breathing had been difficult before, I was now doing it with very bruised ribs. The difference in care between a normal ward and the one to two nursing I now had took a while to sink in, I was completely wired most of the time, just in case something was missed. My co2 levels were so high that they needed bringing down slowly, I would need a ventilator overnight and for periods during the day but all the symptoms that had made my life hell should go and I could live again.

I couldn't wait, bring on the ventilator.

OMG the comments from you lot make me cry. Fandango, sorry tell your boss to rtft if he/she moans about you being late.

Every day you lift my spirits and make me want to believe that I won't be lonely forever but I don't know how you go about forging new friendships when you're in your 50's but I guess that's another thread.

Goodness. You have been through the mill. Sending you best wishes and

I just want you to know that I have read it all and you are amazing for living through so much unbearable pain. I am sorry that you were let down time and time again by professionals who should have taken better care of you. Keep going, you can and will do it. Good luck for your upcoming surgery on the 6th. Lots of love xx

I'm finding myself holding my breath reading this Seafour not a clever idea when I have heart failure!
I remember seeing a photo of you dressed up in all your finery, a beautiful woman with a radient smile, and when you first got Lola too.

Daffy please no breath holding on this thread and thank you for the kind words.

So I started to get answers and I was so excited for the future.

The first attempt at ventilation lasted all of five minutes, it caused excruciating pain in the back of my head, a symptom I'd actually had all of my life but usually brought on by using nasal sprays, diving and suddenly bending forwards.

I was learning more about my condition, I was certainly a freak show, everyone wanted a peek, prod and to hear the story, it was exhausting. The respiratory arrest had left me with awful anxiety and I was terrified of going to sleep.

The second ventilator was better but brought my co2 down too rapidly and I went into respiratory arrest again. Following that episode I stayed awake for almost 36 hours some of that time on the ventilator but a lot of it just completely paranoid, I thought I was losing my mind.

It was difficult for the doctors to understand exactly what was going on, there wasn't a text book for this one. The twenty minute sleep cycles were easily explained, I go to sleep, enter rem sleep and as my body enters into deep sleep I stop breathing completely. My body had somehow developed a way of waking me at the point of entering deep sleep, it's how I stayed alive. I felt hugely vindicated that my sleepiness wasn't caused by medication, depression, laziness or the frequent accusation of overuse of opiates.

Being ventilated felt wonderful when it was working well, to watch my rib cage expand was so weird and made me wonder why nobody had ever thought it strange that it didn't. The excruciating head pain was still a problem but not all of the time, the biggest issues were with clearing the ten years worth of secretions lurking in my lungs, I don't cough well so quickly became best friends with the suction machine and would clench the tubing in my fist just in case someone moved it out of reach.

I had an evaluation by the Speech and Language Therapist who confirmed that I have no effective cough reflex and a very poor swallow.

Enter a state of the art ventilator that could work with me, respond to my body when it stoped breathing but wasn't quite as forceful when I could make some effort myself. It was better but by this time my head was completely fucked and I felt it was fast approaching the time when I would have to be permanently ventilated. Enter the nurse who sat with me and held my hand, she promised she was going nowhere and every time I opened my eyes she was still there. But I slept eventually for the first time in ten years, proper sleep, not a semiconscious fog of co2 but actual sleep. I was woken for my early morning medication and completely freaked out.

I was totally confused, my bed had been moved during the night, I was in a different place, same nurses but completely different surroundings. It didn't matter how much reassurance was offered I was adamant and now I was also convinced they were trying to fuck with my head. It was terrifying. It was my youngest dd who started to unpick what I was experiencing over the phone, I told her I'd gone to sleep in a bay with grey walls and standard nhs curtains in pastel colours, grey blanket on the bed and woken up in a bright blue room, blue blanket and brightly coloured curtains. She slowly talked me down, spoke to the nurse in charge and between them convinced me that I was simply experiencing a significant reduction in co2 levels and it was changing or restoring the way I was seeing colour.

I've been following but not posting. You write so eloquently and quite frankly reading about all these failures makes me embarrassed to be a part of the NHS.

I've followed this thread from the beginning and your strength of character absolutely amazes me. I'm 35 with terminal cancer and although the chemo I'm having to try and slow it down is rough this thread makes me realise I still have things to be grateful for. Yes, it feels like I'm climbing a mountain when I'm trying to get upstairs but as slow as I am my legs do work and I can get about.

Sending you all the love and luck in the world, and don't give your so called friends a second thought. I would be proud to know you and can't understand how people you have spent so much of your life with could just abandon you. It says much more about them than it does about you x

Polkadot there is a lot of good in the NHS but unfortunately there is also a lot of complacency and weak management, resources are stretched but most of all people don't listen.
There were so many clues about my diaphragm along the way and lots of nurses who did obs on me and recorded a normal respiratory rate, they lied and that's really sad.
Maybe that's a training issue and student nurses don't understand the wider implications of not recording respiratory rates accurately.
Some of my symptoms were easy to write off as side effects of medication, depression, neurological but the constant accusations of deliberately taking too much morphine hurt a lot. It was carefully controlled at home, every dose recorded but nobody listened.

I also firmly believe that there are some people who are attracted to caring professions because they have a need/desire to have control over weaker people if that makes sense. I'm sure every nurse, doctor, hca has encountered someone with an attitude that's less than caring. Usually that behaviour is checked by the other members of staff, mentors, training etc, those people will either change or leave.

The situation becomes dangerous for patients when a person like that is in a management role and able to recruit people of a similar ilk, you can end up with wards where caring for becomes secondary to controlling patients. I've experienced it firsthand, I've watched people in agony denied pain relief for no good reason, people humiliated by denial of help with toileting and downright cruelty just because.

I'm not angry, I'm hurt and confused, I blame myself for not googling my symptoms properly but I would love to be able to help change things but I'm too busy trying to survive.

Purpleunicorns I'm so so sorry about your cancer, that must be so difficult. I try not to think about my future too much, I live each bit of each day at a time, if I'm able to get up and dressed that's good, if I make it downstairs that's good, if I eat that's good. It's just about living life in little chunks and trying to do something joyful each and every day.
Huge hugs to you

The next instalment - It's all about colour, photos and sleep

I began to feel the benefits of ventilation, I was awake more and when I was awake I was more awake, it felt nice, I was excited about what lay beyond the hospital.

The discovery that I have been living in an altered state regarding colour was causing me an awful lot of anxiety.
Way back in 2007 when I injured my neck, we had just come to the end of a year long building project and I was excited about obliterating the builders magnolia and filling my home with vibrant colours and decoration. It never happened, I was too ill and we didn't have the money so when we had the house adapted for my wheelchair and doors had to be widened of course everything had to be redecorated too. I went crazy on Pinterest and had mood boards a plenty. I had consulted and overruled dh on all decisions that involved wallpaper, paint, tiles and flooring. My decisions had been bold, very bold in places and I was now quietly crapping myself that waiting for me at home was a crazy woman's psychedelic nightmare. There was also my studio where I dabbled in missed media art and had a large fabric stash for quilting, I had visions of needing a skip.
People had been complimentary about the house and my art but were they just being polite and quietly thinking "bloody hell, what the hell is she on"

I spent hours pouring over every single photograph on my iPad, laptop and phone, I cried all the time, I had missed the delicate translucent skin of my precious newborn grandchildren, their hair wasn't the flat blonde and brown shades that I saw, it was streaked with shades that had been invisible. My garden which hadn't been part of the adaptations was redesigned by my youngest dd and was breathtaking and the photographs from NZ, although I knew it was the most beautiful place on the planet I was now seeing it properly for the first time. I developed an ache deep inside my gut, a desire so strong that it causes real physical pain, I have to go back, I have to touch, see and smell but for real this time. That pain is with me every single day, I have to go back.

I spoke early on on this thread about my battle to leave hospital so I won't repeat it here, I left hospital still not friends with the ventilator but excited about the benefits it was bringing. The weeks in HDU had done me no favours in terms of recovering from the spinal correction and when not in bed I was wearing a rigid cast from under my bust to the top of my pelvis, there was a long road and a lot of hard work ahead. There were no immediate plans to carry out the second part of the surgery and that meant my spine would continue to move.
I went into hospital able to walk a little bit at home with crutches but seven long weeks in bed had definitely taken its toll on my muscle tone which hadn't been good to begin with.

Going home was scary for my family, there was ventilator training, resuscitation training and we agreed on rigid monitoring. I got my own suction machine, monitors, essentially a mini HDU to be set up at home.

Sorry forgot to proof read that one so omitted the sleep section.

I was hooked on sleep and I could wake feeling refreshed too, it felt wonderful and with the ventilator on I could lower the back of the bed and sleep in a semi reclined position after ten years of sleeping almost bolt upright, it was bliss.

What did your house look like when you got home?

Love reading your posts and learning more about your journey. I think we can all learn from you, to stop and enjoy the moment rather than rushing through life

Going home was wonderful, the house wasn't a nasty 70's throwback but it was hard, not having a nurse on hand 24/7 and silly things like finding places for equipment so that my bedroom is still a bedroom and not a mini hospital.

I confess to tossing a fair bit of mixed (not missed) media art but was relieved that everything else was vibrant and bold but not too mad librarian meets rainbow diarrhoea.

I was frustrated by how weak I was, how much time I needed to spend on the ventilator and how bloody tired I still got.

DH was working long hours and then had to come home and take responsibility for night time monitoring, the recommendation had been to have waking night care but that would mean separate bedrooms and we had been there and done that and it was hugely detrimental to us as a couple.

Bloody hell Seafour.... I thought I'd had it bad but this makes my asthma and screwed up spine seem like a walk in the park in comparison! You are the strongest person I have ever had the privilege to hear of - you've waded through deep, deep shit but you're still fighting, you're still wading, and I don't know how you do it. Keep on going, and hang in there.

Wow you have been through so much. Sending much love.