Handhold, in HDU with respiratory failure and terrified

[Seafour]

Just that, is anyone awake?

I started reading this thread this morning and only got halfway before I had to leave for work. I bookmarked so I could catch up as I was totally blown away by your story and had to know what happened next. You have had such a thoroughly difficult set of tragedies befall you that it is quite remarkable that you can write about it so eloquently and without the total bitterness you would be justified in feeling. Your compassion and resilience shines through and I mean this sincerely when I say you are an inspiration. Your humour and personality is fabulous so I shall continue to follow and hide at the back of your bus.

From my own experiences, there are 2 places where nursing care is exemplary, they are resus and ICU (and any ICU nurse dealing with me when I land there has my deepest sympathy, I'm hell on earth to deal with and there's nothing I can do about it because the meds that save my life also cause the behaviours). The problems for me have always started when the staff are no longer fighting for my life, the people who take over appear to be allergic to reading notes/allergy bands/medical alert jewellery.

Zen easy mistake to make in these times, I thought you were identifying as an actual Zen Nudist

Wow. I don't have any words after that story! How are you still going, you really are amazing. I will never complain about my arthritic feet again. (Well I probably will, but I'll think of you while I am complaining).

Sorry for asking, but can you walk at all? And you can breathe a bit by yourself then need the ventilator for a while? Does your arm work now? I'm trying to picture you without seeing a picture of you. Not that it matters to me what you look like but it makes you more real.

Whenever I hear a story like yours it makes me think how healthcare is so much about luck. You get a good consultant or a good gp who refers you to the right place quickly, or you don't and you struggle for years. And if you're not determined enough, or you're not able to research and understand and hold a whole lot of information in your head and process it while in pain then you never get the care you deserve. And that's not fair.

We've all been really lucky up till now in my family. I went to the gp with a sore foot and was diagnosed with rheumatoid arthritis within 3 weeks. I have a great consultant who is really forward thinking and willing to consider different things and willing to listen to what's important to me and work to make that happen. I am so lucky. But it shouldn't be about luck. It should be the same for everyone.

I've followed this thread with bated breath and I think you are amazing. Truly amazing.

All the adversity you have faced and you never gave up.

My question may have already been asked (and answered!), I am just wondering how your DD's disability explained your excruciating head aches?

I've just read your whole thread. You're incredible Seafour, absolutely incredible. I'm so sorry your so-called friends were so awful. You should write a book, you write so eloquently. I'm completely in awe of you. I'd like to join the bus too, if that's ok. I won't bring cake, I'm not a very good baker so I'm fairly sure you'd be grateful for me not bringing cake I can bring some booze though!

Can I ask about your Chiari malformation? What symptoms do you have that are related to it and is there any treatment for it?

Sending you and (not made by me!)

Fuckity Fuck Sea you've made me cry too with your third to last post. I so wish these same things for you.

I've been a veggie (mostly) since aged 11, when my school walk included passing a butcher shop. The young store lads would take great pleasure in swinging half cows/pigs/sheep right towards me, in all their blood-dripping glory. That put me off meat for life! My poor DM was not amused. Serving dinner nightly to a table of 7, she had no time for me being precious, so she'd plop the plates down - typically pork chops, mince, sausages (always meat) in front of me and I would cry. Loudly. Every night. Looking back, I'm surprised she did not ban me from the table. My siblings loved it. They'd fight to snatch up that extra meat, and eat it before you could say boo to a goose.

@Seafour up or down graded is fine by me !
I'm pleased that you've started a ban for the bus ,I've a few I'd like to add but I'll start gently with anyone who owns a pair of judgypants for now !
I hope you are feeling as well tonight,I look forward to hearing more about you when you've the energy

I'd assumed you were a Zen Nudist too ZenNudist, apologies.

Ah Seafour you know you can help DS, he has to help himself.
Though it must be difficult to say no to him.

My friend is an ICU nurse so I wouldn't make generalisations about HCPs but that aside I experienced truly shocking treatment during a hospital stay a year ago.
I complained and got the usual trite response, I was too ill to take it any further because they'd left me in considerable pain and still ill.
Anyhoo...this is not my thread but it's leading to my first questions, they are genuine ones @Seafour how did you find the strength physical and mental to make a claim against the HCPs who mistreated you? How did you find advice on how to pursue that claim? Did the hospital/surgery try to placate you or attempt to evade your claim?

@PinkSparklyPussyCat quality, not quantity. I'm sorry for your loss.

Will reply in detail, just lost a massive reply to everyone when the dog jumped on my iPad (not the shiny new one) and my battery is on 2% (iPad battery not mine)

I'll join you on your bus Seafour, I've been following your thread and I'm just in awe of your strength and positive mind set.

I'm not a great baker so I'll bring the crisps and gin

Pinksparklypussycat we need sparkle definitely. You did right by your mum, don't ever doubt that, you acted on instinct and that's the best way.

Diangled I'm so pleased you have a good legal team, I do hope they have secured you a good interim payment to make sure your dh lives out what time he has left worry free. It's lovely to hear that your boys are being supported too but I would urge you to still check out Winstons Wish, their support is for the whole family and won't have an end date and they run fabulous residential courses for kids who are grieving, you can never have too much support lovely.

Wittyname your on, welcome aboard

Stop thank you for the lovely words, have you shown your dh this thread? I'm sure he and you are all too familiar with this kind of story.

Piglet welcome and thank you for the compliments, what's happened since my neck injury is indeed tragic but even before that people were telling me I should write a book about the absolute crap that had gone before, little did I know that it would get so much worse. Bitterness, anger, hatred are emotions that hurt the person projecting them most of all so I certainly don't need them, or it could just be that Pollyanna was my favourite book when I was little, I read that book over and over again, I guess some of it rubbed off.

Andro I recognise the crappy handover scenario for sure which is why I insist myself, dh, pa or dd are involved in every one. I also have a laminated copy of my health passport, written by me, signed by my consultants, physiotherapist and GP and every handover starts with it being read out loud. I don't care what's written in their handheld gizmos, I can't read it, didn't write it so it could well be wrong. If any nurse disagrees with me and claims they have all the information they need I smile sweetly and inform them that I use a wheelchair because hcp did get it wrong, then swop to my resting bitch face, which I do well.

Knitwit I'm glad to read that you got such a quick diagnosis and have a fabulous consultant.
So I retained use of and some feeling in the front of my legs above the knee, that means I can do a standing transfer, with AFO splints and two elbow crutches (right one strapped to my hand) I can walk after a fashion, it's not pretty or very functional and very painful. I have limited function of my right arm, little fine motor skill, can't lift it above my shoulder and my wrist is quite floppy. My arm is very painful, all the time.
I have very poor trunk control and a very limited range of movement in my head and neck.

Crunchymum hi, my dd has a genetic condition called EDS, after her diagnosis I was also diagnosed, the head pain (definitely not headache) is caused by chiari malformation, a defect high up in the spine, near the base of my skull allows my brain tonsils (yes they are a thing) protrude down into the space at the base of my skull and that presses on the spinal cord and allows a disruption in spinal fluid levels. I get the pain when I bend forwards, sniff nasal sprays or breathe through my nose for more than a couple of minutes. It's a bastard because the ventilator even with humidity dries your mouth so you tend to breathe through your nose, if I do that, which I do most nights at some point I wake up screaming in pain.

Millie welcome aboard, my symptoms are explained above in my reply to crunchymum. Yes it can be treated with surgery to close the gap, not possible for me because of the limited range of movement in my neck.

Good night all - I really have to get some stuff done tomorrow so won't be posting as much.

Is it just me or is this thread weird because there have been no unpleasant comments at all, not one. I see some shocking things on MN at times and have expected it but it hasn't arrived even when posting about my eldest ds.

At least my cats [usually] cause things to post halfway-through me writing them rather than deleting them. They have a habit of rubbing their faces on my phone while I’m trying to use it...

I was in the process of arranging to do the IP programme at Stanmore when it was still very new, but they were concerned about managing comorbid conditions, then I had surgery that took lots of rehabbing (they’d not take people who were below baseline) &, er, then sort of fell through the cracks & then I got kittens & going off inpatient for several weeks stopped being a realistic option. By that point Prof Grahame had stopped being allowed to manage patients from his UCH clinic so I was left with nobody overseeing my care bar my AWESOME GP (when I was diagnosed she called me in for an appointment & said “I don’t really know anything about EDS, so I’ve started doing some research” & then went through the clinic letter & Next Steps & spent up until she retired fiercely advocating for me & ensuring I got the best treatments possible... I really miss her... ). I now seem to be the responsibility of the team at KCH who run a clinic for people with EDS who have POTS. Unfortunately nobody told me before I saw them that they’re not “just” interested in cardiology, nor that appointments take 1h30. I wasn’t prepared for that AND physically couldn’t stay that long, so the one actual appointment I get (follow-ups are by phone, the clinic’s crazy over-subscribed & I apparently got seen urgently for reasons I don’t actually understand) was kind of wasted. (Though with 7 onwards referrals perhaps best it was, that’s more than enough to be getting on with, frankly... *)

PinkSparklyPussycat
A couple of years ago I had a conversation with a medic friend & she said one of the things she hated most about being a doctor was recusitating elderly patients who it would be kinder to let go. Like Seafour I’ve been on wards with elderly people in various stages of illness & accompanying distress & it can be quite awful to watch, even as a stranger, people more than ready to let go being held here by families not able to make the - very difficult & painful - decision to release them. I don’t blame them for that at all, to be clear. But - in hopes of reinforcing your realisation - I can absolutely promise you that you have nothing to feel guilty for.

*To be clear, am vvv grateful that I have access to highly-specialist health care that is free for me to use (merci bien British tax payers & apologies for being drain on system); I’d just like to not NEED to use it.

1. cross-posted with Seafour
2. cross-posted due to head-butting by cat as mentioned in my previous post
3. missing bit of post essentially = to say I’m sorry you’re having such a crappy time with your eldest DS; that must be incredibly difficult
4. are you not worried that comment re: lack mean posters will cause them to flock here in their droves, like sharks/bears to blood?
5. could it be possible that WatcherOfTheNight actually managed to ban judgypant-wearers from the bus?!

Thanks @Seafour. I have got a chiari malformation too (discovered during an MRI for lower back pain) and sometime have the most excruciating headaches. Bending over to pick things up or sometimes leaning forward causes strange pressure in my head. I also get tinnitus. I've had these headaches/pains since I was a child but it was only discovered 4 years ago and the doctor said there was nothing they could do about it and to take paracetamol (which has no effect at all!). But it's nothing compared to what you deal with every day so I'll sit quietly on the bus for now!

Hi @Seafour, I'd like to climb on the bus too. I'll bring bad singing, questionable fashion sense but bucket loads of empathy and trivial chat beginning with the word 'Apparently ...'.

I'm another vote for you writing a book at some point and putting yourself first and not cancelling the surgery.

Just to say "wow" not sure what else to say. I started reading last week, and checked back on the thread today to see if you were home. A memoir in the making here for sure. Very humbling for the rest of us .

There’s a fierce storm lashing all around here today, I have the day off so no need to go out at all.

So in between opening the window and closing it a million times for the cat, who wants to be out when she’s in and in when she’s out and won’t use the catflap, I shall mostly be making chocolate brownies and lemon drizzle. Unexciting but acceptable to the bus I hope.

(I need to make fruit cake but CBA to venture out in this. Sorry 😊)

Nancy apologies I missed you last night when I was answering everyone. The only reason my legal case came to fruition is because of the solicitor who led my case, he is a remarkable man, compassionate, honourable hugely knowledgeable and was happy to work with me.
Many years ago I was given some advice about solicitors, they "Always expect us to sign up to their terms of engagement and we should also provide them with the same" and central to that is the fact that they are acting on their clients instruction. I was lucky I was used to dealing with solicitors in my professional life and the effects of carbon dioxide hadn't yet ravaged my body and mind.
The strength to do it came from my desire to do right by my family. I found him by speaking to a fabulous solicitor in family law, she was horrified by what had happened to me, she was better connected than me to find the right person. He specialised in Cauda Equina Syndrome cases. I wasn't interested in a no win no fee deal, I already had legal cover on my household insurance and used that initially and then took out an early bird policy, such a policy takes advice from your solicitor and assess the likelihood of you winning your case and agrees to cover your fees if you lose, they take a fixed fee up front which was £25 in my case and we agreed another fixed fee at the end, not a cut of my settlement as in most negligence claims.
I also had a shit hot barrister, bright as a button and sharp as a pin, they got used to me being very direct and honest with everyone and we formed a good team.
Because of the discharge letter written by my consultant the hospital trust admitted liability almost immediately, so it was a three year negotiation about how much not if. We settled on the Friday at 4:30pm before we were due in the high court in London on the Monday morning.
The consultant had only been a locum and was fired immediately, he had a long history of litigation at other hospitals, he's now retired.

The GP was different, it wasn't the practice but the GP in person who had been negligent so the case was against a person. It was difficult because she lived almost opposite my house, we had children in the same class at school, we had stood at the school gates together for years when the dc were at primary school. I didn't tell a soul that it was her, but people found out anyway. I was doorstepped by the local and national press when the case was listed in the high court and paid for an injunction to keep it out of the papers. I didn't want my dc to be at school and in a situation where other kids were saying "your mum did x to her mum".

Why did I go to such lengths to protect her and our children, well it's simple, I knew her but not well enough to know what was going on in her personal life, what happened at work that day, why she did what she did. I felt like that until I read her statement, it was disclosed towards the end of the case and was a pack of lies, she also tried to paint a picture of me that no one who knew me would recognise. I will dig it out and quote from it at some point because it's truly shocking. It enraged me.
As the case progressed I was advised to drop the case against the GP by my legal team because the bit she was financially responsible for was insignificant compared to the NHS trust. Unpalatable as it is everything in medical litigation has a price tag so she was only liable for what residual damage I might have had if she had phoned for an ambulance the day she did that home visit.
If she had been honest I would have let it go, but she lied not just about what happened but she tried to paint a picture of me as an unpleasant person and that is a big no no in my book. My fee cover for the case against her was withdrawn so I was funding it myself at this point.
I instructed my solicitor to send a letter which I had written, to her solicitor it contained a one time only offer, I simply took the sum of money attached to the damage she was responsible for and tripled it, at the same time I disclosed a statement written by my youngest ds who was at home looking after me the day she visited. He is a remarkable person, possesses an incredible photographic memory and his statement contained detail in minutiae of what happened that day, from what she was wearing, the colour of her shoes to every word spoken by her and me.
Her solicitor had a few hours to respond and then I would "see the bitch in court".
She settled, I spent the money on diamonds, I wear them everyday.
I also wrote to the practice with a list of red flag symptoms for CES and suggested the doctors receive training.
This year she did it again, to a young mum with two toddlers. She moved house.

How did I keep going through that process, by adopting the moral high ground and being brutally honest. My Grandfather was a wonderful man, he taught me a lot but one rule I try and live by is the advice he gave me when I was about seven, he said "Sea, whenever you face a problem with people you must adopt the moral high ground, it's the safest place to be when the floods come" he also taught me to love coffee, champagne and art. I miss him everyday even though he died 37 years ago.

Hi Seafour - Time from BC here!

Firstly, can I say how sorry I am to hear about your rabbits? (I'm sure you're not surprised to hear this is my first thought!!!!!) That's so sad. Not surprised by Lola's actions, though, they do know. I mind when one of mine died (we had a special bond, I was devastated) my cat, who spent the night curled up on the bed with me, came over to me every time I woke up, crying, and patted my face. It was incredibly sweet.

Glad Lola and Smokey are doing ok. My rabbits have finally settled down. It only took 4 months or so!

Really sorry to hear you were back in HDU, though very pleased to hear you're home again. Had heard parts of your story before, but strewth! Had no idea how bad everything had been. You really are amazing! And such an inspiration (which is ironic, seeing the etymology of that word - sorry!)!

Anyhow, you take care. I'm jumping on your bus, BTW. Hope there's room for all the critters, though!

Annie, thank you

Izzy brownies are good, as long as they're not the herbal variety I remember from childhood.

Another ban for the bus; any Consultant who doesn't listen to someone's symptoms or doesn't believe them when they say they haven't overdosed on opiates.

Anything thing that doesn't identify as human if they look like a human, there is no headspace for that shit on my bus.

Time so lovely to see you, I was really sad to have to leave the bootcamp threads, I had a lot of support and friendship there.

Plenty of room for cats identifying as cats, dogs identifying as dogs and rabbits identifying as rabbits on the bus.

Time the job of ticket collector is yours if you want it.

Why not? I have to warn you, though, that I'm a hoarder, so those tickets will be kept indefinitely!

As for the critters, I'm pretty sure the hens, ducks and bees know what they are (and they'll provide sustenance, though the ducks will need room for a paddling poo somewhere), as do the fish (who'll need their own pool, away from the ducks!). The cat is convinced she's a tigress, though, and the rabbits reckon they should be treated as guineas and given lots, and lots, of food. The guineas won't be sharing their food with anyone, though!

Provision for all pets will be on the upper deck, the childcare provision now includes a petting zoo. However Lola and Smokey will be with the humans downstairs as they will be missing me and need lots of fuss. Elsa the cat (and the most inappropriate birthday gift ever given to a six year old) will go wherever she likes.

Can someone please explain how we, the grandparents have ended up with Elsa the cat when she was gifted to my granddaughter at her sixth birthday party.