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Handhold, in HDU with respiratory failure and terrified

967 replies

Seafour · 22/11/2018 04:28

Just that, is anyone awake?

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FuckBrussel · 04/12/2018 14:22

Another poster delurking.

@Crown, thinking about you and looking forward to hearing from you when it's all done.

@Seafour, I'd just like to tell you how much you've inspired me to make the most of every day, and that I'd like to join you on the bus, if that's all right. I know lots of the kind of songs people like to sing on coach trips, and I know Benny Hill's "Ernie" all the way through...

Also, I thought you might like to join me on my walk with the dogs this morning. You took Bonnie, the Dachshund/JRT cross - she can be a little sod sometimes, but I didn't think that would faze you, somehow.

We had quite a sharp frost last night, so the lane looked really pretty with white edges on all the fallen leaves and those little spiders webs in the hedges highlighted. The air smelt really clean and crisp, and although it was cold, we didn't really need more than thick jumpers and bodywarmers.

When we got to the top of the road we walked around the edge of the field. It's been left fallow over winter, so the dead grass and wildflowers are quite tall, and where the sun had melted the frost they were covered in a million little droplets that turned into tiny rainbows at the right angle. There are still a few flowers about, mostly corn marigolds, and the soil smelt of mushrooms.

On the way back we walked along the path between the Scots pines and the field with the cows in, their breath steaming in the cold air. They were making a lot of noise because they were expecting the farmer to give them some more hay and root vegetables - all their food is stacked in the next field, and they're only seperated from it by a strand or two of electric fence. I dread to picture the scene of devastation if they ever do break through...!

We had to keep an eye on Bonnie - she's pretty good off lead, and scared of the cattle, but impossibly nosy and small enough to fit under the fence, and she would love to have had the chance to investigate/roll in/eat a cowpat. Bleugh.

We got back just in nice time for coffee, and although both dogs were soaked, Bonnie is easy to dry - she sees it as another form of fuss. The one I was walking, not so much - you take your life in your hands going near his legs with a towel. It's easier just to throw a large towel over him and leave him to it; by the time he's fought his way out of it he's pretty much dry.

I hope you enjoyed that. And if it comes across as rude, or patronising - I can only apologise. It wasn't meant to, and please ask MN Central to delete my post.

Seafour · 04/12/2018 14:47

Fuckbrussel not patronising at all, that was a beautiful walk, thank you so much. I love spidery mornings, the way you described the scenery is beautiful.

Welcome aboard the bus.

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Crownandheelshigh · 04/12/2018 14:52

All done! Feeling worse for wear and hurt more last time but I was last on the list and had a feeling she had (had) enough...

However managed to get some book reading done and the nurses were lovely when I was crying in pain while having it done, one was stroking my forehead (in case that looks weird I'm 25 haha)

Of home to see my little man now, he's never been away from me really other then necessary so missing him lots.

Ur messages have kept me going thank you!

gigglingHyena · 04/12/2018 15:22

Any more seats on the bus? Another who's been lurking along reading in awe. I've had my share of hospital trips, but nothing to compare to the stories shared here.

Outside is quite a grey damp autumn day here, most of the leaves on the trees have fallen. The bare trees look amazing in the early morning frost. I need to get out and put up our one and only Christmas light, we usually have a colour changing flood light in one of the trees at the front but I haven't found the extension cable yet.

Andro · 04/12/2018 15:42

Crownandheelshigh - glad to see you've made it back to us! Flowers

Seafour · 04/12/2018 16:59

Crown, glad you had a lovely nurse and that your back safely.

Hyena welcome aboard and thanks for the description of outside.

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2018SoFarSoGreat · 04/12/2018 17:15

glad to see you are done and dusted Crown - now for recovery. Sending you healing thoughts and Flowers

FuckBrussel thanks for the beautiful walk. (I meandered alongside Sea whilst you were distracted by the lovely dogs)

I love this thread. Sea, your bus is my favorite mode of transport!

FuckBrussel · 04/12/2018 17:19

Good to see you back, @Crown! Well done!

Glad you enjoyed the walk - @2018, I wondered who that was! Wink

nickyschof · 04/12/2018 17:31

@ Seafour. Please could I jump on the bus. Having rtft, I'm in awe of you and what you've been through. I bake a mean Victoria sponge, if I say so myself.

Seafour · 04/12/2018 18:34

Nicky welcome aboard

Dgc have worn me out again, all admin done and dusted but I don't feel well, haven't felt 100% all day. Heart rate a little fast, temperature a little low, a bit snotty and SATS ok but not brilliant. Going to have a hot bath and get an early night.

It could be withdrawal symptoms from stopping the industrial strength anti inflammatory medication in prep for surgery.

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bexcee · 04/12/2018 19:12

Sorry to hear you're not feeling so good this evening hope you manage a half decent night tonight . Take care

Schuyler · 04/12/2018 20:06

Have you had your pre-op yet? I’d be very worried about having such major surgery after such severe pneumonia and respiratory failure. I was told nothing except emergency life saving surgery until 6 weeks after and after a clear chest scan.

Seafour · 04/12/2018 20:22

Schuyler thank you for your concern, I have type 2 respiratory failure caused by my paralysed diaphragm, my spine is curved and because of my poor trunk control it is further compressing my lungs. My total lung volume is down to 400mls and will only get smaller if I don't have surgery. I live in a strange world where at best I'm critically ill, pneumonia and me are constant bedfellows because I can't cough to clear secretions. On Friday my inflammatory markers were within normal range which indicates I have no active infection.
If I delay surgery and the hospital goes into red over the Christmas /January period my lung volume won't be compatible with being anaesthetised and I will die within a relatively short space of time.
My situationist very unique, I'm really fortunate that I have a team willing to give me a chance.

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Schuyler · 04/12/2018 20:38

Oh wow, bless you. Glad they caught your pneumonia so early then. Take care. Flowers Are you able to swallow at all, if you don’t mind me asking?

Seafour · 04/12/2018 20:46

All questions are welcome. I have no automatic swallow reflex so I can swallow but very carefully. Our golden rule is that I never eat or drink alone, I can choke easily so lots of foods I avoid just from experience.

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WheresTheCoffee · 04/12/2018 22:00

Hi Seafour I hope the hot bath helped, we only have a shower here and it had never occurred to me that I'd miss baths until I couldn't have one.
Beautiful fireplace by the way, DD's birthday is early December so our decorations won't go up for a week or so yet. I'm enjoying everyone else's though Smile

Crownandheelshigh · 04/12/2018 22:03

Yes made it back and my god it's weird not running for a wee every two seconds!

However I'm still in agony weeing.

@Seafour hope ur well!

Thank you for ur concerns x

Izzy24 · 04/12/2018 22:18

Good night everyone - I hope we all have a restful night even if some of us won’t sleep much .

Glad you’re home safe and sound Crown, and hope you enjoy your bath Sea.

Sweet dreams.

SkiMum99 · 04/12/2018 22:48

I’ve read your thread and have no words your life has been incredible hard.
Today i had you in my thoughts. I was in my usual hurry doing school run drop and get to work mode this morning but then saw a lady in a wheelchair sat by the road junction and instead of head down in my own thoughts I stopped to ask if she was ok and needed any assistance. She was waiting to cross the road but the traffic was backed up. I feel guilty that normally I would be in my own world & yes probably have hurried past to get to work, But your words made me stop. I will try to appreciate all the ‘normal’ things I take for granted, I’ve had months of back pain in the past but nothing remotely on the scale you have to deal with and it’s mentally sometimes harder than physically to deal with.
I hope the operation goes to plan, with the best outcome you can get.

Seafour · 04/12/2018 23:08

Lovely bath, still don't feel brilliant but I can definitely feel the effects of not taking my anti inflammatory medication, it will be out with the rock tape tomorrow to enable me to maintain what little use I have of my right hand.

So we're very close, very close indeed. I could still get a cancellation phone call for a variety of reasons, no ICU bed is the most likely, last year I was cancelled because the wrong metal components were delivered to the hospital, or there could be no blood available.

I have A negative blood with unstable antibodies so I will need an exact match, not just grouping but the same antibodies too, last year my blood came from France, I don't even know if that will be possible after brexit. It certainly wouldn't happen without the awesome volunteer blood bikers. So blood matching is first thing tomorrow morning, blood goes by motorbike to a regional centre and then they have to find 12 units for me ready for Thursday morning. No blood would mean no surgery.

Good night people, there will be space on board the bus for one small suitcase each, I will have a think about the livery overnight and let you know what your bus looks like tomorrow.

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Seafour · 04/12/2018 23:10

Skimum, thank you so much

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purpleunicorns · 05/12/2018 00:11

Goodnight Sea. I hope you have a peaceful and well rested night and we'll see you on the bus bright and early tomorrow morning

MintyT · 05/12/2018 05:24

I'm awake and ready to board, not long now x

Roystonv · 05/12/2018 05:32

Sending all good wishes your way and to all those things and people that need to mesh together to be ready for tomorrow. Small suitcase ready; we can share toiletries right? Oh and can we have an onboard loo and snack station please.

2018SoFarSoGreat · 05/12/2018 05:52

I'm up and at em so let's get this preparation done.

I have a good feeling about this Sea. We are all here with you and shall hold you up, push you on when you need it, give you strong backs to lean on, and hands to hold, always. Now if only you could apportion out some of the pain or difficulty breathing we could all take a little bit to ease your load.

You've got this. You've got us. ❤️

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