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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?

OP posts:
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yawning801 · 08/12/2018 21:12

Haven't been around much the past few days but I'm still thinking of you Sea, glad the surgery went well and for what it's worth, you're a really bloody beautiful woman (inside and out). You're going to get through this, it's just a matter of time.

Also, I think thefabulouspa needs a nickname, her username is getting a bit long to write - any ideas?

anniehm · 08/12/2018 21:17

Thinking of you x

JustanotherCHRISTMASuser01 · 08/12/2018 21:21

Dh and I have just had a milk and cookies tray whilst watching Russell Howard were so rock and roll. Thinking of you and hoping tonight is a lot better for you.

Gramgram · 08/12/2018 21:25

Hoping you're not in too much pain. I've been listening to some of your musical choices and DH is bemused, "where has this folk interest come from" was uttered by him whilst I chopping up onions for curry.

Rest and sleep so you can heal.

The curry was good and I have told DH why I'm listening to a totally different genre of music.

Flowers for you and your DH.

2018SoFarSoGreat · 08/12/2018 21:31

Hello lovely Sea and welcome lovely DH.

Tonight, I shall be curling up in a ball, taking up the entire back seat on the bus. I shall snow. Loudly. Apologies in advance.

Work holiday party last night, and I raised way too many glasses to you. I blame you because you have given me so much faith in human endurance, it must be celebrated 😝

Nursing my fragile head and very sore feet, preparing for DGSs to come help decorate the tree. I must find a way to resist reorganizing it once they leave.

Still, feeling very fortunate to only have these minor complaints. Wishing a better night for you, and that the pain is manageable. Don't worry about us, we shall still be here when you are more ready to post.

Seafour · 08/12/2018 21:32

Loving the mulled wine, it's not exactly festive in critical care so it's nice to be reminded that its December in the real world.

Rant warning:

This broken body that I inhabit is my very much my broken body and I quite like to be in control of it, that includes what goes in (and comes out)

My admission was planned, with the involvement of all of my consultants:

Mr Dishy the spinal consultant

Dr M the respiratory consultant

Miss J the consultant anaesthetist

Mr A the pain consultant

My health passport was signed off by all of them and copies attached to my notes, both physical and electronic. My prescription is complex, contains six doses per day, as opposed to the normal hospital four. My "home" HDU is used to this and are very happy for me to use the blister packs supplied by Boots (other pharmacies are available). They always have a "self medication form" attached to the front page of my notes ready for me to sign when I return to hospital.
This admission was always going to be different because I would be going to surgical HDU first, so I met with my pain consultant and head of pharmacy to ensure that decisions about my medication weren't made by pharmacists, especially out of hours.
The front page of my health passport contains the following statement:

Clinical decisions about Mrs Seafour's spinal condition must be made by Mr Dishy alone, he can be contacted at any time, day or night on 07xxx xxxxxx

Decisions about Mrs Seafour's respiratory condition must be made by Dr M or the on call Respiratory Consultant in his absence. The settings on her ventilator an only should only be changed changed in an emergency situation and preferably after consulting the Lung Function Team.

Clinical decisions about Mrs Seafour's normal prescription (those medications which were prescribed before she came into hospital) should only be made by Mr A the Pain Consultant. Mrs Seafour's normal medications do not fit within normal prescription guidelines but they are considered safe for her and Mr A has been fully involved with her care for a number of years.

So.......... how do my bus passengers think I reacted about three hours when the ward registrar told me that drug X has been removed from my prescription on the advice of the pharmacist because it's not effective or safe when taken with drug Y.

A) I said "fine, I'm sure they know what's best for me".

B) I said "oh but I've been taking X & Y together for years" shrugged my shoulders and accepted it.

C) I said "please refer to the front page of my health passport and ask the pharmacist to do the same, I can be reached on my mobile when he or she is ready to discuss my prescription with me.

I was seen by the pain team today, as I expect to be every day before I'm surgically fit for discharge.

Well the positive side of this is that the adrenaline rush it's given me has allowed me to write this post, make some phone calls to the dc's and catch up on your lovely posts.

The downside of this is that the adrenaline rush it's given me has been hugely triggering and probably means I will have real difficulty sleeping tonight.

OP posts:
2018SoFarSoGreat · 08/12/2018 21:32

No. Much as I would love to be able to snow on command, I shall just snore. It will not be pretty or musical. 😍

Haggisfish · 08/12/2018 21:43

Aaaaaaaarrrrgggghhhhh!!! How horrendously frustrating. Hope you got your meds in the end.

Andro · 08/12/2018 21:49

Reaction C, possibly is slightly stronger terms, would be the order of the day. I hope you have got it sorted now; if not, is there any way your nurse/s can have your pain consultant contacted at home to get it sorted?

Your health passport has been shown to be necessary (unfortunately)

WitchDancer · 08/12/2018 21:49

No prizes for guessing the option you went for 😤

JustanotherCHRISTMASuser01 · 08/12/2018 21:50

How utterly unacceptable.
And of course its C
You are an inspirational lady of such utter strength

mineofuselessinformation · 08/12/2018 21:57

I hope it's C and they get their arses in gear, to coin a phrase.
Wishing you well, and amazed at your strength, Sea.
Post here if you want, but do reserve your energy for you - you've been through a lot and need it.
Sending lots of snoozy thoughts your way.

Izzy24 · 08/12/2018 22:08

I want to weep with frustration for you.

I’d like to say it’s unbelievable....

Hope it’s sorted now.

Seafour · 09/12/2018 06:09

It was option C of course, the pharmacist did better than phoning me, he came marching onto the ward, I suspect to read myself and third registrar the relevant chapter in his book if not the full riot act.

He wasn't prepared for a cripple with attitude, he looked about 12 but I'm guessing he's recently completed his chemistry degree and is in his first job. The registrar was more than happy to let me get on with it but kept a reassuring hand on my shoulder, which I really appreciated. We quickly established that although the pharmacist was the one with the chemistry degree, I was the one with ten years experience of MY PAIN and of taking drugs X & Y together, which made me the expert in my pain. I explained very carefully what the implications of changing my prescription would have and exactly how angry three consultants would be once they discovered his mistake and the subsequent deterioration in my condition and he was able to very quickly see that text books don't always fit real people, I was backed up ably by the registrar who was more than prepared to ignore the pharmacist and I really hope that he never forgets that behind each prescription is a real person experiencing real suffering. I was rewarded with a cup of tea and a slice of cake from the staff room.

It's great that I got what I "needed" but predictably frustrating that I need to go to such lengths to make it happen, I'm grateful that the registrar was on shift the night before and was able to get to know me and respected me enough to come and discuss the suggested changes with me instead of just changing the prescription.

Anyway, it's time to go back on the ventilator and have a snooze, good morning lovely bus passengers, I will chat to you later.

OP posts:
MintyT · 09/12/2018 06:31

Good morning, I'm currently laying on the very edge of the bed, while my 2 DGS have all the room. Just caught up, glad your still in control

Applesandpears23 · 09/12/2018 07:40

Morning, I hope you managed to het some sleep after that pharmacist stress. I am lying in bed breastfeeding and thinking about what to do today. The weather sounds wild.

justasyouare · 09/12/2018 08:39

You shouldn’t have to go through that but well done for being able to stick up for yourself whilst going through this. Do you realise what an inspirational person you are?
The pharmacist will probably always remember you and has learnt, as you rightly said, that behind each prescription is a person. You are bloody amazing.

Now, today we are visiting my mother in law. Can you please channel some of that adrenaline to me? I think I’ll need it. I’m hoping to see some more Xmas lights though. I’ve been cooped up since my operation a few weeks ago so I need to start getting out and about ready to return to work etc.
Much love to you and your family and apologies to the other bus passengers while will be listening to me moan about visiting MIL until I leave Wink

applesin · 09/12/2018 09:11

Oh Seafour that sounds so frustrating, I'm so glad you had the registrar on your side though.

I'm off to church later this morning, feeling a little fragile at the moment. I've had two miscarriages this year, I brought my babies home from hospital on Friday and yesterday planted them with some lovely growing things in a pot. Makes me feel sad but the plants are lovely, I'll attach a picture for you. The middle plant is a small fir I think, and there are violas around it, and also muscari bulbs ready to come up in the spring buried with them.

Will be praying for you in church today, thinking of you lots.

Handhold, in HDU with respiratory failure and terrified
Bobbiepin · 09/12/2018 09:16

Developing the posts (and the attitude) buy please rest. There are lessons to be learnt about resting don't you think? Although the ones about following medical advice may have gone awry.

Anyway, I'm taking the resting lesson seriously which is why I'm in bed and DH is downstairs with the baby. We'll be going for a (hopefully) long, cold walk in the park later. I'll think of you.

DMCWelshCakes · 09/12/2018 09:30

Morning Seafour, morning fellow passengers.

So sorry to hear that the Dougie Howser thought he knew better than you but very glad for your and future patients sakes that you re-educated him.

I've quarantined myself at the back of the bus with a supply of hot tea and mince pies because I've come down with my traditional festive cold. So if there's anyone you want me to infect with plague by giving them a Christmas hug, just let me know!

Weather outside my window is now dry but still blowing a hoolie. The WelshCakeCats do NOT care for it!

justasyouare · 09/12/2018 09:34

@applesin I’m so sorrry for your losses. What a lovely idea, the plants are lovely. Be kind to yourself Flowers

Snog · 09/12/2018 09:43

Hopefully the pharmacist will remember that for the rest of his working life 😖

I know what you mean about the good and bad bits of an adrenaline rush. It's depleting though. Does your dh do a good line in hand massage and is that something that you like? Sometimes I do that with nice hand cream when visiting folks in hospital.

It's such hard work having to stay on the ball and watchful of your own care, sounds exhausting.

Here is a virtual Xmas card that I made for you, it's a Lino print

Handhold, in HDU with respiratory failure and terrified
Seafour · 09/12/2018 09:54

I've had a good sleep thanks but today is going to be hugely stressful for me as we have shit to deal with, and I do mean quite literally. The whole of my descending colon, bowel and rectum are paralysed and the only way to deal with them is by using an irrigation system called "persisteen" which you can google if you really want to.
I think it's fair to say that if you got a roomful of paralysed people together in a room the one thing we would all want to have "back" from our old life is the ability to shit unaided and unplanned for!!! Gosh I hope you're all laughing right now and not feeling disgusted by this mornings topic, just really appreciate it the next time you need a poo.

So these poor nurses have come up with a plan of how to deal with 2 ltr of water and bowel contents whilst I'm confined to bed and they are my absolute hero's right now.

Got to go, I've got shit to get done.........

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Seafour · 09/12/2018 10:06

Applesin I'm so sorry for your lost babies, I love that you've created a growing memorial for them.** ThanksThanksThanksThanks

I am reading all of your posts, but felt I just had to respond to Applesin

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ThinkOfAWittyNameLater · 09/12/2018 13:05

Hi @Seafour

I've just wastched a very informative video about persisteen (you may be unsurprised to learn I'm a sporner). Fascinating.

I read an article this week about colostomy bags - have to considered one of these? (I hope that's not too personal a question, or rude in any way - I'm genuinely fascinated by human biology & human ingenuity to workaround bio malfunctions).

I thought if you this morning when my 2yo decided to throw my tea all over my side and bottom. Was trying to think of the right words to describe the oddly pleasant feeling of hot tea oozing through clothes, warming up cold skin, before it turns to that icky feeling of sloppy mess seconds later. He looked so proud of himself at first but then started to cry as I stripped off the clothes where I stood. Thanks kid, bad enough you've sloshed over me, now you have to comment on my appearance too? It's a good job he's cute.

It obviously took a lot out of him as he's been fast asleep since.

This afternoon we are going out for lunch & a walk in the woods. I will report back on whether the leaves are still crunchy x

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