All aboard the Seafour tour bus #2

[Seafour]

A new thread for us

Old thread in HDU with respiratory failure and terrified

I get it. Lying really, really gets my goat too. Would it sound bad if I said I'm pleased it's viral? Because that means chest is OK and wound is OK.

Yes viral is good, definitely improving.

Oh Sea I’m sorry you’ve had a rough few days. I loved the description of your way to walk, I could really picture it. I’m stuck inside too (post c section) so loving the walks/weather updates etc. Rupert is starting to fill out but still very tiny! He is also keeping me up at night, but the cuddles and newborn smell make up for it.
Hoping the wound clears up very soon & temperature & BP stay down xx

Gruber I did promise to describe the way I would get to the nature reserve avoiding the styles, we can pop baby Rupert into my beautiful coach built pram which will glide over the rough ground and ensure he has a smooth ride. I will describe that walk tomorrow.

Hey Seafour, I'm glad to read that you were feeling better this morning - long may it continue! I'm looking forward to tomorrow's walk

How are you today seafour?

'the yellow bellied gp sent a prescribing nurse'

Sorry to read you have a temp and feel unwell. Tbh though Nurse Practitioners are highly trained and if part of a Rapid Response Team it is quite routine for them to visit and assess house bound patients. They then liaise with the gp. There just aren't enough gps to carry out housecalls.

I hope you feel better soon.

Also, regarding the well intended suggestions to ring hdu for advice please don't. Once discharged from hdu you become the responsibility of your gp. As you have respiratory support you must have a community respiratory specialist nurse, or a spinal specialist support team? Once out of the hdu/acute phase they along with community nurses would be your first port of call.

Best wishes 💐

Morning buslings, I had a good night and feel a little better again today so things are going in the right direction. It's dry and clear here today, a little misty over the river but the perfect day for a dog walk which we shall do later.

Glad you had a good night Sea, have fun on your dog walk!

@ChanelPlease At no point was I questioning the skills of the nurse practitioner, but she had never done a home visit before, it's not something that my GP surgery routinely does, the nurse arrived and knew nothing about my complex medical history, the fact that I have two spinal cord injuries, a paralysed diaphragm, am home ventilated or what surgery I'm recovering from.

On your advice not to contact the HDU I was discharged from or the one that manages my respiratory failure, I'm guessing you haven't read the full thread. My situation is fairly unique as are the health problems I have. I was discharged home from surgical HDU, which as I'm sure you're aware is very unusual, normally someone would have a spell on a normal ward supported by critical care outreach nurses. It's not possible for me to go to a normal ward, they don't have the nursing staff to manage my needs, can't cope with my bipap ventilation and it would put my life at risk.
I was discharged home because we are perfectly set up to manage my needs, HDU outreach nurses are in touch with us daily and they are more than happy to support us by telephone.

The respiratory HDU ward which cares for my respiratory failure, ventilation and everyday medical needs is what I refer to as my home ward is where I'm admitted on an all too regular basis, I go by ambulance straight into resus where I'm stabilised and then admitted to respiratory HDU as soon as a bed is available. I'm in touch with them daily as they monitor my ventilation closely along with my oxygen saturation, temperature, blood pressure and other vital signs. We take no risks, at the first sign that I may be developing a lung infection it's treated as an emergency and I'm blue lighted to hospital.
My home ward never fully discharge me, I'm always a patient currently "at home" but imminently expected.

I do have support from a home ventilation team but other than supply consumables for my suction equipment and training for carers they don't have a lot of input into my care.
Take some time to rtft and you'll have a better understanding of the challenges I deal with every day.

Op I have 'rtft', I'm trying to be helpful not critical sorry if that isn't clear.

There are many, many people in the community with complex medical needs. Some actually have tracheostomies and require full time respiratory support. They are managed by community teams. This is a normal management arrangement.

I am suggesting with respect you need to manage your expectations. It isn't necessary to ring HDUs re post op temps.

I fully understand you, like many, have complex needs. Your community respiratory nurses can manage respiratory support and your community nurses can manage pyrexias be it wound or viral in origin. They will escalate as is needed.

I don't think identifying yourself with a photo whilst speaking so disparagingly about current HCPs is a good idea.

Best wishes 💐

Have been lurking and am pleased you're home now op and seem to be doing much better (virus aside!). I have also found that various care providers, nurses, doctor's etc rely on the patient/family to share medical history ( almost killed a family member through this as I too assumed they'd read records) but once the angry fog lifts I realise that the NHS is stretched to its limit, and to be fair I can't remain angry at them as they are trying their best and I suppose we do need to be responsible for our own health in terms of sharing important info with them. Plus, no matter how awful the situation there is someone always way worse off, and I try to remember that when I'm getting angry with them, that at that very moment the most qualified to help are likely helping someone who needs it way more.

@Seafour Hope you are feeling a bit better. Do you have a care plan for medical treatment? This might be helpful when you do come across professionals who don’t know you and saves you having to go through everything at a time when feeling poorly.

Channel I'm well aware of how other people are managed in the community, I meet them all the time in hospital and at fundraising events for our unit. I'm not managed by the community, I'm managed by the respiratory HDU ward. I'm not sure how you could have missed that if you have in fact rtft.

I haven't said anything that isn't true about myself or any health professionals, while I was in hospital a lot of the doctors and nurses were reading the thread as are two of the GPs from my surgery.

ADastardlyThing thanks for delurking and welcome aboard our lovely bus

Schuyler I have a "Right care plan" which outlines my main diagnoses and the critical path to be followed if I'm ill, the nurse that came to see me hadn't seen it unfortunately.

@Seafour I know someone who has very complex health issues and she struggled when coming into contact with health care professionals who didn’t know her and didn’t have access to all her notes. She has her own copy of her care plan and her wishes and things that are particular to her condition, she guards it with her life and keeps it with her. It’s a bit like when we are told to take our maternity notes except for this friend - acquaintance really - and you, it’s life saving.

'the nurse that came to see me hadn't seen it unfortunately'

As pp said this should be with you at all times for eventualities like this. It would be ideal if all HCPs were familiar with everyone's past medical history, sadly that is rarely possible. Why didn't you just show her your care plan?

Please don't rudely tell me to rtft again, I have. I have a relative with complex needs so I do know the system can be frustrating.

You say nothing you have said is untrue but surely calling hcps yellow bellied liars or 'Mr Dishy' is rather inappropriate once you have identified yourself? I'd be worried about defamatory comments tbh.

I wish you well op. Chronic conditions are really hard to live with. Try not to have everything about 'blue lights' 'critically ill' and 'hdu'. Many people with such illnesses as MS and MND that have similar effects re reduced mobility and reduced respiratory effort manage in the community without it always being a blue light situation. Of course some times it may well be.

'luckily the dsc haven't been staying here they are "caring for" their disabled mother who needs round the clock care at the moment, the last time I had surgery she sadly had a relapse and got much worse'

Out of interest why did you put caring for in inverted commas? your comments seem a thinly veiled dig that the mother has flare ups only when you are ill or am I misreading?

Do you think she's an attention seeker?

Chanel In the nicest way possible, you know very little about Sea's real life, you only know what the rest of us know, what she shares on this thread. Sea is the only one out of all of us who knows what she's going through, and therefore you are in very little position to judge. If you really cared about her you would stop persistently (and rudely) digging at her in the name of concern, and leave her to be supported by the people who truly care.

@gruber time for that walk I promised you, Seafour is bundled up in her wheelchair, baby Rupert is snuggled up in the pram, toddlers strapped into buggies, everyone in wellies or walking boots, dogs in Christmas jumpers and off we go.
Take a left turn out of the gate and walk past the almshouses and the Manor House, cross over so that the children can stroke the shire horse who will obligingly pop his head over the wall and lap up all the attention that little ones can give him.
Turn right down the path that leads to the nature reserve, when we reach the river bridge, the little ones will hunt for sticks because it's the perfect place to play poo sticks. Just before we go under the railway bridge Seafour will take the dogs down the concrete slipway so that they can have a drink and a paddle.
Excitement builds among the children as we head down the path towards the tunnel under the railway line, they are hoping that a train comes thundering over the top of them so that they can scream and race through the tunnel pretending there's a dragon or monster chasing them.
Seafour unlocks the gate to the nature reserve with a radar key to let prams and buggies through, dogs off leads, little ones eagle eyed looking for painted rocks.
We head along the path towards the big river going past the wooded area where the primary schools have forest school, time to go in and explore the dens, climb some trees and hunt for the perfect stick. Off to the river bank and time for the big dogs to go for a swim, lots of ducks and swans to feed and if we're really lucky we'll see a heron and a kingfisher too.
Out of the side gate of the nature reserve and time for dogs and children to run around the wide open space, chase sticks, balls and each other.
Time to head back, past the cricket clubhouse and along the path back to the railway tunnel and we do the whole thing in reverse, poo sticks will take much longer this time because the children have stuffed their pockets with sticks all the time we've been walking.
Eventually we leave and head back to the bus with rosy cheeked children for hot chocolate with marshmallows and slices of Christmas cake.

That walk was fantastic, just the medicine. I'm itching to take the dog and the Dds out (they're bickering like it's about to go out of fashion), but dh has borrowed my car with ds to go 4x4ing, and I'm not putting the dog in his nice car!

Yawning, it is a public chat forum not a private blog. People are allowed to comment even if their views differ. I have at no point being rude.

The op seems to need help to come to terms with their chronic illness. That is of course understandable and I empathise.

Expecting gps to do house calls for elevated temps is completely unrealistic and unnecessary. Nurse practitioners are more than able to monitor these situations.

If the op managed her expectations more it might help lessen her anxiety about her condition.

Best wishes op. Apologies if I have come across as rude 💐

*You say nothing you have said is untrue but surely calling hcps yellow bellied liars or 'Mr Dishy' is rather inappropriate once you have identified yourself? I'd be worried about defamatory comments tbh.

Considering that Seafour has seen the gp in question in court and proven her a liar, calling her a liar is a statement of fact - dodging seeing Seafour in a professional capacity without ensuring alternative adequate care does suggest a lack of courage and/or moral fibre.

Many people with such illnesses as MS and MND that have similar effects re reduced mobility and reduced respiratory effort manage in the community without it always being a blue light situation.

Perhaps their care is not quite at the standard it ought to be? Or maybe, just maybe, Seafour's medical team at the hospital have a slightly better grasp on how she needs to be managed?

Seafour, I really enjoyed the walk!

Inspire me with ideas for quick to prepare light meals, I'm still not loving food and struggling to eat enough. We came home from hospital with a massive box of Fortisip compact protein but I'd much rather get my nutrition from tasty food. DH is a fantastic cook but is absolutely run ragged at the moment so it has to be stuff he can prepare with minimal effort.

Scrambled eggs and smoked salmon. Baked sweet potato with lots of cheese.