Sod’s Virus? - a novel way to reward careful isolation

Started by daffy, April 11, 2021, 12:45:41 PM

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daffy

Mike

Sufferin' succotash!


stevewalker

Quote from: daffy on May 01, 2021, 06:35:27 AM
she starts today on a very potent and potentially dangerous drug that will suppress her immune system as vasculitis, simplistically speaking, is the result of your own body's immune system attacking that which it is supposed to defend. The dose of this is low at present but must be increased gradually every two weeks until it is roughly four times stronger. This drug, Methotrexate, is more commonly used with cancer patients and comes with copious warnings and can have some rather frightening side effects, which we hope she never gets to experience.

My wife was put on that for Rheumatoid Arthritis, along with other medications. They have left her constantly tired (although the illness does that, so it may not be the meds) and her hair started falling out - the latter was soon solved by starting on folic acid tablets ... one to bear in mind if needed.

daffy

@stevewalker   Hi Steve, sorry to hear your wife is struggling with R.A.  Like her Sheila is always tired, a product perhaps of the anaemia she has that they think is part of parcel of her condition. So she has been given folic acid to help,with that, though her Doc also pointed out the hair loss issue with Methotrexate and commented with a smile that it would help that too!🙂 She has to take the Meth (🤪) each Saturday, starting yesterday (obviously designed to potentially ruin her weekends😆), but cannot take otherwise daily folate the same day.

Good news is that so far - the Doc's said early reactions to Meth are common - she has had no adverse effects to speak of.🤞

Best wishes to your wife for an improvement in her condition.👍
Mike

Sufferin' succotash!

Fardap

Joking aside regarding 'the bell' what might be useful would be a baby monitor setup so you can talk over distance so being able to check if it is urgent or if it is a chat or just a cuppa - said cuppa can then be made on the way to visit.
Just a thought depending on the layout of the home and most importantly the location of the train room...

Hope things continue to improve.


AlexanderJesse

"Baby monitor" might sound too much like surveillance or monitoring.
Maybe a walkie-talkie might sound more like  interactive communication and not like loss of control...
=================
have a disney day

Alexander

Remember: vapour is just water and therefor clean

Fardap

Quote from: AlexanderJesse on May 02, 2021, 05:04:42 PM
"Baby monitor" might sound too much like surveillance or monitoring.
Maybe a walkie-talkie might sound more like  interactive communication and not like loss of control...

I did wonder about also suggesting WT but then thought that required the ability to press to talk - same as ringing the bell and dependent on the situation might be an easier way to gain attention.

Maybe carefully word the suggestion - although naming it something other than Baby Monitor may be all that is needed... SWMBO Immediate Attention System (I checked that wasn't going to be a dodgy acronym!)

daffy

Thanks for the suggestions guys. :thumbsup:
We live in a bungalow and her bedroom is just across from the lounge and kitchen and most other rooms from where, unless I'm outside, I can usually hear her call me but not always easily discern what she is saying. So some form of aid would be a fair idea.

A baby monitor would mean I would hear all manner of sounds from the room, ever wondering which ones I should worry about.🤔 Her snoring would also ruin my viewing of the Snooker World Championship 😆 although it might be preferable to some of the BBC commentators uncomplimentary observations.😠

A walkie-talkie has its merits, but as calls between our mobile phones are free we could use them, and would and do in certain situations, like when I'm in the garden (unless of course I have turned mine off to gain a few minutes respite from her demands!🤪 - only kidding.😆)

Shouts to each other get confusing: again is it urgent, or just the third time she has tried to get my attention to draw the curtains as the sun is in her eyes.🤔

And of course there is the confusing issue of when she is talking to herself (usually when using her iPad), or I am yelling at aforementioned BBC commentator, or some such outburst against the various stupidities that litter the world and assail my senses through the wonder of the www, or from the 16:9 sound and vision machine across the other side of the lounge.

So it seems thus far that a bell might be a darned good idea, to be used of course with constraint in situations of urgency or emergency. If used for all and any situation or need I am afraid that eventually she may require medical assistance of a quite different type than she has recently experienced. 😉😱


Please note that all that is written above is in jest.👍 Well, some of it! 😆. So far things have been fine with her just calling me, by voice if I'm indoors or mobile phone if I'm out of the house. A bell however still makes good sense as an easy to use, unmistakable and simple back-up while I'm in earshot. 👍
Mike

Sufferin' succotash!

joe cassidy

Time to practice your Lurch impression (from the Adams Family TV show)  :)

daffy

😆

As things stand and the way I'm slowly getting worn out, give me an apron and a couple of bowls of soup and I'd be more like Mrs Overall (Julie Walters).😉
Mike

Sufferin' succotash!

guest311

you are not beginning to wish they'd kept her in another couple of days ?

if not,

then suck it up, turn the radio up, and hope it won't last too many months >:D

seriously, at least she's at home, so that is something. :hmmm:

daffy

Phew! For a moment there Alan I thought you were going to say years !😱

Months are fine, even if it's lots of them.👍
Mike

Sufferin' succotash!

guest311

well, SWMBO and I are now locked into self isolation for seven days, apart from her run up to Guys on thursday for some tests, by hospital transport so not breaking self isolation.
then, while she is in Guys I'll continue to self isolate to ensure she has nothing nasty [apart from HB] to come back to, and I'm then expecting us to self isolate for another week just to be on the safe side.

HB will be walked daily, of course, but by a masked 'me', and we shall not be stopping to chat with other dog owners as we usually do. regulars have been advised and understand.

Saturday a courier will deliver swab tests for MRSA and Covid, wait, and take them back to Guys, then tuesday, all being well, she will be whisked away to London again by hospital transport.

while I think I have laid in sufficient internal sanitiser, I do have a stand by plan for a neighbour to pick up and then leave on the front door step.
hopefully all bases covered. :hmmm:

guest311

so far going well, while walking HB have waved, from a distance, to various owners I would normally have chatted to, and otherwise managed to avoid all others.
thursday SWMBO was collected by a very nice guy from hospital transport, and taken off to Guys for her test. :thumbsup:

later an equally nice guy brought her back again  :hmmm:

this morning her Covid and MRSA swab kits arrived by courier, were done while he waited, and then taken away again.

all quiet now, except for getting her to pack, till she is taken away again for her admission on tuesday.

unfortunately, being bored, she has put pen to paper and created a list of 'suggested' jobs I could do while she is in hospital  :'(

daffy

One week on from earnest and targeted treatment beginning Sheila had a trip to the hospital yesterday morning for a blood test, our local GP surgery internal communication system being a right mess (aren't I the polite one today :) ) so it couldn't be arranged there.

Everything happens for a reason, so they say, and after invading the Boston hospital pathology department unannounced - "You can't come in here without an appointment!" - an explanation from me soon cleared the air and the now kindly phlebotomist (ain't that a nice word) completed the blood-letting ceremony.👹  I then wheeled Sheila off to the SDEC ward (Same Day Emergency Care) to await the results as previously instructed by one of the three doctors who made up her hospital care team.

Of course I was thrown out by the Staff Nurse and spent the next two and a half hours kicking my heels and wondering what was going on. At midday I phoned Sheila who asked me to come back to the ward as they were about to discharge her. As I stood outside the key-pass protected doors a doctor asked who I was waiting for. Unbeknownst to me this was her Consultant who was just on her way to see her, and she asked me to follow.  In a side room sat Sheila in the company of the two junior doctors, all with smiles on their faces. On a screen between them were Sheila's blood results and after the Consultant scanned them another smile broke out.

In fact these three medics were amazed at the results! The key factor, the inflammatory marker level, was the cause of their joy, reduced from a high of 235 (and a range from 175 to 235) and now at 2.90. That decimal point is NOT a mistype! 2.90 is a normal level!

NO INFLAMMATION!  :claphappy: :bounce: :thumbsup:

Sheila still has Large Vessel Vasculitis, but it has been very rapidly and unusually brought to heel, and it may give problems in the future, but with continued drug treatment now and a plan to manage the condition once other markers return to normal or as normal as they can hope, we both have big smiles on our faces and the release of tension is amazing. Things will be different in our lives, and the road to recovery is yet a long one, with at least another three months of strong drugs that suppress her auto-immune response before a less demanding regime of control drugs is established for her future.

Today, as I'm sure you can imagine, is a new and brighter dawn that, at times,  we thought might never be.

And thanks to all for your kind thoughts and wishes, and for reading my rather depressing and lengthy posts. ;)

To the future!!!  :beers: :beers: :beers:

And Alan @class37025 to you and your wife, may this week bring you all that you wish for. My thoughts are with you.
:
Mike

Sufferin' succotash!

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