"All our dreams can come true, if we have the courage to pursue them"
MY AUTOBIOGRAPHY OF MS
The dates on the links below are when the updates to my autobiography / health diary
were completed. The updates usually cover the time period since the previous one.
There is overlap in what I wrote, as the health diary updates were originally written
for a different site than this one. There are some specific topics which are named
rather than dated, and these have been put in approximately when I was doing them
/ they occurred.
This update, healthwise, at least, revolves around my Kidney Stones and my Nephrostomy
as they have caused me to yo-yo in and out of Ward F1 at the Royal Hallamshire Hospital
on a too regular basis for comfort.
The first trip inward bound was on Sunday 31st May, when my Nephrostomy blocked.
I started being unwell around lunchtime on the Saturday, so my brother called 111
and my needs were referred through to the local GP Collaborative. The doctor came
at around 5pm and soon I was having my temperature etc, taken. The doctor discussed
my needs with my brother and carer and then prescribed me with antibiotics and went
on their way. By 8.30pm I was worse, hotter and not so with it, so it was decided
to ring for an ambulance, the response is that one would be sent. 3 hours later one
still hadn’t arrived, so we followed up what was happening and within about half
an hour an ambulance had arrived, and yes you’ve guessed it by then, after midnight,
my temperature had gone down and I was much more lucid, so the ambulance went away
and I stayed in my bed.
On the Sunday morning the carer arrived early, and found me moaning and groaning
and incoherent. After consulting my brother, an ambulance was called and they came
speedily, lights flashing and with little fuss I was carted off to A&E due my temperature
being high, and other stats being wrong. My brother followed me up to A&E and was
with me until they sent me over to F1. Once over with the Urologists, my Nephrostomy
was sorted and cleared. It had blocked and bent so it couldn’t run properly. This
had meant my urine had nowhere to go as a Kidney Stone had also dropped and blocked
my tubing from the Kidney to the Bladder.
They subsequently replace the Nephrostomy on the 3rd of June and after completing
a 7 day course of intravenous antibiotics I went home on the 6th of June. I had to
stay in hospital on intravenous antibiotics because the only oral antibiotic option
for this particular infection this time reacts badly with another of my drugs, Tizanadine.
Home and happy; well for about a month, until my Nephrostomy stopped working again
at the same time as another Kidney Stone dropped and blocked my tubing. The previous
stone having been passed.
This time everything came on much quicker, as I was generally ok on the Friday evening,
maybe a little warm, but nothing really out of the ordinary. However by Saturday
morning I was moaning, groaning and not very coherent at all. Therefore my brother
came down, and then rang 999.
Outcome: The ambulance service refused to attend as my condition wasn’t life threatening,
according to them, it was suggested I get the local doctors out.
Why? That’s the question isn’t it. I think it comes down to the fact that 999 is
a tick box exercise and if you don’t say exactly the right words in the right order
you aren’t a priority.
My brother’s reaction, well rather than ring back and waste time arguing, he and
my carer got me into my wheelchair, which caused me unusually to have a nosebleed,
and drove me up to A&E. I am fortunate it is only a few miles away.
Thankfully A&E wasn’t that busy with it still being early in the morning. The receptionist
took one look at me and went straight into A&E proper and got me prioritised. So
within minutes of arriving a nurse was taking my temperature etc, and within about
5 minutes I was round in resus on monitors.
My brother as usual walked the doctors through my condition, with one possibility
being a blocked Nephrostomy but we weren’t sure, as it had come on a bit quicker
than usual for that. Was it something else causing these symptoms, not a blocked
I was given Paracetamol for pain but by 11.30am I was causing concern as my heart
rate was rising to unsustainable levels, between 150 and 240 beats a minute rather
than my normal 95 to 105 beats a minute. They therefore performed a nephrostomy washout
earlier than planned, before a scan to check it was in place still. The washout dislodged
gunk and blockage and helped along with the Paracetamol and my heart rate dropped
down again, nearly stabilising, but then the Paracetamol started wearing off and
my heart rate increased again, so I was given Morphine. This reduced my heart rate
again and by around 2pm I was being transported to F1 again. Once on F1 my Nephrostomy
was replaced with a new one.
You’ll notice I mentioned my heart rate was at unsustainable levels. This is what
the doctor in A&E said to my brother! You might also notice this was happening within
3 hours of the ambulance service refusing to turn up for me. Fortunately for me my
carers and my brother know more about my condition and got me to A&E anyway.
Yorkshire Ambulance’s response to my brothers subsequent query / complaint about
their non attendance was that they respond to all complaints fully within 40 days.
After 40 days, sorry we’re getting a excessive demand at the moment, we will get
back to you one day, but we can’t tell you when. Pathetic. Their initial response
was bad, but this is Pathetic.
This stay on F1 was shorter than we expected given the high heart rate I had when
I was in A&E. After another course of intravenous antibiotics I was discharged on
the 11th of July.
Did my Nephrostomy continue to block after this, yes of course it did, however the
next time it did so, my catheter was running fine, and I had no blocking stones.
A late afternoon visit to the Urology Assessment Unit got it unblocked. It took longer
than I would have liked, including a side trip to the Phlebotomy department, but
I came home that evening, 9th of August, with no infection, an unblocked Nephrostomy
having listened to Lionel Richie and others on my brother’s phone whilst waiting
That kept me running until September. On Saturday the 11th I started to be extra
whiny. The key word is extra. Initially it was because I had a phlegm on my voice
box and I don’t like that! I haven’t really had it for a few years, and now it makes
me panic as I remember that very occasionally in the past it led onto subsequent
chest infections which landed me in hospital even though my Carbocisteine medicine
usually clears it up, as it did when I’d had phlegm on the previous Wednesday and
did on this Saturday morning. This didn’t stop me, requesting again and again to
go to hospital for a chest infection I didn’t have. I think I must have known something
was off, but allocated the cause wrongly. Unfortunately my whining about a wrong
cause was making me less believable. My health went downhill in the afternoon. I
wasn’t peeing much, nothing through the Nephrostomy and little to nothing the other
way. I also wasn’t drinking enough and I was sweating more than usual. As there was
no output from the Nephrostomy my brother rang the Urology Assessment Unit at around
5pm, they suggested adding more water and seeing if I started peeing in the next
2 hours or so. By 7pm there was no change so my brother rang the Urology Assessment
Unit back and they said I should be taken directly there. There on a Saturday night
being Ward F1.
You’ll note on this occasion I went straight to F1, bypassing A&E. This was good
as it meant that I was on the ward by 8pm and had my Nephrostomy unblocked by 9.30pm,
which enabled my recovery to begin. By this time I was exhausted, and was fast asleep
by the time my brother left to go home.
This time my problems were primarily the blocked Nephrostomy and associated infection,
it doesn’t seem as if I had stones blocking the other way, but my exhaustion and
drying out probably exacerbated the infection meaning I had to stay in hospital on
a course of intravenous antibiotics. That was disappointing as it meant I had to
spend my birthday on the ward, before being kicked out the next day, 16th September.
I came out on oral antibiotics. Unfortunately these reacted with the Tizanadine I
take so by Sunday night I was feeling dizzy and ill. My brother rang F1 and the doctor
advised taking me off the antibiotic and keeping an eye on me and ringing 999 or
local doctors if needed. Keeping an eye on me, meant my brother staying up all night
at my house, just in case. It turned out to be unnecessary as by 5am I was more myself.
I was told when I came out of hospital that this reaction between the 2 drugs could
happen. I do wonder why they prescribed it; especially as they seemed to have deliberately
kept me in hospital longer on intravenous antibiotics during the July admission,
due to this possible clash.
As a result of all these problems with the Nephrostomy, I have had a long discussion
with Mr Rajpal, my Urology Consultant, about how to proceed forward. It comes down
to 3 main options.
An operation to access the Kidney directly and clear it out. This would involve a
spinal anaesthetic higher up the spine than I’ve had before. An anaesthetic higher
up the spine is more likely to impede lung function. This option therefore carries
a higher risk than my previous bladder stone operations.
Continue using Nephrostomies to manage the Kidney Stones, albeit using a slightly
wider Nephrostomy. This option carries with it the continued risk of infections,
every one is a risk to my health. The actual Nephrostomy can also be a stimulant
for Kidney Stone growth.
A multi step procedure. Step 1 being that they put a stent in via the Nephrostomy,
to hold open the tube between the Kidney and Bladder. Step 2 an operation in which
they access my Kidney via the bladder with a camera and scraper and remove the stone
debris present. This option carries with it risk at the same level or a slightly
higher level as that of my previous bladder stone operations.
Option 1 was almost immediately ruled our as being too risky, which left choosing
between options 2 and 3. As option 2 involves possible continuous infections and
antibiotics, and the risk that a very bad infection could cause my heart to fail,
I have opted for option 3, despite the ‘high’ risk involved; ‘High’ being how the
doctors and anaesthetists classify the risk. The advantage of this option is that
I could be free of stone problems and allied infections for a couple of years should
the procedure be successful.
They were meant to change my Nephrostomy on the 28th of September, and I went to
the Hallamshire Hospital to get it done as an outpatient, only to find when I arrived
that the procedure had been cancelled due to lack of staffing. NO, they hadn’t let
me know! That was seriously annoying! The only positive note is that at the rebooked
appointment, at the end of October, they will change the Nephrostomy and put in the
stent at the same time. Something I would have had to go back for anyway, but they
should still have let me know, not good enough!
Wow, that is a long update on one topic, and as you can see there is much to praise
the NHS for, though problems are also there, hello ambulance and appointment booking
services. Overall the hospitals seem to be working ok; my brother complains more
about the GP service at present, especially the fact they are still locking us out.
Overall I think he’s less happy with the service than me. I am particularly pleased
that they have agreed that the DNAPR (Do Not Resuscitate) order that was in place
should be removed when I am at home. This is especially important and a great decision
now that I am Marcus’s only surviving parent. I still so miss Steve greatly, and
think of him so much, but life continues on and I want to be, will endeavour to be
there for my Marcus when he needs me.
In other medical update news, my Neurologist, Dr Nair, has prescribed me with a cannabis
based spray, Sativex, which has been of benefit as it has helped relax my muscles.
This has reduced pain, increased my general relaxation, and has meant I have been
generally been sleeping better since I started on it. I am only on a low dose, so
don’t get spaced out on it.
That’s enough about my health, what about life?
I’ve really been enjoying the visits of my sister in law, Auntie Carol, who has been
visiting me weekly for the last couple of months. It’s nice to reintroduce old routines
to the mix.
Unfortunately my last infection meant I had to cancel my first nail appointment in
a long while, but I have another one booked in for October, so here’s hoping.
I have however successfully made it to Carol and Eddie’s for a visit, and the weather
was still just warm enough for us to sit outside and enjoy the fresh autumn air.
I made it there at the second attempt, the first try didn’t work out as my Ceiling
Track Hoist broke down. The engineers were all booked to sort it in time, but then
the parts sent ahead for them failed to turn up in time, so everything had to be
rearranged. I wasn’t the happiest bunny when this happened as it meant I was confined
to bed for an extra 5 days because of it. The main problem turned out to be that
the batteries were failing to hold enough charge to allow me to be safely transferred
without the system freezing. The engineers switched the whole unit, not just the
batteries, as the old unit wasn’t tracking brilliantly and hey presto, working hoist.
The original plan was to go to Eddie and Carol’s and then onto the dentist for my
first appointment since early 2020. Both postponed. Can’t say I was as upset about
postponing the dentist, now November, as I was having to put off visiting my friends.
Friends and family are what is most important.
Weirdly it turned out to be a good thing that my Ceiling Track Hoist broke because
when we rang to cancel the dental appointment we found out that it hadn’t been booked,
onto their systems in the first place! At least with the Ceiling Track Hoist breaking
down I was saved a journey to a non-existent appointment.
Thinking about it, all services have been rather hit and miss this year, with the
funding people and people meant to be calling me about finances, not ringing up at
the appointed time, just completely forgetting.
Back to family, Marcus is now in Year 11, and has his GCSEs next summer. He is still
doing well at school. That doesn’t mean he uses his brain all the time, or at least
not in a conventional way. Lying outside in the pouring rain, unconventional, definitely.
Carol and me.
As is his choice of hair colour, currently half blue, half pink. He’s his own man,
is my Marcus. Nearly 16 and coming into his own.
I usually see my mum (grandma) twice a week when my brother brings her down. I enjoy
these visits, though sometimes we say less when we are together than when I ring
her when she’s at home.
Grandma in her front garden.
My book. Due to my repeated hospital visits and other things needing doing as a priority,
like my garden which was getting completely overgrown, my book hasn’t progressed
since my last update. It is supposedly the next main priority after this update,
The garden is a lot better now, but we still have a lot of ivy growing through it,
so I’m considering ripping most things out and having it landscaped and made more
me friendly. Don’t worry we won’t be losing the fibre glass animals in any revamp,
the Dinosaur, Gorilla, Chimpanzee and friends are safe.