The good news is that I am currently at home and feeling good and healthy.
My health has been very up and down since the last update, my having been admitted
to hospital three times since the beginning of December, each time due to infections
developing in my Kidney. I have been in hospital 5 times in the last year, which
is a little bit yikes.
The first of these latest admissions was on December 27th 2022, so I managed to have
a good, though quieter Christmas at home with M (Marcus), my brother and my carers.
It was quieter for many reasons; my being even less interested in Christmas than
before, M growing up, my brother not instigating as much this last year and of course
due to there being no interaction with Grandma, something which always added smiles
to Christmas.
The December 27th admission meant that I spent New Year in hospital something I avoided
in 2018, when I was discharged between Christmas and New Year.
What happened this time was that my health dropped overnight, which meant Cheeryn
was quite concerned for me as soon as she came in the morning, so she quickly got
on the blower to my brother who then came down to my house. By 8.30am they’d made
the decision to ring 999. The 999 operator agreed that I needed to be seen; but suggested
that due to ambulance workloads and priorities, it would be quicker if my brother
took me up to A&E himself rather than wait for an ambulance to arrive. So my brother
and Cheeryn took me up to A&E in my WAV.
Once we were at A&E we had a bit of a wait, not a really long one, before I was triaged
into A&E. Once in A&E, I went into resus, due to my unstable condition. There the
doctors kept a close eye on my condition. Shortly after 12.30pm it was noted that
my health was starting to go down hill quickly, something primarily indicated by
a sudden drop in my blood pressure to very low levels. This caused great concern
and I had 4 or 5 doctors gathered round, consulting each other and discussing little
old me.
I am not saying that it caused great concern to get your attention, they were significantly
more concerned on this occasion than they usually are, so much so that my brother
and Cheeryn were dispatched to the family waiting room. The doctors had the conversation
with my brother, that I might not pull through; that they would have to make appropriate
clinical decisions about how far to take the treatment. I was so ill, my brother
felt that it was appropriate to allow a Do Not Resuscitate (DNAPCR) to be put in
place for the length of that hospital admission, one to be rescinded, when I returned
home. It was not an easy choice and maybe not the right one, but even without a DNACPR
in place I’m not sure if their treatment choices would have been much different,
it being mainly up to my body to win the battle.
Apologies to all, I didn’t mean to worry everyone so much, but I am glad that my
brother tried to let as many people a possible know how ill I was.
Once it was known I was over the worst of it, Cheeryn went home, whilst my brother
stayed in A&E with me, he was allowed back into Resus sometime around 3pm.
Once my health had been stabilised, by their dropping a lot of fluids into my system
to get my blood pressure up, they got Urology more involved as they realised that
due to my history it was likely to be a Kidney infection, related to a likely blocked
Urethra that was the source of the infection I was battling. This turned out to be
the case.
The Urology registrar did more than one Nephrostomy wash out which cleared it a bit,
but he wanted a new Nephrostomy bag on so things would run more smoothly, but there
wasn’t one anywhere on the Northern General Hospital site.
The problem was solved, by my brother going back to my place and getting one from
our supplies
.
Even with the pee being able to flow easily down the Nephrostomy, I was still too
poorly to be transported over to the Urolugy ward, so I ended up in the Acute Medical
Unit (AMU) for a couple of nights, before the transfer was made.
I actually made a relatively quick recovery on this occasion and was discharged home
on the 5th January 2023, with no DNACPR in place.
My time at home was not to last more than a few weeks as another Kidney Stone dropped
and blocked the Urethra towards the end of January. On the 25th January 2023, Cheeryn
noticed I wasn’t doing as well in the morning, but decided monitoring was the way
to go. By 11am she was getting concerned, so a per usual rang my brother, who came
down to my house. He agreed with Cheeryn’s concerns and this time took the decision
that ringing the non-emergency 111 number was the way to go.
The outcome was that they decided to send out an Ambulance to me, which duly arrived
between 12pm and 1pm. The paramedics assessment was that I should go up to A&E, where
sometime after 1pm my brother joined me.
It was quite busy so things didn’t move very quickly, which was ok at first, but
it meant an assessment by a doctor took longer to happen than desirable. Also my
bloods weren’t done, because the lady gave up very quickly as my veins were small.
Eventually I was assessed by a doctor and allocated a room in the general Blue section
of A&E. It was there where my blood pressure suddenly dropped, not helped by the
fact that my first drip by cannula had failed as the needle had moved, meaning the
fluid went into the muscle instead of the vein. As the Resus part of A&E was quiet
the doctors scooted me round there, where the senior consultant put a cannula in
my thigh, using an ultrasound machine to get it placed. Once they got fluids into
me my blood pressure recovered. I was transferred over to the Urology ward late that
evening, after 11pm, enabling my brother to go home and get his dinner at midnight.
This was again a shorter stay in hospital as I was discharged on the 31st January
2023. Compared to previous times I hadn’t been as ill on this particular occasion.
I was again back home, and actually made quite good progress according to my brother.
By which he means I was slowly becoming more the person I was before the October
2022 infection, someone with more interest in interacting with people in the world
outside my head, rather than someone just trying to dictate things on my terms only.
This progress was interrupted in the week before Easter, when my condition started
to lapse from the Tuesday evening. For a couple of days, through Wednesday and Thursday,
I wasn’t fully myself according to my carers, my speech was a bit off, as was my
interest in things, but it wasn’t at an A&E level of concern. Especially as my pee
was still running.
On the Thursday, I had a routine bloods monitoring appointment at the local doctors
in the afternoon. Therefore my brother went up in the morning to see if a Doctor
could see me after that appointment, as I would already be up at the surgery. This
was duly arranged, so I first had blood taken and was then assessed by a GP, as a
result of which I was prescribed some prophylactic antibiotics, which had been successful
before, which I started that afternoon. It turns out that the antibiotic chosen wasn’t
going to work against the infection I was brewing, but the doctors weren’t to know
that at the time.
On the Friday, Good Friday, I was slightly worse than the previous two days, not
as talkative etc. Tony was thinking of contacting my brother when he popped into
my house anyway. After quite a bit of discussion, as I was borderline, they decided
that advice was needed. It turned out, as it was Good Friday, that getting advice
was easier said than done, as the Urology Assessment Unit (UAU) was closed, and the
Urology Ward wasn’t answering the phone. Therefore around 12.30pm my brother decided
to take me up to A&E, we got there around 1pm, as it’s only a few miles from where
I live.
I was triaged around an hour later, the nurse apologising for the delay, and she
got me straight into A&E. I was parked, in my chair, near the nurses station in A&E
as a temporary measure as they had to move someone out of the one bay in A&E that
had a hoist, to be able to hoist me into a bed. To my mind only one hoist in A&E
is pretty poor.
Instead of taking 5 to 10 minutes to get me transferred it took nearly an hour. The
sister in charge of A&E eventually took things into her own hands and went into Resus,
where the hoist is, and bossed people about, after which I was quickly transferred.
I was then moved to the Yellow section of A&E. There I was fully assessed, put on
a drip and hooked up to monitors etc.
All went well for a while, until my blood pressure dropped quite quickly. My brother
who having seen this on the last few admissions, knew it wasn’t a good sign, quickly
pointed this out to them. My blood pressure drop gave them a scare, so I was moved
back round to Resus, into the hoisting bay coincidently, as a precaution. There my
brother continued to monitor my blood pressure meaning timely extra fluids were given
each time. I was stable enough to go over to the Urology Ward just after 9pm that
night.
Each extra admission, leads to my brother learning something new about the symptoms
I present in A&E, which helps the doctors treat me more quickly. The main two things
he looks out for are.
1. My heart rate racing; this means I have excess pee in me, backing up. This is
usually due to a Kidney Stone blocking the Urethra and the Nephrostomy being blocked.
The usual, solution is to get the Nephrostomy cleared asap.
2. My blood pressure dropping quickly; this means I haven’t taken onboard enough
fluids, which means I need to be on intravenous (IV) fluids asap.
After which it’s a matter of the microbiologists finding out which bacteria is causing
the infection and selecting the appropriate antibiotic(s) to combat the said infection.
It was because they could only use an antibiotic that can negatively interact with
another drug I take, that I was kept in hospital for longer on this occasion, so
they could monitor me for the just in case moment should it come. In the end I was
in for 16 days, eventually being discharged on Sunday 23rd April.
It was at this time that my brother found out that there is a DNAPR in place for
me, which I had supposedly agreed to. I may well have, I don’t think so, but I may
have, but even if I did they should have told my brother when I was discharged on
the 31st January not three months later, as it had been put in place on the 30th
January.
I have consistently told my brother since the beginning of January 2023 that I don’t
want a DNAPR in place, especially when I am at home, and this one was put in place
for the rest of my life!
I’m not sure how it came to be, I’m sure the doctors would have talked to me about
it, but how I came to agree, I’m less sure, maybe I felt pressured or maybe I wasn’t
really listening and just agreed so the doctor would go away.
My brother has organised a phone call with the local doctors, to try and get it removed
from the system, on the basis I don’t want it, and querying it’s appropriateness
whilst I am at home. We understand appropriate medical decision have to be made in
hospital, and we are happy for doctors to do that, but not less qualified medical
practitioners, who I’d more likely see at home. Hopefully it will be removed, the
local doctors have removed a DNACPR once before.
It does however bring up an interesting question, about whether I am still mentally
competent, to make my own decisions.
It’s a question to which my brother says the answer is yes when I am interested and
engaged on a subject, and no if I see the discussion at that moment as pointless
and irrelevant to me.
This is how different medical professionals and psychological experts, can come to
different conclusions about my competency to make decisions for myself.
In the case the DNACPR completed on the 30th January 2023, the doctor declared me
mentally competent to agree that one should be put in place for the rest of my life.
Whist an assessment carried out on the 8th February 2023, to assess my capability
to be competent enough to vary Grandma’s will, decided the opposite, that I was not.
We know the not competent outcome occurred because the tests they use, have sections
that are very simplistic within them. These simplistic sections lead me to disengage
as I see them demeaning, stupid and pointless, even though I know they are part of
an overall assessment I need to complete and pass. I no longer have a long enough
focus to put up with such trivial parts.This lead to me disengaging and being declared
non-competent, to my disadvantage.
My brother says that I’m in many ways too clever to be an easy person to deal with
in a disabled state. He says it would be easier if I was more stupid, not that he’s
saying he wants that. At least I hope, not.
I know what he means though, I can often, by choice, be
