Port out, port in
I type this as a machine whirrs away dripping antibiotic into my veins. There are
distracting smells in the air because I spilt some in order to get it started, and
because I haven't been able to wash properly for four days.
The last blog entry was written just before I went into hospital, just as I was
regaining my sanity* back after a bad spell. On Saturday I managed to not only pack
for hospital in half an hour (albeit with help) I also managed some room-tidying,
which boded well. I arrived in hospital on time at 11am, got booked in by registrar
who quite happily accepted he knew nothing about CF. A nurse put a venflon in my
left wrist and I had my first IVs at 3 in the afternoon.
At this point I will mention the food, since it first reared its head then. The
first day in I expected random food since you are meant to book it the day before;
however, I was so tied up that I didn't get round to filling in Sunday's food until
too late. So Sunday's was random, Monday was what I ordered, I missed Tuesday and
they didn't have my order (whatever it was) today (Wednesday). The food is much
nicer than any other hospital food I have tasted... but the portions are aimed at
old ladies! I got extra food from the Bistro, but sandwiches don't cut it. The worst
offence though was that they only gave one mid-size bowl of cereal in the morning
(no more for whatever reason) and a limited amount of toast. Sorry, sandwiches don't
cut it. Between two weeks ago and yesterday I appear to have lost 4kg - how much
was lost in hospital??
On the positive, the nursing staff and even the domestic staff were top quality.
Why? A lot of them were immigrants of some sort, and they are normally more skilled
and intelligent than their domestic equivalents. The Philippino nurses had already
acquired "Brissel" traits through their often thick native accents :D
. I should balance this by pointing to good British nurses too who refused to be
beaten by my lousy veins.
I had five venflons put in over four days. The first lasted 3 doses, the second
4; the third - in the hand - died before it was used (lines in my hand have always
died quickly); however I asked the young doctor** who put in the third to find a
spot for the fourth, which he found inside my left elbow with a cry of "What
am I doing?", and this one along with one near my right elbow were canulated
at 4.30 Tuesday morning. I refused to put antibiotic through these - a decision
supported without comment by all the staff! These two venflons then lasted until
after my operation - although only just.
Does it look like I was a pincushion? My usual spot inside my right elbow obliged
blood for tests as usual, while my fingers were pricked well and truly for blood
sugar tests (my home device is set to the minimum depth - the hospital finger pricks
probably go to maximum!). I still have swellings on my wrists from the first two
venflons, and one from the last one on my right arm - but these will die down peacefully.
Emotionally, the first three and a bit days were bothered by having more questions
than answers. We wanted to avoid surgical and anesthetical (?) complications, but
I didn't speak to a surgeon until 11am yesterday, and the anesthetist 1pm. Even
my consultant (unusually) only payed a flying visit on Monday morning. So flying
that I forgot to ask one of the most important questions - to use the sliding scale
The sliding scale is an idea that you give a continuous but small dose of insulin,
combined with a continuous dose of dextrose (sugar) solution. If balanced correctly
they should keep your blood sugars stable, while staving off some other condition
caused by lack of insulin. If you head too high, they decrease the amount of dextrose
they give, if too low they decrease the insulin; the peculiarity of the system comes
when they alternate doubling and halving your insulin dose... that can never balance!
18 months ago, the sliding scale caused me to go hypo, preventing the operation
that day; I opted to go without the scale the following day and that worked without
problems. However, the extra complication this time were firstly that they had a
better system, and secondly that my diabetes is not so controlled. I asked everyone
what they thought, and in the end I had a discussion on Monday evening with the
man putting my line in, a two months qualified doctor. His neutral, quizzical approach
allowed me to make up my mind, to go with the scale.
This was probably the correct decision, although my promise that "if I use
the sliding scale, something will almost certainly go wrong" did come true
in a fashion. When my bed was transported to theatre, they put the saline drip,
insulin feed and dextrose drip on the bed and turned them off... except that I only
noticed halfway across that the insulin was still on. I spotted my looming hypo
in pre-op, and I went through the operation with a low dose of dextrose - but no
insulin. So much for the sliding scale! Also, my desire to retain control as long
as possible paid off, since I could give sensible advice to the (slightly) bemused
I went under anaesthetic at almost exactly 2pm on Tuesday 4th October, waking up
(for the second time) at 5pm. I was under for a comparatively long time, and took
a few hours to recover from anaesthetic. Two lovely physios happened to be in post-op
when I woke and I asked them to stay until I balance my needs for Oxygen, water
and coughing. I had difficulty coughing sputum up - it didn't want to quite leave
my throat and for a while that bothered me until I got over it. It annoyed me that
the young bloke opposite me in post-op seemed to recover almost immediately!
My parents arrived at the ward not long after I did, and after managing to get my
mum to slow down I eventually coughed and drank until I was comfortable enough to
eat a yoghurt. I had my Dad head down to the Bistro to get a decent sandwich (the
not-so-attractive ones we got from the ward ended in his stomach this evening!).
I recommend that the squeamish stop reading at this point!
The nurses were busy, poor things, but by 9.20 they finally disconnected my drips
(freedom!!) and put in my first IV through the new port. By this morning, I was
full of bounce and with all indications that I was going to leave I cleaned up and
even danced with joy. Luckily the nurses didn't notice this time. Physios came and
with their help I started expanding my chest properly (the port, stitched hole and
sticky dressings cause unnatural resistance). By the afternoon, I was mostly clearing
clear sputum with only vague colouration, or darker stripes. My departure wasn't
confirmed until after 2pm, but the system worked (or rather, it was worked by the
CF nurse) and I got out smartly on 5.30, home at 6pm.
On the operation itself I have no recollection (duh!), but I have pieced together
some of what happened. I was scared by the sudden arrival by a pair of evil twins...
er lovely physiotherapists in the pre-op room. Of course before long they were dutifully
laughing at my poor jokes. It turns out they routinely try to prod CF patients while
they are vulnerable under anaesthetic. With the Oxygen on, they can pump my lungs
to maximum and do physio. They said they could feel it moving under their hands
(lovely!) although they it was too dry to get most of it up. They also said I was
a better patient when I was asleep - and I didn't know whether I should believe
(Incidently, this problem of dryness was another theme of this stay. The ward was
dry, and I was dry from before. I was drinking lots of water, and when I was nil
by mouth before the operation they shoved saline into me at triple time (still not
that fast really, but 400ml in a few hours is still significant!).)
Once the physios were done, the surgeon probably opened up my old entry wound (on
my breast plate near my right shoulder), disconnected the catheter from the end
piece of the portacath and passed a wire along it to see what was happening. I have
to conclude that he found that the vein had not clotted or "tissued",
meaning he felt he could use the same site as I requested. For the record, in prior
discussions he mentioned the increase risk of port infection.
He then put in a new "slimline" port - it is meant to be less protruding
- less obvious! - although I will only be able to see for myself when the IVs are
finished. The notes and X-ray indicate that he removed a small amount of breast
bone to send the catheter down under the bone and into the vein that way (rather
than right, round a rib as before). It then follows the vein right close to the
heart (I will need to look at the X-ray in a clearer state of mind to see how close).
Finally, I woke up and apparently coughed up a mug-full of sputum. I don't remember
that! There was another CF patient also having a replacement portacath in who heard
me cough while he was in pre-op. Poor lad!
by Picks-at-Flies Comments