Firstly I want to mention a comment from Simon on the Dialysis, Fistulas and Fatal Haemorrhages post.  Read his comment, it is both dramatic and worthwhile.

But also it underlines the increased level of infection risk when you are starting to buttonhole. Why? Because it’s new to everyone, but especially to you. I think a key buttonhole training element should be a practical session on washing your fistula before use.  Before I used the technique, I know I had become a little careless about the BigD pre-wash.  Luckily the nurse training me watched my preparation and for a week or so, would not start until I had washed my fistula to her satisfaction.  I use just a little more antiseptic wash than I need and rub until I have a coating of white suds all over my arm, not just around the fistula.

Check it out.

There have been several other comments that I would like to talk about, and I will do so over the next few weeks.

I should have added a new post last Friday, but alas, at 5am that very morning Julie dragged me (against some pretty wimpy resistance) back to the hospital.

Back to hospital

My last post ended on an optimistic note that all was well.  Unfortunately, that was not the case, and Julie returned me to the Austin Hospital the following Monday with a 38.9°C (102°F) temperature and general miseries and weakness.  After another uncomfortable Groundhog Day night on an Emergency Dept trolley, I ended up staying another week, undergoing a battery of tests, with no positive diagnosis.  However, by Friday I felt better, so they sent me home.

The following Monday diarrhoea arrived.  Most unwelcome.  Each day (against all the evidence), I convinced myself that things were improving and so refused any dramatic action (like going back to the Austin for my third Groundhog Day).

Diarrhoea for BigD patients is a little tricky.  After about the second day, I knew I was losing a fair bit of fluid.  My weight had already dropped a kilo over the previous weeks, so I mentally lowered my base weight and just kept drinking the amount I guessed I lost after each toilet visit.  However, this didn’t work too well and my base weight fell another 2kg (4.4lb).  I not only felt progressively worse, but found it harder to specify how much fluid to take off during each BigD run in our unit’s isolation room.

Finally, at 5am Friday morning, after my 8^th trip to the toilet that night, Julie dragged me back to the Austin.

Unlike previous times, the Emergency Department was pretty quiet, and I was back on a trolley within an hour or so.  Then the usual poking, prodding, measuring and pricking took place.  Unsurprisingly, I had also slipped back into an irregular heartbeat.  The Renal Registrar came by pretty quickly and pronounced me dehydrated.  He ordered 2 litres of intravenous fluid to correct my water and electrolyte imbalance, something drinking water alone cannot do.  He also started me on an antibiotic (Metronidazole — also called Flagyl, which is easy to remember because it’s awfully close to flagellate – or maybe that’s just me).

It was amazing how much better I felt after the fluid replacement.  Within a few hours I felt close to normal.  And to the surprise of the renal docs, my diarrhoea stopped within an hour of taking the first Flagyl.  I don’t think it usually works that quickly – I think I had just plain run out of anything to pass.

I stayed in the hospital for the weekend, and emerged into the light of day yesterday (fittingly, the first of April).  My diarrhoea has not come back and I am slowly returning to my normal healthy self.  Hopefully I will flip into normal heart rhythm during this week.  I will dialyse at my usual unit this afternoon.  The doc releasing me said “We still haven’t found anything.  You seem to have healed yourself.”  Maybe.  But  I know the replacement fluid was a big factor.

As usual, there are several lessons to learn, not the least being that being on dialysis muddies the water, making even the simplest of bugs complex to treat.  How much fluid should be given intravenously without threatening the heart?  How much will be removed during the next BigD session?  Several antibiotics react badly with sick kidneys, limiting what can be used.  Also, dialysis becomes more difficult: a constantly shifting base weight makes it difficult to calculate how much fluid to take off; the same with blood pressure because of the irregular heartbeat,

But the key personal lesson is that if you lose that amount fluid, you become irrational and attempt to soldier on when you should ask for help.  Luckily for me, Julie took over and all now seems to be back on track.  I am even reasonably certain that we will still travel in May!