Friday, December 07, 2012

My 2012 with CF

Firstly as I haven't posted since April this year I will give some updates.
Living with C.F.
Since April I have found myself in hospital, once in June for a week and then continued treatment at home, and then now.  I have come into hospital to get desensitised to an IV antibiotic.  I will be home tomorrow.  Fortunately I am off work until  January so that isn't a problem.
Although work is OK with me being off in December as I have a large amount of holiday left over.  I have had a huge amount of days off in the past year.  in the last 12 months I have had 4 absences with a total of 40 days off,  This is due to the time normally being two weeks.   This is the highest amount of sickness absence in the company that I am aware off.  HR are not happy and have flagged to my manager that the sickness level is unacceptable.  Fortunately I have made the company aware from day 0 about C.F., and that my company is calling out for staff in my area   which should mean that my job is pretty secure.
Because of these absence levels and the fact that I have been struggling with energy levels all the time over the last 18 months I have now officially reduced my hours at work to 4 days per week.  I am hoping that this is enough to keep me working and keep my health up.  I have been working towards this for a few months I have had the company doctor involved and fortunately had full support of my manager.
The other big problem I have had with health is UNI.  last December I was extremely ill and this put me a long way behind in two modules in my course.    Unfortunately I was never able to catch up and consequently failed one module and for the project  I had a deferral due to health.  So I am retaking them this year and plan to do an lot of work whilst off in December.  All need to be finished by March   GULP.

That brings to now.  A couple of weeks ago I was down in Croydon visiting girlfriends friend and experiencing a pagan festival when all of a sudden I came down with flu type symptoms within an hour.  So had a crappy evening and then a couple of days feeling crappy, thought it had gone but hadn't it then went on my chest.  So I had a coughing couple of weeks before coming to Clinic on Monday,  I expected IV's but didn't want to come in to hospital.  Dr. told me that I needed to come in and get desensitised to an antibiotic and then a couple of days observations.  So my father ?! had a phone call on Wednesday at 1pm,  saying message for Flibbles bed is ready on C.F. ward,  then about 4pm the hospital called me to say did I get their message and could I come in for 7pm.
Normally when coming into hospital they say get here for 1pm and you wait till 3pm, so I was hoping that being called in a 7pm would mean that bed is ready.  So we arrive at 7:10,  no staff or bed.  Finally see staff they say the bed is ready shortly can I wait in the day room.  The day room has a couple of very uncomfortable chairs and a settee. after 2 hours my girlfriend had to go so we walked down and got her a taxi.  Back up to day room, feeling sick, in pain and just wanting to lie down.  Eventually I get the room after 10pm.  3 hours.  No food, still hadn't seen anybody.
Get into the room, it is badly laid out as the bedside cabinet is at the far end of the bed.  The desk with fridge is by the bed with table unbetween
Next morning I still hadn't seen a doctor, (apart from on-call coming in for 2 mins about 5am) find out the ward are having a meeting so still no doctors,  eventually senior consultant comes and sees me and we get desensitation started.  This goes well and they all agree for me to go home the next day.

So now sat here waiting for afternoon levels check and then can go home TTO's done.  just a waiting game (again) now.

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