Sick

All readings for my liver are now normal except for one. The steroid dose is now down to 7.5mg. At this rate only another 6 weeks of steroids – it is still quite a while though. I then have to get off the cyclosporin and then the rest of the supporting drugs.

I visited the ENT (Ear, Nose & Throat) dudes at the RAH and it looks like I have a Squamous Papilloma on my tongue. It is harmless (albeit a bit sore at times) but will be removed by surgery in a few weeks time. It is only day surgery so I will be in at 9am and out by about 1pm. The ‘surgery’ will take approximately 10 minutes but of course there will be some waiting etc.

I probably acquired this thing when my immune system was low soon after leaving hospital.

The recovery from this is very quick apparently, a few days.  I can eat the next day so there goes any weight loss I was hoping for (having packed on a few kilos over the last few months).

Another visit to the doctor this week. Looks like my liver and kidneys are working a little harder than normal but fortunately it is only a few percent off normal. The doctor has dropped my steroid level by a little bit – down from 15mg to 12.5mg. Aside from that nothing else to report to my loyal readers.

A nice glass of red wine would be nice but that isn’t happening for a quite a few more months yet.

I had my pre-clean visit to the dentist this week. The mouth is looking OK from the dentists point of view except there is this thing on my tongue which has been there for months, it is a bit sore when eating and has split a little. I will be visiting the Ear Nose And Throat doctor at the end of May to see what it is.

I will be seeing the dentist again on monday for the dental hygienist to give my teeth a cleaning. I have to take some antibiotics and extra steroids on the that day in order to avoid any nasty infections which may occur as a result of any scraping around my gums by the dentist.

Basically nothing has changed.  My liver would appear to still be having some trouble with GVHD (I think it might be Voriconazole – this drug did funny stuff to my liver the last time in hospital).  Everything else is OK although I didn’t ask for the numbers.  So no change means the drug levels have been left as before.  Sigh.  This means another two weeks before any change in the drug levels.

In other exciting news my bowels keep blocking up and my stomach is a bit swollen.  I feel like a blimp.

The kids are back at school this week.  Now I should be able to do some work from home and squeeze in some guitar and drum practice.  Which reminds me – I think I forgot to mention that I am working from home part-time.  I can work anywhere from 0 to 20 hours per week.  It hasn’t been that easy to do any work while the kids are on school holidays.

I had my usual doctor visit last week and my steroid has been dropped a little bit. I am now on 20mg of Prednisilone. Another doctor visit this week, hopefully all is OK.

Aside from that little bit of excitement nothing much has else happened. I still can’t get a decent nights sleep for various reasons…such as the need to have a tinkle every 2 hours.

And another visit to the doctor. No change in the kidneys but the liver is looking good so any GVHD that may have been in there must be gone? I hope so. There is still a slight bit of GVHD in the mouth with one ulcer but it is certainly not getting worse. My next appointment is in a few weeks and there is a good chance the cyclosporin dose will be dropped a bit which will help the kidneys…hopefully.

Another visit to the doctor and no drop in the drugs. The liver is back to normal but the kidneys are having a bit of trouble again. I am drinking 3 litres of water a day and no coffee this week. Hopefully this will help the kidneys. I will find out in a few days if it worked. Apparently long term use of cyclosporin can do this to the kidneys. No GVHD problems though.

Another visit to the doctor this week and no progress on the GVHD/drugs.  In fact a slight step back as my liver is having a bit of trouble again so they increased the steroid level to 25mg.  Hopefully the liver is better when I see the doctor again in two weeks.  There is a bit of GVHD in my mouth as usual.  Oh well, another 6 months on the drugs at this rate.

I had my regular visit to the RAH dentist today. The teeth and gums are doing well apparently, only one little ulcer and some other very mild problems. My teeth never feel clean after brushing but apparently this is a normal feeling due to the various issues.

I will be visiting the dentist again in a few months to see the ‘hygienist’. This person will be giving the teeth a bit of a scrape to get rid of the gunk. I may require some antibiotics and steroids as a precaution against any infection which may be caused by this invasive work near my gums.

Saw the doctor today. My kidneys are having a little trouble with the drugs so they have dropped the dose of cyclosporin a bit to see if that helps. I also had 1 litre of potassium solution via IV – took 4 hours to get that into me. This extra IV fluid is also supposed to help the kidneys. I am drinking 3 litres of water a day but that does not seem to be helping.

My eyes are also having trouble with the steroid so it off the the eye doctor to see what is up with them.

Everything is OK at the moment. I now have blood tests once a week rather than twice a week. I visit the doctor once a fortnight rather than than once a week. My steroid levels are being decreased and there appears to be no GVHD.

Guitar practice is a little slow – my hands often shake quite a bit due to some of the drugs. It makes picking the strings a little hard as I can miss the string due to the shaking.