Latest update...

[Guest guest]

Hi all

I've been to see my Nephrologist yesterday, and seem fairly stable.

Still have bags of protien in my urine(7 grams/24hours) but it's

been slowly moving down since I started Cyclosporine about 4 months

ago. Bloop pressure is well controlled, swelling minimal, creatinine

is stable too at around 155 (1.75 for non- brits!) for the last few

months. My blood level of protien has gone up for the first time

since diagnosis, from around 21 to 30...I'm not sure what units they

are, but I was told 40-45 would be normal for a man of my age(29).

I was a little disappointed with the 24 hr result, I'd done some

dipstick tests at home and was sure it was going down...the grams

per litre was down, but the total the same because I made more urine

on that test than others...seems that some doctors are more worried

about the total amount lost in 24 hrs, and some are looking at the

amount per litre...anybody got any comment on that?

Other than all those test results, I've been feeling remarkably well

in the last few months. I've lost some wieght that I put on last

year when on prednisolone, and felt much better for it, and started

training for rugby again. I'm now nearly as fit as I was when first

ill just over a year ago, and had my first full game of rugby last

saturday. The ground was like concrete, as we're a bit short of rain

hear, but apart from a few cuts and bruises (all fair enough for

that sport!) I was fine...and very happy to be playing again, makes

you almost forget you take 14 pills a day and go to hospital every

fortnight! It can be hard getting the motivation to train and

managing fluids properly when exercising, but the benifits in how

you feel after a while is huge.

Hope you're all well, if anyone would care to pray for rain, do a

rain dance or blow a cloud or two over hear I'd most grateful, and

so would my knees!

Take care,

Cambridge, UK