I know this is a deep topic and I have been gone for a very long time, but I wanted to address the issue of living with an invisible illness. I do live with an invisible illness and it can be quite hard at times, especially when I first came out of hospital after I first became ill, and all anyone would ask is "are you better now?" which, to most people, is not a silly question, however for me it was quite upsetting knowing I would never be 100% better.
on to my illness. I have stage 5 renal failure, which was caused by an
auto immune condition called Wegener's Granulamatosis vasculitis (what a
mouthful!) In simple terms, my immune system creates anti bodies which
try and attack my organs. I haven't always had this, but I have always
had the faulty gene, and no one is sure what triggered it. Because it
wasn't active for the first 18 years of my life, it never showed up on
blood tests or anything so in everyone's eyes I was a normal, healthy
child. But for some reason it was triggered, and I became ill very very
became ill in February 2013. Everyone thought I had a stomach bug but
after it went on for over a week, with my doctor fobbing me off, I went
to the dentist for a check up who could see there was something
seriously wrong and insisted I go back to the doctors. The next day, I
went to the doctors and I had a blood test. I was sent home and about
4pm I had a phone call saying I had to go to the hospital and that my
kidneys were really not well.
I was completely out of it, I'm not really sure what went on for the
first few days but I was in hospital for two weeks in total. When I went
in my GFR was 5, and I was very very ill. I was so dizzy and wasn't
eating and slept the days away. I was put on dialysis and had plasma
exchange. I didn't mind dialysis, it made me warm and sleepy, but the
plasma exchange was awful. It made me cold, itchy and irritable. And I
couldn't move for like 4-6 hours at a time.
the second week, I started chemotherapy to suppress my immune system,
so that none of my other organs would be affected. They started me off
with Cyclophosphamide, I had one dose of this, before I had 4 doses of
rheutuximab, one a week for 4 weeks. That was all okay, I just slept
through it all. They did say that because rheutuximab was a kinder
chemotherapy, I shouldn't lose my hair, however the hair on top of my
head did thin A LOT to the point where I was very unhappy with my
natural hair. I've always had fine hair but a lot of it but all of a
sudden I pretty much had none.
always been a hair extension kinda girl, so that was nothing new to me,
but instead of wearing them for length, it was now for thickness as
well and I invested in lots of hats to cover the kind of bald patch I
had. However, it did start to grow back, and it is now longer than my
ears! And there is A LOT more of it as well. I have had a weave since
May, and I absolutely love having one, however I recently had it taken
out and all my hair cut shorter and it is crazy thick and curly! Since I
was a child my hair has been really curly, and I do like it now, I just
love having longer hair. I feel it frames my face better and makes my
hair look longer!
back to the invisible illness. I now take 7 tablets in the morning, and
1 in the evening, and I have hospital appointments about every 3
months. When I last went in September, my GFR was 13 so it has improved,
but it will never completely improve.
did go on the transplant list earlier on in the year, but I was taken
off because I have been stable. I have worked at McDonald's until
recently and they were so good to me through it all, however, I felt I
needed a change and I have just started an apprenticeship in business
administration and I am just getting on my life!
Thanks for reading!