Hi, I'm Donna and I'm new here. I actually registered about a year ago but this is my first post. I'm a 50 year old woman (though I still feel like a 12 year old tomboy
) and I live in East Gippsland, Australia. I live 175 miles from Melbourne and had my transplant at a Melbourne hospital but before my transplant I used to dialyse at the local dialysis unit in my town. I go to Melbourne every 3 or 4 months for renal clinics (& other clinics like dermatology). But I also go to a renal clinic in my town sometimes as one of the Melbourne renal doctors comes here once a month for clinics.
Kidney disease has really gone through my family like wildfire. My mother & her younger sister had it, a first cousin, and me and my 2 sisters also have it, as well as some second cousins. My auntie died of it in 1966 aged 40 and her daughter went on dialysis age 60 and got a transplant in 2011. My mother was diagnosed in 1976 aged 52, started dialysis in 1977, and died in 1988 aged 64 of a massive heart attack. My eldest sister went down it in her late 30's in the early 90's, went on dialysis in 1995 and got a transplant in 1999 which is still working but lately she's been having a lot of UTI's & she has bone disease and can hardly walk now (she's now 64). And my other sister age 61 went on dialysis in 2016. I have 2nd cousins who are either on dialysis or had strokes so maybe it's a high BP problem (I know kidney disease causes BP to rise).
I'd always been very healthy & fit apart from some fibromyalgia so I never really thought I was going to come down with the family kidney disease (my eldest sister & mother who had gone down with kidney failure before me had been sickly all their lives). I got diagnosed with high BP in 2000 at the age of 33 and put on Noten. I thought my BP was up because I'd recently put on a bit of weight. In about Aug 2004 I ran out of Noten tablets and was lax in going to the doctor for a new script. I left it a few days but one night my BP shot up over 200 (I can't remember now but I think it was like 230). But I didn't even bother going to A&E. And over the next 12 months my health really declined. I was getting short of breath, couldn't walk very far, bad cramps & burning in the stomach, back ache, headaches, stabbing pains in the head, getting up to pee 10 times a night, having yellow vomit & diarrhoea at times.
But I still didn't think I had something seriously wrong. I thought I was just a bit run down so I started taking a multi-vitamin and I actually felt a bit better for awhile. But then I ended up with a bad flu which I couldn't shake. Then in Aug 2005 my eldest sister & her husband drove 175 miles to see me and force me to the doctor. Well I had a blood test and found out I was in kidney failure. I was told I have Glomerulosclerosis. I was shocked as I was only 38. If my sister hadn't forced me to the doctor, not doubt I would've died in 2005. I started dialysis (through a permacath) 8 days after my diagnosis.
I finally got a cadaveric transplant in July 2011. It took a short while for the kidney to wake up so I had to keep doing dialysis for about 3 weeks after (& the plasma exchange was a horrible experience). But thankfully it's still working okay. My creatinine was about 160 for awhile but eventually came down to 130. I think the lowest number I ever had was 112. My last test showed 145. It's always up & down a little bit but the doctors tell me I'm stable.
I've had a few ups & downs since then. I had a lot of energy once I'd recovered from the transplant surgery. But I still had a few minor problems like mouth ulcers. But in April 2012 I got a bad flu I couldn't shake for months & got ear infections and lost my hearing for 5 months, and in Aug 2012 I ended up in ICU with pneumonia, hypercalcemia from parathyroid adenomas (my body became very stiff & I had to learn to walk again), and my transplant had stopped working so they gave me emergency dialysis a few times through my groin. Thankfully my kidney wasn't in rejection and once I'd been rehydrated it started working again.
Then in Aug 2013 I got CMV. I kept feeling as though I had a low-grade fever. I was feeling warm but shivery at the same time. The nurses would take my temperature and tell me it was normal so they dismissed me. Even the doctor said it could be menopause but I told him I know the difference between hot flash and a feverish feeling. But he sent me home which is 175 miles away (a 4 hour trip). But on a hunch he'd decided to do a test for CMV and when it was positive he rang me up and told me to come straight back to hospital (I was 142 miles away at the time). Then I spent 3 weeks in hospital receiving treatment. That's the trouble with me since my transplant, my temp seems to be low all the time like 35 (even 34 sometimes) and when I feel I have a low-grade fever my temp is only 36 or 37 so the medical people at A&E just dismiss me. Grr!!
Recently I haven't been feeling well but doctors can't seem to find what's wrong. But I guess that's a topic for another post. I've probably already been too long-winded in this intro as it is.