Hi, I'm new & here's my story

[donamor66]

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.

[SooMK]

Welcome to IHD Donna. What a tough time you've had. I hope the worst is behind you.

[DayaraLee]

Hi Donna! So glad you found IHD. I lurked here for years, reading and gleaning a ton of information from what everyone shared. It was a big step to join and make my first post. It sounds like you've certainly had your share of challenges. I really hope those days are done and you can enjoy years and years of great health with your transplant.
 

[iolaire]

Welcome, I'm glad your transplant has survived the scares so far.  You are quite a trooper to be dealing with a four hour commute to the hospital.

[cassandra]

Welcome to the site Donna

   


Take care, Cas

[Michelle2016]

Hi, Donna:

Make sure to check BK virus and white blood cell account. You can not rely on the Doctor. If you don't feel good, just ask family doctor and find out what's going on.

Good luck!

[Charlie B53]

Hi Donna,

This is sort of a belated Welcome to IHD, but very glad to see you have taken the step and begun posting.

Your Family has had a very rough time with so many afflicted with Kidney problems.  I would also have to wonder if any have been cause by environmental issues.  Heavy metals in the ground water or grown in a common food source.

Very glad to hear you are staying as much as possible on your care.  Receiving a working kidney is huge.  Many of us have too many other issues preventing our being listed for Tx.   You are Blessed.  Know that He is watching over you.

Take Care,

Charlie B53

[donamor66]

Thanks everyone for the welcome

I spent a long time avoiding dialysis & transplant sites because they depressed me as I hated thinking about what was wrong with me, all the things which could do wrong, etc. When I wasn't on dialysis, I spent most of my time trying to forget about this horrid disease (though I still had tablets to take and a diet & fluid restriction to stick to). I really didn't want to be a hostage of it. But when health problems crop up, you just have to face reality.
 
Michelle2016, I’ve never heard of the BK virus before. I’ll ask my doctor about it as it's probably not part of regular blood tests (just like CMV isn't). I think my regular tests look at my white cell count and if anything isn't right my doctor tells me. The last time I saw my renal doctor a month ago he said "I didn't need to see you because all your blood results are perfect". My kidney donor was CMV positive and I was CMV negative at the time of my transplant so I’m assuming I picked up the virus from the transplant. And I was on Valcyte for about 2 years after I went down with that CMV infection in 2013. 

iolaire, the 4 hour commute to Melbourne for renal clinics isn't as hard now because I usually only go every 3 or 4 months now (I go by train). After my transplant, I spent 2 months in Melbourne (a couple of weeks in the renal ward & 6 weeks in accommodation in the hospital grounds). And once I got home, at first I had to go back to Melbourne for renal clinics once a week, then once a fortnight, then once a month until now it's every 3 or 4 months. One of the nephrologists in Melbourne comes to my town once a month for consultations so sometimes I see him if I have any problems. But most of the important decisions about my treatment (change of medications) is done by the doctors in the city.

Charlie B53, I feel certain my family’s kidney disease is genetic not environmental because we don’t all live in the same town or area. Some of us (cousins) grew up & live hundreds of miles from each other.
I’m not sure if God is looking out for me or not as I feel I’ve been cursed with a very hard life which I wouldn’t wish on my worst enemy. And some days I wish I'd never been born. I used to strongly believe in God but now I feel more agnostic. Although a Pentecostal lady once gave me a nice "word from the Lord" that said He's been with me every step of the way and He's going to see me through so I hope that's true!

I'd rather not have been born rather than suffer this terrible illness. I've never had children so at least I know I won't be passing this disease onto another generation. My sisters had 5 children between them and those kids are now aged 35 to 44 and some of them have had minor kidney problems (like kidney reflux) but so far my nephews & nieces haven’t gone down with CKD or high BP but my youngest niece (35) gets bad headaches. My 2 nieces decided to not have children and only one nephew has kids but we’re hoping this disease won’t be passed on anymore and that it stops with us!

[PrimeTimer]

  Welcome to the site, donamor66! Thanks for sharing the long road you've been traveling on. Some of us are familiar with it some of us aren't. That's why it's good to share stories. Never know what we might learn. And besides, it is always good to make new friends. Glad you are here. Good luck. Hope you get to feeling better soon and let us know what they found out.