Yesterday was the 20th anniversary of my kidney transplant. Seems an age ago that I was on haemodialysis and on the transplant list.
When I was a final year undergrad writing my thesis, I noticed something was wrong. I was told that I had ESKD after a visit to a specialist. When my kidneys failed, I had to make changes to the way I lived in order to remain as healthy as possible. First I was put on peritoneal dialysis – preferable for young adults on the go. But what I didn’t know was that I had a hole in my diaphragm. Cue pneumonia! Oh dear. So the alternative was haemodialysis. The first fistula didn’t work so I had a vein taken out of my leg to be put in my arm. What people don’t tell you is that the arterial blood rushing through the fistula creates a buzzing sensation that makes it hard for some people to sleep. Luckily I didn’t have this problem. I went 3 times a week to the Berwick dialysis centre (Berwick is an outer suburb in SE Melbourne) by train for 4 hours of dialysis. I got my first job (part time) while on dialysis. It was a technicians job at the Ian Potter Art Conservation Centre. I also got a temporary job doing a condition report on the children’s book collection in the Rare Books dept of the University of Melbourne library. I had to be careful lifting and moving items because I was a bleeder. I needed special pressure bandages to stop the bleeding after dialysis. Once I took a bandage off too soon. I won’t say what happened – luckily I was at home at the time!
The changes I had to make to my life were mainly dietary. Low protein low salt low phosphorous diet and a bag of sweets every other day for energy. I couldn’t cope with peritoneal diet – loads of protein. I just couldn’t do it. The other was managing my life so I wasn’t totally exhausted by the end of each day. And of course, managing how much I drank. When your urinary output is nil, monitoring how much you drink is an essential factor.
My Mum got the call around midnight or 2am – can’t remember – so she had to wake me up and get me functioning enough to zip through to hospital. It was very exciting and nerve wracking. As soon as the kidney went in, everything started working at once. I hadn’t menstruated for over 2 years or passed urine (so my muscles were very unfit – heh!). It was a bit embarrassing as I hadn’t brought any feminine supplies. Walking was hard at first because the kidney was so HEAVY! Something I didn’t expect.
From daily to weekly visits after discharge, I now visit outpatients once every 6 to 8 weeks. I’m not on a lot of medication which is great and I’m in goodish health. I had a clinic visit last Monday and it was just a matter of time until I saw a clinician that I helped earlier at my place of work. That’s the main reason why I don’t get seen at the hospital where I work – to try to limit this sort of encounter from occurring.
So what does having a kidney transplant mean to me? It means freedom to live to my fullest potential professionally and personally. I can travel, work full time, have a sexual relationship, eat what I like (within reason of course!), go overseas, and have time to explore, to discover and relax. I celebrate my kidney’s birthday every year because I am privileged to have it and without it, I wouldn’t have the life I have today.
PS having a medical condition was not the deciding factor in going for medical librarianship – just so you know 😉