Before the diagnosis I was very physically active, doing shift work, bush walking, ballroom dancing, bike riding and gardening. I was becoming increasingly tired and unwell for at least a year and got shingles.
In December 2005 I was first diagnosed with an auto immune disease called MPGN Type 1 by a kidney biopsy. I was given 18 months to two years of chemotherapy which was Cyclophosphamide and also high dose Prednisolone. The Predisolone was gradually reduced to 5mg every second day by the 8th year. By the time I was diagnosed I was quite unwell. I took two years off work while I was on the chemotherapy. I went back to work in 2008 as a quality manager. I did this work from 2008 until I retired in May 2013. By this time my condition was deteriorating, my blood pressure was very difficult to control and the medications didn't seem to work.
I was not able to keep walking the distances I was used to because of extreme tiredness, aching legs and shortness of breath. My brain was not functioning well enough to continue doing a good job. I gradually reduced my dancing until I was not going at all. I became increasingly unwell, tiring easily and sleep deprived as the only time I passed urine was several times during the nights. I got severe diarrhea, nausea and abdominal bloating. No cause could be found during two weeks in hospital in April 2014.
Despite all this, I did manage to have three trips to Canada to see my daughter and her family, some holidays to Queensland to see my son and his family plus a trip to Tasmania.
It took 8½ years for the disease to progress to the point where I needed to start haemodialysis in June 2014. Once I started haemodialysis my bowel complaint improved considerably, the bloating went down as I lost a lot of excess fluid. I dialysed for four hours, three afternoons a week. I immediately started to feel better. The experience at the dialysis centre was very good. The staff were friendly and competent and I felt well cared for and respected. I had my access, which was a gortex loop joining the artery to the vein, in my thigh. This allowed me to use both my hands so I learnt to crochet and did a lot of crochet and knitting. I found this very relaxing, plus I spent some time purely relaxing. I always felt tired afterwards and John, my husband, used to drive me home most times. If we had to go out to a social event I did perk up though and forgot about being tired. John and I used to try and have a walk at least once a day plus I continued going to the exercise classes.
I really appreciate the dialysis team, the health system for setting up such an excellent renal health system in Australia, not to mention all the research and development that goes into the technology of the machines and dialysis fluid etc. It is very expensive treatment and Medicare pays for it. Private health funds subsidise it for members and also provide private dialysis centres, which are especially good if you are going on holidays. It is hard to find a vacancy though.
After 4 months on dialysis I started work up for a kidney transplant. This included lots of tests to make sure I did not have cancer anywhere and took about a year to complete. I am very fortunate that John donated a kidney to me in April, five months ago. I had been on haemodialysis for 21 months.
I spent one week plus one day in the Transplant ward at RPAH at Camperdown NSW. John had his kidney removed and when I was waiting in the anaesthetic room I heard the doctor telling him to wake up. His kidney was put in an esky and I was wheeled into the same operating theatre where the kidney was waiting for me. The operation took three hours and John's kidney was placed in my left lower abdomen. I woke up back in the transplant ward and immediately I felt better. The surgeon went to see John to tell him the new kidney worked as soon as it was hooked up to me. I had a catheter from my bladder draining urine unto a bag beside the bed. I felt better than I had felt in years. On the second day post operation I was allowed to shower and start walking in the corridor.
I was warned that the first few months post operation would be difficult. I have found this to be so with many trips to the renal unit and pathology and a few side effects of the anti-rejection medications. The blood tests and check ups with the renal team started off being daily but then gradually decreased in frequency as the risk of rejection decreases. I also see the team if there are any problems.
Now, 5 months after the transplant I can do light work in the garden for one to two hours at a time. I can walk for about 1.5km without a rest. At the moment I am recovering from clots on the lungs. I was getting short of breath just from having a shower and getting dressed and could only walk on a flat surface for about 1 km. I am on treatment for it and have started improving already.
I think the fact that I was physically fit to start with has allowed me to be as active as I am now, though I am nowhere near as fit as I was before. Usually twice a week I go to gentle exercise classes which includes walking to exercise every muscle in the body, weights, balancing and stretching with music and a bit of fun and socializing. I feel much better after these classes.
I am looking forward to being able to travel again and see much more of Australia and my grown children and their families. I have to wait 12 months to be allowed to fly overseas.
For me, the kidney given to me by my husband has given us the opportunity to make life much better for both of us. I really encourage live donation by friends or relatives who do not have dependents and are in the second half of their life, to consider donation of a kidney to their loved one or friend. My husband, aged 67, has been well since the operation and is now back to doing his usual activities. He is managing well with one kidney.
The nurses and doctors at The Canberra Hospital Renal Outpatient Unit are specialists in treating renal disease and are competent and caring. I am able to talk to the nurses about any concern I have at any time during the working day and can go to emergency if necessary out of hours.
The care since the transplant has been excellent and thorough and quite intensive. The function of the new kidney and the blood levels of the anti-rejection drugs are monitored frequently to ensure the best health of the precious new kidney and the best health of me, the recipient.
Five months after the transplant is still early days for me and I have my blood test fortnightly now. These will gradually decrease over the coming months.
I have enormous gratitude to all the people who made the kidney transplant possible, the dedicated nurses, doctors, medicare and my husband, who have all cared for me so well.
Thank you all.
12 September 2016