Holidaying on Dialysis

Yes it is possible. You can see the size of the dialysis machine and it weighs about 80kg plus it has a water filtration plant, so its not able to accompany me on holidays. But with a bit of work it is possible to get guest facilities and still have a holiday. In Aug 2010 we managed to get guest facilities at Noosa private hospital and so we drove to Noosa and had a lovely 10 days relaxing and enjoying the winter sun. This year we were very fortunate to link up with a charitable group called Dialysis EscapeLine Aust (DELA) which organises temporary facilities in various locations. This year on board the Dawn Princess cruise ship.We had a wonderful 14 days in early Dec 2011 cruising the South Pacific islands including Fiji, Noumea and Vanuatu. Fantastic food , great service, all the facilities you could want and very relaxing. The weather was far better than Sydney. I highly recommend it. For many patients it was the first time they had been on hoilday since commencing dialysis and for some that was many years ago. We even had one lucky patient that was book on the cruise some six months in advance and then got a successful transplant before we left. He was still able to join us and we were all jealous that he didn't have to do dialysis. Hats off to the organisers at DELA (also dialysis and transplant patients) who organised such a great holiday. We have strange conditions regarding medical benefits. Because we were outside of Australia most of the medical benefits funds would not pay for the cost of the dialysis and at $250 per session it soon adds up. Fortunately my medical fund did cover me. Go figure.

Having a Nephrectomy (Kidney removal)

Because I have Poly Cystic Kidney disease my kidneys have grown in size with the many cysts attached. So much so that the kidneys were displacing other organs and I had a considerable belly. The average kidney is about a few hundred grams and would sit in the palm of your hand. However, my kidneys were about 2 kg each and about the size of a small football. The specialist said that I was not eligible for a transplant because there was no room inside the Peritoneal cavity for a new kidney. That meant I had to have one removed. We opted for the left kidney as it was the one that had previously given me the most problem. So in May 2010 I went to RPA and had a major surgery to remove the kidney with an open operation. The main concern for the surgeon was controlling the blood vessels. The kidney function is to clean the blood and hence it has many blood vessels attached. It was about a five hour operation with 30 staples to close the wound and the recovery was six days in hospital and a lot of pain. Full recovery was three months but I still had a large welt around the wound which took several more months to eliminate with exercise. I'm glad it is done and I am told that a transplant operation is not as gruelling (I'll let you know when I get there). Of course I still have the right Kidney and it is just as big as the left kidney was and it is only providing minimal urine output. It is possible that at some stage with  a new working kidney in place I may have to have the right kidney removed.

Guess What? your kidneys are failing

June 2009 and my regular visit to the Nephrologist (Hypertension and Renal specialist) for what I thought was just our usual chat over my latest pathology results turned my world upside down. "How do you feel",  he said. "tired but otherwise ok" I said. "Well it won't last long, your kidneys are failing rapidly and you will begin to feel very ill and need dialysis before Christmas". You could have knocked me down with a feather. Even though I knew my kidneys were not good, I wasn't expecting them to fail so rapidly.
A brief history of my kidney problems goes like this; I had kidney stones as a teenager but the xrays at that time were not good enough to disclose any other prblems. By the time I was about 30 I had a repeat of the stones and this time I was told I also had Polycystic Kidneys. This means that blood filled cysts grow on the kidneys. As they get larger they reduce the function of both kidneys and removing the cysts does not stop the declining function. This condition is genetic and normally you find that other members of the family also have polycysitc kidneys. My case seems to be a genetic mutation.
So once I knew that dialysis was only six months away the next step was to make sure that I had a working access to the vascular system so that dialysis could be done via my forearm and this meant surgery. August 2009 and after multiple tests that preceed any surgery I attended Westmead for a surgery to create a fistual (connection of an artery and vein to increase the size of the blood vessels to make it easier to insert cannulas) see photo. That all went ok and apart from getting used to wearing my watch on the right wrist I haven't had any ill effects. I also have a new party trick. If you have never felt the thrill of a fistula ask me next time you see me.
About six weeks after the fistula was created I started dialysis. The nephrologist had suggested that I would be a good candidate for home dialysis. So I started six weeks of training at Blacktown dialysis centre working up to three sessions of five hours per week. I immediately felt better but combined with working I was tired. Finally just before Christmas 2009 my very own dialysis machine was installed next to my bed and a water filtration plant in the ensuite. When you see the attached photos you will quickly realise that it is not portable and yes it makes a lot of noise making it difficult to sleep. More details of the journey in the next blog.