Use your Kidney Blog and be heard

One must wonder at the priorities of a Government that will not compensate organ donors yet will continually spend hundreds of millions of dollars annually dialysing people that could be leading productive lives post-transplant.

See http://blog.therenalunit.com/?p=27 to voice your concern

Reply for Kellie Skinner 24th August.

Hi Kellie, My daughter was born with 10% function of her only kidney and went straight from renal failure to transplant at age 3 1/2yrs old. She is now a busy, normal teenager 10 years down the track. In fact, she is at Kidney Camp at the moment… She got a little more than usual of the bugs & infections that go around schools etc, but the teachers would let me know if an illness was about and I would keep close eye on her for first signs and treat quickly. From very early on we kept her up to date with what was happening to her body, like explaining why she had to have blood tests, and take medicines, and special foods. So when it came to transplant time we explained again, but being careful to also explain both sides. She was used to taking medications, and blood tests so these became more of a routine. By the time she turned 4 no more tears for bloods. phew…. She has a scar from her breast to pubic area which is barely visable now. Aslo surgery has changed alot in 10 years…I was the donor and that surgery has changed too. I was sore for a while but the joy on my daughters face when she could eat foods she had been unable to eat before was worth it… Good luck , I’ll check back if you have any other Q’s.

My son Frank was born in Nov 2002 with 20% kidney function due to reflux, and is now about 12 months away from dialysis/transplant. The doctors strategy is to go straight to transplant so my husband (his father) will begin the workup for that in six months as he will be the donor.

I’m very anxious about my little baby undergoing a kidney transplant and wondering how I’m going to manage infections in the school yard post transplant etc. I’m also worried about everything, even the trivial - like what is he going to look like?

Is there anyone here who had a transplant at such a young age? He will be 3 at time of transplant.

Thanks
Kellie

My wife and I recently received the Organ Donation form. On the form it says either to send it a postal address, fax number or leave it at a Medicare office.

I don’t know if it is worth mentioning but it might put someone off having to wait in a queue of 30 or 40 people to get to the counter to leave the form. There doesn’t appear to be any other method other than pushing in!

I realise they have a “drop box” for forms but that says nothing about Donor forms, in fact the impression is that the box is for claim forms. If this box can be used for any type of form, perhaps the box should be clearly marked to indicate this!

Thanks
John Kelly

Nine years ago my wife was diagnosed with kidney failure , this came as a shock to both of us and after the initial shock we talked and asked questions and read information. From this point on I told my wife that I would give her one of my kidneys if it was compatible, the responses we got from the families was varied our own children accepted it okay but my parents said that they was okay with it but deep down they did not want me to go through with it, we sat them down and answered their questions but I was sure they still did not like the idea.

When it comes to being a living donor then make sure that the family are aware of all details because I am sure that they will be concerned about you and how it will affect your future and if you can get in touch with a donor through the kidney care network then this may help considerably towards relieving their fears.

We had the transplant five years ago and I have still been playing active sport (hockey ) since then and have represented the state in the veterans hockey nationals since then.

To me being able to do this for my wife was the greatest thing I could ever do for her and I feel very proud when we talk to people about her transplant and I tell them that I gave my kidney to my wife.

Kelvin Hinds

My kidney was donated by my husband.
He had to have 4 months off work and he used all is sick pay and long service leave and I had to cash in my superannuation.
I think more has to be done to make it a bit easier.

Jenny Walsh

I saw a program on TV the other night and it depicted the horrific waiting game people are waiting to get the transplant they need. Some have been waiting for 3 and 4 years and I understand that is a long time to wait for a second chance at a somewhat “normal” life. I feel for these people very much, but there is always someone worse off!

My mum has been waitng for 10 years, almost 11. She has been on dialysis for the same length of time, but to this day I am yet to hear mum complain that she has been waiting too long…she takes each day as it comes. She is now getting to the point where she believes she has been overlooked due to her age (66), and she feels within herself that her last day is not too far away. She has been hospital many times due to complications - but still she fights on.

Just last week she was admitted to hospital because the fistula in her arm burst, and she almost bled to death. She is still in hospital after several transfusions and she now has some device in her chest implanted for the purpose of dilaysis, whilst she awaits a new fistula in her other arm.

So for those people waiting 3 and 4 years, please, there is always someone worse off than you are….although our hearts go out to you and we wish you well, just be hopeful that you don’t have to continue for 2 or 3 times longer than you’ve already waited.

Regards
Keith Comensoli

Being one of the longest surviving renal transplants, (35 years post transplant), having suffered kidney failure at 22 years of age and awaited a transplant for five years to allow the operation and dialysis to at least have some perfection, although done under research, I have a long story that could be told but basically I have to say I have, and am, leading a full and active life. Three years following my transplant, I married and now have two adult children – 25 and 26 years of age. I continued to stay in my employment in the television industry and retired after 30 years service. Twenty one years after my transplant I took a major risk and my wife and I started from scratch a dairy farm on the mid north coast of New South Wales. For the following 12 years I worked a 12-14 hour day, usually seven days a week. This only stopped because of the collapse of the dairy industry and some concern my health could suffer because of the work involved.

I have been able to travel overseas and have had many wonderful holidays thanks to the good health I have enjoyed. At 62 years of age I have now semi-retired and am looking forward to working a few acres as a hobby farm. I still actively breed cattle, horses and exhibition poultry maintaining my life-long love of agriculture. I believe because of the longevity of my transplant and the full and active life I have enjoyed, I feel I could help others just starting out towards a transplant by simply telling my story.

Michael Anderson

My name is Cheryl, I had my first TX in 07/05/1967.
I was 14 and received the kidney from my father.
I was born with reflux and was ill all my life, had very little schooling due to the illness. I spent 9 months in the Royal Childrens Hospital in Brisbane when I was 5. I was the first child transplanted at the old Prince Henry Hospital in Little Bay Sydney, Proffessor Murnaghan was the head surgeon with Dr Farnsworth (now a Proffessor i believe) assisting. Also I was the first the receive kidney from relative and live donor.
I had a second TX in 1995 back home here in Qld, my first graft was still trickling along when the second graft went in. I had just over 12 month on CAPD before the second TX.
I met a man called Stewart the other day who had been transplanted a couple of months ago, so I relayed some of my story and all things that I had done during my life and felt very rewarded in being able to speak honestly about the good side of transplantation and the fact that with some precautions, we can lead a very full and interestin life. It had never occurred to me that what I have done could give hope to others just starting out. It was a pleasure to see the look of relief and excitement on his face. The poor man did not know what a ‘graft’ was. He walked away from me with a much lighter step, I felt happy for him. I would like to tell my story, to those who would like to know, also let them know what dialysis was like in the very early days. No home machines, I was considered too small to go onto Hemodialysis and so had to endure the somewhat torturous peritoneal dialysis. Because of my youth, the staff treated me so well and I had my very first initiation into dialysis to the tume of Sonny and Chery singing I Got you babe. No microwave to heat th solution in those days. It is fast approaching 40 years that I have been transplanted. I have two boys 33 and 32 and grandchildren, have worked in factories, managed clothing stores, sold cosmetics as a Revlon consultant, been a dispensary assistant in Pharmacy, a 000 watchroom operator for the QLD Fire Brigade, and worked for the Justice Department in the Cairns Courthouse, Got my Security licence to help my husband in our security business, also office manager of our business doing all bookwork rosters and wages. I learnt to drive a forklift and load trucks with it when we had a truck business, worked as my husbands deckhand on a prawn trawler. I have just completed full time study for my Certificate lll in Financial Services at TAFE. I will probably continue on to Certificate IV, I believe that then I can work as an assistant accountant. We live in Cairns now, but we are moving back closer to my home ground on the Sunshine Coast QLD, where I was born.
If you think that some one could be helped, or interested in my story, I would love to put some of my life experiences to paper and maybe it could give others a a positive outlook for their future chances.
By the way, I went and got my learners to ride a motorbike when I was 46 and on my 47 birthday I got my licence, I ride for pleasure and try to be very careful.

Cheryl