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March 2006
A Valuable Program for Everyone to Support
A most memorable event in my life occurred during January this year and while I am often asked to relate the effect of dialysis and kidney transplant on my life, I feel now is the appropriate time to write about it.
During the latter part of February, and after eight years, I made personal contact with my kidney donor’s Mum and Dad, which, in the scheme of things, is a very rare event and one not too greatly supported by the Organ Donor authorities, and yet one hoped for both by myself and my donor’s family.
I must go back to the beginning. An old adage “one can choose your friends, but not your parents” may apply in my case and I came into this world on 22 September 1932 at the Lady Bowen Hospital, Brisbane, the much loved eldest child and older brother to five siblings.
In the genes from my mother’s side, was the dreaded polycystic kidney syndrome, which saw my young brother and sister not survive past 48 hours. Numerous cousins (eight in fact) in one family failed to live beyond 40, with a number departing much earlier, such is the manifestation of the gene. In my case it did not cause too much of a problem until I was in my early fifties.
As a teenager I had passed the Government Medical Officers Examination and became a Police Cadet, and later the mdeical requirements in becoming a member of the Naval Reserve, so I considered myself a healthy type.
With polycystic kindeys, blisters occur on the surface of the kidney, covering the nephrons, thus preventing the blood from entering and to be purified, prior to going back into circulation within the body. This, like sugar in petrol, prevents the smooth running of bodily function (or the car engine) and to great effect.
My wife Pat and I joke about some of the - now funny - events leading up to my diagnosis around 1987, such as when not enough blood would be making it to my head and I would slump out for a period of time, once onto the floor under racks of women’s dresses in Myers; on the bus, while travelling in New Zealand; having to spend the day bedridden in Nanjing while the rest of our group toured for the day; and the flight to Sydney which threw the steward into a ‘twitter’ and how my brother-in-law joked to his wife as a wheelchair was taken on board the plane “Must be for Richard” and the look on his face as I was wheeled up the gangway was priceless.
It was on my return from a New Zealand holiday in 1987 that my local doctor referred me to a highly respected Wickham Terrace physician that blood tests confirmed that I was a carrier of the gene which was actively damaging my kidney function. The disease was described as a snowball going down a hill, enlarging as it rolled, leading to end renal failure. However, with a strict diet, control of blood pressure and hypertension and a strict eye on my creatine results (a numeric scale reflecting the deterioration of kidney function) the days of dialysing could be held at bay as long as possible.
By 1996 the time came when I had to leave the private health system and become a patient of the Royal Brisbane Renal Department. The dedication of doctors and staff at the Renal Unit is to keep you informed and prepare you. A small operation on the wrist to create a fistula (duct) is carried out so that when the creatine count reaches a certain level and you are required to go onto the dialysis machine, you are ready. One Friday afternoon I was told to “be here next Monday, Tuesday and Wednesday, 1 hour the first day, one and a half the second, and two hours on the third day”.
What sort of new life was I heading in to? Not only one with a very controlled diet, with my wife measuring and weighing all things including fluids which would pass my lips, and to spend a full three or four hours every second day attached to a machine with the express purpose of extending my life. Still working, would I still have the energy to do these things?
Fronting up on the Monday, before too long I was attached to the machine and came to realise thousands around the world have this treatment and I could undoubtedly ‘hack it’ too, and was put at ease by the excellent Renal Unit staff. Proudly I left the RBH and caught the bus home. The next day was a different story, I suffered cramps, almost fainted and under the ever watchful eye of Nurse Brett, who ran some saline into my system, I felt better. That day I did sit down on the floor of the lift as I made it to the lounge in the basement for a rest. Teach me for being too cool!
On Wednesday I was told to report at 8am on the following Friday to the Unit at Keperra, as all my future dialysing would be carried out there. So on Friday 15 April I entered the doors of a small hospital devoted to the welfare and well being of kindey sufferers.
Consisting then of a ward containing four chairs, an educating Sister and the required nursing staff, it was here those patients willing to learn how to use a machine and help themselves as much as possible, first started off, later moving to the satellite ward containing six chairs and two assisting Sisters or the larger ward with 12 chairs for the elderly or those requiring continual assistance and monitoring.
I have refrained from mentioning the names of doctors and nurses but must name Sister Karen Mills, my educator in the unit, for her dedication in instructing me on machine use, diet, dos and don’ts, as well as explaining my progress to the visiting Nephrologist (kidney specialist).
Since starting this article, so many good and bad occasions come flowing back, my mind is starting to gel toward a much longer saga, so, to return to the main reason for this article, I will leap forward to my successful transplant on 6 December 1997 and my return home on 18 December of that year.
Writing to the family of my donor through the P.A. Hospital Co-ordinator to express a very personal feeling is a very difficult task. I must have composed at least 20 letters before sending off my unsigned letter to the Co-ordinator for forwarding on to my donor’s family. Some months later I was given a most touching letter from the mother of my donor, expressing her sincere thanks and wishing me well. I then resolved to write my progress each year on the anniversary date and always received a reply, letters I now treasure.
The year I wrote and mentioned how great it was to see Kerry Packer receive a kidney gift from his pilot and the resultant publicity which would greatly help promote the dire need for Organ Donation, a letter arrived advising me that her son, Paul, my donor, had been a commercial pilot who had died as a result of a road accident; that she and a number of their family flew light planes and signed the letter ‘Robyn’.
As the family was very active in their local aero Club, I as third cousin to Wilbur and Orville Wright, have in my possession a pencil sketch their grandfather (my great great great grandfather) had drawn, I sent a copy to Robyn with an explanation of its significance, a gesture greatly appreciated by Paul’s family.
Each anniversary a card and letter exchanges hands, telling of children and grandchildren and when I signed off on the letter of the fifth anniversary “Richard S” back came a newsy family letter. It seems we have the same intitals, as she signed “Robyn S”.
From a number of her flights to various air shows and events, her routes always end back at Perth, which made me realise how far away Paul’s family live, especially considering his accident had occured in North Queensland.
Through our annual exchange of letters an understanding of love and respect has grown, as well as a profound sense of togetherness. From Robyn’s letters I often felt I should try to locate them and yet did not wish to spoil or alter our mutual respect.
My letter of December 2005, on the eighth anniversary of my very special transplant, contained certain family events which triggered Robyn to send an email to me via one of my son’s, who replied by name thus releasing my hitherto unknown surname.
Back came another email of explanation and expressing thoughts of making contact with me, just as I had considered.
Having given me an address and phone number in Perth, I was able to send a letter and my books of Reflections directly to Robyn and Jeff Stewart on 30 January 2006. Our telephone contact the following day was a great occasion followed by a return call a few days later when my wife Pat and I were able to chat to both Jeff and Robyn, ending with a wish all round that some day we will meet.
Footnote: It is not the wish of most organ recipients to learn about their donor, apart from saying ‘thanks’ nor in my case sought after - it just was destined to be.
Become an Organ Donor
All Australians are urged to register for Organ Donation. To find out how to become an Organ Donor, or for more information, visit the Australian Government’s Medicare Australia website: www.medicareaustralia.gov.au/yourhealth/our services/aodr/further_info.htm
Alternatively call in to any Medicare Centre and ask staff for details.
Kidney Health Australia - telephone 1800 682 531 or visit www.kidney.org.au
Queensland Renal Association
Supporting people with kidney disease
70 Koorong Street, The Gap Qld 4061
Telephone: 3300 0906 - Monday to Friday 9am to 3pm
© Hot Metal Publications
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Hot Metal Publications 2010
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