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Sherry's Jouney - my life with Lupus

The History of Nephrology
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Transplant News, 2006, Wyeth, Vol 5, Issue 18.

 
 

Maxie Scully is 51 and received a transplanted kidney when he was 21. He is possibly the longest surviving kidney trasnplantee in the world. His name by the way is Maxie. Not short for Maximilian he explained: just Maxie. Born and brought up in Galway, Ireland, he was a lively and busy young man. His father was a veterinary surgeon and thereby hangs a tale.

He was a keen sportsman, playing rugby among other things, but horses were his first and enduring love. His ambition was to ride for Ireland. At the age of 19 he had been accepted by the Irish Army Equitation School, to further his horsemanship, when he was struck down by kidney failure due to the rare blood disorder known as Good Pastures Syndrome. He was put on dialysis for two years and in 1975 received a transplant. For eight weeks the new kidney would not function. His father, seeing Maxie's weakened state in hospital, was concerned that a great deal of attention was being paid to the transplanted kidney but in the meantime Maxie's lungs were taking serious strain. On his next visit Maxie's father brought some medicine he used for animals and insisted that Maxie decide whether to take it or not. His father would not make the decision. Maxie took it and two days later his kidney started functioning. The crisis was over.

On leaving hospital Maxie was told of the many things he would no longer be able to undertake, particularly horse riding. After giving this some thought, when he had recuperate his strength he asked his former rugby club whether they would give him a game, on the wing. He played that game without any adverse effects and made two decisions.

The first was that he would not play rugby again. The second was that he would concentrate efforts on his beloved horse riding. He did this with such success that eight years after his transplant, in 1983, he entered a show jumping event and and broke the world record for bareback riding. He cleared 6ft. 7.5in and entered the Guinness Book of Records. Maxie mentioned this because he felt that organ transplantees sometimes become too concerned with their health, take too many precautions and forget to get out there and enjoy life. He has continually set himself goals and motivated himself to achieve them. He believes this is the mind set which has helped him survive - and live - all these years. He encourages others to do the same.

With this approach to life he became very active in the World Transplant Games Federation after its formation in the 1970's. He worked closely with the first president of the new organisation, Professor Maurice Slapack. Maxie attended all the Games from their inception in 1978 until the 1990's in the capacity of 'ambassador' and motivator. He had an interesting experience when the Transplant Games were held in Japan. At a huge meeting of all the teams with their management, plus organisers, Press, etc., one Japanese gentleman told the assembly that transplants were forbidden by law in Japan. It was a matter of their culture, he explained, which in some cases considered the transplantation of organs to be equivalent to murder of the spirit.

The president, Prof. Maurice Slapack, was wondering how to reply to this serious statement when he saw Maxie in the vast auditorium, walking purposefully to one of the many microphones placed for the use of delegates. Being an able and articulate man, Maxie spoke with great clarity and some emotion, assuring the listeners that, in his view, transplantation of organs gave life and he believed that the spirit of the donor, if anything, lived on. The Press wanted to hear more so a Press Conference was called for the next day, at which Maxie Scully repeated his personal experience and opinions and fielded all manner of questions. Two months later, back in Ireland, he heard that Japan had rescinded the old law and transplantation had been legalised.

 
   
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After his transplant in 1975 Maxie Scully trained and then worked in hotel management. After several years he was looking for more outdoor activity and became a sales representative. After a while, and continuing to set himself goals and challenges, he started his own sales company. Throughout this time he was naturally being monitored regularly by his medical team. He had ups and downs partly due to the constant need for medication to avoid rejection, but continued with his interests and really making the most of each day. In 1995 he required a triple heart bypass and when the running of his sales company became too much, he took a course in auctioneering and is now a fully qualified auctioneer.

His abiding interest is in promoting organ transplants and motivating transplantees to extend themselves, not be overcautious, and enjoy the new lease of life they have been given. His personal history since receiving a kidney in 1975 is a wonderful example of how successful this approach can be.

 
 
 


A Tribute to Kidney Transplant Children, their families and donors.

"The donor who offers a part of his body for transplantation is making an inestimably precious gift. The acutely ill patient who receives the organ accepts a priceless gift. The giving and receiving of a gift of enormous value, we believe, is the most significant meaning of human organ trans­plantation." ( "The Courage to Rid" by Renee C. Fox and Judith Y. Swazey. The University of Chicago Press, 2nd Edition, 1998)

I have been actively involved for 33 rears in the care of children who have received kidney trans­plants, and it has never failed to thrill me in seeing the joy of the transplanted kidney functioning and the child starting a new life. The courage of the child and the dedication of the family has made this segment of my medical care inestimably worthwhile.
A happily married woman whom I had first treated 30 years ago walked into my consulting room the other day with her mother to sac "hello'-. Her mother had given her her first kidney following a severe haemolytic uraemic syndrome at 6 years of age. This kidney and the next from a cadaver donor, lasted a total of 17 years. and she now has excellent function with a third one from a paternal aunt. Her survival has depended upon the responsibility and compliance of firstly her mother and later herself.
Like Amanda. I can name numerous patients I have been involved with; such as Reon, Veronica, Terresa, Nicole, Abel, Wayne, Yusuf. Tulani, Hussen and Hassen. Bradley, Tshepang, Molly, Ryan, Paul, Andre, Jan. Eugene, Riaan, Yatasha, Allen. Brian, Magrietjie, Feroz, Boitumelo. Gustav, Ben, Shaun, Kelvin, Annah. Fanie, Francois Lovegloria, Nompostile, Mariam, Adele, Alinda, Simangele, Mpho, Willem, Monica, Chanel, Desmond. Zakarivya, Motlatsi, Luqmaan. Matt and many others.

 

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Their chance of a new life" has come from the precious gift, usually from a parent if related, or the forethought of a cadaver donor or his her family, "-here the magnanimous gift is made despite the most trying circumstances.

pic Prof. P.D. Thomson
Clinical Head of Paediatrics & Paediatric Nephrology, Wits Donald Gordon Medical Centre

 
 

Challenges facing paediatric transplantation
   
     
Social problems are one of our biggest stresses. Many children come from far afield and parents are unable to stay with them - hence Marang House has been a blessing as many of our dialysis patients reside there. A dedicated family medical and social worker team are required.   pic
Growth is also a big concern- children who are chronically ill do not grow well. A dedicated dietician is beneficial. Some children have a gasuostomy inserted so that they can receive extra feeds overnight. Growth is important as far as transplantation is concerned - we require our patients to be at least 10 kg for a transplant - and this is often a difficult goal to achieve.  
Adolescence and compliance: teenage years are difficult enough for normal children, but becomes a nightmare in children requiring chronic medication and clinic visits. It is a difficult period for the patients and the caregivers and requires devoted support and attention.  
Transition to an adult unit is the next problem and patience and dedication on the part of patient, adult and paediatric nephrologists is needed.  
Donor shortage - an ongoing problem, but specifically throughout 2005; very few cadaver kidneys were available. Fortunately we were able to do several related living donors. We also have three lovely girls who have oxalosis, and are in desperate need of combined liver-kidney transplants.

 

Positive aspects of paediatric transplantation

The children are returned to a relatively normal lifestyle. They can return to school and participate in activities. During 2005, six of our patients celebrated having their grafts for 10 years which is a wonderful milestone. A few of our patients have had grafts for over 20 years. Last week two of our transplant patients had the privilege of attending a ski camp for transplants in Switzerland. They had tremendous fun and met lots of other transplanted patients from all over the world. This makes it all worthwhile.

 
Dr. D. Hahn Head of Paediatric Renal Unit, Johannesburg Hospital  
     
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