Teen fighting for home dialysis gets a kidney

Posted By Carol Mulligan
Posted 3 days ago
Jessie St. Amour, the poster child for northerners demanding a better form of kidney dialysis, had a dream come true this week.

Instead of recovering from his first day of training in home dialysis Tuesday, the Sudbury teenager was rushing by taxi from Toronto to London Health Sciences Centre for a kidney transplant.

“It’s a beautiful day,” said an ecstatic Richard St. Amour in a telephone interview Wednesday afternoon from London, where his son was recovering from the six-hour surgery.

“He’s doing exceptionally well.”

Rather than spending a month on what St. Amour considers the mean streets of Toronto, he and wife Anne will remain by their son’s side in London as he recovers from the transplant.

Saturday, they will celebrate Jessie’s 19th birthday - and his new lease on life.

The St. Charles College graduate has been undergoing conventional hemodialysis at Sudbury Regional Hospital since December when his kidneys failed, a complication of a hereditary disease called Alport Syndrome inherited from his mother.

Anne underwent a kidney transplant when Jessie was six, and she and Richard were devastated when their youngest son later developed kidney complications.

Despite being ill, Jessie continued in school and competed with the St. Charles Cardinals on the football field and the ice rink until the end of both seasons last year.

Since Jessie’s kidneys failed, his father has been fighting to gain access to a better form of kidney dialysis offered at many hospitals in southern Ontario.

Jessie’s cause captured the attention of retired mining health and safety activist Homer Seguin, who enlisted powerful seniors’ groups in the city to press Health Minister George Smitherman to fund the treatment here.

Smitherman says that nocturnal home hemodialysis - long, slow blood filtering that resembles normal kidney function - is the superior form of treatment.

He has also said his government doesn’t have the money to offer the treatment provincewide.

He shouldn’t think the point is moot now that Jessie has received a new kidney. His father is vowing never to give up the fight on behalf of dialysis patients in Sudbury.

For now, though, Richard is celebrating the fact his son’s new kidney is an exceptional match.

“It was better than perfect,” he said.

St. Amour said the family knows the kidney came from a young person “and that’s unfortunate.”

He and Jessie have talked many times about how his transplant would come at the cost of someone else’s life, “but we’ve put that to rest for now,” said St. Amour. “We’ll deal with that later.”

St. Amour said the mood was jubilant at St. Michael’s Hospital when he and Jessie learned a kidney was available.

“Jessie was taken aback. He was shocked, but there was no fear.”

He and his son were well prepared “to handle anything,” said Richard.

“We’ve been through this so many times. We’ve never had a negative conversation about what we were trying to do. We prepared for the worst, but we expected the best.”

He and Jessie were so excited when they got the phone call from Sudbury, they couldn’t wait to catch a bus from Toronto to London. Instead, they asked the cabbie who drove them from St. Mike’s to their Toronto hotel to take them to London.

St. Amour was surprised when the hotel clerk waived all fees for their brief stay, and the cab driver exchanged his rundown taxi for a Lincoln Continental while father and son were hastily packing for London.

They drove in style - and in record time.

When word came that a kidney was available for Jessie, Anne left Sudbury and arrived in London just 10 minutes before her son went into surgery at 4 a.m.

Eldest son Steven remained in Sudbury, celebrating his birthday he thought would be forever associated with the terrorist attacks in the United States on Sept. 11, 2001. Now, Sept. 11 will bring memories of a better time.

Richard wasn’t sure how long Jessie would have to remain in hospital, but he expected his son to be up and walking as early as Wednesday night or Thursday morning.

“I really don’t know. He’s a tough kid.”

cmulligan@thesudburystar.com

You’ve been busy Richard - great news about the transplant and good job on getting access to nocturnal, others will never know the debt they owe you.

to tell you the truth Bill…we owe a lot to Dr John Agar…who has been instrumental and so much of an advisor in our endevours to bring a home hemo dialysis program to Northern Ontario.

[quote=Jessie St Amour;14562]Posted By Carol Mulligan
Posted 3 days ago
Jessie St. Amour, the poster child for northerners demanding a better form of kidney dialysis, had a dream come true this week.

Instead of recovering from his first day of training in home dialysis Tuesday, the Sudbury teenager was rushing by taxi from Toronto to London Health Sciences Centre for a kidney transplant.

“It’s a beautiful day,” said an ecstatic Richard St. Amour in a telephone interview Wednesday afternoon from London, where his son was recovering from the six-hour surgery.

“He’s doing exceptionally well.”

Rather than spending a month on what St. Amour considers the mean streets of Toronto, he and wife Anne will remain by their son’s side in London as he recovers from the transplant.

Saturday, they will celebrate Jessie’s 19th birthday - and his new lease on life.

The St. Charles College graduate has been undergoing conventional hemodialysis at Sudbury Regional Hospital since December when his kidneys failed, a complication of a hereditary disease called Alport Syndrome inherited from his mother.

Anne underwent a kidney transplant when Jessie was six, and she and Richard were devastated when their youngest son later developed kidney complications.

Despite being ill, Jessie continued in school and competed with the St. Charles Cardinals on the football field and the ice rink until the end of both seasons last year.

Since Jessie’s kidneys failed, his father has been fighting to gain access to a better form of kidney dialysis offered at many hospitals in southern Ontario.

Jessie’s cause captured the attention of retired mining health and safety activist Homer Seguin, who enlisted powerful seniors’ groups in the city to press Health Minister George Smitherman to fund the treatment here.

Smitherman says that nocturnal home hemodialysis - long, slow blood filtering that resembles normal kidney function - is the superior form of treatment.

He has also said his government doesn’t have the money to offer the treatment provincewide.

He shouldn’t think the point is moot now that Jessie has received a new kidney. His father is vowing never to give up the fight on behalf of dialysis patients in Sudbury.

For now, though, Richard is celebrating the fact his son’s new kidney is an exceptional match.

“It was better than perfect,” he said.

St. Amour said the family knows the kidney came from a young person “and that’s unfortunate.”

He and Jessie have talked many times about how his transplant would come at the cost of someone else’s life, “but we’ve put that to rest for now,” said St. Amour. “We’ll deal with that later.”

St. Amour said the mood was jubilant at St. Michael’s Hospital when he and Jessie learned a kidney was available.

“Jessie was taken aback. He was shocked, but there was no fear.”

He and his son were well prepared “to handle anything,” said Richard.

“We’ve been through this so many times. We’ve never had a negative conversation about what we were trying to do. We prepared for the worst, but we expected the best.”

He and Jessie were so excited when they got the phone call from Sudbury, they couldn’t wait to catch a bus from Toronto to London. Instead, they asked the cabbie who drove them from St. Mike’s to their Toronto hotel to take them to London.

St. Amour was surprised when the hotel clerk waived all fees for their brief stay, and the cab driver exchanged his rundown taxi for a Lincoln Continental while father and son were hastily packing for London.

They drove in style - and in record time.

When word came that a kidney was available for Jessie, Anne left Sudbury and arrived in London just 10 minutes before her son went into surgery at 4 a.m.

Eldest son Steven remained in Sudbury, celebrating his birthday he thought would be forever associated with the terrorist attacks in the United States on Sept. 11, 2001. Now, Sept. 11 will bring memories of a better time.

Richard wasn’t sure how long Jessie would have to remain in hospital, but he expected his son to be up and walking as early as Wednesday night or Thursday morning.

“I really don’t know. He’s a tough kid.”

cmulligan@thesudburystar.com[/quote]

[B]I think he is one tough kid! Now that he has a real kidney he may experience a much better life. God willing, he going to live a full life…

Back in 1979 I had a transplant, lost it in 1982…was 12 years old. It was great to be away from the process of dialysis and the machinery…this October I have my 2nd transplant followup and hope amd still a good candidate.

Speaking of transplants I read that real kidneys are being grown in laboratories in research studies…not sure about trials but seems there are some promising medical research studies…the future ahead is very bright…there’s a time that maintenance dialysis may be eradicated and if not cut more than 1/2…
[/B]

Fantastic news Richard. I know you and Jessie having been fighting hard to get better access to Nocturnal dialysis across Canada with the support of Prof Agar and you will have made a real difference to people’s lives over there.

I hope all is going well with Jessie and the family and he is bouncing back quickly.

All the best

That is wonderful news. I hope Jessie has a speedy recovery and that his transplant lasts years and years. Congratulations on your success in promoting nocturnal hemodialysis in your province. You and Jessie are changing people’s lives.

I just read this now as Jester posted the link on www.kidneyspace.com and I am still amazed. Glad he shared this story.

Just to let you know that Jessie is doing very very good one year (+15 days) after his transplant…we are all happy with the way things are going for the young man

Happy anniversary to Jessie (and Richard of course) and also to Angie who was done around now a year ago too I think and had a very rocky start. Hope you are all doing well now. You deserve the best.
Fingers crossed, my hubby Andy is donating to me around the end of this month if we can get the surgeons organised by then.

Cheers
beachy(Mel)

[QUOTE=beachy;16735]Happy anniversary to Jessie (and Richard of course) and also to Angie who was done around now a year ago too I think and had a very rocky start. Hope you are all doing well now. You deserve the best.
Fingers crossed, my hubby Andy is donating to me around the end of this month if we can get the surgeons organised by then.

Cheers
beachy(Mel)[/QUOTE]
That is great Mel! Yes I got mine just about a week after Jessie got his! So now it is a year for me as well as of Sept 30th :slight_smile: Infact Jessie and Ric are such an inspiration to me that I named my kidney Jessie :wink: lol

Hey Ric, glad to hear Jessie is doing well! When will you guys be at University Hospital again? :slight_smile: My next appt is Dec 1st now. Just was there Sept 28th.

Happy anniversary for those with transplants. Beachy, I hope that the transplant process goes smoothly for you and your husband and that you have a very successful transplant experience. A successful transplant is a great thing because it frees up time that you spend now doing dialysis. Keep in mind though that transplant is another treatment for kidney failure and has its own positives and negatives. Become just as knowledgeable about transplant as you’ve become about dialysis. Ask lots of questions.

I hope people won’t take this as a downer, but the drugs that prevent transplant rejection are powerful and can contribute to other health conditions like bone and joint disease, various kinds of cancer, cataracts, diabetes, hypertension, and weight gain. They can also increase your cholesterol level increasing your risk of heart disease.

All of you who post to this board are terrific examples of active learners. Learn what you need to learn and know what you need to know about what you should eat and avoid, what medications and diet supplements affect anti-rejection medications’ effectiveness, and how often you should have screening tests to protect your health. Do what you need to do to avoid skin cancer by wearing sunscreen and other protective clothing as needed and stay out of the noontime sun when you can.

Finally, if any of you get a transplant, please drop back by our boards to let us know how you’re doing.

[quote=Beth Witten MSW ACSW;16783]Happy anniversary for those with transplants. Beachy, I hope that the transplant process goes smoothly for you and your husband and that you have a very successful transplant experience. A successful transplant is a great thing because it frees up time that you spend now doing dialysis. Keep in mind though that transplant is another treatment for kidney failure and has its own positives and negatives. Become just as knowledgeable about transplant as you’ve become about dialysis. Ask lots of questions.

I hope people won’t take this as a downer, but the drugs that prevent transplant rejection are powerful and can contribute to other health conditions like bone and joint disease, various kinds of cancer, cataracts, diabetes, hypertension, and weight gain. They can also increase your cholesterol level increasing your risk of heart disease.

[B]Beth, your right about this. My first kidney transplant experience proved it. The transplant meds are quite toxic, though it does good on one side of life it sure does quite bad on the other 1/2 … it does quite a damage on soft tissues…on my end it ruined my eyes, ears, skin, hip joints, and lower extremities of the arms.

Also keep in mind that there has been preliminary studies that people who have Hepatitis C do much better on dialysis than with working kidneys. You can read more about this at CJASN

Transplant research might be great when they do not use toxic medications, so the new research on transplantation without anti-rejection meds might be promising, ask the transplant team about that.[/B]

All of you who post to this board are terrific examples of active learners. Learn what you need to learn and know what you need to know about what you should eat and avoid, what medications and diet supplements affect anti-rejection medications’ effectiveness, and how often you should have screening tests to protect your health. Do what you need to do to avoid skin cancer by wearing sunscreen and other protective clothing as needed and stay out of the noontime sun when you can.

Finally, if any of you get a transplant, please drop back by our boards to let us know how you’re doing.[/quote]

Thanks Beth. My transplant from Andy goes ahead on 31st Oct so it full steam ahead trying to keep all the ‘what ifs’ at bay.

Having been imuno suppressed for three years before dialysis trying to keep my FSGS from worsening I know only too well what the drugs can do. i ended up with a melanoma and too many Dasal Cell carcinomas to count. These of course were cause by many years in the aussie sun lying around on surfboards but were brought to a head by the immuno suppressants. So its Slip, Slop, Slap for me! (Slip on a shirt, slop on the sunscreen and slap on a hat- Aussie ad campaign)
Cheers
Mel