© Guardian photo by Charlotte MacAulay
Lindsay Ross is waiting to go through the workup to get on the kidney transplant list. Apart from her trips to dialysis treatments, she spends a lot of time at home with her dog Wally who is happy to have all the attention.
Lindsay Ross is a slight 25-year-old who longs to travel.
Since 2011 most of her travelling has been from her home in Dundas to the Souris Hospital three times a week for dialysis treatments.
She is a good candidate for a kidney transplant, but right now her journey to that end is stalled.
The procedure to get put on the actual transplant list starts with a medical workup including bloodwork, ultrasounds, x-rays, dental checkup and more.
Though all transplants patients from the Maritimes are put on the same list and the surgery is done in Halifax, the workup is the responsibility of each province and right now P.E.I. has a backlog.
Ross is essentially waiting to wait.
In 2008 she was diagnosed with nephritic syndrome, a disease where the membrane of the kidney leaks protein into the blood and urine. Initially her condition was controlled with medication.
“I started dialysis the end of April 2011. In 2009, Dr. Jones (one of the Island’s two neuphrologists) said I would start my workout that winter,” said Ross.
Winter came and she was told she would have to be on dialysis for six months, then a year.
“When that year was up, in spring 2012, I was told about the waiting list and the fact that the workup would be done whenever they could get to me,” she said.
Lanea Harris, provincial renal co-ordinator, said the renal team is working closely with the transplant team in Halifax to alleviate wait times.
“Due to the rapid growth in the hemodialysis population that P.E.I. is experiencing, the need for kidney transplants has grown as well. In March 2009, when the Renal Clinic opened, there were 44 hemodialysis clients. Today (Nov. 9), there are 85 clients, which is a 93 per cent growth,” Harris said.
Though P.E.I. has a lower population base, numbers from 2011 show a significant difference in the Atlantic provinces’ transplant rates.
According to the multi-organ transplant statistics, there were 104 kidney transplants in total in 2011.
The breakdown is P.E.I. - 7, N.S.- 43, N.B. - 30 and N.L. - 24.
The current waiting list for kidneys as of November 2012 is P.E.I. - 13, N.S.- 120, N.B. - 64, N.L. - 41.
For Ross, the three times weekly dialysis treatments, where her blood is cleaned for three and a half hours each session, is taxing, but she said is grateful to have the life-sustaining treatments while she waits.
“It is frustrating. I think they just really need a transplant co-ordinator to do all the workups,” she said.
The Kidney Foundation of P.E.I. agrees.
“It is incredibly frustrating knowing that Island patients need transplants, but they may not even be on the proper waiting list,” said Crystal Ingersoll, the P.E.I. chapter co-ordinator.
These delays cause other complications, too, she said.
“And, unfortunately, it is possible for one test to become obsolete while waiting for the other tests to be done, which means more waiting,” she said.
It is the hope of the Kidney Foundation that the system will become more accommodating.
“A transplant is costly, but it is far cheaper to the health-care system than dialysis,” she said. “Furthermore, the amount of money saved doing transplants could easily cover the cost of a transplant co-ordinator.”
Ingersoll has crunched some numbers to come to this conclusion.
The average cost per person on dialysis is $60,000 annually, while the cost of transplant surgery is $20,000 plus $6,000 in the first year after surgery.
While a co-ordinator would alleviate some of the waiting, being on the transplant list doesn’t guarantee an immediate transplant. Colby Younker knows that all too well. He has been on the list for six years waiting for a compatible donor.
“It is a waiting game. You never know when that call might come,” he said.
If a kidney did come up, he said that would be great, but the dialysis treatments are working for him and he is content to keep things the way they are now.
Ross is looking forward to taking the next step.
“It would be good to get a transplant and get on with my life and be able to get a job and travel and do everything that I can.”