Waiting to wait

Charlotte MacAulay
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Lindsay Ross is waiting to go through a workup to get on the kidney transplant list

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.”

Organizations: Souris Hospital, Kidney Foundation, Renal Clinic

Geographic location: P.E.I., Halifax, Dundas

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Recent comments

  • DialysisPatient
    November 30, 2012 - 21:52

    Life Experience Needed: I must ask what the need for a provincial transplant coordinator has to do with business owners? I don't understand your post. I've been on the list myself for nine years, and things were different when I had my workup done. It was all done in Halifax. Since the province took over the dialysis service a few years ago, it appears things have changed. The doctors and the renal nurse don't have the time to coordinate all the appointments necessary for the transplant list workup. If there was a provincial coordinator to do this work, people could get on the transplant list faster, instead of what's going on now. It's possible for those who are waiting to get on the list, that their potential kidney may pass them by while they are waiting, and that's not really fair.

  • shirley
    November 27, 2012 - 21:15

    Everyone thinks the health care is so wonderful, yet people are dying everyday because they can't get there own Dr. wait month & yrs for a simple test, and everyone just goes along with it. Isn't it time Islander stood up for themselves, Like the baby @ the QE this summer that was sent home with advil, and they have the gall to blame the parent. So why would you actually think that you might get help to get on a kidney transplant list. Wake to hell up people. Giz wouldn't wait that long or anyone close to him. So why are you all sitting back & doing nothing

  • MARY LIVINGSTONE
    November 27, 2012 - 09:50

    my youngest son was at age of 12 was sick for one year and went to Toronto Sick Childrens hospital and doctors were working on him for a very quite long time ..Found out that he had renal kidney infection.. had to remove one kidney out.. waiting for donation....my 4th child wanted to donate one of his kidney to his brother.. it was matched. he got his on valentine's day -was age of 18. lasted it for 16 years.. got another ones transplanted from strangers.so i want to say good luck to lindsay ross.. Mary Emily Livingstone from Oshawa, Ontario

  • Bobby
    November 27, 2012 - 07:34

    Not only are people told they will wait years for the work up if a kidney becomes available on the donor list but this is the same for people with a live donor. I know of a person who has kidney disease who is not yet on dialysis who was told that he may have to go on dialysis for three to four years when his kidneys eventually fail because there is no kidney cooridinator on PEI. This person has a family member willing to donate a kidney when the time comes. This is a position that would cost little to the government but the lack of a kidney coordinator is a major cost to all kidney patients.

  • Not surprised
    November 27, 2012 - 05:53

    This does not surprise me in the least. PEI gets 3rd world health care in many respects. There are some good Dr.s and nurses here but they are overwhelmed and burdened by a penny pinching system that doesn't care about the well being of Islanders. They don't mind stealing money from immigrants to line their pockets though (PNP). Government here is corrupt and heartless. We left the province (only connection to home is some friends and the Guardian website now) to get necessary health care and found that in any other province we were in it was so much better, faster and easier to the care we needed. You'd probably have a better chance of survival in some backwater 3rd world country than in PEI. My guess is, the powers that be just want those who are really sick to either leave or just die so they don't cost the provincial treasury any more money. I feel so sorry for the Islanders that remain if they have a health incident at some point. Once you get stuck in that system, you'll understand how the PEI Dept of health has developed a system where your life and well being is worthless to anyone but you and your family. I hear they spent millions of $$$ on a fancy front door/foyer to the QEH though. Who cares, the door is supposed to just be a door to get you in to the help you need. Instead it's a wonderfully wrapped Christmas present box that if you're lucky contains a lump of coal but most likely contains nothing but heartache. God help you all but it's why we left.

  • jimbo
    November 26, 2012 - 21:16

    You darling you. If I won the 649 or the lotto max I would guarantee that you would be on top of my list to help out. Don't give up hope I am a donor and there are many others. My prayers are with you.

    • Life Experience Needed
      November 26, 2012 - 22:31

      Business owners have already commented about how this is going to hurt their businesses more then help them. Many retail business will lose money because people will not be able to afford shopping there. We will have less people coming from nearby provinces to shop because now our taxes are the same as theirs and there is no longer an incentive. I would also have no problems with paying higher taxes if I felt the government would use the money to benefit the province. Instead it is wasted on make work projects and bad investments.

    • dm
      November 27, 2012 - 02:12

      Jimbo like a lot of ppl these days you've been watching too many hollywood movies or something if you read the article its not a matter of money to buy the kidneys its finding a compatible donor is what takes most of the time, if she had big money and went to the states she would still be put on a waiting list there.