It’s time to check in with a couple of our favourite young people — Ferris Backmeyer and Zach Tremblay — each of whom is dealing with kidney disease and is in need of a transplant.
Both are regular visitors to B.C. Children’s Hospital. Ferris and her mother, Lindsey, have just returned to Kamloops from their most recent trip, while Zach and Jana have been in Vancouver for a few days now, and are likely to remain there for a while yet.
Lindsey and Jana both took to Facebook on Wednesday to update friends as to the latest happenings. Hopefully, these will provide some insight into what people have to deal with they as they and/or their loved ones deal with kidney disease.
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Ferris, who is about to celebrate her third birthday, does peritoneal dialysis on a daily
basis. She needs to gain weight, and maintain that weight, in order to have a transplant.
Here is a bit of what Lindsey posted:
“The take home from this trip is that she’s been managing pretty well from a dialysis perspective. Things are going well and our focus yet again seemed to be on growth . . . We have our wrapup from the assessment meeting with the transplant nephrologist Feb. 7. Our dialysis team is hopeful she will be ready to list/look into live donors by March.
“For the past few months we have seen audiology and ent each time we go down. Ferris’s hearing tests are abnormal. This took me by surprise as I’m fairly certain she can hear some stuff. She follows instructions and has conversations with us daily. However, I am starting to think that she likely can’t hear as well as we think and it’s likely why she isn’t speaking yet. And I mean no clear words . . . except no . . . and yah. She’s also increasingly frustrated that we don’t know what she’s saying (as she’s most definitely trying to talk) although learning some basic signs has helped with this.
“Anyway, they are taking it quite seriously and have put her on an emergent list and I’ve been told we will be back down likely within the next month for a hearing test done under general anesthetic and probable placement of tubes. After that, they will discuss whether she will need hearing aids. I’m hopeful that this might help her in the communication realm as we all know she is sooooo smart!
“She loves to draw and is practising her smiley faces. Her imaginative play is so incredible to watch. She will pretend her baby is hurt, sign for sad and then pull an imaginary Bandaid out of thin air and pretend to put it on, then say happy! She loves to dance and her favourite songs right now are ‘Me Too’ by Meghan Trainor and Dance Monkey.
“In just a couple short weeks, little miss will be 3 and I can’t wait to see how she grows!”
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Lindsey ended her latest post with this:
“We also got to meet my friend Jana (Tremblay) and her kidney friggin warrior Zach!! Was by far the best part of this trip for me!! It was so nice to chat with people who are dealing with something similar to us! I hope to meet up with them again sometime soon, and hope even more that Zach gets the kidney he so desperately needs!!”
It is tremendous news that Lindsey and Jana finally met and you can bet that they will continue to communicate with each other. This kind of support is invaluable and is the reason why we started the Kamloops Kidney Support Group. Words can’t express the importance of being able to meet and talk with people who can relate to what you have dealt with and are going through.
(BTW, the KKSG’s next meetings are Feb. 8 and 12; we meet on the the second Saturday (9 a.m.) and Wednesday (10 a.m.) of each month.
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Jana and Zach, who are from Robson, B.C., remain at B.C. Children’s Hospital as Zach, 16, is transitioned from peritoneal dialysis to hemo. On Wednesday, Jana posted:
“We have had a few big changes and a few tough days. Our boy is a rock star though, as always, and seems to be handling these things with courage and more grace than most adults would.
“Peritoneal dialysis is no longer working for Zach. On Friday, he had surgery to have a hemo catheter placed, and we will be transitioning over to hemo dialysis permanently until we can find his match.
“We have no time frame on coming home atm. We are just working to get him successfully running hemo, and to be a healthier him.
“I don’t have many more answers than that at the moment .
“Please keep him in your thoughts and prayers as we make this leap into the adult world of dialysis. We can’t move here for him to have treatment 3x per week, and the local dialysis unit in Trail is not connected to Children’s in any way, so our dialysis time here, and with our team, will come to an en . . . Bittersweet, but life.
“Please keep sharing his story in hopes it reaches the right set of eyes!”
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If you would like more info on being a living kidney donor:
Living Kidney Donor Program
St. Paul’s Hospital
6A Providence Building
1081 Burrard Street
Vancouver, BC V6Z 1Y6
Tel: 604-806-9027
Toll free: 1-877-922-9822
Fax: 604-806-9873
Email: donornurse@providencehealth.bc.ca
“The Ministry of Health is seeking a contractor to build an organ and tissue donation registry, and it’s leaving its options open in case the province later adopts an opt-out donation model,” Arthur White-Crummey of the Regina Leader-Post wrote earlier this month. “Health Minister Jim Reiter revealed the government’s plans for an online registry in March of last year, signalling that the system should be up and running by the end of the fiscal year in April.
“The plan is now moving forward after a slight delay. The Ministry of Health posted tender documents Thursday seeking proposals to build the system. It is now hoping for the registry to be available to the public, “ideally,” by mid-June of this year.”
The complete story is right here.
TAKING NOTE 