Could it be that Ferris Backmeyer is through with hemodialysis?
Ferris, 3, is in Vancouver with her mother, Lindsey, and father, Pat, while the medical staff at B.C. Children’s Hospital tries to get her kidney situation straightened out a bit.
Ferris, who is from Kamloops, had been doing peritoneal dialysis (PD) at home until an infection brought that to an end. In Vancouver, she was transitioned to hemo, but had some issues.
Lindsey wrote on Facebook on Saturday that she is “cautiously optimistic that (Friday) was her last hemo.”
Lindsey continued: “The best news is that she’s active again on the deceased transplant list!”
Ferris had been placed on the list earlier this year and the family had been given the OK to look for a living donor. But all of that ended when Ferris was laid low by the infection.
Now the Backmeyers are starting to think about coming home.
Lindsey said they are “trying not to get too exited, but if labs are good and her weight isn’t up too much Monday they will book to have the central line removed Wednesday or Thursday. Once it’s out . . . we can come home, home!!”
Ferris has been on dialysis, usually PD, since she was 14 months old. She now is 3.5. So all if this isn’t new to Lindsey, who has been’t shy about explaining all that has happened during the family’s journey.
On Saturday, she wrote that “this whole experience has been eye-opening to say the least.”
She added that they have always known “how vulnerable and fragile Ferris is” and that she feels “we already had a good handle on that.”
But, Lindsey wrote, this last while has given them a look at “what life after transplant might look like . . . a little window of what’s to come.”
Someone doing PD hooks up to a cycler every single night; there aren’t any nights off. During this stint in Vancouver, with Ferris doing hemp for a bit, there were days without treatments.
“It was surely nice not having to connect her to anything at home,” Lindsey wrote. “She slept so much better not being on PD at night and it was very nice for her to be able to just go to bed whenever and wake up whenever without having to stay in bed to finish treatment.”
With Ferris back on a waiting list for a transplant, Lindsey admitted that there are scary moments when thinking about that happening, but . . .
“As terrifying as transplant feels,” she explained, “living on dialysis is equally as scary. While having its perks . . . hemp is not ideal for a kid Ferris’s age. And not so much the act of having to go into the clinic four days a week for 3.5-4 hours. That part is fairly easy. It’s the managing of a dangly central line, a line that was technically difficult to place and literally her life line.”
There also have been other issues with which to deal.
“Her skin is so angry from the dressing (we’ve tried a couple different kinds),” Lindsey wrote. “She has crap for energy and they can’t seem to catch up on red blood cell production despite majorly increasing both dose and frequency of her aranesp injection.”
Patients with chronic kidney disease who are on dialysis are treated with aranesp in the hopes of increasing the red blood cells.
“And the biggest one . . . not being able to come home,” Lindsey wrote. “PD is a lot safer and will allow us to come home and for that I’m so grateful!
“Thanks so much to everyone who has literally carried us through. I miss home. I miss our friends. I really miss my big kids. Heck I even miss being able to go to work.
“Home soon, we hope!”
They actually tried PD earlier in the week, going with what Lindsey said were “really small fill volumes for 13 hours.”
She added: “It went pretty good. Even removed some fluid which no one really expected. She’s had some drain pain which definitely sucks.”
At that stage, Ferris’s blood pressure was “all over the map,” although “she looked completely fine and was happily smashing Play-Doh.”
There also have been hemoglobin issues which Lindsey feels has been “majorly contributing to her lack of physical energy.”
But there have been improvements.
“She’s playing on her feet more and she wants to swing big and high on the swings again,” Lindsey wrote. “She’s in a much better mood. However, she’s still really weak when it comes to walking — she isn’t really walking much at all.”
Hopefully, more PD and end of hemo will get Ferris feeling more energetic.
In the meantime . . .
If you are interested in being a living kidney donor, more information is available here:
Living Kidney Donor Program
St. Paul’s Hospital
6A Providence Building
1081 Burrard Street
Vancouver, BC V6Z 1Y6
Toll free: 1-877-922-9822
Vancouver General Hospital Living Donor Program – Kidney
Gordon and Leslie Diamond Health Care Centre
Level 5, 2775 Laurel Street
Vancouver, BC V5Z 1M9
604.875.5182 or 1.855.875.5182
Or, for more information, visit right here.
So . . . you have kidney disease and a transplant is in your future. You know that having a living kidney donor is the best you can hope for, but you are reluctant to ask someone else for one of their organs. . . . I can relate. Dorothy went through that exact scenario. After four years of doing peritoneal dialysis (PD), she got a kidney through the Living Kidney Donor Program, with her best friend giving up a kidney in order for Dorothy to receive one. . . . If you find yourself in that position, Risa Simon has written a piece that may help you at least get started. It’s right here and well worth a read.
So . . . you have had a kidney transplant. How do you celebrate the anniversary of that exciting moment in your life. Perhaps you go to your favourite restaurant. Maybe you open a bottle of your favourite wine. . . . If you’re Nicky Clifford, who had a kidney transplant more than 26 years ago, you go walking on a wing. Yes, you do. . . . Check out her story right here.