Ferris Backmeyer and her family will be together for Christmas at their Kamloops home. And if things go really well Santa Claus will gift Ferris with a new kidney. Please Santa!
Ferris, who will turn four years of age early in the new year, spent about four hours at B.C. Children’s Hospital (BCCH) in Vancouver last week. At some point early in January, she will be on her way back there, but this time she’ll be there for a while; in fact, her mother, Lindsey, expects it to be perhaps March or even longer before they’re back home.
In the early days of her life, Ferris was diagnosed with Mainzer-Saldino syndrome, a rare disease that, among other things, causes kidney failure. As a result, she has been on dialysis for almost three years now.
For the most part, Ferris has been able to do peritoneal dialysis (PD) at home — hooking up to a machine called a cycler every day.
Of late, however, there have been some issues with Ferris’s PD, especially in the area of draining. When someone does PD, the cycler performs a fluid exchange, removing toxins from the body and inserting clean fluids, doing the work normally done by healthy kidneys. Lately, though, Ferris’s PD hasn’t been working as cleanly as it needs to be.
So . . . early in January the medical team is expected to put her back on hemodialysis. As Lindsey points out, hemo “requires treatment four days a week so commuting from here really isn’t feasible.”
When Ferris and Lindsey go to Vancouver, it requires a team effort, with Lindsey’s mother helping out with the older sisters, Ksenia and Tavia.
As for Ferris, Lindsey says doctors “don’t plan to repair her abdomen right away. They are hoping fluid will get pulled off or will reabsorb.”
In a conversation with a nephrologist earlier this week, Lindsey says she was told that after Ferris underwent an MRI last week “he was surprised to see that there was a good amount of fluid in there. I can’t say that I am . . . it’s quite obvious there’s a good amount of fluid in there!”
The hope is that after some time on hemo, Ferris can have another catheter inserted into her abdomen and then transition back to PD. Unless a kidney comes available, that is.
“So we will go down. With no estimated return date. I feel like March will be a very best-case scenario . . . It’s crazy because they ‘gave us Christmas’ but we are feeling more isolated than ever. Christmas is going to be different and lonely just like living in Vancouver is.”
After the latest stint in Vancouver, this one short, Lindsey wrote on Facebook that “everyone is hopeful a kidney will fall out of the sky before or during that time” in Vancouver in January.
But, at least for now, Lindsey and Ferris are at home, along with the other three family members — Dad Pat and Ksenia and Tavia.
And the stress is there, too, having moved in like a bad boarder who just won’t leave.
When Lindsey posts on Facebook, the words sag under the weight that she and Pat carry with them on a daily basis.
“So we are at home,” she wrote. “It feels like the conditions for being able to stay here are many. Her dialysis management is more complex than ever. We were sent home without a dialysis prescription. We will be using how she looks/feels and her blood pressures to determine what we do each night from now until then, which means daily communication with all the Information. I’m fine with that if it means getting to be home right now. I get it and could totally just do our thing.
“It’s the gathering of information, the emails, the phone calls that wear me down. So many feelings really. So much shit to figure out.”
My wife, Dorothy, underwent a kidney transplant in September 2013 after almost four years of doing PD. So we dealt with kidney disease in our home for some time. But, and we talk about this on a regular basis, our load was and continues to be so tiny compared to what the Backmeyers have on their shoulders.
While working to steer Ferris through all of this, Ksenia and Tavia can’t be forgotten. There is schooling and friends and Lindsey’s work and Pat’s schooling and everything else that goes into the daily rigours of life. Oh, and let’s not forget that we have spent most of the past year living with this intruder — COVID-19 — having disrupted our lives.
“The wheels feel like they are falling off with all the logistics,” Lindsey wrote, and who can blame her, “but, man, you really wouldn’t know anything big is going on if you saw Ferris.
“She was definitely better a month ago (energy-wise), but she’s still as fiery as ever. Plays hard most of the day. Chatty as ever and forever the tiny dictator. She’s having big success in the potty-training department. She’s just so so sweet and my heart is sad for her.
“All any of us want for Christmas is a kidney for this sweet girl!!!”
Santa, are you listening?
——
Meanwhile, Julie Dodds of Kamloops, who underwent a kidney transplant on Oct. 28 and returned home less than four weeks later, was back at St. Paul’s Hospital in Vancouver for a follow-up appointment earlier this week.
All went well and the married mother of three boys is well on her way.
The next step comes next week when her file should be transferred to the Kamloops renal clinic at Royal Inland Hospital.
What a Christmas present for Julie and her family!
——
BTW, the 2021 Kidney Walk of Kamloops will be held virtually, as it was in 2020. Yes, Dorothy will be taking part, as she has since 2014. . . . She already has registered and her granddaughters, Averi and Kara, already have joined her team. If you are interested in making a donation — perhaps you are looking for a tax receipt for this year’s filing — you are able to do so right here.
——
I have written here before about how hard it is for someone with kidney disease and in need of a transplant to ask a family member, a friend or anyone else to consider being a donor. It’s not like asking for a $20 loan or to borrow a book or a hammer. This goes so much deeper than that and, in a lot of instances, the person needing the kidney has to overcome the feeling of not wanting to put their problem on someone else’s shoulders.
In an attempt to help their son find a kidney, a couple we know have come up with a terrific idea. They have had 75 Christmas cards made up and will send them to family and friends. Included will be information about their son and contact information for the Living Kidney Donor Program, contact information like this . . .
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
Tel: 604-806-9027
Toll free: 1-877-922-9822
Fax: 604-806-9873
Email: donornurse@providencehealth.bc.ca
——
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
kidneydonornurse@vch.ca
——
Or, for more information, visit right here.
TAKING NOTE 