Ferris Backmeyer, our favourite three-year-old, and her mother, Lindsey, spent a couple of days in Vancouver earlier this week. It was their first trip since the end of January; prior to that they had been there five times in four months.
As Lindsey put it in a Facebook post, the lack of travel has been the family’s “COVID silver lining.”
Shortly after birth, Ferris was diagnosed with Mainzer-Saldino syndrome, a disorder that impacts the kidneys, liver and eyes, and causes skeletal abnormalities.
She has been doing peritoneal dialysis (PD) since she was 14 months old, and now is on the active list as we try to find a donor — preferably a smaller adult — for a kidney transplant.
After their most recent trek to Vancouver, Lindsey posted an update on her Facebook page that I have edited for size:
“Ferris amazes me at how tolerant she is of medical appointments and procedures,” Lindsey writes. “We had nine hours worth of appointments in two days. So much of it is an adventure for her, especially since COVID — a major outing where everyone just oogles over how cute she is.
“She mostly has a ‘just do whatever you need to do’ attitude for ultrasounds, ecg’s, physical exams, vitals. Puts on the bravest face for needles and has been mostly getting through without any tears.”
However, it seems Ferris has thing about having her height measured . . . unless it’s at home.
“It’s like the biggest, most insane meltdown every single time,” Lindsey writes. “Exhausting. I’m certain I get the most accurate heights at home because she loves having her height measured at home! lol”
Lindsey writes that the trip was mostly uneventful.
“Renal management has been a little extra to manage lately — as in talking to them on the phone and by email every weekday for the past couple of weeks. It’s been a concern of mine that maybe they are thinking dialysis isn’t working very well. We’ve had a few episodes lately of inadequate fluid removal. They confirmed that it’s something that’s on the radar but we are seemingly back on track for now.
“They also assured me we won’t just treat numbers and we will go with how she’s feeling and she has been having some great days! However, only a few days of dialysis not working and she wouldn’t feel good at all. Everyone’s just got their fingers and toes crossed that PD will continue to work for her until she gets transplanted.”
Of course, Ferris has other issues than her kidneys, and vision is one of them.
“Ferris has retinal dystrophy and her vision is affected,” Lindsey writes. “So far we see difficulties in dim light and blindness in the dark. Her peripheral vision is also affected. That’s what we are observing, although I’m guessing with how adaptable she is, it’s probably worse than we even think. . . . I would say she definitely can see pretty well for the most part but we definitely can see some visual disability. . . . They have decided we should try glasses…so that’s up next!”
Lindsey also noted that they “met with anesthesia as well (for) a pre-transplant assessment. . . . He helped affirm my feelings that while she has risk factors, she’s been doing so well in a lot of ways. She handled anesthesia fine before, her heart is in better shape now, lungs are doing great, liver has chilled out with medication . . . no reason to believe she won’t have a successful kidney transplant!”
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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
It was Saturday evening when I posted here about Dorothy and I knowing seven people awaiting kidney transplants.
The ink wasn’t dry, as they used to say in the newspaper business, on that post when I received a note from a hockey friend.
It seems he now is waiting and hoping, just like the others.
He was telling me I could “add another acquaintance to your list as I, too, now need a transplant.”
His GFR is at 12. If you aren’t familiar with it, GFR is Glomerular Filtration Rate and it is the measure of kidney function. In short, his kidneys are working at 12 per cent.
When Dorothy’s GFR got to 11 in 2009, the staff in the renal clinic here began preparing her for dialysis. Things have changed in the past few years and, depending on circumstances, some people have been kept off dialysis until their GFR slid to eight and even six.
He will be finding out in the immediate future “if they will begin dialysis.”
As I wrote, he now is waiting and hoping.
Waiting to find out about dialysis, all the while hoping for a transplant.
——
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
The list grew to nine on Sunday afternoon when I came across a story in Kamloops This Week on Rosalyn and Jim Butterfield, who have joined the Kamloops Kidney Support Group on occasion.
Rosalyn and Jim are working to find a kidney for their son, Mike, who is 44 and has polycystic kidney disease, which is commonly referred to as PKD. While his parents live in Kamloops, Mike lives and works in Vancouver. He now is in Stage 4, so the next step will be dialysis or a transplant.
Sean Brady’s story on the Butterfields is right here.
——
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
The list grew to 10 with the discovery that the son of family friends on the Prairies, who is doing hemo-dialysis, has begun the preliminary work involved in the process of having a transplant.
The point to all of this is that we all need to be aware that kidney disease isn’t going anywhere. In fact, the inroads it is making are scary as it becomes more and more of a factor in our daily lives.
Think about these numbers that I found on the Centers for Disease Control and Prevention (CDC) . . . Yes, they are American, but you would have to think the numbers for Canada are close to these . . .
15 percent of U.S. adults — 37 million people — are estimated to have chronic kidney disease;
Nine in 10 adults with CKD don’t know they have it;
One of two people with very low kidney function who aren’t on dialysis don’t know they have CKD.
TAKING NOTE 