The pressures of living with a youngster who needs a kidney transplant . . . How would you handle it?

For this exercise, you are required to suspend your belief mechanisms. Forget about your life for just a few minutes.

Forget about your normal comfort zone, or at least what used to be your normal comfort zone before 2020 arrived.

For the purposes of this exercise, you and your husband have three daughters. Despite having not yet turned four years of age, the youngest daughter has been doing peritoneal dialysis (PD) at home since she was 14 months old. Yes, she needs a kidney transplant. Other than a brief spell this season, she has been on the deceased donor list since early this year.

The summer of 2020, pandemic aside, hasn’t been much of a summer for you, at least not until the last couple of weeks. There were weeks spent in Vancouver after the youngest developed a PD-related infection.

You were able to return home in mid-August and you have worked to get the family unit back together while spending a week camping. It was great.

The plan was to come home for a day and then head out for another four-day camping adventure.

And then the phone rang . . .

Your youngest daughter is small. She has trouble putting on weight and keeping it on. This has been a major concern with the nephrologists and transplant surgeons. But her weight now is at a point where they feel that she is ready.

But you also know that a kidney from a live donor is the ultimate gift. Yes, a deceased-donor kidney is good, but one from a live donor would be so much better.

So you got home from the first camping trip at 3:30 p.m.

And the phone rang 30 minutes later. . . .
It was a nephrologist from B.C. Children’s Hospital (BCCH) telling you that they had a kidney. If there is to be a transplant, you are going to have to hit the road to the big city, like, right now.

But this nephrologist is a favourite and your brain is going a million miles an hour and you need to unpack from camping and you need to pack for another long stretch in Vancouver and . . . and . . . and . . . what about the other girls . . . what about the four-day camping trip . . . and . . . and . . . and . . .

The nephrologist, one you really trust, spells out everything. He explains that your daughter isn’t hard to match; in fact, there have been other potential deceased donors who have been rejected, mainly because of concerns over her size. He points out that she really hasn’t been on the kidney wait list for all that long, and adds that more time for her to grow isn’t a bad thing.

He explains that this particular donor was of ‘exceptional distribution.’ That means that there would be a higher risk of that person passing a disease along to your daughter. Yes, that is one of the risks associated with transplants, but you have known that from the get-go and haven’t looked at it as a deal-breaker.

Oh, what to do!

You’ve got camping behind you. You’ve got camping ahead of you. Or do you? Are you ready to walk away from that and spend another couple of months, or more, in Vancouver? And what of your daughter? You want to fall on your knees and ask: “Why me? . . . Why us?” But you know you can’t do that. You know that this is the responsibility that comes with parenthood. Maybe not to all parents. But it has happened to you and you know that you have to deal with it.

Over the past two years, you likely have cried more tears than there are stars in the heavens. And, yes, you knew the day — the moment — when you would be faced with this decision likely was going to come.

The responsibility that comes with being parents in this situation borders on soul-crushing. But you know one other thing . . . life goes on.

Before the phone call ends, you make the decision. You take a long, deep breath and you decline the offer of a kidney from a deceased donor.

At the same time, you know there is a live donor engaged in the testing process. You had hoped that it all might have gotten done while you were in Vancouver earlier in the summer. But it didn’t happen, something you found oh, so disappointing. Your understanding is that the testing has gone well, but you think that final results still are a couple of weeks away. At the same time, you know that things can change. You know that in your game nothing is certain. You have your fingers and toes crossed; the rabbit’s foot is in your pocket. You are hopeful . . . but you just never get entirely used to living with all of the uncertainty.

You only hope that you made the right decision in declining that kidney. As much as anything, your gut told you which way to go, and you are prepared to live with that.

So you unpacked and packed, and you got ready for four more days of camping.

You got everyone to bed, but . . . the youngest awoke at 1 a.m. One of the devices used in PD needed changing. So you changed it. Finally, it’s time for you to go to bed. But you check on her one more time. And you find that the transfer set has disconnected and she is soaked in dialysis fluid.

You are ready to tear out your hair. You are ready to scream to the high heavens. But there isn’t time for that. You know that a disconnection such as this could be a disaster because of the risk of contamination.

You clamp the line and get her to the hospital where a new transfer set will be installed in a sterile procedure. By now, it’s 3 a.m., and when you get to the hospital you find that it is busy. Lots is going on. But they find a nurse who has PD training and, between the two of you, the job gets done, and you are home by 4:30.

You still can’t go to bed, though. You have to do three flushes of the system and then collect a sample that can be checked for infection. You are in bed, finally, at 6 a.m., and up three hours later. You have to get the sample to the lab, fill prescriptions . . . and get packed . . . and leave for the lake.

While at the lake you are flooded with emotions. You realize the enormity of the decision that you made. You know that you have to live with it. All the while you are keeping a close eye on the young one because of the fear of infection. You’ve already dealt with one infection this summer; you really don’t want to see another one. But you know that you have to play the cards that are dealt. So . . .

Still, your brain won’t shut off. When you made the decision, it just felt to you that if the transplant was complicated or didn’t go well you’d never forgive yourself for not waiting for a live donor.

But with the decision made and days sliding by, you are thinking that if an infection rears its ugly head you may have made a huge mistake.

Despite everything, the four days of camping are great. The only complaint is that they fly past. The five of you hung out together and it was fun. The two older girls are amazing and for that you are forever thankful. The way they cope with all that swirls around them is a story in itself. When you think about what they have gone through over the past couple of years it’s hard to keep the mist from your eyes.

With the camping days behind your family for now, you are thinking that you made the right decision. The little one is almost back to her old self, before that infection hit and stole her energy. Her mood is better, more positive, these days, and she isn’t as withdrawn as she had been. Even with all that she has been through over the past couple of months, she has made progress as a person and her personality has grown. Yes, she is shy, but there are signs that she is coming out of her shell around other people.

And now you’re home again. It’s the last long weekend of this crazy summer, and you know that things are about to get nutso. School. Your work. Your husband’s schedule is in the mix. There is care for the little one to consider. There was a lot of support for you during the last school year, the one that ended prematurely, but some of that won’t be there this time and you’re not sure how it’s all going to come together.

But you have learned over time that life goes on. Yes, it does.

——

OK. You got all that? Now take a minute and think about it all. Think about having to make a decision of that magnitude. We’re not talking about standing in front of a cooler and deciding whether to buy one litre of milk or two. This is about having the life of a child in the palm of your hand. Think about having to make that kind of decision.

That’s what Lindsey Backmeyer, her husband Pat, and their two older daughters, Ksenia and Tavia, have been through over the last while as Ferris, the youngest member of the family, continues to deal with health issues.

With the calendar having turned from August, Lindsey wrote on Facebook that she “really hadn’t looked at September at all until this past week because, well . . . it’s September. So yeah, we got this. We totally got this.”

Yes, Lindsey, you do. You really do!

——

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.

Six weeks after the not-so-excellent adventure began, the Backmeyers are together again . . .

The latest chapter in the lives of the Backmeyer family has ended and they are together again, all five of them, in their Kamloops home.

It was in late June when Ferris, 3, who had been doing peritoneal dialysis (PD) since she was 14 months old, was diagnosed with fungal peritonitis. That meant, in short, another trip to B.C. Children’s Hospital in Vancouver, the removal of the PD catheter, a brief switch to hemodialysis, and then a move back to PD, all in the span of about six weeks.

Tavialeft
Tavia and Ksenia . . . they show maturity beyond their years. (Photo: Lindsey Backmeyer/Facebook)

Ferris and her parents, Lindsey and Pat, were in Vancouver the whole time, while older sisters Ksenia and Tavia (aka The Bigs) got in a three-week visit.

Upon returning home, Lindsey, as she has done throughout, turned to Facebook and bared her soul. (We can only hope that folks in the renal community have been following Lindsey’s writings, because her musings shouldn’t be lost to the ravages of time; rather, they should be edited and packaged as a support guide to parents who find themselves in similar circumstances.)

In her latest entry, Lindsey touches more on The Bigs than she has in the past and, in doing so, provides a real look at the impact a situation like this can have on the family unit.

“There really aren’t enough words to say how good it feels to be home and together as a family,” she writes. “Our final day went so well! Anesthesia used (Ferris’s) PD cath to put her to sleep and then placed the IV. There were no tears with the procedure and we were back in Kamloops by 5 p.m.

“I got to see the bigs! Oh how I missed these big girls so incredibly much!! Ugh let me tell ya . . . we’ve spent 30 days apart this summer and it was really just much too long. It’s not how we’ve done things before but then the world just isn’t the same as it was the times before either.”

In April 2018, Michael Potestio of Kamloops This Week wrote: “A few weeks after she was born, Ferris . . . was informally diagnosed with Mainzer-Saldino syndrome, a disorder characterized by kidney disease, vision loss and misshapen bones.

The disease is caused by gene mutations and is so rare there are only about 20 known cases, according to the U.S. National Library of Medicine.”

That diagnosis later was confirmed, and Ferris’s kidneys also were found to be failing.

The geneticist who made the diagnosis told Lindsey and Pat “that we would be responsible for the books our older children write as adults.”

Supplies
When your little sister has kidney issues, there are medical supplies in your home. (Photo: Lindsey Backmeyer/Facebook)

“At the time,” Lindsey writes, “the girls were 3 and 5 years old. I’ve had people tell me ‘Oh, that’s really harsh,’ or think it’s inappropriate. But the reality is that he really hit the nail on the head.

As Lindsey points out, Ksenia and Tavis are growing up “with a sister who is medically fragile.”

As a result, “they are comfortable and at home at places like (B.C. Children’s Hospital and Ronald McDonald House).”

Lindsey also points out that their Kamloops home includes “a kitchen full of medical supplies, a sister who is tube fed and is on dialysis in their parents’ bedroom and gets needles by mom and dad, and nurses in their home on a regular basis. I mean, the perfect making of some really good books if you do ask me!

“But man . . . the dynamic is forever changing. They are older now and the stakes feel really high.”

After being at home for two days, Lindsey says she is “pretty confident the girls will look back on this one as the summer that Ferris was sick but they got to do lots of fun things.”

icecream
Ferris was happy to be back at home where she could play with her ice cream truck. Caramel sundae, with pecans, please. (Photo: Lindsey Backmeyer/Facebook)

That included “a couple weeks at the lake with grandma and papa, sleepovers and camping with friends, and three weeks in Vancouver with us.”

Still, Lindsey recognizes that it just isn’t that simple.

“I can tell,” she writes, “that overall they had a really good summer but they also experienced a whole lot of feelings. Big ones. In chatting with them I can see such maturity and reasonable understanding of our situation.

“There isn’t resentment, just love and worry for Ferris. They feel loved by everyone who spent time with them. They will be amazing humans and hopefully write amazing books one day.”

At the same time, Ferris is back home and she knows it.

“Ferris is a completely different kid than she was a few days ago,” Lindsey writes. “She’s so happy to be home. She’s walking all over. She sure missed her ice cream truck and play kitchen. She is a different kid when her sisters are around in the best way possible. So yeah, home.”

And just like that it’s the middle of August and, in the Backmeyer family, Lindsey writes, it’s “the end to another chapter in the book I don’t have time to write.”

——

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.

www.transplant.bc.ca/health-info/organ-donation/living-donation