Unless you have experienced it, you don’t have any idea how hard it is, how much courage it takes, to ask someone for one of their kidneys.
This isn’t like asking someone — friend or family — for $20, or to borrow a book or a lawn mower from a neighbour.
You are asking someone, maybe even a stranger, to take some time out of their life and to give you one of their internal organs.
Believe it or not, one of the things you have to deal with before you get to the asking stage is denial.
First, you are in denial that you have kidney disease.
Once you admit to yourself that, yes, you have kidney disease, you go into denial again because you just know that things aren’t as bad as the nephrologists are telling you. Surely, you think, someone misread one or two tests . . . or 12 or 14.
By now you are feeling fatigue, but you tell yourself that it will go away.
But it doesn’t. It lingers and, in fact, gets worse.
And now you’re told that you have Stage 4 kidney disease.
How do I know this? Because my wife, Dorothy, went through all of this before she had a kidney transplant on Sept. 23, 2013.
She had been born with one kidney, but that wasn’t discovered until she was 29 years of age. Years later, when the time came to go on dialysis (she did peritoneal dialysis for almost four years), she went through all the stages of denial. When it came to asking family members or friends for a kidney, she found it extremely hard because she didn’t want to burden anyone with her problems.
Julie Dodds of Kamloops has experienced all of that, but, like Dorothy, reality has set in.
Dorothy and I had coffee with Julie’s husband, Allan, last week, so I knew a bit about Julie’s situation. On Tuesday, Julie turned to Facebook in the hopes of finding a donor.
So the day has come . . .
Many of you already know, but it may still be news to some — I suffer from a genetic kidney disease called Medullary Kidney Disease Type 1, and have reached Stage 4
kidney failure. My kidneys are failing and I need a LIVING KIDNEY DONOR to have the best chance at life.
I understand that this is a huge request, but for myself, for my husband, who wants nothing other than to be able to save me from all of this, for my three boys, who still need their mom to be present and healthy in their lives, it would mean absolutely everything.
The unknown — what will my life look like? — has been very stressful, but the outlook for a living donor transplant is my best-case scenario, hands down.
WILL YOU HELP?
• Any healthy adult can donate one of their kidneys — and, thanks to paired kidney exchange, you don’t have to be a blood-type match to the recipient!
• You only need one kidney to live a healthy, long life.
• Most donor surgery is done laparoscopically, meaning through tiny incisions.
• The recuperation period is usually fairly quick, generally two weeks after 1-2 days in hospital.
• The donor will have a separate team of healthcare professionals to evaluate her/him as a living donor. Their job is to help you understand the risks and benefits and look out for YOUR best interests.
I am listed at the St. Paul’s Hospital living donor program at 604-806-9027, or you can go to the BC Transplant website (www.transplant.bc.ca) for more information. Should you choose to call and say you are interested in donating to me, you are under no obligation and can back away at any point.
Please feel free to ask any questions and follow along on this journey. Your support will mean so much to our family.
Also, please share this . . . you never know who this will reach and could be my person!
Julie and family.
A few notes about Stage 4 chronic kidney disease (CKD) . . .
The key number to people with kidney disease is the glomerular filtration rate (GFR). If you are in the company of people with CKD, you often will hear them ask: “What are you at?” In other words, “What’s your GFR?”
Those with kidney disease have their blood checked regularly, which is how the GFR is found.
Once a person’s GFR slips to between 30 and 15, they are in Stage 4, which means that a kidney transplant or dialysis (hemo- or peritoneal) is looming.
When the GFR falls below 15, the person has kidney failure, and it’s time for dialysis or a transplant.
If you need a kidney transplant, the best you can hope for is a living donor who is a sibling.
Failing that, you are able to enter the Living Donor Paired Exchange Registry. By doing that, you are hoping to find someone who is a match and willing to give you a kidney.
In the end, Dorothy got a kidney through that program. Her best friend was eager — yes, eager — to donate a kidney, but she wasn’t a match. Through the Paired Exchange, she agreed to donate a kidney to someone, but only if Dorothy got one from someone else. That’s exactly what happened.
To this day, we don’t know who gave Dorothy a kidney, nor do we know who got the friend’s kidney.
If you are contemplating being a donor, it’s worth keeping in mind that you will have to undergo a battery of tests before you are selected. During these tests, if you are found to have any medical issues, you will be able to get treatment. While that likely would end your chances of being a donor, it just might lengthen your life expectancy.
Should you end up being a donor, doctors will tell you that were something to go wrong with your remaining kidney, you would go to the top of the waiting list for a transplant.
If you are at all interested in helping Julie, call the number at St. Paul’s Hospital. Do some research. Learn about the kidneys — how and why they function.
And always remember that, as Julie mentioned, you aren’t under any obligation and are able to change your mind at any time.
Julie’s husband, Allan, has a website up and running, too. It is called You Don’t Need Two, and you will find it right here.