Our shocking news came when my daughter Stephanie was only 15 years old – end stage renal failure.  What did that mean?  Why was this happening?  Stephanie underwent numerous tests and the cause was determined to be congenital.  As a mother, I couldn’t help but feel like this was my fault, that I had done something wrong.  Although I was assured many times this was not the case, still to this day questions linger on my mind about what I could have done different. 

Her father and I had separated. I was a single mother now raising a seriously ill teenager.

Stephanie began dialysis and a medication regimen right away.  We were living a nightmare.  Stephanie was terrified of the whole dialysis process and was refusing to take her medication.  Every day I feared I would lose her.  With the tremendous support of the nurses, Stephanie eventually accepted her situation and got into a routine of three-times-a-week dialysis and daily medications.  This became the “new normal” in our lives. 

In 2002, Stephanie received her first transplant from a living donor, her uncle.  This gift came right before her high school graduation and was like a new beginning.  Stephanie moved to Ontario to study culinary management and started work there following her graduation.

In 2008, her transplanted kidney failed and she wanted to return home. That was the end of that new beginning.  She was back on dialysis, now working full time and trying to have a social life like most young adults enjoy. 

We had been informed that Stephanie was one of 4 Manitobans who have antibodies that would most surely reject a donated organ and that she would need to match with someone with those same antibodies. After five years of being on the regular wait list here in Manitoba, Minneapolis will offer to assess these types of patients for suitability to be added to their specialized list of patients in a similar situation.  According to the documents we received the wait time on this list was one to two years. Donors may come from Minnesota, Wisconsin and surrounding states. 

In 2014 we travelled to Minneapolis where she underwent an extensive interview, blood tests and physical examination.  A few weeks after returning to Winnipeg she received confirmation that she had been put on their wait list. A new waiting game began.

They say time flies and it was one short year later that Stephanie received a call about a possible match.  She wasn’t the only eligible patient and after a couple of sleepless nights waiting, in the end the organ was given to someone else.  It’s true sometimes second place just isn’t important, at least that’s what I remember thinking.  But life goes on so we settled in to wait for the next time.  To our surprise, a mere two weeks later again the phone rang.  Again Stephanie was in the organ lottery.  Except this time, she won first place.

Cross-match wise, it was a perfect 5/5, and that rarely happens especially when it’s not a donor from the family.

As I look back on all Stephanie went through, all my internal angst, helplessness, stress and worry up to this moment, I believe this organ was THE ONE.  I would consider myself more of a spiritual person than a religious one; I believe in karma, good or bad, and this was definitely good!

Although we don’t know much about the donor, we do know that someone’s child was on life support and made it possible for my baby (that’s right, still my baby!) to get her kidney and a good part of her life back. It would be wonderful to at least have contact information to let them know how very grateful we both are for this gift although I’m honestly not sure that we would be able to find the words to express that.

It was a real nail biter for almost 3 days. We flew down there based on a 98% chance Stephanie was getting the kidney, it wasn’t until we landed and walking through the airport that she got the call confirming it was a sure thing.  We got to Minneapolis at 2 pm and she was in the OR by 6 pm. 

Although the road to surgery has been bumpy and there were some complications when we got back to Manitoba, Stephanie continues to be happy and healthy today.  She understands the importance of drinking at least three litres of fluids a day and taking her pills diligently. Every day. At the same time, two times a day. She is currently works at a bistro, putting her culinary skills to delicious use!

My advice to those experiencing this journey is short – accept all offers of help, be they emotional or physical – this is not a time to let pride get in the way, and most importantly remember to find a reason to laugh often, you’ll be amazed what a great medicine that can be.

If I had to assign a feeling to this journey with Stephanie it would be as Bob Marley says: “You never know how strong you are until strong is the only choice you have”.