Let's talk

A year ago today, a fabulous lady named Amy, donated her kidney to the mother of someone she knew from the social media community after hearing about her mother's need of a kidney on Twitter and Facebook.

Anu Dwivedi was diagnosed with Chronic Kidney Disease (CKD) 10 years ago. In October 2010, with less than 20% functionality in both kidneys, Anu faced dialysis & a two to six year wait on the transplant list. Her daughter, Kirti, a social media enthusiast, started a Facebook page in October 2010 to help educate people on kidney disease & organ donation, and, hopefully, find a donor match for her mother.

Amy found out about Anu’s struggle from Kirti’s Facebook page in January 2011. Amy herself had suffered the loss of her father years ago (sound familiar?), and she offered to donate her kidney to Anu with no hesitation. "You have one mother; I have 2 kidneys.". 

Amy and I belong to a lot of the same circles in social media land and a couple of groups that relate to living donation. In one of these forums yesterday, she was lamenting how angry she was that more people don't talk about living donation and she doesn't understand why. I don't really have the answer and that kind of bothers me.

Here is what I do know. We need to talk about it. It is going to make some people uncomfortable. There are going to be naysayers, saying that living donation is inherently dangerous, we were born with two kidneys for a reason and so forth. They will cite all the bad news stories they can find where the recipient or donor had a bad experience or worse, died (less than 0.03%!!). There are going to be people who think we, as donors, are just looking for attention from the media, our peers, our communities so that we can be told over an over what a selfless, wonderful thing we did (um, no). Believe me, I am equally uncomfortable with both of those camps of naysayers. But we have to keep talking.

I recently was chatting with a surgeon (in a conversation, not patient kind of way). He told me that until very recently (five to six years ago) while he fully supported directed and deceased donation, he was against non-directed living donation. He said at the time, despite being generally very liberal in thinking, he couldn't understand why someone would do that for a stranger. He said that he assumed there must be ulterior motives or worse, some kind of potential mental health issue that would make people want to donate to a stranger. Then, he had the opportunity to meet some potential non-directed donors. He listened to their whys, they concerns and their beliefs. And he changed his mind on non-directed donors.

What's my point? 

The majority of people don't even know living donation is an option or the fact that as long as you are deemed healthy, it is a fairly low risk procedure. Many people don't understand why someone would step up and give to a stranger or someone they barely know. Sadly, there are people who have close family members who have been on dialysis for years and they won't step forward to be tested for, because they don't know enough about how the process works and are afraid. And as my conversation with the doctor demonstrates, even health care professionals who understand the science/medicine behind transplants, don't fully understand the people side of living donation.

We need to talk about it. Talk about our whys and hows and highs and lows as donors or as people who know donors (I'm good with you sharing my story). Bottom line: living kidney donations save lives. Living kidney donations traditionally last longer than kidneys deceased donors. Oh and for the record? Dialysis is not a cure, making a kidney transplant a "nice to have". People on dialysis have a tough go of it on a daily basis and are some of the bravest, most resilient people as a result. I don't know how they do it.

SO many people need to hear the living donation message over and over at every level until they "get it", from friends, to family to co-workers to health care professionals. We often fear what we don't know or don't understand and it is our job, as donors (or our supporters), to help take some of that fear away by telling our stories. We shouldn't be afraid to talk about it, share our experiences and hopefully encourage others to become donors. Donating is a very personal choice to make. But that doesn't mean we can't talk about it.

For Dad

"Honey....Guess what? It's Valentine's Day. You made it. Remember how we said it would be nice if we were still together on Valentine's Day? Well here we are. And you know what? It's okay if you want to go now."

Those are the words my Mom spoke to my Dad around 6 AM, 16 years ago today.

Six months we'd been bargaining with him, the cancer, his body and who knows what else. I am sure he was doing his fair share of bargaining as well. After being diagnosed a second time with oesophageal cancer in July of 1995, setting longevity related goals became common. We hoped and asked that he stick around 'till Thanksgiving, then it was my birthday followed by his birthday and so on. Christmas of course became the next big day we all were trying, hoping and maybe even praying he'd make it to. We were determined - trying to squeeze every last drop of time out of the situation we could. The first few goals he met with relative ease, in the realm of things. Just after Christmas though, he took a turn for the worse that he never really rallied back from. I think that was around the time my Mom set the Valentine's goal.

I think I've said it before but time is such a funny thing. It seems like we are always wanting to speed it up or slow it down. Rarely do we focus on just being in the moment, in the present.

There were times in the six or so week after Christmas that year I seemed stuck in a whirlwind of wanting things to slow down and at the same time wanting things to hurry along. Of course, I wanted my Dad around for as long as we could have him but as he got worse I'd sometimes wish that time would slip away a little faster. I'd hear him coughing at night and I'll admit sometimes I just wanted it to be over already. When you think you know how the story is going to end, sometimes to just can't wait to get to that last chapter or page. I still feel a bit guilty about not being more in the present during that time but I suppose I did the best I could.

That Valentine's Day with Dad was very different. After my Mom spoke to him that morning, he was unusually alert. He had been sleeping or groggy for weeks straight and suddenly not only was he awake, but he was his old self (albeit a slightly weaker version). Mid morning I went into our family room which had become a makeshift hospital room for him. I was so used to him sleeping all the time I walked passed him, turned on the TV and starting watching the morning movie on CityTV (Breakfast at Tiffany's). I settled in to watch the classic film when suddenly a strong voice I hadn't heard in ages asked me what I was watching.

When we were kids, it didn't matter what we were watching or how long we'd been watching it. When my Dad came home, we had to hand over the remote control and inevitably we'd start watching whatever he wanted to watch (MASH, WKRP or worse-Golf). He was the alpha dog when it came to the TV. So on that Valentine's Day, when he asked me what I was watching, in a voice so much like the father I remembered, I instinctively got up to hand him the remote. He waved me back. "No no. We can watch this. Breakfast at Tiffany's right?". And watch it we did.

My Dad's alert behaviour lasted much of the day with the exception of a few catnaps he took. He ate lunch, he chatted actively with my Mom, my brother and the nurse who came to check on him. He even signed Valentine's cards for my brother and I. He was so "with it". It was wonderfully confusing.

Late in the afternoon we needed a few medical supplies so my Mom sent me off to the specialty pharmacy to pick up the order. On my return, around 6pm, I pulled in the driveway with Mariah Carey and Boyz II Men belting out "One Sweet Day". I don't know if it was the song or what - but I just knew...before I even walked into the house.

Inside, my Mom was fretting over my Dad and chaos was in the air. He was struggling in some way to breathe? Swallow? Sit up? I wasn't sure. She was running around trying to help, and my brother was there looking stressed and not sure what to do. My Dad saw me walk up behind my Mom, stopped struggling and said very clearly and calmly: "Wait". He put hand up, as if to say "stop" to my Mom, who was poised to resume her fretting. He sat back. And then, a minute or so later, he was gone.

Valentine's Day is a day of reflection for me. While I of course think of my Dad throughout the year, today it always gets to me just a little bit more, even after all this time. As many of you know, my Dad's battle with cancer was one of the main catalysts that would eventually lead to my being a living donor. I can't help but wonder what he'd think about this past year and the direction my life has taken. I know if he was still around my life would be very different and probably a very different Lauren would exist. While losing him when I did was so terrible, it allowed my life to go in such a different direction than it would have. I'm not a total subscriber to the "everything happens for a reason" philosophy but in this case I think there is something to it.

Yesterday this article was published about how organ donation in Canada is plateauing while the need continues to grow. With over 3500 people waiting, in 2010, 229 people died waiting for organs. It reminded me again how important time is for people suffering a life threatening illness and in the case of those waiting for a transplant, time can make the difference between life and death.

Grade 8 grad dance,working
my side ponytail and blue glasses

In memory of my Dad, and in honour of all of our family and friends out there on Valentine's Day who might someday be hoping for more time themselves, make an appointment to give blood (book online with Canadian Blood Services!), sign your donor card, (in Ontario register at beadonor.ca) or consider living donation. At the very least give them all a hug (in real life or virtually) and let them know you love them.

Way better than chocolate and flowers if you ask me :).

What a Year

What a difference a year makes.

This time last year, I had recently completed the first series of tests to see about becoming a kidney donor. In fact, just a week before Christmas I had had my four hour renal scan process, the first "big" test to see how good my kidneys were.

I also still didn't really understand what I was doing. I know that might sound a bit odd but in hindsight, I really can see that I had no idea of the enormity of what I was trying to do. I also had no idea what impact it would have on my donor. On Christmas Eve last year, I wrote this post "Christmas and Family". I talked about my Dad when he was sick and my hopes that I could maybe give someone out there more time with their families. In response to the post I received a wonderful comment from Nancy Smith,-three of her six children have struggled with kidney disease and received transplants:

Hi Lauren! I just came across your blog and wanted to write to encourage you in your desire to donate a kidney. Three of my 6 children have a rare pediatric kidney disease. We have been on what we call our kidney adventure for about 4 years now.

All three of my children have had transplants because other people like you decided to share a kidney. I cannot write this without crying. We are soooo grateful for those precious gifts. These donors have truly given the gift of life to my children.

My 17-year old son, Samuel, who is incompatible with 99.9% of the population, just had a miraculous 2nd transplant on November 12th. It was made possible by an altruistic non-directed donor (like you!) who started a chain of 32 surgeries - 16 donors and 16 recipients. A match for Samuel was found among this group and we traveled from Vermont to Texas to participate in the historic event. Samuel was so sick before the transplant and now, exactly 6 weeks later, is doing fantastic!

This Christmas we will all be together. No hospital, no dialysis! It is wonderful!

So if you ever doubt that what you are hoping to do will actually make a difference in someone's life, think about my children. You may be that kidney miracle for someone else!

God bless you, Lauren!

Nancy Smith

Her comment was a real turning point for me for several reasons.

Firstly, she was my first "stranger" to comment on my blog, all the way from Maine. Not only did she find my blog and read it, she took the time to share her story. It really made me understand the reach I could have in terms of educating people about living donation if I just kept talking about what I wanted to do. Secondly, by sharing her story and sharing her own family's blog, I began to have a hint of understanding of what impact I might have on my recipient, should I be allowed to donate. Her story was also something I could share with my friends and family so that they in turn could understand how kidney disease affects not just the patients but their families. In a way for many of my friends and family, Nancy and her children were the first "real people" we could put a face/name to that had kidney disease. Many more people like Nancy and her family would enter my life over the next year but she was the first and I'm really grateful for the impact she had on me-it certainly kept me going as I stumbled through the donation process.

Here we are a year later. I'm hopeful my recipient is doing well and that he or she is enjoying a different, much healthier Christmas with their family then perhaps last year's. So much of this past year is now a blur for me. While I'm healthy and physically feel the same with just the one kidney, there are so many things that have changed for me emotionally and intellectually. I'm a different person. I think I'm a better person. I am certainly more balanced and my priorities have really changed. I feel very lucky that I was healthy enough to be a donor and have this opportunity. I am glad I've been able to share it with others. I've met (virtually and in real life) some pretty inspiring people along the way from doctors to donors to recipients and their families. I've met people who are STILL waiting for a kidney who are the strongest, most resilient people you could ever imagine.

To all of these people, and to my wonderful friends and family-Merry Christmas-and thank you for everything.