Kidney Day

Perhaps Jessi and I will celebrate one
of these days in person

Today was a pretty Kidneyriffic day.

My kidney friend, who I haven't met but have talked a ton with online, donated her kidney to a stranger. I think I've referred to her as Jessi in this blog so we'll call her that until when/if we opt to use her real name. The important thing though is that she is doing well after surgery and everything went as expected. I can't believe how nervous I was for her.

Yesterday I woke up with a million butterflies in my stomach. At first I couldn't figure out what I was anxious about. Work? No. I mean lately its been  a circus-like environment but that wasnt it. The child? Charlie? No. I ran through the usual list of things to worry about. Everything was fine. Then I realized...I was worried/nervous/excited for Jessi. And I think a part of me was reliving the day before my surgery through her. All the thoughts, feelings, ideas and questions ran through my head...for the second time this year.

Today was no better. I was excited all over again. I was thinking about her and her recipient and how surreal things must be for them as they get suited up at the hospital and get ready for surgery. I wondered if Jessi was calm and collected or if her mind was going a mile a minute like mine had been the morning of my surgery. I wondered about her parents and boyfriend and how they felt leaving her at the hospital. I'd catch myself throughout the morning thinking about what was happening, if the surgery had started and how everyone was doing. Part of me thinks it might be a little weird pondering the fate of a stranger but at the same time I feel like I've been a part of so much of her journey thus far that this was just a natural next step. I am so glad that she made it through a-okay and that Canada has another non directed donor out there.

The next kidney moment happened today when I was poking around on Twitter (looking to see if there was a Jessi update). I noticed Alberta Health had posted a link to a story about a "transplant first" for Alberta. I opened up the link and there was Dr S and another lady from Foothills smiling in a picture talking about a chain of transplants they did back in June, kicked off by yours truly (aka as the "anonymous donor" in the story). The article is great, albeit a bit after the fact and I know Dr S. is probably thrilled it was done. I think the spirit of the article is in the right place. I do take issue with how they kept mentioning the "anonymous" factor. Non-directed living donation CAN be anonymous but I'm not convinced it has to be, especially after the fact. The anonymity label also worries me a bit if it leads to irrational hospital procedures like the lockdown "you do not exist as a patient" policy Foothills put me through. Thankfully despite her non-directed status, Jessi is not going through the same thing where she is donating-they have her in with the other renal patients being cared for my nurse and doctors who are used to treating post donation and transplant patients. And she isn't a secret patient.

I hope the press release gets the living donor program more attention. It seems like the more the word gets out there, the more people step forward to be tested. I do think that the stories featured in and on the news of people waiting for kidneys or people who have opted to donate a kidney help more than hospital written stories. The difference is definitely the people factor. When you see pictures of people involved, you can relate to them. You can put yourself in the position of their families. And you want to help them. Or in the case of donors, you look at what they've done and think "I could do that-they are no different than me".

A couple of other Kidney related things happened as well today but I'll keep those under my hat for now. There are a lot of rules and guidelines and secrets in this world of kidney disease and kidney donation and I don't want to rock the boat for anyone awaiting transplantation or donation.

In the News: Sister's secret vow saves life of Victoria man

What I love about this story from the Vancouver Sun (aside from the happy ending) is the fact that so many positives were born from the original tragedy of this family losing a loved one. There are so many lessons in this story, from the importance of organ donation to the ripple effect it can have. It's not often you read an organ donation story involving both deceased donation and living donation so this one is pretty special. Who knows-maybe indirectly this family will go on to save a 7th life (or more) by influencing people to let their families know their wishes in the even of a tragic accident. Or even perhaps someone who reads this story will be inspired to look at living donation.


****************************************************************************
The last time I saw my 26-year-old nephew Regan Slater, he was lying brain-dead on a hospital bed in Manchester, England, as a transplant team cheerfully bustled around him.
I wasn't supposed to have seen that. Relatives are spared watching how quickly a medical team swoops in to begin harvesting organs. I had only returned to Regan's hospital room because of a forgotten key.
While initially taken aback by the light banter among nurses at my nephew's bedside, I left feeling hopeful. Something good was going to come out of our family's biggest tragedy. Without hesitation, Regan's parents had consented to him being an organ donor. My nephew's death after a biking accident on Aug. 19, 2006, meant five gravely ill people would live.
Three months after Regan died, my sister received a thank-you card from one of the anonymous organ recipients.
"This is one of the most difficult things I have ever had to write," it said. "I will never be able to understand the pain and loss that you must be feeling at this time. I am a father of two young children, a loving husband and son. My kidneys failed suddenly six years ago and I have been on dialysis ever since."
A second letter from a 57-year-old woman who received Regan's liver followed: "I have hesitated writing to you because I did not want to intrude on your grief. I am hoping that what I have to say may be of some comfort. ... Your precious gift has changed my life and given hope and joy to me and my family."
Their stories solidified what everyone in our family believed: that my sister, Denise, and her ex-husband Bert, had been right to give consent for their eldest child, of three, to be an organ donor. All of Regan's donated organs saved lives. But the story didn't end there. Five years after his death, Regan is being credited with helping save a sixth life, this time in his hometown of Victoria.
My other sister, Debbie Pemberton, had read the thank-you letters forwarded by the UK transplant team. Unbeknownst to the rest of the family, she promised herself that if she ever heard of someone who needed a kidney, she would donate one of hers in Regan's memory.
On Sept. 26, Debbie fulfilled that promise. My 53-year-old sister was wheeled into an operating room St.
Paul's Hospital in Vancouver to become a live transplant donor. Her left kidney is now inside a man she initially barely knew but today considers a good friend.
Mark White, a 50-year-old mechanic in Victoria, had been on dialysis for four years. He would sit hooked up to a dialysis machine for four hours at a time to remove the waste and excess water from his blood.
"It was brutal," said Mark. "It keeps you alive but it doesn't give you quality of life."
Mark suffered from polycystic kidney disease, an inherited disorder in which cysts form on the kidneys, causing them to become enlarged. His late father had it.
Last year, Mark's 52-year-old sister, Diane, died from complications while on the kidney-transplant waiting list. Mark's twin brother also has the disease, and Mark's 19year-old son is showing signs that he too has it. Since there is no treatment to stop cysts from growing, the disease gets slowly worse and results in kidney failure.

There are 325 British Columbians on the kidney-transplant waiting list. To get on the list they would have to have lost 90 per cent of their kidney function. If those not yet on dialysis were added, the number of people needing a kidney would swell to approximately 800 , said Dr. David Landsberg, medical director of the renal transplant program for B.C. Transplant.
Last year, about 120 kidney transplants were performed in B.C. - half from deceased donors and half from living donors. In two cases in 2010, individuals anonymously volunteered to donate a kidney to complete strangers.
Since everyone in Mark's immediate family suffers from kidney disease, no one could donate a healthy kidney. His wife, Anita, was willing but she wasn't the right blood type, and health issues also prevented her from being a donor. Mark had been told his wait could be up to eight years, and his time was running out.
As a temporary solution, both of Mark's kidneys were removed last January, tying him closer to the dialysis machine. His treatments went from three times a week to every other day. "I was fearful how much longer he would have," said Anita.
"That's when Mark and I had serious discussions about the future."
Mark and my sister were passing acquaintances when she decided to give him one of her kidneys. They had been briefly introduced years earlier by Anita, a volunteer at Greater Victoria Police Victim Services, where Debbie used to work.
D ebbie researched how to become a live donor and called Anita to find out Mark's blood type. Debbie didn't ask me, our sister, Denise, and our two brothers, so much as tell us of her decision. Everyone was on board. "My family was surprised.
Almost speechless but also supportive," Debbie recalls.
Although they were the same blood type, both Mark and Debbie had further testing to ensure they were a good match. "When Anita first told me, 'Debbie wants to give you a kidney,' I was just dumbfounded," said Mark. "All I could say was, 'Wow.' "
Mark and Debbie got to know each other as the operation date drew near, and she shared the story of Regan, Anita said.
Debbie's operation took place one Monday morning, while Mark and Anita waited nervously, hoping she would be OK.
Both Debbie and Mark were assigned their own medical teams, which were kept separate to avoid any conflicts of interest. The donor team's priority is ensuring the donor is safe, Debbie's donor transplant co-ordinator Cynthia Davies explained.
The rule applies until the moment a kidney is removed. If something came up that would be a detriment to Debbie's health, the operation would stop. Mark's operation would only begin after the donor team gave the OK for the recipient team to start. Luckily, both operations were a success.
Within hours, tests showed Mark wasn't rejecting the kidney.
Interviewed while the two were in hospital late last month, Anita cried when she talked about seeing an ultrasound showing Debbie's kidney functioning well in Mark's body. Mark, who was up and walking around the day after the surgery, said he still finds it surreal knowing he won't have to do dialysis again and is free to resume his old lifestyle.

When I consider this altruistic gift from my sister to someone she barely knew, I can't help but think back to our shared childhood. Debbie and I are just two years apart. We grew up in a family of five children in a southern Ontario community, with parents who immigrated from England. Our parents valued kindness and often talked about how we needed to support one another.
My sister didn't ask me to write this story. Both Debbie and Mark agreed for one reason - to encourage others to sign an organ-donation consent form. B.C. is one of the first provinces to provide an online registry, which takes only two minutes to complete and requires just knowing your CareCard number.
The day of their surgeries I went to the website (transplant.bc.ca) and did something I've been meaning to do for five years - I signed my organ-donor card.
kpemberton@vancouversun.com

Top 10 Tips For Living Kidney Donors

It is a holiday today (for most of Canada anyway) so I thought I'd go simple and do a "Top 10"

1) Be as fit as you can pre-surgery. This sounds like a no brainer but there are a lot of people in okay shape who don't really exercise or do a variety of exercising. I found yoga really helpful before to increase flexibility-I know it was a big influence on how quickly my range of motion returned.

2) Pets. If you have dogs, arrange for someone to walk them while you are in the hospital and for the first couple of weeks you are home because your partner/immediate family will be wanting to spend time with you and not worry about Rover. If you are a cat person and live alone (I am not assuming all cat people live alone-ha) put their food supply at waist level before you go to the hospital so that when you get out and are back home you can more easily feed them

3) Prior to surgery, buy some "comfort foods" that you know you crave when you aren't feeling great. That way you will have them there when you get home. Whether it is ice cream or cheese and crackers, have it on hand. You may not end up eating it but I found my appetite was kind of off the first few weeks and if I wanted something, I really wanted it. Be careful to eat things in small doses though as your digestive system will be a bit off and you may be sensitive to things like salt. Don't worry - it gets better.

4) Buy spare slippers for the hospital as you will probably want to throw them out after. Hospital floors can be kind of gross in ways you will never see.

5) Buy PJs and/or track pants that are 1-2 sizes bigger than you normally wear. Your stomach will be bloated after and even once that starts to go down, the looser the pants the better around the incision area.

6) If you are a "plugged in" kind of person, bring your smart phone and of course a charger. Most hospitals allow them now (even if their materials say otherwise), as long as you aren't using them in an area where it isn't permitted. If you do want to take a phone call or play a game or something with sound, be mindful of who can hear and turn the volume down. If I hadn't been able to use mine to stay in touch with friends and family, I would have felt a lot worse I think.

7) Ask questions. Ask your doctors and nurse questions but also ask the internet. Read about other donor programs. Find other donors via sites like Living Donors Online  Every hospital does things differently and every patient heals differently. If you see something was done differently elsewhere or the recommended you do somethign different in your recovery feel free to ask why. A lot of programs, especially in Canada are new, so they may be open to doing something differently. At the very least in reading about other experiences, you'll have a wider knowledge of all the what ifs and ways things can go. And you will be more prepared.

8) Keep a journal. Or a blog...something. You will wish you could remember all the little details and trust me-some you won't without writing down some notes. You'll be amazed to look back and see what you were thinking, what you went through and how you got through the good and bad times

9) Learn to ask for help. More importantly learn to ask for help and not feel guilty about it. Every donor I have met, online or otherwise, has being a feisty, strong willed, determined, independent type. These people often are the worst at relying on other people (i might know a thing or two about that). The more you get over not wanting to inconvenience people, the better off you'll be. Easier said than done. But try.

10) Listen to your body. Know it well before surgery so you will understand it better after. After surgery pay close attention to every pain, gurgle and twang and what helps with your comfort. Rest when you need to. Eat when you are hungry. And if you don't know what it is trying to say and you are feeling off-drink two glasses of water and go for a little walk inside or out as that seems to settle everything down.

The Beginning

We all make choices. That's what life is all about; every day we make choices. Some, well most, are relatively simple. Starbucks or Tim Horton's? Elevator or stairs? Which earrings go with this sweater?
Every once in awhile we are presented with choices that seem bigger than ourselves. They take a lot of time to figure out and even when we do, we may not always be able to explain why we made them.
When I was little I used to sit and read the Toronto Star from cover to cover on Saturdays whenever I could. I'd read the columns, the sports, the current events and the editorial page. Its likely a large reason why I know so many random things now as an adult. Anyway I remember one Saturday when I was around 10, I read the story of a little boy from Hamilton Ontario. The details now are fuzzy but he had been riding in the backseat of his parents car. When they turned a corner somehow the door opened and because he did not have a seatbelt on, he fell out and sustained serious head injuries. Unfortunately he could not be saved and he was declared brain dead. His parents, in the midst of what I can only imagine was horrific guilt and despair, made a choice. They opted to donate his organs. In doing so they helped save several other children and adults.
I don't know why his story stuck with me so many years. Maybe it was because I was a child myself. Maybe it was the science that intrigued me. Whatever it was, I have thought of that boy off and on whenever I hear of someone in need of a transplant. There was something about his story that made me want to help people the way his parents had. I made everyone I knew aware that if ever in the same position, I would want to give my organs.

Fast forward 25 years. Science has moved ahead. We can now donate some organs without having to be brain dead. Living Donors are becoming common for liver and kidney transplants. What is even more amazing is that not only are people starting to give to help loved ones in need, but some people are making the choice to give to total strangers. Just because they can.

And this is where I am. I have been seriously considering donating a kidney to a total stranger. It's one of those big life choices, bigger than me. I haven't told anyone yet. I started to once but stopped at the first sign of the "Are you nuts!?!?!" face that I inevitably will see more of, if I move ahead with this choice. All I know is that I feel like I am at the start of a journey to somewhere and whatever choice I end up making, I'll be the better for even having considered the options.