February 13th, 2012 is a significant date. It’s the date that I entered into the Living Donor Paired Exchange (LDPE) as a prospective donor with my A blood type kidney along with my sister who needs an O blood type kidney. What’s remarkable is that my husband Steve has also entered the program. Steve has O blood type and was the first person to step forward to be tested last January. After many, many tests and a few months, we found out last July that Steve’s blood was not compatible with Jacquie’s. So although he’s physically eligible to donate (ie. a clean bill of health) he cannot donate directly to Jacquie. I am in the same situation in that I’m physically eligible to donate but my A blood type precludes me from donating directly. Some of you may have read about transplants from A to O blood types that have occurred but that has been ruled out as an option by Jacquie’s nephrology team.
Jacquie is considered “moderately sensitized” which means she has a higher number of anti-bodies in her system which makes it more difficult to find a match – she has many anti-bodies that would attack the new kidney. She has more anti-bodies than most because they are created due to a previous transplant, a blood transfusion as well as having had 3 kids (pregnancy creates anti-bodies).
To date, we have had 3 amazing people go through the full testing to become a donor. Steve was the first. Then there was Jay Walker, who wrote a touching letter following his experience which I shared in a previous post. Jay was actually a match for the blood but had something anatomically that precluded him from being a donor. There are so many factors and variables that affect eligibility and compatibility.
Most recently, we had a good friend of Jacquie’s (and her husband Joe) who stepped forward in late Fall. This person was very matter of fact and practical about his desire to help. Even though he has a very busy life as an investement banker in NYC, he still made the time to go through all the testing. Sadly, in January we found out that his blood was not compatible with Jacquie (even though he too is O blood type).
So this week is actually quite significant. Yesterday we entered the LDPE program whereby our kidney details are put into a database of donor/recipient pairs from all across Canada in the hopes of finding another donor/recipient pair that matches one of us and my sister. This is how it works. A complex matching algorithm is run approximately once every three months which compares the medical information on all the pairs and non-directed donors in the Registry and identifies kidney transplant opportunities. There could be 2 donor/recipient pairs who exchange or it could be part of a larger chain whereby numerous pairs exchange kidneys in a domino effect. The fact that this program exists at all is a great gift. To date, there have been over 104 transplants completed as a result of this program. Here are the results to date.
The “match” is run four times a year and the latest one started yesterday. We will find out on Tuesday, February 22 whether either Steve or I will be able to donate one of our kidneys in exchange for a kidney for my sister.
I’ll keep you posted next week to let you know if me or Steve are a match. Fingers crossed. This is definitely the lottery we want to win.
A little over 2 weeks ago I sent a Letter to the Editor to the Ottawa Citizen that was published online and in the paper on Saturday, January 7th. The letter focused on the Gift of Life series that Bruce Deachman had written starting on December 24th. I wrote about my thoughts on this series in my last post, Gift of life series in Ottawa Citizen. I was so struck by the series that it compelled me to write a Letter to the Editor – the first time I’ve ever written a letter to the Editor – and was pleased to have the letter profiled as well as a photo and a short video. I’m so glad that the photo was included as a number of people said my photo is what caught their eye and encouraged them to read the article.
In the days that followed I had a number of people contact me or tell me that they read the story. One incredible young women from Ottawa contacted me and Jacquie and offered to be tested as a donor. She has O blood type and read extensively the informatin on this website. I am in awe that a complete stranger would be compelled to make such a selfless and heroic offer. This journey we are on to finding a kidney for my sister is remarkable. It’s proving without a doubt to restore all faith in humanity.
More to come on the status of prospective donors.
Gift of Life series in the Ottawa Citizen
I wanted to share this beautifully written series, The Gift of Life, that ran in the Ottawa Citizen starting on December 24th, 2011. I was so touched by the stories that were presented each day and eagerly awaited reading the next story. Bruce Deachman, who wrote the series, really did an amazing job of capturing and presenting such compelling stories. I teared up every time I read one of the artcles.
There are so many great things about the articles but what really captured my attention in the first article about John Timmermann is the angle to the organ donation story that I’m sure few have ever considered – the fact that organ donation can create a legacy out of a great loss. I really appreciated hearing Maureen Rae’s story of how her involvement in donating her husband’s organs actually helped her and her children heal. It was very brave of Maureen and her children to be so open and he captured their story beautifully.
The stories featured included kidney, liver, heart, cornea and lung recipients as well as others who have been touched by or are involved in organ donation. It’s a compelling series that I really encourage you to read.
Why I Said Yes: A heartfelt letter from a prospective kidney donor
When we found out in January that we needed to find a hero – a living donor to donate their kidney to Jacquie – we really had no idea where this journey would take us and who would be our hero. Very soon after we started spreading the news a very dear friend of Jacquie’s sister-in-law Anna stepped forward and said he wanted to be tested. Jason Walker, who lives in Victoria, BC, went through the 3 phases of testing and came so close to being a donor for Jacquie. Incredibly, Jason is the perfect match from a blood and antibodies perspective (and with Jacquie there is a less than 5% chance of matching) but unfortunately Jason’s anatomy is complicated; so much so that it would not be safe to perform the nephrectomy surgery and therefore he was not able to donate his kidney. Jason is an incredibly generous, caring person who has profoundly impacted our family’s life. He has agreed to share his story and experience in the hopes that it will prompt others to consider becoming a living donor. Please read and share Jason’s story.
November 2011
Dear Jacquie,
When you asked me to write a story about my experience in the living donor program I admit I struggled. After a great deal of thought I decided that a letter to you would be the best way to convey my true emotions of a very powerful experience. I hope whomever reads this letter will be able to see what a unique experience and gift that the living donor program creates.
It was in April when Anna mentioned to me that you were in need of a new Kidney. We talked about it briefly and Anna explained to me that this will be your second kidney and that you are 0-neg and need on 0-neg donor with specific anti-bodies. Rather spontaneously I said to that that I was 0-neg and that I would like to see if I might be able to help you.
I know we had met at least twice over the past 15-years of my friendship with Anna. To be quite honest I couldn’t place your face. Some people close to me were a bit shocked that I would want to donate to someone I didn’t know, basically a stranger. To me, it was a no brainer, you had a need and I had a possible solution.
As we began emailing each other and getting to know each other, I think we were both hesitant early on keeping expectations low in case things didn’t work out. That being said, we grew closer as the months went by and I continued to move through the screening process.
The ‘process’ began with blood tests to confirm that I was 0-negative and then there were several rounds of blood tests and glucose fasting tests. My heart was checked with an ECG, X-Rays were taken, an ultrasound was completed and my GP became involved by completing a physical exam and monitoring my progress.
Things came together rather quickly, I found myself in Vancouver at St. Paul’s meeting the living donor team. I met with the nephrologist, social worker, nurse and surgeon. Several more in-depth tests were done at St. Paul’s including typing and cross matching.
My reading of the chance of being a complete match with you, as I was not related to you, was less than 5%. I truly felt special and connected to you in that we were moving forward and I had agreed to surgery.
In my mind and heart I was committed to having the surgery and giving you a gift that I hope would help you and your family by ensuring your new kidney from me would last you a very long time. It felt good.
My family and friends were cautious at first and questioned my commitment to this by suggesting that a major surgery for a relative stranger was filled with risk. I didn’t see it that way. I learned going through the process that it is for the most part safe, the success rates high and complications for the donor and recipient low.
I’m an organ donor, it says so on my driver’s license I suppose this is meaningful if I die my wishes are clear. I believe in it. The living donor experience took me to a new level, of both my commitment to my beliefs and perhaps some ‘narcissistic altruism’ in the sense that I felt I was gaining more than you. I say this because all of this is about giving, the reward to me was potentially huge in the sense that my kidney could save your life.
I remember the phone call I received from the program nurse. I was driving and had to pull over as the tone in her voice gave away the message. I knew the team had met the day before to make the final ‘call’ on whether or not they would move forward with the surgery.
It took my breath away when she told me the surgeons found that my anatomy was too complicated and it would be a risk to both of us to proceed. I admit I was tearful. I wanted so badly for a different outcome.
I was too upset to call you, I was selfish in not wanting to be the person to tell you it wasn’t a go. I asked Anna to let you know before the nurse did. In the end it was Joe who called me to ask what was going on after I sent an email saying how sorry I was. I told him they weren’t moving forward. It was crushing.
The chance to help you was felt incredibly amazing. It felt so good inside knowing that I might be able to change your life and mine.
I would do it again without a second thought. I wish so very much that their decision was different and that as we speak my kidney would be inside you.
What I learned from this experience is that your kind and caring nature, your commitment to your family and your determination to get better runs deep in you.
I hope that by way of this letter, I can encourage another person to step up and do the right thing. Put up your hand and do it. It’s not just the right thing to do, it’s selfless and heroic to be a match and to give.
Jacquie I feel we will be connected for life. This is a mutual gift and I will fight hard to support you in your search for a match.
Sincerely,
Jason
Altruistic kidney donor and the power of social media
I think it’s absolutely amazing what Erin did. It’s such a generous and selfless act that is so incredibly community-minded. Erin mentions in the article the notion of “paying it forward” and there can be no more truly insprining way to pay it forward than by saving not just one but multiple lives. And I say “multiple” because in the LDPE program an altruistic donor generally triggers multiple transplants. So Erin’s gift of life saved not only her recipient but also two others because her donation triggered a chain of two more transplants. In fact, altrustic donors have sparked nearly 70% of the 100 successful transplants in Canada’s LDPE program to date. Read the “National Organ Donation Regsitry Celebrates 100th Successful Transplant”
Something else that is remarkable to me is that on the day that Erin had her transplant I actually knew she was undergoing surgery that day – and I was sending her positive thoughts. I didn’t actually know it was “Erin” who was donating but I knew there was a women from Edmonton who was in Vancouver proceeding with this heroic act. I knew this because of social media and becaause of the incredible connections I have made through this journey to find a kidney for Jacquie. I have mentioned before that I met Lauren Herschel online in August. Incredibly, Lauren donated her kidney altruistically in Calgary last July. I reached out to her in August to let her know how amazing I think she is and we’ve been in touch since then. Lauren and I were emailing the day Erin donated and we were both sending positive thoughts and hoping that everything went well. See Lauren’s post on the day of Erin’s surgery. Lauren has been a mentor to Erin through this process and they too met each other online through their own kidney journey’s.
I am so struck by the power of communications and social media. I really shouldn’t be because I have always worked in Marketing and Communications though primarily in the corporate world. I haven’t yet been so struck so personally by the real power of communications until this kidney journey. I know there are so many things that go so wrong with social media and that it can be a total brain sucking waste of time BUT when used constsructivel for a positive cause there is nothing more powerful. I am witnessing this first hand along this journey. I met Lauren becuase I was reaching out online to share Jacquie’s story, the reporter, Kim Permberton, who featured Jacquie’s story in the Vancovuer Sun (who herself is living through an incredible kidney/organ donation journey in her own family), found Lauren online through her blog when she was researching another story, Lauren had shared Jacquie’s story and Kim found the FB page I create and ultimately this website on Lauren’s blog, Kim contacted us, wrote a story and since then we have had numerous people contact us to ask how they can help. More on that story later.
So the bottom line is that communications and social media, when used constructively are an incredibly powerful force. Please continue to share Jacquie’s story through these blog posts, tweets and FB posts. I know we will continue to be amazed at where this journey takes us.
2 days of donor testing for Kerry
Well the last two days have definitely been kidney-focused for me and our family. Quite a lot has happened.
For me, I underwent a series of tests to find out if I am eligible to donate one of my kidney’s to Jacquie. I may have mentioned previously that I am A blood type and Jacquie is O blood type so there is no way I can donate directly to my sister. It’s too bad we weren’t reveresed – me being O and Jacquie being A – because then at least I could be considered as a direct donor. So I am undergoing the testing to determine if I’m eligible to enter the Living Donor Paired Exchange (LDPE)program whereby I would offer up my A kidney in the hopes we can find a family looking for a A who has a donor with an O available that matches Jacquie.
There are 3 types of “matches” that must occur between a donor and recipient:
1) blood type – O is the universal donor so can donate to any blood type as long as the others criteria match but conversely O can only accept from O
2) tissue typing - to determine the compatibility of tissue between donor and recipient
3) cross match - where Jacquie’s blood is mixed with a prospective donors blood to determine the presence of antigens which trigger the production of certain antibodies. Basically, the blood is mixed to see the reaction of Jacquie’s antibodies to determine if her body will reject the donor’s kidney. There are a number of factors that influence the level of antibodies present and because Jacquie has had a previous transplant, 3 children and a blood transfusion she has a high level of anitbodies. She is considered “moderately sensitized” which means it is more difficult to find a match.
On Monday, I was at the General Hospital and underwent the following tests and assessments:
1) Blood tests – a series of blood tests, beyond the first set I had done through my family doctor, that included tissue typing
2) Psychiatric evaluation – I spent 4o minutes speaking with a psychatrist so he could assess my mental state with relation to being a pr0spective donor. I received a passing grade so that’s a good thing 
3) Chest x-ray – all clear
4) ECG – to ensure my heart is healthy and functioning properly – and it is.
5) Renal Scan - a radioisotope was injected into my vein then I lay on a table for 30 minutes while a scanner took multiple images of my kidneys, ureters and bladder. The scan measures the size, shape and funcion of my kidneys. My kidneys are symmeterical and contribute 50% each to my total 100% kidney function. They are functioning perfectly.
On Tuesday, I was back at the General Hospital for the following appointments:
1) Abdonimal CT scan – to ensure my anatomy is ideal for donating a kidney. This is the only test that I actually felt a unique sensation. Idodine was injected into my vein and then the scanner takes multiple images as the iodine moves through my kidneys. The iodine is warmed – higher than body temperature – as it’s the consistency of corn syrup so in order to have it move through the blood system it has to be warmed. It was a strange sensation to fell a flush of warmth go so quickly through my body. It only lasted a few minutes but was something I’ll definitely remember. It wasn’t painful at all just strange.
2) Social worker evaluation – I spent about 30 minutes with a social worker talking a lot about logistics that would be involved in donating and to ensure I’d have support during surgery and recorvery (up to 6 weeks), to ensure I can financially afford to be off work for that long, can afford to travel to where the recipient is (it’s standard for the donor to travel so in the LDPE program you could be anywhere from Vancouver to Halifax).
3) Transplant surgeon – the surgeon looked at my renal scan, CT scan and examined me to determine from a surgical perspective if I am elgible. Some people have 3 viens/arteries going to their kidneys and in that case they cannot donate. I have 1 artery and 1 vein to each kidney so I’m ideal. The surgeon said I am an ideal candiate.
So with all this testing it looks I am eligible to donate. There is one last appointment next Monday with the Transplant Nephologist and this person will look at ALL the tests and consultations to make the final call on whether I can donate. Based on all my tests and discussion to date I definitely think I’ll be eligible. The next match for the LDPE is in January so we’ll see if we’ll be ready to enter into that match.
I have to say that every medical person I have met through all this testing has been warm, friendly, efficient and professional. In particular, the Donor Coordinator in Ottawa, Mary Rada, and the transplant surgeon (can’t remember his name) have been so helpful. I have never felt rushed in any appointment and never felt uncomfortable asking any questions. It’s an amazing team of professionals who all work together to make this program possible. We are fortunate to live in Canada and have this option available.
I will share more information in the next couple of posts that will update you on other prospective donors who are undergoing testing.
Jacquie’s story featured in the Vancouver Sun today
Langley mother seeks second kidney donation written by Kim Pemberton, Vancouver Sun
On Tuesday afternoon, I received a call from Kim Pemberton of the Vancouver Sun. Kim wrote a touching article last Saturday Giving the gift of life in the Sun and I featured it in my last blog post.
I hope you have read the article Kim wrote about the experience her family has been through. Her sister recently donated her kidney to someone she barely knew and 5 years ago her other sister lost her 26 son. His organs were donated and helped save 4 lives and gave sight to 2 others. Kim is obviously very connected to organ donation.
The way Kim contacted me demonstrates the power of Social Media and the value in reaching out to others in your community. Kim found the blog of another person I have connected with online, Lauren Herschel. I have written a blog post in the past that includes a link to Lauren’s blog. She’s a remarkable women in Calgary who donated her kidney altruistically this past July. Kim has been following Lauren’s blog and Lauren has blogged about Jacquie’s story. While reading Lauren’s blog, Kim came across the Facebook page I created about a month ago to share Jacquie’s story.
Please read the article about Jacquie’s story and share it. You just never know who will read it and who is connected to who.
Special thanks to Kim Pemberton for reaching out to us and sharing Jacquie’s story.
