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.

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.

Rolling Up My Sleeves

Today I rolled up my sleeve for the first time since last September (I can't beleive it was that long ago!) and let Canadian Blood Services (CBS) have some of my O+ blood. As the blood donation coordinator for my workplace, it was nice to finally be boarding the Lifebus instead of just trying to rally the troops.

The whole eight or so months I was being tested prior to my kidney donation I was frequently called by CBS when they were short on donors. Most of the time I missed the calls but was amazed at how frequently they called me. Finally back near the end of June they called and actually got me and I let the lady know I was not able to donate until August. She asked if it was a tattoo/piercing thing (um no) and when I explained about the kidney thing I heard her shuffle papers, looking for the response to that in their script aids. She ended up putting me through to a nurse so I could get a note on my file and limit the calls for another month until I could donate. (For the record I was given the all clear anytime after July 7th by the living donor program but I personally wasn't ready yet as I was still tired and not 100%). Once the nurse was on the phone she too didn't really know how to handle a kidney donor but once I assured her August was fine she noted it on my file.

However I discover this morning she put the hold on for longer so I had attempt to override that this morning with the nurse at CBS. I had checked off the box about being under a doctor's care in the last 6 months, explained verbally what that was for. She got out this giant binder to I assume see what the rules were around donating after that kind of procedure. I was shocked (OK not really) that kidney donation was not in the book. She apologized and had to go ask someone-totally understandable. She came back and said I should be good to go based on my information about the program being okay with it. She did warn me that the next 2 times I give blood (assuming I come in 56 days apart) they might be equally confused about how to deal with my surgical history.

 I was taken to a bed and they started to set me up for the donation. The nurse told me she had to check one thing with one other person before they could start. I could see her reviewing my file with a lady in the back and after a few minutes she came and gave the go ahead to the "blood takers" (sorry-I have no idea what these people are called). 

A coworker was beside me and he announced to the "blood takers" around us that they all better be nice to me because I just donated a kidney. They all looked at me (blinking...hmmm...where has that happened before?!?) but other than one asking if I donated to family, there weren't many questions. It was kind of nice. There were lots of comments about how nice I was to do that and how they all knew someone who was waiting for a kidney or who had received one and how important it is. Thankfully at least the concept of non-directed donation wasn't foreign to them so I didn't have to get into that. One lady had lots of questions about what the surgery was like, my recovery and how that went-not a question I usually get. They have a TV showing blood recipient stories with pictures-she had met some of the people in the slide loop and told me about the,. She asked me if I would ever get to meet the recipient and seemed disappointed when I said no. I reassured her that "you never know"-it seemed to make us both feel better.

The donation itself was fine. I've never felt woozy or weak after a donation although this time I was more tired right away than I usually am. I did feel a bit light headed but not to the point I was in danger of fainting. I made sure to drink extra fluids this time around as that seems to prevent any post donation side effects.

There was something about this appointment that really made me feel like life is getting back into some kind of normal pattern and that I myself am become more of a "normal" person again instead of being "organ girl" as Charlie would say.

The Need For a National Living Donation Plan

Why aren't there more living donors?

This has been a question my brain has been kicking around for awhile now. Granted, donating a kidney is not medically possible for everyone but why don't more people try? People give blood everyday, they donate money to charity. They take part in 3 day walk-a-thons and bike rides. People are willing to commit hours everywhere to support organizations in their communities.Yet living donation is rarely considered, especially the notion of donating to a stranger. Which is too bad because currently over 3,000 people in Canada are on waiting lists for a kidney transplant, according to the Canadian Organ Replacement Register (CORR). With about 35,000 Canadians suffering from kidney disease that number never goes down and has the potential to go even higher. Kidney disease can't be "fixed"; it can just be managed  with diet, medication, exercise (all depending on what the cause /illness is) until the kidneys get to the point of failure-then its dialysis till transplant or, sadly, death.

Is it just that the concept of living donation, especially in Canada, is relatively unknown? I think that is a big part of it. Living donation  has been happening in Canada for at least 40 years, although the option of donating to a stranger has only really become available in the last 5-7 years. Add to that that there isn't a really strong national program or body to promote living donation and, well, little-to-no awareness ensues. Did you see where I said "lists" above, in reference to the number of people waiting? If you need a kidney, you go on the list for your local transplant program. There also isn't a national list (like UNOS in the States) although Canadian Blood Services has been operating a paired donation registry since 2009. That's a bit different though as it does not incorporate all the people waiting for transplant, just incompatible donor-recipient pairs (where you want to donate to a love one but aren't a match but are still wiling to donate to another person so long as your family member/friend get a kidney) from across Canada. The registry compares the medical information on all the pairs in the database and identifies pairs that might be able to exchange donors. When a non-directed donor like me comes forward, they are sometimes added into the registry in order to create a domino chain.

My point is that I think there needs to be some kind of a national play developed out-a national living donation plan. First off, they need to get the logistics and process of these donation programs nailed down and make them the same across the country. Right now its about a dozen or so programs doing their own thing, with different policies, programs and testing processes in place. Some areas have more developed, robust programs in place while other (for example Saskatchewan) are struggling to keep their program open and running. If operationally things aren't consistent, then they will never get to a place where they can promote Living Donation. Secondly they need to promote awareness on a unified, national level. I kind of see where that is becoming an issue with deceased or cadaver donor campaigns and I'd hate to see that happen with living donation promotion as well. This year, Ontario launched the beadonor.ca campaign  to encourage all Ontarians to become registered organ and tissue donors and educate them on the impact of their generous decision to give. While this is a fantastic initiative, how hard would it have been to make this a national program? Even if registrant's information (behind the scenes) were funnelled into different "lists" managed by provincial health agencies based on their address information? It just seems silly not to mention redundant to have each province needing to develop out their own, likely very similar, ways of recruiting donors.

Picture a chain of restaurants, all of course using the same branded name, but each is developing out their own menus, way of operating and marketing strategy. It doesn't take a business degree to know that it isn't cost effective or the most logical way of getting things done and that they'd be far more effective joining together. There can still be slight regional variances but by sharing best practices and creating some standardization, everyone benefits.

I understand that there was a National Task Force on living donation set up a couple of years ago involving, doctors, nurses, program coordinators etc. I am curious to see if a national solution is something they are working towards. If they are, it would also be great to develop a program that allowed for non-medical staff involvement too-donor and recipient support/advocacy roles. Either way, a national strategy is certainly needed. I hope it happens because I think it's the best strategy, that in the end will lead to more people being helped.

And P.S. it's probably cheaper for you, governments!

To Meet Or Not to Meet

I received some news on the weekend that left me a little disappointed. For the last 4-6 weeks, there was a tentative plan in place to arrange a meeting between the people involved in my kidney donation chain and potentially do a press conference. I believe, based on what the doctors thought at the time of my donation as well as a conversation I had with another potential donor in Edmonton, that this was the first "one hospital" chain done in Alberta. To have some media attention to that would have been awesome for the program and to promote awareness of living donation.

But everything was contingent on all involved in the transplants being willing to participate and somebody wasn't. I totally understand peoples desire for privacy-I support their decision 100%. I'll admit the idea of participating in a press conference was a little intimidating but I was looking forward to stepping outside of my comfort zone because of the opportunity it represented to educate people about organ donation. I also think that the doctors, nurses and others involved in the living donor program at Foothills Hospital do wonderful work and any chance to highlight that to our community is wonderful.

I was a little surprised how disappointed I was when I got the news. I was content in not knowing but I guess not as much as I thought. I still have no idea what I'd say to Leftie's new home but it was exciting to think I might be able to connect with them briefly. Of course that's not to say that there won't be an opportunity down the road. As cliche as it sounds, if its supposed to happen, it will happen.

I was recently looking at videos of donor recipient meetings. I really liked how the University of Maryland Medical Center handles these types of situations (see below). They allow for donor/recipients to meet but if someone does not want to participate, they don't and their privacy is protected. I think it would be something worth replicating in Canada as non directed donation and chains become more commonplace. I did offer this as a suggestion to one of the program people at Foothill's as they may not have considered this as an option. It may be another case of "this may not help me but it will help future participants" which I am fine with.

The whole concept of a meeting raises some interesting "what ifs" for people. If you were a donor would you want to meet your recipient? If you or your family member received a non-directed living donor kidney would you want to meet the donor? And what would you say if you did? If you didn't want to meet, what would be your reasons?

Where's Leftie?

A lot of people ask me if I know where he ended up, if I will ever know--if I even want to know.

I was told the night of my surgery that he was doing well. He was so happy in his new home he started working right away. Good job buddy. A few days later they shared that everyone involved was doing very well and recovering as expected. At my post surgical follow up, Tina, the Living Donor coordinator passed on a message from the recipients family: They are thrilled, so appreciative and they wanted me to know how much I have impacted not just Lefties new home, but the entire family. If I never get any other information, this is really all I needed to know/hear.

That  being said, if given the opportunity, would I like to meet the recipient? Absolutely. I don't need a relationship, to exchange Christmas cards or anything like that but I'd like to see them. Get a snapshot of what their lives are like. See the people Leftie is with now. I don't know why exactly but I am curious.

I really do liken it to the whole "adoption" experience. I have to be okay with never meeting them, or not necessarily liking what I find if I do. The added twist in the case of kidney donation is that Leftie isn't mine anymore so they can do whatever they want to him and I have to not care. Which I think is fine. I'd hope they'd treat him right and I'm sure they would-I think 99% of people in their shoes would take advantage of the renewed health and do their best to keep themselves healthy.

I've watched a few You Tube videos of meetings (my favourite part of the linked video is around the 18min mark) at other hospitals (in the States). Some are just meetings, others are press conferences or more formal presentations at medical events. I don't have a picture in my head of where I'd like to meet or how it could go. That's probably a good thing as it may not ever happen. But if it did it would be pretty cool. I have no idea what I'd say to that person or their family and  imagine they feel the same.

I'll probably always stop and think from time to time "Where is Leftie" and wonder how he is, and more importantly his new keeper are doing. I'm sure they may even think of me from time to time and how we came to be connected for life. It's a pretty unusual feeling to have this kind of connection with a complete stranger.

But you never know what will happen...maybe we'll meet., maybe we won't. It's not something I can force or make happen but here's hoping.

Surprise Visitor

Towards the end of my hospital stay I was lucky to have a surprise visitor, despite the fact that she "wasn't on the list" and actually had no idea where in the hospital I was located. I was relaxing in my room and the curtain did its usual flutter that indicated someone was about to enter. It was the nurse who days before had been so irritated at the flowers my brother sent.

"Do you know a  Betty?" she demanded. No hello, just the question. I had to quickly think...the first person that came to mind with that name was our HR manager at work and I knew it wouldn't be her. Then it clicked in my head. "Yes, I know a Betty".  "well she is here to see you. I'll go get her." With a scowl for emphasis she left the room.

Now here is the cool thing about Betty. I don't really know her. We've met, had a great 2 hour conversation but that's it. But we have something in common that I don't with most other people. She is also a non-directed living donor.

Right after I had learned my surgery date I had gone poking around the web looking for more donor stories to bolster my confidence a little as it had suddenly become so much more real with the phone call from the program. I stumbled across a blog (funny...there are other blogs out there...) I hadn't seen before-it was a story from a Canadian living donor who had donated her kidney to a stranger. Her blog was far less identifying than mine but in reading one entry about her meeting with a nephrologist during the test phase, I was shocked at the similarities between her experience and mine. I was sure she must have been involved with some of the same people in the Foothills hospital program at some point. Even if I was wrong, she still had Canadian experience with this which was hard to find and I thought she might be able to answer some of my questions.

I left a comment on her blog asking her to contact me. Within about 12 hours I had an email from her. We quickly determined we were indeed in the same city and she suggested it would be easier if we met for coffee. About a week later we did and like I said, we had a great conversation about her experience and the road I had traveled thus far. She was able to give me insight into some things I had wondered about (like diet immediately after how out of it I'd be the first day etc). It really helped me think of somethings I hadn't considered yet (more housekeeping kind of things) and overall was just reassuring. We had some different views on parts of the process (whether or not we were open to meeting the recipients, how long to take off of work etc) so it was really interesting to hear another opinion to get some perspective. I would highly recommend anyone considering this to find another donor with similar circumstances to talk to. The Kidney Foundation does have a program, although there aren't many people like Betty and I in it yet however I've heard there are a lot of donors who have given to family members. I didn't realize how helpful it would be till after we met-it really was great.

I had told her my surgery date at our meeting and low and behold, she showed up a few days later to see how I was doing. It was very sweet of her and of course unexpected. Of course when she arrived a Foothills, she was pretty surprised to learn I did not exist. What is amazing to me is that she pushed on instead of just giving up and going home. She called the Living Donor program and spoke to the coordinator who she had also dealt with in her donation. She asked her if she knew where I was as she wanted to visit me. After brief explanation, she was given my location. I'm sure she had to do a little arm wrestling with that charge nurse as well. But she made it through (stuffed flower and all).

At first I felt a little awkward but I was really touched by her efforts. I kind of wonder how much better I would have felt having more visitors along the way as a distraction. A few friends had asked to visit but because I wasn't feeling 100% and thought it would also stress the nurses out because of the whole confidentiality ruckus I declined. I realized after this visit I should have encouraged those other friends to come because it really did buoy my spirits. She offered to visit me later in the week if I was still in the hospital which was also wonderful-but we both hoped I'd be out of there before then.

Torn-The Good and Bad of our Healthcare System

This is kind of an unscheduled post. I was having a great conversation with a good "interweebs" friend of mine last night and again this morning about my blog. She said my posts are starting to remind her of her experiences with healthcare. Her bad experiences. And she lives in the United States.

While she wasn't in anyway criticizing what I was saying but it struck a giant chord with me. It's been bothering me the last week or so as I've written many of these posts and in doing so have re-read my journal and iPhone notes about my hospital experiences. It does sound more negative than positive. And I hate being that person, although I do believe I've been objective in communicating what my experiences were. I have not gone out of my way to be negative (I've just been honest) and have tried to highlight the great people and treatment I've had along the way.

It's tough and I've grappled with these feelings from the day I was admitted to the hospital as a kidney donor. I love our Healthcare system. I am thankful for it, grateful and appreciate we are very lucky as a country to be able to sustain such a system. Sure, in places like the US where healthcare isn't "free" there might be pockets of extraordinary healthcare but that is often at the expense of other pockets of their communities that are almost criminally under served. I want to be clear-I believe in our system and how it works. There are always ways to grow and improve any organization and I don't think we should shy away from that.

I did however receive some pretty craptastic care and attitude at the hands of medical professionals who are a part of that system. I don't want to point fingers but it was more often than not the nurses and the administration. I don't know if that was a result of something in our healthcare system that does not allow them to excel in their professions or if its just a case of me having bad luck and getting a few bad apples. I'm also not sure if my somewhat "foreign" presence on the trauma ward was part of the cause of the sometimes bad care I received. If that is the case, that is an easier fix with the development of a stronger, more efficient living donor process which I know the Living Donor program is deeply committed to.

I guess I just didn't want this blog to become a bitchfest about our healthcare system as a whole or make it become about the crappy treatment I received from time to time after donating Leftie. I especially don't want to deter other donors from donating thinking they will have the same treatment. I know in my case, the Living Donor program is very interested in all the ups AND downs I experienced (and asked me to be sure to blog about them) so that they can take steps to fix them for the next guy or gal who wants to donate. And I really do believe that they will do everything in their power to make those changes. They are really great people and their hearts are in this 100%. And to me that counts for a lot.

So please don't use this as a tool to blast our healthcare system and say that its broken o it doesn't work and we need something else. And certainly don't be deterred by some of my bumps in the road if you want to donate in Canada. It still is worth it and you will get the care you need.

That being said if you are from Alberta Health Services and/or Foothills Hospital-you aren't fully off the hook. I want you to do well-I am rooting for you. Take my experiences and see what you can do to make it better for the next person in my place or for the next patient in general. Remind your people why they do what they do. Remember we all end up as patients one day.

Thanks.

What's in a Name?

 This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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January 20, 2011
"Tis but thy name that is my enemy.Thou art thyself, though not a Montague. What's Montague? it is nor hand, nor foot, Nor arm, nor face, nor any other part belonging to a man. O, be some other name! What's in a name? That which we call a rose. By any other name would smell as sweet."
~Romeo and Juliet, William Shakespeare

Well Juliet, there is a lot in a name. And when we don't name things properly, things get tricky. What I would like to figure out  is what the true name or label is for a person in my shoes, wanting to donate their kidney to a stranger.  I think much of the "problem" I have been experiencing stems from the fact that all parties involved (including myself, the program, the Kidney Foundation, other bloggers-recipients and donors and perhaps even Canadian Blood Services) use three different names for donors like me interchangeably. The problem with that is each of the three names or labels actually means something very different.  I think what might be good in the future is if everyone involved in the program picked one and went with it so that the risks and rules could be more clearly laid out.  Don't get me wrong-there is overlap in what they all mean but some have a much greater focus on certain things than others.

The first name used is "anonymous donor".  This one is pretty easy to define.  Basically this kind of donor gives their kidney to a stranger and there are no names or identities attached.  They don't know me and I don't know them.  The various transplantation program endeavor to keep it that way until after the surgeries as to not have anyone "change their minds" based on their perceptions of the other party.  Other than my recent experience with the no blogging rule, I haven't seen any strong evidence or measures taken to protect our identities but that's not to say it doesn't happen.  I have read they avoid smaller transplant centres to be able to keep everyone separate before surgery.  Other than that though I am unclear if there are specific procedures to keep things a secret. This name seems to focus more on the secrecy of identity rather than the donation itself. While I have yet to receive a paper copy of the social media/media policy from the folks at Foothills, the only 'risk" they clearly alluded to was something to do with anonymity (although they still weren't very clear on that).  In theory, I am not to know who is receiving my kidney before I donate, nor is the recipient supposed to know anything about me. I am not going to get into the details as to whether or not I agree that the blog would be a guarantee we'd know who each other is ahead of time (I don't think that is a huge risk). 

Another label used interchangeably with the first is "non-directed donor".  To me, this means I have something I'd like to give, but I have no one in mind to receive it but I am still willing to toss it in the ring (so to speak-there will be no actual kidney throwing as part of this journey).  This label does not imply anonymity at all.  I liken it to making a large cash donation to a charity.  I could opt to set up some kind of special program within that charity with the donation but more likely I am just going to give it to the charity and they will apply it in whatever area makes most sense to them.  I have no say in it.  Nor am I asking to be anonymous-or more to the point, keeping my identity a secret is not a condition of my donation or their ability to receive it. This label seems to have more to do with the lack of assignment to a  specific recipient than anything else.  And this is the one both the Southern Alberta Transplant Program and Canadian Blood Services use in their written information materials if/when they refer to people who aren't donating to someone they know.

The third is "altruistic donor".  An altruistic donor is someone who would like to give the gift of a better life to another human being. This is also known as a Good Samaritan Donor although altruistic seems much more common in Canada.  I think this name or label is meant to focus more on the "gift" aspect of the donation process. It's more about emphasizing the "goodness" in what the donor is doing and the selflessness.  Basically it describes the warm and fuzziness of what the person is doing by choosing to donate and isn't meant to describe the logistics of the donation event itself or describe the lack of relationship in the parties involved. I would argue that it shouldn't imply anonymity. For example, I think donating to your neighbour, brother or cousin is just as "altruistic" by definition as donating to someone you don't know.  Altruism by definition is a selfless concern for the welfare of others. Period.  Doesn't matter if you know them or not.  Actually I think for some people donating to a family member might even be harder because there is a lot more emotional conflict and pressure there. And if the transplant fails, I think that would be FAR harder to get over than for someone like me who doesn't have that emotional investment with the recipient.

I think you get my point.  If we could better identify what we are calling donors like me from a patient label stand point we could more clearly identify the risks and therefore better assign guidelines to rank and mitigate those risks   When you use three very different labels on some one like me it makes it more likely that rules will change a long the way because the risk focus changes along the way. Confusion will inevitably set in and bad feelings will occur.

**In case you were wondering I prefer the non-directed donor label.  It still allows for the option to ask for anonymity but it doesn't imply that it is mandatory.

A Forced Choice

Yesterday I was forced to make a choice.  I was given the option of being eligible to continue in the Living Donor Program OR being able to continue writing my blog.  If I want to donate my kidney and help a stranger, I can't talk about it in a blog, using social media or via traditional media.  This mandate was handed down by my social worker for one of the larger organizations tied to the program. I hope that they will entertain the indiscretion of this (last) post as I wanted to let everyone know why there would not be any more posts for awhile.

Because the end goal of helping someone is the most important thing to me, I decided to respect and comply with the request although I will continue to work with them, review their policy and determine if there is any room for compromise.   I do feel, in my opinion, this was not handled well-ultimatums never feel good especially in a situation like this. However the reasons for this policy, although not completely clear to me, must be in place for a reason.

I do regret the fact that I have lost what is a very important personal channel for me to voice my opinions, my feeling, my concerns and my experiences while I go through this journey.  I also regret the fact that this policy decision has destroyed a primary method of  communication to friends, family and coworkers who care a lot about me and are following my progress from across the country.  I deeply regret the lost opportunity to educate people about the process, as it happens and to generate awareness for the thousands of people living with and dying from kidney disease.

I do not regret my decision to donate.  I would not have made the decision without, in part, the education and understanding I have gained from reading the many blogs and stories, both Canadian and American, I have read in the last five months. I hope that at some point, people who develop these kind of policies are able to better weigh perceived risks with actual benefits such as awareness, increased living donations and better support for people who opt to start along this kind of path.

I am able to write about my experiences after it's all said and done....I will be doing that.  In the meantime, thank you for your interest and support-it has been wonderful.


Lauren

The Social Worker Step



Ok not really but this picture is great



Today I had a very informative meeting with a social worker from the Living Donor program.  She was able to answer a lot of my questions and give me a much clearer understanding of where I am in the process.  Of course it wasn’t all about my wonderings (it’s not all about me!); she had several pages of her own questions as well.

Her role in the process is to review the risks (things like relationships, financial, health, emotional etc.) and any potential concerns I might have with any of those categories as it pertains to my decision to donate. It’s another checkpoint to make sure I’m still okay with the decision and also to help me now or down the road with the tools I might need to deal with any of those risks. She asked detailed questions about my friends and family (some of you were named!) support, about my work support and the things that most worry me about the process. She asked about hobbies and values and what I wanted to achieve from the process. I also got to pick my “ultimate surgery date” and a back up date too.  I can’t say ultimate is an adjective I would use but I gave her a couple of dates (“I don’t really care” was my initial answer but she seemed to really want something more definitive to write down).

We also discussed the “travel factor”.  She told me that because I am an altruistic donor they do actually try to keep me here are less likely to want to push for me to be sent elsewhere in the country.  That did kind of contradict what I was told earlier.  You may recall I was told how my fabulous blood type and the fact I’m not attached to a recipient made me a good addition to the national pool and I could even perhaps start or end a domino (paired) exchange. She said from her perspective, her biggest fear is sending me somewhere that doesn’t offer me the same level of support as I would have here.  If something was wrong or even if I just was feeling terrible, I would do better if I had “my people” or at least a person around to make sure I was ok. I told her that Calgary would be ideal but that I am virtually as open to anywhere in and around Toronto, Hamilton or even London Ontario because I would have great support there.  That being said, if there was a really compelling reason for me to go elsewhere (like I am a perfect match for someone who is incompatible with virtually the whole country’s population) then I would consider going elsewhere.

She also let me know that the next “National Pairing” is the end of February and she’s be really surprised if they tried to squeeze me into that given that the timelines are so tight.  So if they did opt to put me as part of a chain, it would likely be much later in the spring (all of this is dependant on me being okay with their choices). That does not rule out me being part of a local chain sooner though (as in not late spring).  And of course I may just be part of an everyday “the recipient and I” kind of transplant.

It was confirmed that all the tests I have done are indeed sequential.  I would not have been scheduled for each test had I failed or even yellow flagged on any of the previous ones.  A doctor has been scanning the test results as I’ve moved along although he/she will still do a final review once all the tests are back. She said the only time I kind of went out of order was with the psych test and that was because the doctor had a free day which he didn’t think he was going to have again for awhile.  She said they have recently decided that any anonymous donor MUST have a full psych evaluation-if I was giving my kidney to family I may have skipped that part.

At this point she said I was 80-85% done and she’d be surprised if medically anything would be found at this point.  I have an MRI on January 23^rd (yes, a Sunday and I can’t eat all day as the appointment is at 7pm!!). The MRI will count the veins and arteries leading to each kidney to determine which one is “better” and also what type of surgery I will require.  Laparoscopic surgery (vs. a big cut) requires me to have more simplified vein/artery action going on so I’m crossing my fingers that will be what they see.   About a week or so after the MRI I can expect to meet with the Nephrologist  (Kidney doctor).  They will want to review the test and meet me.  After that it’s a (the??) surgeon.  I think that might depend on where I am going. And from that point forward it’s all about logistics and scheduling. Oh la la I’m getting closer!

Because You Asked

Here a few more answers to some questions I am getting from people as they learn about my "kidney thing" or who have had questions come to mind after thinking about it for awhile.

Will you still be able to drink?
I don't know what is funnier-the frequency of which this one is asked (i.e almost everyone) or the fact that it usually is in the first three questions people ask. I had the same question (perhaps even in my top three) when I first started looking at this.  The first answer I found was on the blog of the FBI agent who donated a few years ago in the states ('Kidney Chronicles', as found in my "Interesting Sites" links on the right hand side of the page).  He said: "I can think of a million reasons why people shouldn't drink, but this is not one of them".  Why I don't share his disdain of festive beverages, I think it might be a good excuse for me to continue drink less and avoid overdoing it.  A coworker who shared with me that she had only one kidney (reasons unknown to me) said her hangovers are worse as a result.  However another co worker's husband donated a kidney about 10 years ago and he "still drinks like a fish". So I think the short answer is you can still raise a glass as well as the next person, but like they say, everything in moderation.

Would I want to know about who got my kidney?
Yes I think so.  It's not a "must" for me but I think it would be nice. It's a piece of the story right?  That being said if I didn't like the person or their family or worse if the kidney didn't work, I am prepared for that.  I knew going into this that I have to make the decision because its a good ting to do, not because I have a specific outcome and recipient "type" in mind.

How will they choose who gets my kidney?
That I don't know 100% but I will ask. But here is what I know based on the assumption that they'll ask if I am willing to go into the national program (I am even though it may mean travel). My understanding is that they will come up with a short list of people my blood type can help how likely have been waiting the longest and are the sickest or harder to match. They will perform cross matching tests which are used to identify the presence of preformed antibodies that would damage the kidney (cause rejection). The basic test involves mixing the liquid portion of the recipient’s blood (the part of the blood that contains antibodies) with my cells. If their blood tries to kill my cells (or does kill my cells) that is bad and it won't work out between us. I will likely have to give a bunch of blood for this purpose once cleared for donation and then from there they will test against the short list, schedule surgery etc.  If I had been donating to someone I knew, this test actually would have been done at the start to rule me out as a compatible donor for that person, then again right before surgery to make sure nothing changed (pregnancy, transfusions and transplants can change the antibodies in your blood).

What is a Domino or Paired Exchange?
A "paired-exchange" is a technique of matching willing living donors (who had planned to donate to a loved one but weren't a match) to a compatible recipient who also has a loved one willing to donate who is not a match. For example a spouse may be willing to donate a kidney to their partner but cannot since there is not a biological match. The willing spouse's kidney is donated to a matching recipient who also has an incompatible but willing spouse. The second donor must match the first recipient to complete the pair exchange. Typically the surgeries are scheduled simultaneously in case one of the donors decides to back out and the couples are kept anonymous from each other until after the transplant.
When a non-directed donor (like moi!) enters the Registry, they have half the conditions required for finding a match. In other words, because the transplant of their kidney is not conditional on my friend or family member receiving a transplant in return, I have a greater possibility of being involved in whats known as a domino exchange. The largest so far I think has been 16 transplants, involving 32 people (in the US). There are some pretty intense logistics to it (including travel, OR scheduling etc) but its pretty cool.  The Canadian Registry going national in November was a huge step for this as it centralizes the planning a bit and makes the who "matching" process far less manual.  Here is a diagram of how a domino exchange would work:

Keep the questions coming-it's a great learning experience for me and also on some occasions has given me some added food for thought!

Evaluating My Marbles

This morning was my psych evaluation at  the South Tower at Foothills Hospital (I think I have 2 more buildings left and then I have been in them all for this "Kidney Thing"). The purpose of this test was to make sure I wasn't textbook "crazy" and also to identify any psychological risks that might be increased for me if I was selected as an organ donor. In my case because I am a non directed donor, the interview was a little more simple as the doctor did not need to evaluate whether or not I was being coerced or guilted into donating by my family.

The interview itself was made up of several different type of discussion and short answer type questions.  I was asked a range of questions about my family, my relationship with my immediate family and their thoughts on my decision.  I was also asked about any previous experience I may have had with mental health which I talked candidly about (I saw a child psychologist when I was about 8 a few times, grief counsellors after my Dad's death and had a bout of depression in my late 20's that was untreated but resolved itself).  We also chatted about my propensity to worry about stuff.

We spoke about risks and regret and how I would feel if in 20 years I had issues with my one remaining kidney.  Would I feel regret?  Well yeah, a little probably but at the same time, you need to live with the decisions you make in life which is why you need to think things through before you make decisions, especially ones of this magnitude.  I feel like I am doing that by researching both the medical and personal experience stories out there.  I feel like this is an informed decision with calculated risks.
There was a brief question and answer period somewhere in the middle which was clearly a "CYA" (Cover Your Ass) for the doctor.  Do you hear the radio or TV speaking to you? Do you use IV drugs? Do you think you are being followed, think that your phones have been tapped? (I LOL'd to that one because if an imaginary person was tapping my phone, they wouldn't hear much of anything). Have you every been so happy you've scared people? Do you think you are God? Do you compulsively worry about doors being locked, things being put in their place, the stove being left on? (Another LOL there).

We wrapped things up talking about support from my family, my "people" here in Calgary as well as my work (check, check and check).  He ended with the option that he could write me a letter telling the program I was not medically fit and no one would question me wanting to opt out.  I said no and he said he wasn't surprised.
To be honest, I think I was most worried or apprehensive about this test as it is the most subjective of the lot.  A blood test is a blood test and your results either fall within normal or they don't-same thing with the x-ray and the ultrasound.  But a psychiatric evaluation is so subjective, especially in 45 minutes or less. 
The good news though is that I passed with flying colours.  He said we all would have risks in this situation from a mental health perspective but mine are on the low side and he feels like my self awareness mitigates a lot of that risk.  He said that he's be leaving a message for the transplant program that I was 100% cleared and would send the official letter once he is back from vacation in a week.

He added that in his practice he works mainly with people hospitalized for serious mental illness and also with people with serious, long term illnesses such as liver & kidney disease.  He said it's nice for him to see the other side of things from time to time and meet people like myself who are wanting to do something selfless like this. He said he thought I was an ideal candidate and it was a pleasure for him to have met me.  He thanked me for the opportunity to get to know me a little and said someone was going to be very lucky to get my kidney.

I'm still not sure I am comfortable with the "selfless" label or the feelings the doctor expressed at the end but I guess I'll need to get over that.

Friday Facts

I have taken the liberty of gently lifting some facts coloured with opinion on this subject from a website I found called "Kidney Mama".  Sometime people have already said something as well as you could ever hope to so why re-invent the wheel right?

• There is no kidney shortage. We have about 300 million excess kidneys in this country (Note from LH:  She is talking the US but we can scale it down for us Canucks) walking around in people who think that donating a kidney is a huge surgical undertaking (it isn’t) and doesn’t make that much difference because people can survive just fine on dialysis (they can’t).
• Organ donor cards will never solve the kidney shortage, because very few kidneys from deceased donors are usable. Until we can grow kidneys in a lab, living donation is the only viable option, no pun intended, for retiring “the list.”
• The medical profession needs to wrap its brain around non related donors and find a way to make the donation process more accessible to them. Do outreach to encourage living donation! (Read more about the reasons for the medical community’s discomfort with stranger donors in this Wall Street Journal piece from 2007.)(Note from LH:  We are actually much more medically open here in Canada although I do believe more steps could be taken to make people aware that it is an option here.  I do understand though why the medical community is leery of taking a perfectly healthy person and removing their kidney-it does go against their oath to a degree))
• It is ludicrous and unethical to let thousands of people die each year for lack of a kidney because it is supposedly wrong to compensate donors. Countries that legally compensate donors have no waiting list.(Note from LH:  I don't think I should be paid money for the kidney itself but costs like travel etc should be paid by the healthcare system, insurance or the government)
• It is not theoretically possible to save someone’s life for “the wrong reasons.” It is always the right decision to save someone’s life if you can.
• Kidney donors are not superhuman heroes. “Hero” puts a person on a pedestal as different, and lets people avoid considering that they could do what that person did. Kidney donors are ordinary people who were bold enough to step up and do something truly loving and obvious. Of course one should save another’s life. Of course.

So there you go.