For Dad

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

5 Things That Could Have Been Better

As promised, here is a flipside follow up to my  Five Things That They Did Right post (in no particular order). "They" again, are the Living donor program and/or Foothills hospital (and of course Alberta Health).


The Unengaged: I'm not going to sugarcoat this one. If you are employing people to either take care of other people or be a medical part of the donor evaluation process, make sure they believe in what they are doing. Otherwise you know who gets the short end of the stick? The patient. The donor. I'm not suggesting you fire anyone who shows a degree of apathy. Coach them. Mentor them. Show them how to be better. Watch how they are doing their jobs. Tell them how they could have done it differently. Teach them how to embrace change.

I fully understand that non directed donors like me (in Canada) are rare and new. I understand for some doctors it's a test of ethics (are they hurting one person to help another?). And I am okay with that-in fact I am thrilled that many doctors are taking time to reflect on their concerns and uncertainty-that always makes us better at what we do. But figure it out before you bring it into the room with the donor candidate. Do not project your doubts on them and make them feel foolish about wanting to donate a kidney. If during my visit with Dr. N she had just been honest that she had some uncertainty with living donation vs throwing big words and condescension at me I would have left that meeting with far more respect for her. And I wouldn't have felt so crappy. Same thing goes for some of the people working in the trauma ward. I know you didn't know what to do with me and I know I was outside of what you were used to. Heck, I even had my own gaggle of doctors you'd never seen before. I am sorry that I was an inconvenience to you. But that should never have been my problem to deal with.

Communication Breakdown:  If a patient has major surgery and there isn't someone in the waiting room...waiting...for new of how things went, question that. Make that someone's job. And even better, if several people on staff promise that a call will be made to a patient's family contact, make the call. And finally, if you are the nurse, who find out from the panicked patient that no one called her family and that patient asks for her own phone while barely out of anesthetic and on morphine, offer to help her (above handing her the iPhone).
The other big one was the no blogging or social media "rule" enforcement. It might have been good to do a more in depth check with Canadian Blood Services to be sure you were delivering the right mandate. I am confident though that learnings have been taken from this incident and hopefully things of this nature will be handled better in the future.

Anonymity: This should not equal "not existing" to people who ask for a patient by name. This should not mean scowls from nurses when people send flowers.This should not equal conversations about me in hushed tones when I am in the same room. And if it has to be this way, tell people up front and get your lists and rules in place before admitting the patient. Don't add new rules and regulations every day.

Jello: Just get rid of it or have options for the pour souls that are on whatever diet classification involves clear fluids etc. Do a poll...you'll be hard pressed to find many over 12 who admit to liking jello and I bet the number dramatically goes down if it's what's for breakfast (paired with vegetable consomme).

The admitting process:  I found it very "do it yourself". Having to find the right building, the right floor (admitting file in hand)...that was all a little weird. The package I received in the mail was full of pages and pages of information that didn't help me prepare for my experience and I've found since the surgery I wished there was more relevant info as to what to expect post surgery-for this specific kidney donation surgery. Oh and you might want to update your "what to bring" materials if they reference Walkmans. I'm just saying.  Another great option would be to have it online so that a patient can easily access the info before and after and search for info related to their particular questions. I'd be happy to write that for you (that is an offer, not sarcasm).

There are a few other things I think could be improved and as the program knows, I'm open to discussing what worked (a lot) and what didnt (and we already have discussed a few items). It is a new process-so in many cases I understand I was a test case and they are learning from me. But somethings I experienced I think would still have happened regardless of why I was in the hospital.

Live and learn right?

I am always ready to learn although I do not always like being taught.  ~Winston Churchill

Canadian Blood Services-The Sequel

The last 20 or so entries in here were drafts I had written From January until late May and published in June about the journey I went through in order to become a living donor. When I started this back in the fall of 2010, I had hoped to chronicle as many relevant steps of my journey as possible to raise awareness about living donation, and also give my friends and family some peace of mind about my decision. As the blog progressed, I also found it to be a great outlet to share my thoughts, fears and feelings about donating a kidney. Because I knew the living donor program is new in Canada and even newer in Alberta, I also thought it would be an easy way to  discuss some of the challenges and opportunities within the program, to maybe help build a better system and process. The blog also became a huge support mechanism for me as it allowed me to make connections with other donors as well as people in the global "Kidney Community".

In January of 2011, a former coworker sent my blog to the local Global TV station. A longtime reporter there, David Boushy, contacted me and they wanted to do a story in conjunction with the Kidney Foundation, Foothills Hospital /Alberta Health and myself about living donation. I brought this to the attention of the program (and shared a link to my blog) and they told me that Global would have to navigate through Alberta Health communications and that it was unlikely they would participate-which I understand. The Kidney Foundation of course was all for doing something to promote awareness. I let Global know where were stood and left it at that.  A couple of days later I got a call from the social worker assigned to my file at the living donor program.  She let me know that if I talked to the media further or continued to blog my file would be put on hold and I would be unable to donate. She attributed the ban to a social media policy handed down from Canadian Blood Services and mailed me a copy of it. I was told I could resume blogging once I had compelted the surgery or was deemed medically ineligible to donate.

What I read in the policy did not seem to match what they were telling me.  When I questioned a few points, it was reiterated that this was their policy and I needed to abide by it.  Not wanting to risk my place in the program, I let it go and kept blogging without publishing and for the most part steered clear of other social media outlets.

Fast forward to June. Surgery is done. I am released from hospital and start to publish the drafts I had saved over the last five months. The first one to be published was the Open Letter to Canadian Blood Services. Because I wanted to make sure that I was upfront with them about the policy, I emailed them a link. However they were already on it as their social media scans had picked it up. Within a day I had a message from Ron Vezina, Director, Media Relations and External Communications for CBS. We arrange a call to discuss the policy and what had happened.


During the call, Mr. Vezina made it clear that from their perspective, I should have been able to continue blogging throughout the journey. Their policy was a guideline (just as I had thought). I did need to make sure I did not identify anyone else involved in the donation or the chain for privacy reasons (understood). He mentioned that I should be mindful of the risks associated with being more public with my story, but that with my communications background, he felt I understood those risks and how to mitigate them.

So where did things go wrong?  I did ask Mr Vezina if there was a chance that CBS people involved with the donor programs on the national task force may have miscommunicated the guidelines and their objectives.  He said it was possible a and that he'd follow up to ensure that it was being communicated effectively. I think it's also quite possible the guidelines were under communicated, leaving them up to too much interpretation at the hospital level. The other explanation would be that Foothills Administration/Alberta Health were uncomfortable with the blogging and used the CBS policy as something to hide behind. It wouldnt surprise me given some other things that occurred while I was in hospital but we'll get to that in a future post. In the last couple of weeks I have let those involved with the living donor program at Foothills know that the ban was in error and that I hope they aren't continuing to tell patients to avoid it. They did not specifically comment on that back to me. They did thank me for the information but I welcome further discussion if I can help them strike a balance between privacy and having an online outlet for donors and recipients going through kidney transplantation.

For the record I am very pleased how CBS handled this-they were professional, quick to respond and are willing to take steps on their end to ensure they are not hindering anyone from promoting awareness of living donation or being a part of an online community. My respect for them has been renewed. I sincerely hope that Foothills Hospital and any other donor program in Canada takes  the time to review what their policies really are and the impact their actions can have on people like me.

I've been asked by people if I am angry about this. Not really.  Disappointed? Yes.  Frustrated? Yes. But its done and there is nothing I can do about it now. I've been able to talk about it. At least one group involved (CBS) has listened and I truly believe are doing their part to make things better. All I can hope for is that this doesn't happen again to someone else.

Over the coming days I will get into details about what the donation surgery was like, my recovery and what I learned along the way. Thanks for reading :)

An Open Letter to Canadian Blood Services

 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 15, 2011

Dear Canadian Blood Services;

Allow me to introduce myself.  My name is Lauren.  At this time that I am writing this, I am a 35 year old "wanna-be" altruistic, non-directed, living kidney donor.  I am also (outside of this donation screening time period) a regular blood donor with your organization. It may also interest you to know I am the blood donation coordinator at my place of business. I am very pleased that over a third of our employees donate now on a regular basis and I'm trying to increase that by engaging our employees with positive stories of blood donation and its many benefits in our community.

In late October 2010, I entered the screening process here in Alberta to become a kidney donor. Here we are in January and I'm almost all the way through. I look forward to hopefully giving someone a gift that will make their life exponentially better. It has been quite a wonderful, interesting journey thus far and I hope to see it continue.  I realized as I started learning more and more about donation, the process and kidney disease, that there is a lot for the general public to learn and understand. There are SO many people suffering from kidney disease and as you know, most will not receive the transplant they need to save their lives.  There just simply are not enough organs. I am a natural communicator (as my mother would say) although I much prefer writing as my method than other forms of media. The more I got into this, I quickly saw and opportunity to help my friends, family and coworkers learn more about the need and the process that one must go through to become a donor. As you can imagine, many of my friends and family had reservations about my decision and I wanted to help them better understand what I was trying to do. For geographical reasons, I opted to start a blog to inform, reassure and educate. It was something else I could do to help both my loved ones and also the many people out there struggling with kidney disease. I wanted to write "as I went" about it as I went in case I was not eligible to donate-so that the message wouldn't be lost. A few months later, after some people became aware of my blog, I got a call from my local transplant program.
I was told based on a mandate or policy from Canadian Blood Services that if I wanted to donate, not only could I not speak to the media but I had to stop writing my blog, effective immediately. No room for discussion.  I was told that if I continued, my file would be put on hold until I complied.

I know the living donor program is new as is your national registry and everyone is still learning. I can appreciate that and perhaps would offer my feedback on things as well if given the opportunity.  However none of the organizations involved are new.  You have been dealing with donors and patients for years and years. You have highly developed communications strategies, legal teams and program managers.  Your business has always been people. And in this particular situation, with this policy, I stopped being the patient and became a liability, a risk to manage.

Because of my professional background (involving privacy, compliance and communications) , I can relate and understand most of it (that doesn't mean I agree with it). However I think the policy may be hurting as many people as you are trying to protect. Did you know there are hundreds of Canadian and American blogs out there talking about the experience of donating a kidney or needing a kidney out there? There are Facebook groups, online forums and other social networks just for the kidney community. Are you also planning to tell telling people waiting (indefinitely) for kidneys they can't talk about it either or no kidney for them?

As with most ultimatums, he or she who issues them usually wins especially when they are bigger than you. What is troubling is that no where in your privacy guidelines does it even indicate that one cannot talk to the media or write a blog before surgery-it is just recommended that we don't. You outlined three risks (all of which pertain to me and not the program, all of which can be overcome). No where in the policy does it indicate that a possible consequence of writing a blog or sending an email could lead to donor ineligibility.  But yet that is the reality out there. I have had no choice but to make the decision to stop my blog because someone needs my kidney and that is far more important than any policy you can sideswipe people with.  That being said, I am not about to not express my opinion to you on the impact it has had on me and my experience.

• As I mentioned, my wanting to donate was a big decision that was of concern to some of my friends and family. I live in Alberta and many of them are in Ontario or in the United States.  This was the primary method of communication for these people, that without notice, was cut off. No support for me, no awareness and comfort in my decision for them pre-donation. 
• As much as there are standards and rules in place to uphold and protect  privacy, do I not have an ability to waive that right?  After all it is my privacy. I  understand not identifying others involved at the time of donation but at this point-it's just me?
• I was starting to become a part of an online community of people across North America that have donated, want to donate or are supporting someone with kidney disease.Without warning, I was unable to participate in that community with was a great source of information and support for me. I am not sure if you are aware but most people affected by kidney disease really want to talk about it-they want awareness because that is all that is going to help them and get them through the challenges the disease presents.  

It appears with this decision you may have forgotten the nature of the business you are in.You help people.  You are about people.  This policy impacted what had otherwise thus far been a rewarding experience. It seemed it was all about the risks, the kidney and not about the person.   I hope you were able to mitigate whatever your risks were that you were trying so desperately to protect-at least one of us would then have been successful.  I hope in the coming months or years your legal and communications teams will think a little more about  the fact that in 2011, you can't really have iron-fisted control of the information shared over the web. It's much more productive to work with online channels and communities than against them.  (Incidentally, when I was trying to find more information online about your media policy for donors I found your press release on how social media is a wonderful tool for awareness-it was quite ironic and amusing). I challenge you to come up with a policy that balances the need for a degree of identity protection while still allowing people to have a voice. Develop guidelines that is sustainable and realistic that give people fact to help them but also give them choice..

Mostly though I wanted to give you the opportunity to understand where a national policy may have been a little short sighted and perhaps too little too late. And how, at the end of the day you really defeated a donor who was just trying to help, who believed in the program and what it was trying to do. I was cut off from an outlet to express myself and was prevented from communicating with my family and friends in a way that had been highly successful and rewarding.

If you were a business that sold something, I 'm not sure I'd want to be your customer anymore-I'd take my business elsewhere. Unfortunately how yoPublish Postu opt to run your organization is not the fault of the many patients who rely on you. I can't  just "not donate" my kidney, not promote organ donation or encourage people to donate blood because of a short sighted policy. In the end none of us really are ahead which is too bad.

Sincerely,

A potential kidney donor