Parade of Hope

Everyone loves a parade. There is excitement in the air, cheers, laughter and easy-going anticipation. For Calgarians, the Calgary Stampede Parade is the mother of all parades. People camp out overnight to secure a seat along the parade route. I've never seen anything like it - it just takes over the whole downtown core.

This year as part of my involvement with the Canadian Transplant Games, I decided to head down to the parade staging area to take some pictures of the float the Canadian Transplant Association was putting in the parade. I'm organizing their Facebook page and Twitter account and thought pictures would be a great way to help create awareness about the games and of course, organ donation.

Walking through the staging area itself was very cool. I've never seen so many different horses...or so many horses in one spot (there are something like 750 horses in the parade...I only saw a fraction of that and was impressed).  Eventually I found my way through horses (and one very giant bull tied to a small trailer) to where all the floats were waiting. I could spot the Canadian Transplant Association float no problem...lots of green! As I got closer, I couldn't help but be taken with it. It really did a fantastic job of telling the story of organ donation. The back part would be where several recipients would ride, waving, cheering and showing people what a second chance at life looked like. 

They had great shirts made for recipients which showed what they had received and when. It was a great visual. While I was watching one of the youngest recipients put on his shirt, I was reminded of one of the magical side effects of the games - connecting people with similar health experiences together. Being a place where transplant patients can feel more normal. When the boy had put on his shirt that said "Heart 2004" one of the moms of another little girl there said to her daughter  "Look - he has the Same shirt AND year as you". I remember what it was like being a kid that age and I can only imagine how neat it was for both the kids to find another kid who had a heart transplant the same year.

The car pulling the float was decorated in a beautifully simple tribute to the donors. I have to admit I was a little overwhelmed when I first saw it. While the donors were of mixed ages, the majority of them were so young, with so much life ahead of them. I confirmed later  what I suspected - that most if not all the photos were indeed deceased donors. It was sad to know that there was tragic situations that had impacted the lives of all these people. At the same time though, knowing that each donor may have donated to up to eight people (not including soft tissue, bone donation which can help dozens more), these pictures represented easily over 100 lives saved. Pretty inspiring. The donors are most definitely heroes, as are their families that made the choice to give that gift of life. I found myself wanting to know more about the people in the pictures  - who they had been and what made their families make the choice they did. It is an amazing legacy to leave.

Someone (not me) did comment a little later in the morning that perhaps some photos of living donors should have been added. I can't speak for all living donors but I kind of liked it the way it was. Sure, we are all donors but a part of me thinks deceased donors and their families are in a league of their own - this was an opportunity to let what they did be the focus.

A few family members of donors were there to be part of the parade and honour the gift their family member made. I briefly got to know one mother and neice who were there to honour their "Tiffy". Tiffany Lynn Cox was a 19 year old who had her whole life ahead of her when she died as a result of fire in 2009. Three years later, it was evident that their pain was still raw and still very much there.Their participation in the parade was part of the healing process for the family. As I listened to Tiffany's Mom talk throughout the morning about her daughter, the fire and her decision to donate Tiffany's organs, I was struck by how much she reminded me of my Mom. In reality they are nothing alike but the pride, the fierce love and they wanting to protect her daughter very much mirror qualities I have seen in my Mom over the years. What was also interesting was that Tiffany's Mom was not originally a supporter of organ donation. But when tragedy struck their family, she knew what Tiffany would have wanted, even if it went against her own beliefs. And in doing so, she said it has helped her immensely to know that Tiffany lives on in five other people. 

I met another Mom who was on the other side of the spectrum. Her son, Jason Letourneau, was born with a major heart defect and spent much of his childhood travelling from Saskatchewan to Sick Kids in Toronto as well as Edmonton to get treatment. When he was 22 he received a heart transplant, a gift his family will be forever grateful for. He worked hard to honour that gift, working and volunteering for many community organizations including the Canadian Transplant Association. Sadly, Jason passed away early 2012 of Pneumonia. "His heart was still doing fine" his mother boasted to me.  "He just was unlucky and seemed to get everything else...H1N1, you name it". She said even though they lost him at 40, he had lived so much longer than they thought he would as a child and they were thankful for that transplant every single day. Being so close in age to Jason, I couldn't help but reflect on how much living I had done in the last 18 years. While forty is too young to die, those 18 years of quality life post transplant he had were an amazing gift he wouldn't have had otherwise. We can do a lot in 18 years, especially we we make the most of everyday. When his Mom learned of my social media love/involvement she lit up and asked if I had known Jason. He had loved Twitter and all that "other social media stuff". I knew of him but hadn't known him. I wish I had gotten the chance.


At the last minute, I ended up having an invitation to walk along the float in the parade. It was truly an honour and a once in a lifetime experience - how could I say no? What was most wonderful was how awesome Calgarians were all along the parade route. When spectators realized what our float was all about, the cheers and clapping grew louder. People yelled out things like "Yay organs!" and "Congratulations transplant people" and "Organ donation rocks!". I found myself a couple of times overcome with what I have become a part of, as a donor. Yep, there I was, tearing up in the middle of 6th Ave, walking in a parade, somewhat behind a dancing horse mascot and ahead of a marching band. It was a pretty surreal, but awesome experience.

Getting My Butt Kicked

Other than a couple of early bedtimes and some issues with food, the last two months since donating a kidney have been very uneventful. Before having the surgery I had read articles saying it could take up to six months to be "back to normal", for Righty to fully adjust and take over all of Leftie's duties. In the weeks since my surgery I have arrogantly scoffed at this timeline (at least in my mind). I thought I was better than that, healthier, some kind of uber healer that was ahead of the curve. I haven't slowed down and if anything I have "sped up" adding more activities including running and additional bootcamp classes, to my life.

The past couple of weeks I have found myself to be more tired in the evenings. I've shrugged it off, attributing it to being on vacation for part of that time and having my sleep schedule altered. I've pushed through the fatigue, not slowing down at all. I even gave blood this past week because my workplace had an appointment scheduled and after all, the living donor program had cleared me to do so. I was sure everything was 100% "back to normal".

Except I'm not.

On Friday we had a team building golf afternoon. It was a beautiful day, not a cloud in the sky and warm by Calgary standards. I was surprised to learn when we arrived at the course we wouldn't be using golf carts-instead we'd be walking the course (I'd never done that before but thought it would be fun). And it was fun. Except by the fourth hole I was too hot and couldn't seem to cool off. I had consumed about three bottles of water but felt like I hadn't had any for days. I had a constant pang or cramp both front and back where Leftie used to be. I soldiered on, sure that my second wind would kick in. I was overlooking the fact that I haven't had reserve energy since the surgery. I made it through to the end and found some shade. I was exhausted but didn't want to show it.

I have always been a master of "being a trooper" and making sure I appear okay, coaxing myself through pain and discomfort. I was the kid who hid having chicken pox (and the associated vomiting and fever) for 4 days as to not miss a track meet. I was the Girl Guide camper who got heat stroke, a mosquito bite in the eye and a gash in my knee all in the first four days of camp but insisted I didn't need to go home. I have rollerbladed two weeks after knee surgery. A few years ago after a bicycle spill, I got back on my bike and road another 20 minutes to work, cracked ribs and severe road rash to my arms. I have pride in my resiliency although now I am realizing that in my case, resiliency might be synonymous with stubborn stupidity.

We continued on to dinner where a group order was placed for several deep fried and salty items. I was hungry so I ate along with everyone else and even was dumb enough to order a cocktail to go along with the food. I did have an additional 2 glasses of water, hoping this would somehow balance everything out. I sat too long after eating and felt my stomach start to remind me of this. As I got in my car to drive home, I knew I had done everything wrong-I was in the sun too long, I was dehydrated, I allowed myself to overheat and I ate food I knew was likely to not agree with me.

I crashed when I got home. I couldn't walk the dogs. I didn't want to sit at the computer, watch TV or read-it was too hard. I was feeling 100% off. I went to bed early thinking I'd wake up refreshed. And I did-sort of. I convinced myself I was feeling better, despite fatigue and a sore abdomen. I ran errands and headed to bootcamp. More exercise in the sun. I had to stop a few times-not like me. I felt foggy, the pang in my stomach was back and I lacked coordination more than usual. The hour seemed like five.

I drove home on autopilot and tried to appear normal. Charlie knew something was up because a) I hadn't brought us a Starbucks like I do every Saturday, b) I looked pale and c) I was sure the house was freezing when in fact it was very warm inside. He asked if I was okay and it was all I could do to not burst into tears. My whole body hurt, I felt terrible and I was exhausted. I couldn't even argue when he told me I needed to go lie down.Which I did, for about four hours. Not like me at all-I am not sure I have ever done that in my life.
I got up long enough to watch a movie around dinner time (no food-I wasn't hungry at all-also not like me) and then went back to bed, sleeping through until morning.

Today I am a bit better but I'm also left with this lingering feeling that I've just battled through something for the last 36 hours. The morale of the story is that even if you are feeling 100% after donating a kidney, your body is different and still adjusting behind the scenes. Its not to say you can't golf, eat salty food, have a cocktail, go to bootcamp, all in the hot summer sun. You just probably shouldn't do it all within a 15 hour period. Lesson learned.

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!

Testing Differences

A few weeks ago, I made a new friend. I haven't actually met her in "real life" but she found this blog and contacted me. We've chatted with each other a few times now.  We'll call her Jess. I'm really excited because not only is she an interesting person but she's also on her way to becoming a living donor-(in Canada!!)-and has agreed I can share parts of her story.

Jess lives in the same province as I do, although she is in a different part of it. She entered the program in October 2010 (like me) and was slated to donate as part of a chain around the same time I donated Leftie. However due to some matching logistics, she has yet to have had her surgery. What I am finding most interesting about my conversations with her is the already apparent differences in the testing and process she has gone through. While I would expect there to be slight differences from province to province, I truly expected the programs in northern vs. southern Alberta to be the same, especially given that we started at the same time, are of a similar age (plus or minus) and are both female. I'm not sure why the tests would be different-kidneys are kidneys and I would think they'd want to equally mitigate patient risks throughout the various programs?

Here is how we were different-sometimes the differences were just technique, but in other cases there are entirely different tests given (or not):

• Jess had had a renal CT scan rather than a MRI
• For her Renal Scan, she had to lay down for a while rather than stand for the three minutes as I did (she also didn't get the dye stuck in her arm-lol!). 
• Jess did two separate 24 hour urine tests (I feel 50% of her pain as I only had the one). She however was not instructed to put the urine jug in her fridge as I was. At least they gave me the tool (hat) to pee in though-she didn't get one of those.
• She didn't have to do a 24 hour Blood Pressure assessment (instead she just to have four separate readings over three days). 

I'm definitely going to compare notes with her further as I think it would be a great exercise to explore the differences. Perhaps when I am finished, one of the programs can take it to the national committee/task force to look at what standardization could be done-especially with more donors travelling out of province to do paired exchanges. If there are others out there that would like to send me what their experiences were, that would be great.

I think consistency protects the patients and makes the programs stronger. It also might potentially prevent last minute "surprises" when tests maybe missed by one program are requested by another hospital who will actually be performing the surgery. And I can tell you as a donor-the more you know what is going on ahead of time, the better the whole journey is.

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?

Teaching & Learning

Foothill's Medical Centre is a "teaching hospital". Most hospitals are to an extent because all doctors, nurses, technicians etc learn as they go and experience new patient situations. However Foothills is the largest medical centre in southern Alberta with many programs the others in the area don't have., It is affiliated with the University of Calgary medical school and is a place where many medical professionals from other schools come to learn. I was "warned" of this a few times during the kidney donor screening and that I may, at times, be subject to things like more questions, slightly longer exams or "extra" people being in the room for tests. It was always fine with me although sometimes it can make you feel a bit like a lab rat.

I was required to go for an ultrasound the day after I went to the ER for the "Pain in Ma Belly". Apparently Ultrasounds are hard to get on weekends so unless it's a life or death situation, they get patients to come back during regular hours. My appointment was at 7:45AM and even at 7:15 when I arrived there were several people waiting. A nurse soon came and took a group of 4 or 5 of us down to the change room area where she instraucted each of us to put gowns on in different ways, depending on what we were having done. You then were to sit in your booth until called.  Everyone was called within about five minutes except for one older man and I, because we were having "more complicated" ultrasounds done.

I felt weird sitting in the curtained booth, essentially in the dark, so I tentatively opened the curtain a little and peered out. The older man was pacing nervously back and forward-he wasn't keen on staying in his booth either. He was shirtless and kept massaging his right arm which had a large scar near the shoulder. He saw me and said hello. He pointed to his arm and told me that it was sore and numb at the same time and that it was the oddest feeling. I nodded, not really sure what to say.  I think he just wanted to talk because he was nervous. SO I let him. I learned about his wife, how they had been together through over 40 years together good and bad. I learned he thought he was the luckiest man in the world because of this. I asked him if he had hurt his arm (hence the massaging and impending ultrasound). He told me he had had cancer throughout his lymph nodes on that side but that they were pretty sure they had got it all. He said with some chemo and radiation they expected him to live another 10-15 years. I guess my face had a "that's it?" look on it so he responded with "that is much better than the alternative and I'll gladly take it". He had so much optimism, so much hope. I was reminded again about time and how when you are told yours might have a sooner than expected end date, you'll do whatever you can to prolong things.

He asked me what was wrong with me (I think he may have phrased it exactly that way lol). I suddenly didn't have it in me to give a vague reason so I told him: I donated a kidney, I caught a cold, the cold made me cough, and now I'm worried I hurt the internal stitches. He asked "who did you donate your kidney to?"  "A stranger. I don't know who but I've heard they are doing well". No blinking from him. He just said "I think that's the nicest thing I've heard anyone do. You made someone really happy".

I smiled and before we could say anything else, a technician came and got me. I wished the gentleman, who was still massaging his arm, well. He nodded.

The technician was a student so she needed to have a guide in the room. She was very thorough (and also asked who got my kidney....) and a perfectionist. She mostly spoke to her instructor, other than when she needed to tell me to breath or not breath. But, at the end, she pointedly stopped to thank me for my patience-she had taken a little longer than normal. She said she had never seen someone missing a kidney, this soon after surgery and it was an extraordinary learning experience for her. She seemed absolutely thrilled and excited.

It's funny how that day at the "teaching hospital" I got to learn a few things too. I learned from that other patient that love and optimism can see you through a lot. I learned that you can be thankful for something like chemo and radiation and surgery that leaves your arm limp and numb if it gives you a chance at another 10 years with your wife. I learned that I could make a student's day just by being short a kidney.

Who knew.

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.

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

Checking Out

Four days after kidney donation surgery and I was going to get to go home. Yahoo!  I've actually read that in some US hospitals they are now sending people home after 48 hours. That seems a bit crazy to me-but a part of me also wonders if I should have somehow recovered faster.

Doctorpalooza told me it would take a couple of hours to process the discharge but thought I'd be able to get out around lunch time or early afternoon. They asked if I had any questions (which of course I didn't) and then off they went. A few minutes later Dr S returned with the nephrologist, (Dr W). Dr W wanted to give me a few more instructions including not lifting more than 10lbs for at least a month, no strenuous exercise, keep walking lots and generally take it easy when I need to. There was the usual "if you develop a fever, pain, wound oozing etc. come back to the hospital".  I had a quick chat with Dr S about some other things and off they went.

I sat in the room and thought "now what?".  I had a shower and got dressed and gathered up my things. That took all of 30 minutes at the most. I was barely 9:30. What was I going to do for 4 hours?  I looked outside-beautiful day out-and envisioned myself shuffling out of the hospital on my own, bag in tow. If I had lived within walking distance I probably would have tried to shuffle home (although they wouldn't have let me). But alas I had to wait for the nurse to tell me I could go and for Charlie to have a window of opportunity at work to pick me up. I was very impatient with everyone and everything.

The door curtain started to flutter and in came the Program Coordinator (let's call her Tina). She looked frazzled to say the least. She came in and sat down, all smiles. "Dr S. just called me and told me they were letting you go so if I was going to come see you I should now!".

I laughed. I didn't want to tell her I probably had another 2-3 hours being stuck there. She asked me how I was doing-all the usual medical questions. I told her I was doing quite well and was happy to be going home. She reminded me of all the things I shouldn't be doing (lifting, walking two big dogs) and those that I should (like drinking lots of water everyday and eating lots of fruits and veggies). She thanked me for all I had done for the program so far and said she looked forward to reading the blog to see what improvements they could make. We did talk about a couple of big concerns while I was there (the anti-flower lock down, the lack of call to my family) and she took notes. She told me everyone involved in the chain was doing well as was my recipient (yay!). I asked if all the transplants were done the same day and I was told she couldn't tell me that (not sure why but whatever). She let me know down the road if I was curious about the recipient I could send the program a letter and they would make sure it was unidentifying and forward it on...shades of my adoption search process in way.  We'll see what happens.

She presented me with a medal and a pin from the program too as well as a bracelet. I have to admit I was pretty proud of the medal. I know it seems like a weird token of appreciation but I think it's a great idea.

A few hours later the paper work was ready, Charlie arrived and I was good to go. We gathered up my flowers and suitcase and I walked right out of there (I did kind of wonder when they stopped wheeling patients out in a wheelchair but I wasn't going to stop and ask that question!).

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.

Confidentiality & Communication

Before I get into describing my recovery at the hospital and after I was home, I'm going to take this opportunity to talk about what I think was by far the hardest, most frustrating experience I had throughout this process. I am going to be very clear from the get go that this had nothing to do with the Living Donor program itself as they were completely unaware until it was already a problem that this was going on. The Foothills Medical Centre administration is going to take the blame on this one. I welcome an explanation from them although at this point what is done is done. Please for the sake of other non-directed donors out there, don't do it again.

There was a post I did awhile ago about the fact that there isn't a consensus on what to call donors like me. The names used so interchangeably, non-directed, anonymous and altruistic, all mean something very different depending on who you talk to. I've said before, in my mind, I am non-directed which to me means I don't have a recipient in mind for my kidney-no other expectations or meaning.  Now I totally understand it is standard  procedure to keep the donor and recipient separate prior to the surgery and to that means different wards, maybe even different buildings, keep us apart in the surgical holding pen and in recovery. Make sure sure the surgeons don't share names etc. I do think however they took it a step too far with me.

As I mentioned when I posted about my admission, I was forced to sign a confidentiality brochure on arrival to my room. It didn't really outline effectively what that would mean specifically in my case nor was it explained. I thought maybe it was kind of like when a celebrity checks into a hotel, they give a code name that people could reach them by. No, not really. It meant that if anyone inquired about me by name, I would not exist in their system.But even that wasn't explained.

Now why was this a bad idea? Here are some of the reasons:

Flowers:  I couldn't get any because I didn't exist and I couldn't tell people I couldn't get any because I didn't know ahead of time that I wouldn't exist. In fact it wasn't clear to me until about 3 days in that not only were people not to send me flowers but it was somehow my fault if they did and I was really causing problems for the hospital. the day after surgery, I was up for my first walk around the floor (sleepy, unstable and hurting a bit).  I walked passed the nurses station. A nurse there said "Brenda!" in my direction. Christian, my walking partner said "Do you mean Lauren?" She waved her hand dismissively and continued "Do you know a Jamie?!?!".  I was confused at best. Christian let her know that was my brother in Texas.  She reached behind her and produced a pretty little flower arrangement with a bear attached. "I have no idea how these got through.  You shouldn't be getting flowers" and thrust them at me. I felt like a 5 year old that had done something wrong. We continued back to my room, perplexed, trying to figure out what I had done wrong. No one asks to have flowers sent? I felt terrible that I was somehow making waves. Over the next few days I received a couple of texts and emails from other people and a flower store trying to confirm my existence and where I was exactly because they were being told I wasn't a patient. I realized my brothers had gotten through because I happened to have told him in passing the night before my surgery when he called, the number and name of my unit. The florist had called him about my non-existence (all the way in Texas!!) and he added that information to see if that would work. Two other arrangements made it through because people managed to text me and find out what ward I was in and that was the secret handshake required (I guess).

Visitors: a couple of days after my surgery I had a surprise visit from another non directed donor who lives in town. I had met her a month before my surgery and she decided to show me some support by coming by for a visit. I was lying in bed and the angry flower nurse came in and asked me if I knew "Cindy". It clicked who she was talking about and I said yes.  She looked more irritated and said she'd go and get her then. After the visit was over my regular nurse came in and informed me (I think this was 3 days post surgery?) that I'm not really supposed to have visitors because of the confidentiality agreement and I would need to provide them with a list of anyone who might visit me (and by the way I had to supply the paper). If they weren't on the list, they wouldn't be allowed in. I'm sorry...did I do something wrong? At that point to for the record, I had had the 3 visitors-Christian, Christian Jr. and Cindy. 

Communication fail & where they got lucky: Because Christian was at work for a portion of surgery day, I had asked several medical professionals along the way if he could be called when I was out of surgery (around 12-1PM MT). "No problem" I was told repeatedly. That has to be fairly common right? I had even asked about this before being admitted so I could put a plan in place for Christian to call my mother in Ontario so that she could relax and also share with other anxious people. He could then also be at the hospital around when I was back in my room. Except for whatever reason, no one called him. I don't think that had anything to do with the confidentiality agreement and everything to do with the trauma ward not wanting me there. By 4PM MT, he hadn't heard anything. He was getting anxious and thought about calling the hospital but opted instead to just start driving there. Had they needed to switch my room or even ward, it may have been an issue for him to find me without jumping through hoops.  My mother, frantic in Ontario, was also in the process of looking for information to call the hospital. Imagine if she had called and was told I didn't exist? They got lucky here because just before several  frantic people were about to call/arrive (and find out I didn't exist) because notification was long overdo, I contacted them. What you ask?  You called them? But you just had a kidney removed?

I got back to my room, barely awake and asked the nurse if Christian had been called, assuming he'd be there any minute. She said no and just kind of shrugged. I panicked. She didn't offer to call and was working to get the chart station set up in my room. Despite the fact I was in pain, groggy and as high as a kite on morphine, I asked her if she could get my iPhone out of my shoe in the closet. I managed to send Christian a text "I am in my room. I am OK. Please call my mother". I think sent an email out (I had a draft saved) to a slew of others here and in Ontario, so that they would know I was alive.

Keep me separate from the recipient-fine.  But only people who know me know my name and they would be the only ones asking about me.  The confidentiality agreement made things stressful for me. I was pretty forcefully made to sign it with no explanation. I was treated inappropriately by select hospital staff for "undermining" it. I worried that people were sending me flowers and were worrying when they learned I didn't exist. I felt bad. I felt even worse when I got flowers-guilty. I worried about potential visitors to the point I emailed a few good friends and told them not to bother coming if they were thinking of coming. Did I need to worry about that? No. Did I need to feel like some kind of dirty secret? Absolutely not. It was not necessary and was not fair. Patients need support and sometimes that support isn't planned or on a list.

It's funny but the admitting instructions said not to bring cellular devices. However the living donor coordinator told me its fine if used responsibly. Had I not had my iPhone, the lack of hospital contact post surgery compounded by the confidentiality agreement would have been a lot worse. Which mean that unless the right people in charge learn from this, it could be pretty tough on the next donor in my shoes if they leave their smartphone at home.

Pre-Surgery Day-Checkin' In

As I mentioned in my last post, I knew I was going to be placed in a ward somewhere in the new McCaig tower, on the Foothills Hospital campus. It's a new building that opened late last year, located behind the main medical centre building. Because of its "newness" it was difficult, if not impossible to find a map of the campus online that reflected its location. I knew however that there was a bridge linking the main building to it via the third floor thanks to "Sally" who had visited a sick brother just days before. She had opted to share the info with me "just in case it came in handy". Boy did it ever. You'd kind of think those instructions would come with the admitting info....

I followed the signs from the third floor and weaved my way over to the new building. I should note that the reason I was being put in that building was to keep me "separate" from anyone involved in my donation for privacy reasons prior to the surgery. I was fully aware that would happen as this is normal protocol in Canada (and many US hospitals) currently involved in non-directed donation. Anyway the new building still had that "new car smell" and was very modern-especially in contrast to the dated 60's style of the main building. It reminded me of a trendy hotel. I made my way to the lobby of the building (which had a decorative fire wall...nice touch) and found the admitting area. What was really surprising was how empty the place was.  Mid after noon and there wasn't a soul waiting to speak to anyone at the info desk or admitting,.  In fact I could only see 3 people, including the girl at the admitting window. A big difference from the zoo-like quality of most hospitals, including the building I had just come from where the line up for the six elevators was about six people deep. It was a little surreal how quiet it was.

The admitting lady took my information, made me sign a few forms and asked me if I wanted a private, semi private or multi patient room. I wasn't sure what I'd be covered for but I decided the $47 a night for the Private room, even if I ended up paying full price for it, would be worth it for the privacy factor.  I remembered another donor I recently had spoken to who mentioned her semi-private "room-mate" spend three days attempting to cough up a lung. My choice ended up being highly worth it although I have nothing to compare it to really.

I was directed to take my file and suitcase up to the fourth floor and find my specific unit. It was very "Do It Yourself" health care. I was lucky to end up in the elevator with a visiting nurse on mat leave and her baby who were heading there. Between the two of us we managed to find out way. I presented myself at the nurses station. They took my file and let me know my nurse would come and get me soon. About five minutes later she showed up, gave me a quick tour of the floor (I found out I was in a lock down trauma ward) and took me to my room.

The room looked like a nice hotel room, albeit with a lot of medical equipment and plug ins. There was a bed, a couch and a chair as well as a large closet and bedside table. The room had a large window with a  westward view, towards the mountains-it would have been spectacular if it hadn't been so overcast. There were two doors to the room as I guess it is a quarantine room when they need if if someone comes in with some kind of infectious disease. She showed me around my new digs-she was a bit rushed, explaining it was almost shift change and she needed to get her charting done. Another nurse appeared with a confidentiality pamphlet I needed to sign.  We'll get to that in another post. My nurse and I had a quick, strained conversation about the pamphlet which I then signed.

Satisfied that I knew all I needed to know, she mentioned I'd have some tests coming up and that I could push the nurse button if I needed anything. Off she went.  I sat down on the couch, suddenly feeling very alone and thought "Now what??".

Surgeon Time

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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April 28 2011

After what seems like more than a couple of months, I was back at Foothills today to meet with one of the surgeons (Dr. S), supposedly the last official step in the evaluation process. I never did write down any questions for him; I was feeling pretty calm about everything.

I first chatted with the program coordinator. She was still talking in "ifs" and "when's" -I know she is supposed to but it made the rejection fear kick in. She reminded me again that the next match period isn't until sometime in June so there was some time for more tests of required, albeit not a ton.

She left and I waited in the room for Dr. S. It was snowing...again.  I think every time I've been to the living donor program offices it has been -30 degrees and/or snowing.  Doesn't matter that its end of April...snow. I reread the liver poster on the wall-I think I have memorized the anatomy of the liver-not sure where that will come in handy as a skill. I could hear Dr. S going room to room checking in with his other appointments-he seemed like he was having a busy, frantic morning. About 45 minutes later, he paused outside of my room and came in. He looked different than the last time I saw him...he was in scrubs versus the polo shirt and khakis of our last visit. His hair was a bit wild, probably a reflection of the morning he was having. As he greeted me his face seemed to relax and he smiled, happy to see me. Maybe he was happy to have an appointment longer in duration than the quick check-ins he seemed to have had thus far.

He started by asking how I was, how work was etc. One of the things I like about Dr. S is that he seems genuinely interested in me as a person not just what we are trying to achieve-it doesn't seem like scripted small talk. From there we went on to my file.  He review it, asking the usual medical questions and summarizing the tests I had gone through and how I did on each one. He was concerned because despite the "approval" from Dr. N, she hadn't recorded any notes (grrr) which I guess was atypical. He said as far as he was concerned I was a good candidate and while he would follow up with her to see her thoughts, he believed I was good to go. He was very optimistic and for the first time in months, I felt optimistic about this "kidney thing" maybe happening.

Dr. S said that both my kidneys are the same and both only have one vein and artery each, making removal simplified compared to those people with multiple veins and arteries (it is still possible to work with donors in that situation but obviously the simpler, the better). As a result, he said if they went ahead, they'd like to use my left kidney. This would also be better for me as the surgery can be done laproscopically which is far less painful and invasive thank open surgery, and has a faster recovery time. Yahoo! I was on the fence about what my decision would be if they couldn't do this via scope-I'm glad I don't have to make that decision.

He then logged on to this very cool medical site that did a step by step breakdown of how the surgery would go-complete with pictures-both real and computer graphic models. I don't want to gross anyone out with the details but it was neat to see how they would "get to" the kidney. Obviously it involves moving the other organs that are in the way out of the way so they can have easy access. he also was able to show me the difference in anatomy on the right vs. left side so I could better understand the pros and cons each side has as a donation candidate.  I had already read about all of this but it was very neat to see at a much more granular level with pictures. At the time I remember thinking "this is cool!  I want access to this site so I can show people" but then I realized while there are a lot of people interested in how I do in this surgery, there are very few who want to know how the surgery itself is done.  Especially not with pictures.

He also did a quick physical exam-the usual listening to me breath. He checked my ears, throat check and feeling around my belly region. He took the opportunity while I was lying down to show me where on my stomach I could expect to see incisions and roughly how big they'd be. I found that helpful as it was much easier to appreciate the incision size when he traced the spots on my abdomen with his had than it is reading random measurements on a website. I have heard that each surgeon has their own preference for where they opt to cut and each area has pros and cons associated with it. While it might not be Dr. S who operates on me, it was still good to know what he would do.

Towards the end of the appointment he asked me when I'd like to do this.  I responded with a question "When do you want me to do this?  Isn't this kind of up to your plans?". He kind of laughed and didn't respond. I told him the the program coordinator had mentioned June being the next national match up. He said it was but that he was also thinking of doing something local with me-perhaps starting a chain which might take a little longer to put together. I told him I was flexible and that he should just figure out what's best. I then thought to ask him how much longer his idea would take (I mean are we talking months here?) and he said just a few weeks longer-maybe late June early July, that it depends. I asked him on what and he said the size of the chain.

"How big do you want the chain to be?" I asked.  He kind of laughed at me and made some comment about how I never have questions about the procedure itself and now I have all these questions about what he's putting together. He seemed reluctant to tell me but there was excitement in his eyes and face - maybe he didn't want to come off as the surgeon who was excited about surgeries? I don't know. He eventually answered "Four".  That's pretty neat. They probably won't tell me what it ends up being or if I am even a part of it but its a cool idea. I love the logistics behind these chains-it amazes me that places in the US have done up to 16 transplants as part of a chain in a couple of medical facilities in one city, same day. It is mind blowing the amount of planning that must go into these kind of things.

The appointment ended with his promise to follow up with Dr. N about her notes and he said the program coordinator would be in touch when they had an idea of timelines. I am feeling really good about things-maybe I am finally getting somewhere? Regardless, Dr. S made me feel better about things and back on track! Phew.

The Stress Test

 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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February 7, 2010

When I first started down this path of wanting to be a living kidney donor, a lot of the research and personal stories I read told me that there would be stress, worry and/or fears and there might even be a dash of anxiety for good measure. It's all "normal" and to be expected.

Except I really didn't have any stress about being a donor. None of the tests scared me (okay, the MRI didn't thrill me but it wasn't a terror thing and I was over it within a few hours).  I've been okay with watching vials of blood come out of my arm and telling my story to countless strangers in lab coats. I am comfortable with the risks of the surgery including the potential negative consequences the present and future Lauren might face. I've oddly enough even been at peace with taking the time off work (for those of you who know me well, that in itself should say something). From day one the commitment to donate a kidney to a stranger has not phased me-I am ready, willing and hopefully able. I've said it before-this has been a rewarding and interesting experience thus far and I'm very sure of myself as it pertains to this decision.

What HAS been almost overwhelmingly stressful to me is this conflict or disconnect with the Southern Alberta Transplant Program over the Canadian Blood Services "Social Media Guidelines". Everything from the way the message was delivered to when it was delivered has been upsetting, confusing and has lead to a real distrust of some people involved in the program. I'm not talking about the doctors and the technicians who have dedicated much of their working lives to making things better for people in need of transplants. I'm talking about the policy makers or even worse-the people who are not trained specifically in privacy and compliance at all who are interpreting the policies and what impact it should have on me as a patient.

On January 14th, as part of their communication of the Privacy Guidelines, it was stressed that they were not reprimanding me. But yet they went on to deliver an "or else" message to me. When was the last time as an adult you received one of those? They made me feel like a risk, a liability rather than a patient and more importantly, a potential donor. It's like I became a problem to them and not a solution for someone. It seemed like for the first week they were changing their minds on what I could and couldn't do-giving me the go ahead to talk to the media then doing a complete 180 a week later telling me essentially any communication outside of the telephone prior to surgery is prohibited (which they can't do...but whatever). How do I trust these people after that?

I've had this horrible feeling for almost a month now that their misunderstanding of privacy law and risks will lead to a decision to not let me donate. That has kept me awake at night.  Not worry about pain after surgery,  not worry about the logistics of the operation, its success but that. And to be blunt, that's crappy. I was doing a good thing and I feel like it was all for not.

I went back to them a couple of weeks ago with some questions and they have artfully delayed responding until I see the doctor this Thursday.  I guess "whatever will be, will be" but I could have done without all this.