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

Top 5 Things They Did Right

Now that I've summed up my hospital experiences donating my kidney,  I thought I'd do a bit of a debrief on what was great (and what could be improved-next post...).  Everybody likes a Top 5 right? ("They" being Alberta Health, Foothills Medical Centre and the Living Donor program).

1. Doctorpalooza:
 The surgical transplant team overall were fantastic. While I didn't get to see/know them all to the same degree I did with Dr. S, Dr. W, Dr Y they were all warm, friendly and clearly dedicated to what they do. They had a collective sense of humour that was refreshing. Above all though, they are a true team of individuals who have a passion for what they do and their patients. I realize kidney donation and transplant isn't rocket science and the surgeries themselves are generally "unremarkable" (as Dr. Y described mine). So many people have complimented me on my donation but really to me-these doctors are the ones really making differences in peoples lives-they are the heroes. I do have to give a special mention to Dr. S as I dealt with him the most.  He clearly cares a lot and always made sure I was engaged in what was going on. He took a genuine interest in me as a person and what I had to say which really made me feel comfortable.
2. The Process:  While we had a few hiccups when it came to communication and timing (which we can work on), I think the donor screening process itself was very thorough. I went into the surgery knowing I was more than medically (and mentally) fit to do this.I don't feel like I should have had more tests and I think 99% of the tests I had made sense even if we were a little backwards sometimes. Most tests could be scheduled easily around work and other appointments were always at more convenient times of the day as to not be too disruptive.
3. Shining Stars:  There were a few people along the way that don't fall under the Doctorpalooza umbrella that really made a difference.  My "floater nurse". Tina, the Living Donor program co-ordinator. The three renal scan ladies who waved their arms along with me in an effort for the contrast dye to move out of my elbow. The nurse in the ER (I'll get to why I was there eventually in a later post) a week after surgery who told me I should have gotten an iPad2 instead of a medal for my kidney. Thank you. You love what you do and it shines through. You always treated me like a person and not a patient (there should never be a distinction but one seems to exist). You were always candid, funny and really professional.  Keep doing what you do because you really are great at what you do.
4. Openness to Change: Everybody I encountered who is involved with the Living Donor program were very clear about how new this is, especially when dealing with non-directed donors like myself. Nobody once pretended to have it all figured out. No "faking it till you make it". What a relief. That made most of the bumps I hit along the way easier to understand, accept and move on from. What was even better is that you continually invited me to help you make the process better for people down the road. That has meant a lot to me and I look forward to being able to help with that further.
5. Answers: Regardless of whether I was asking what "code 66" meant or what c-reactive protein is, someone always was ready, willing and able to explain it to me. While I was going through the testing phase any medical questions I had (usually via email) were answered in a timely fashion (usually by phone!) and detailed enough that I wasn't left with more questions. It sounds simple but it doesn't always happen that way in life.

So there you have it. There is a whole lot of good in Living Donation and the program in southern Alberta..

Impressions

As some of you know, I've always been a big participator in the online universe. That's part of why blogging was such a natural solution for me to document my journey to become a living kidney donor. I've been able to be open and candid about things involved with the process in ways I don't think I would have been in "real life".

I've always written this blog for me, and also for my friends and family. If others stumbled across it-great-but it wasn't the driving force behind my writing at the start. It was only really once Global TV contacted me and my blogging (and anything else "social media" or traditional media) was put on hold back in January that I realized fully the impact I could have (had) on raising awareness about living donation. It's something I am still committed to and passionate about.

I was reflecting the other day about how to measure my success at this-how will I feel like I've done "my part" in this. I was looking at my analytics looking for something that would tell me I was making some kind of a difference but I just wasn't finding it.  I went back and re-read some of my old posts, from back around the time where I was starting to really become an advocate of the living donor process. At the time, I said I would be happy even if a handful of people became aware that it was a possibility whether or not they donated. And then it hit me-I've already done that.

I have a bit of a confession. I didn't entirely stop using social media to talk about my plans to donate prior to my kidney donation surgery. I didn't blog (that was far too public and definitely against what we thought the rules were). But sometime in the spring I cracked and started to hint at things via Facebook. I was often cryptic and was mindful not to give too many details (although my account is locked down with strong privacy settings). It was enough sharing that I felt like my family and friends knew what was going on, I had some support and I wasn't totally offside on the rules. What it also did was set the stage for something pretty cool to happen.

In the marketing world we often talk about "impressions"-the number of people who may have seen or heard the message you are trying to convey, consciously or subconsciously. It's kind of a hard thing to measure but there is a value to it. The night before my surgery  three of my friends (with no overlapping friends other than me and no connection to one another) on Facebook made a point of posting what I was about to do as their status. I did the math-this meant that upwards of 1500 impressions (their friends) may have been made about the possibility of living organ donation. I know at least 50 actively became aware because of the comments and "likes" they shared.  1500 people across Canada and even parts of Europe and Asia (as one of those friends is travelling abroad for a year). That's a lot of people.


I still don't feel like I'm done with this yet. I want to do more for donor advocacy and awareness. I hope I can be of help in some way to the program at Foothills (or even Alberta as a whole...or Canada?!?). Yet again I am amazed at the power of social media for spreading information in a way I never would have been able to do even ten years ago as a regular, everyday average person. Pretty cool.

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!).

Twelve Hours of Happy Dances

They all went a little something like this (bootie included)
...well as much as I could post-major surgery

I cleared one of the final hurdles on day three post kidney donation-I ate regular food for dinner. It was classified as "surgical" (the lady who delivered the food warned me that would be what I was getting). I was a little afraid what that would mean but was pleasantly surprised. It was a whole wheat turkey sandwich, some kind of noodle beef soup, green beans and apple-sauce for dessert. Much like my wonderful shower earlier in the day, under the circumstances it was one of the best meals I could hope for. I was very careful as per the doctors to take it easy. I would eat a quarter of the sandwich and then pace the room a bit (it was cut up that way-kind of made me feel like I was 10 in a good way). I'd then have a bit of soup and walk around some more, giving my body time to adjust to what I was ingesting and make sure I wasn't going to have any adverse side effects. None of those seemed to be occurring so I kept going. When I decided I was done, I had eaten 3/4 of the sandwich, all the good stuff out of the soup, the beans and the apple-sauce. A happy dance ensued. I only had one more thing to check off the list of "to dos" to be released from hospital.

About 3am the following morning I woke up feeling a bit gassy.  I walked around my room a bit and realized I was ready to check the last thing off my list-a number two.

A friend of mine has twin toddlers and has been going through the wonders & challenges of potty training over the last few months, doing all the recommended things parents do like cheering her kids on when they do what they need to do where they are supposed to do it. I appreciate this moment for me was in no way nearly nearly as momentous and life changing as those moments are for my friend. However I couldn't help but think of her (sorry Sarah) as I cheered myself on ("YAY LAUREN-good for you!") out loud, in the middle-of-the-night night-lighted darkness of my washroom. Another happy dance.

I knew as soon as I had real food (not involving Jello) that I'd be able to "make it happen". I know myself and how my body works. I am sure I had the "I told you so" look on my face the next morning when Doctorpalooza asked me if I had done that yet. I answered yes (probably too enthusiastically) to that and all their other questions (including what had been for dinner and was it any good).  They all stared at me, smiling for a few minutes as I impatiently stared back at them, Finally Dr Y and Dr S laughed (I'm pretty sure it was at me).

Dr. S asked "Would you like to go home?"

Happy Dance.

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.