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

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.

An Open Letter to Canadian Blood Services

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

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January 15, 2011

Dear Canadian Blood Services;

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

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

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

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

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

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

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

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

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

Sincerely,

A potential kidney donor