Thursday, July 7, 2011

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.

1 comment:

  1. This is absolutely awful what happened to you! I can't believe it! I can't compare my experience being a non-directed donor with yours, because I was in a different hospital..they transported my kidney 50 km to the waiting recipient. How hard this must have been for you!