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.

The Surgery

A rough idea of the table

Obviously I was asleep for this part of the story (and I recall having some really good dreams-it didnt seem like I was asleep that long). I'm about to get a little nerdy and borrow heavily from the internet as to what occurred when I was asleep. It's too bad I don't have access to the fancy doctor site Dr. S showed me because it was clear and concise in its explanations. I'll try to simplify some of the surgery highlights. There is also a video here "not-so faint of heart". I haven't watched it yet but I am sure its interesting. It's important to remember that the steps involved in the surgery are plus or minus what is done, but that at various stages every surgeon would do things a little differently. Even the incision points can vary.

The Surgery

A warming blanket is placed on the patient to maintain core body temperature. The patient is positioned carefully for optimal surgical exposure (in this case on my right side and the bed itself curves-see photo), and IV antibiotics are given prior to surgical incision. IV hydration is critical to optimize blood flow to the remaining kidney; so normal saline is administered to maintain adequate hydration. A cathedar is inserted and urine output  is carefully monitored.

In my case, two small ports were used-oner in the upper abdomen and the other in the lower abdomen, closer to hip level. A third, longer incision about 6-7cm long was made about 1cm to the left of my navel. They pump your abdomen full of CO2 to create more working space (pciture your belly growing to about the size of a 5-6 month pregnant woman).

The left-sided approach avoids the need for liver retraction and often provides a longer renal artery and vein (so its easier-they have more to work with). They basically get the kidney to a point where it is easily accessible. And then they pause. Using the laproscopic equipment, they move the other surrounding organs "out of the way" tying them back somewhat (the spleen, the colon and any other nearby friends).

Dr. S told me that at that point they put me on hold for a bit-upwards of an hour. The recipient would be in a likely adjoining room. Their surgeon(s) begin the process of getting their patient ready to receive the kidney. Truthfully I am not sure what is involved there. The reason for the pause for the donor at this point is that they need to make sure while doing the preparations on the recipient , no other medical/surgical issues arise that would put the transplant in jeopardy. For example if the patient is reacting badly to the anaesthesia or is having heart issues, they don't want to take my kidney out and then not have the ability to complete the transplant. So they get me ready, then get that person ready, assess everyone is doing okay and then take the donor kidney.

Once the go ahead is given, the donor surgeon works to detach the kidney from things like the adrenal gland, the bladder and eventually the renal vein and artery (in my case I just had one of each so it was easy-peasy and "unremarkable" according to Dr. Y). A special vascular stapler is used, freeing the kidney for removal.

It basically sounds like they then insert a bag using the scope into the larger incision at my navel-the bag springs open, they scoop up the kidney and pop it out, all contained in the bag. I assume at that point they put it in some kind of container and take it over to the recipients operating room where the rest of the magic happens.

At that point they check for bleeding and using dissolving sutures/stitches close up the small ports and the larger incision. On the surface they use steri-strips (aka butterfly stitches) which are essentially little pieces of tape that hold small wounds/incisions together as they heal.

After that, the patient is moved from the table back to their hospital bed (this is where I woke up-I remember it pretty clearly) and off they go to the recovery room. There a nurse monitors the patients vitals, administers pain medicine if needed (it was but not terribly). In my case, she reminded me to keep breathing a few times, but not the "special fancy yoga breathing people do these days". At first I didnt really like her-she seemed kind of gruff but after awhile I realized it was more that she was trying to make sure I was okay and that you have to sound gruff when you are reminding people to keep breathing.

The pain, as I mentioned, was definitely there but not horrific. It was more discomfort-an achy pull on my left side. The upper small incision hurt the mist. My stomach felt bloated and looked large. I wasn't in a ton of pain unless I had to move. Case in point, my favourite part of the recovery room was when they needed to do a portable chest x-ray which involved sitting up straight so they could get a panel behind me while I was half asleep. Even with one or two people helping get me up, it really sucked. My abs raged at me. It was thankfully over in no time and once I was back lying down the pain subsided. I am not sure if the x-ray is standard or if they had a particular concern with me. I know they want to be sure your lungs don't collapse because of pressure on your diaphram from the gas they pump in. Anyway one thing I did find very helpful with the pain were warm blankets they put on my stomach-a definite must have for anyone getting abdominal surgery.

Overtime I became more alert although I was still struggling to stay awake. Every time I'd glance at my recovery nurse she'd ask what I needed. I told her I was just looking at her and she told me she is there to watch me not the other way around. I think I called her a lurker. She at least laughed at that. Soon thereafter she made a comment that I was ready to go back to my room and that they needed to make room as there were a "lot of kidney flying around today). They moved me to a different part of the room to wait for purple porters. The nurse did one last check to see if I needed anything. I said I didn't. She smiled, adjusted my pillow a bit, leaned over and whispered "You did a really wonderful thing you know". 

 I thanked her and fell asleep.

Surgery Day-Time to Go Under

I waited in the "holding pen" outside the operating rooms for awhile before anything new happened.  It was pretty quiet excpet for the occasional murmur of a patient to their family member or when my IV would start to beep. I figured out quickly if I put my arm on my stomach vs flat on my side it would do that and the whole room of blurry faces would look at me. About 10 minutes after my purple porters left, another pair of purple porters brought in a patient (in a bed!), maybe a bit younger than me who was sobbing and quite distraught. I assume because of her emotional state, she had two family members with her. It definitely changed the mood of the room as people around them struggled to not look. Everyone got a lot more quiet. I realized in looking around that aside from the man who questioned my bed arrival, everyone else in the room had a spouse, a mother or a daughter with them. It made me feel lonely and I was kind of mad at myself for not insisting Christian be there or asking my Mom to find a way to fly out for the week.

It seemed like 7:30 was the magic time as suddenly it stopped being a room full of patients waiting and became a frenzy of surgeons, anesthesiologists and nurses rotating in and out. It was a little weird to me that I could listen in and know exactly what everyone else in the room was having done, from gall bladder removal to tendinitis repair. I knew peoples' names, dates of birth and in most cases, the names of the people with them - not something you are used to in this day of privacy sensitivity. I guess they assume whatever drugs you'll get will make you forget what you heard?

My anesthesiologist came along first. She had a series of routine questions-some pertaining to the anesthesia and some of the standard health ones I've been asked a trillion times. She at least had a sense of humour to acknowledge that. She asked me what I was having done. I kind of giggled because I knew I probably wasn't supposed to say out loud what it was and that she wasn't supposed to ask. It actually felt good to say it out loud instead of being the dirty secret it had been for the last 24 hours. No sooner did she go than I saw a vaguely familiar blurred face. It was Dr Y. He just came over, patted my hand and said hello. Thankfully no more questions. He asked if I had any - of course I didn't so he patted my arm again and told me he'd see me in there. A  little while later an OR nurse came to introduce herself. She apparently knew the top-secret-drill so she pointed to a document on a clip board and said "is this what you are having done" and raised a finger to her lips as though to remind me it was a secret. I laughed and said "I guess so but I have no idea what you are holding up". She pointed again at one line-the document somewhat resembled the consent form I signed the day before but I still couldn't tell what she was pointing to. I explained I was as blind as a bat without my glasses or contacts. She got a little flustered...it was kind of like watching an odd game of charades - I could tell she wanted to blurt it out but couldn't. She thrust the clipboard right in my face and I said yes, that's what I'm doing. She sighed with relief. Who knew my crappy vision could almost wreck the whole anonymity scheme!

The nurse started to push my tank of a bed towards the hallway leading to the OR. I think the bed and I weighed about 4 times what she did.  She got some help from another worker and pushed me the last 10 ft to the outside of the OR. We quickly all realized (at about the same moment) the new beds from McCaig are too wide to negotiate the sharp turn from the hallway into the OR door. Bump bump bump we went against the door frame. The anesthesiologist looked on curiously from the room. "You know..." I started. The nurse finished my thought "You could maybe get out of the bed and walk into the OR?". The anesthesiologist laughed and said "she's the healthiest patient in the hospital right now - I think she can". So that's exactly what we did. Bum hanging out and all with the IV in tow, I jumped off the bed, walked 8 ft and climbed onto the operating table.

I settled in an looked around.  I was surprised how small the room was and how much "stuff" was in it. Carts of supplies, a ton of equipment...it just seemed cluttered. I watched people buzz around me, checking wires, hooking me up to machines. They had to start an new IV as the other one had failed so they set to work on that. They seemed anxious to have Dr. Y come back and do some kind of protocol briefing speech about what we were all doing there. Suddenly he appeared, did the speech, pulled my gown over a bit and drew a mark on the left side of the abdomen-either a smiley or a Y, they weren't sure.

The anesthesiologist let me know she'd be giving me stuff to make me relax in a couple of minutes. And that is when I panicked. A little part of me wanted to stand up and run out of there. What the hell was I doing? What was I thinking? I was scared, I was worried and suddenly very uncertain of my choice. I took a few deep breaths and tried to remind myself that this was a good thing and that I would be fine. And that whatever was going to happen, would. I had to trust these people. She put the mask over my face and told me to breath normally. I waited a few minutes for the part where I was supposed to count to 100 - it didn't come.

I don't even remember falling asleep.