Now What? Life After Kidney Donation

When you are going through all the testing, pokes and prods and evaluations prior to becoming a living kidney donor, one of the warnings you get about the after effects of donation is that you might feel "let down" when its all over. Some people feel sad (even if everything goes really well). Some describe it as an empty feeling-and not in the physical sense. In some case people actually become depressed and need extra medical attention-although this is rare (so don't worry!). The feelings might happen right after surgery-or they can show up weeks after.

For me, I clearly remember waking up the day after surgery thinking "now what"? That uncertainty would continue for weeks and has to an extent stuck around. There was a bit of emptiness and not because there was a small cavity in my abdomen where Leftie had resided. I wasn't sad but I did feel a little lost. Okay, a lot lost. I had spent over eight months thinking almost constantly about my choice to donate my kidney. I had felt every emotion imaginable, from the highs of passing a tough medical exam to the lows of run ins with a few impersonal medical professionals. I had been excited; I had been stressed. I had been scared. I had spent countless yoga classes, bubble baths and sleepless nights visualizing how the surgery was going to go and how I'd get myself through the recovery. I had written blog posts, shared my feelings and ideas with whoever would listen. I had made lists and checked them more than twice in order to be prepared for the time off I would need. But it seemed like it was all over. So now what?


Of course this is all very "normal". Some people liken it to the experience of “post-partum blues” or emotional let down after the birth of a baby. Pregnancy (I would guess) is much like living kidney donation in that something big from a biologic perspective is going to happen. There is anticipation over the course of months which builds expectations in the new mother or, in my case, the kidney donor. With the birth of the child or the removal of the kidney, the process is over.  Except with a baby, you have...well a baby, and a whole new set of expectations and things to look forward to, experience etc. Kidney not so much. It just seems kind of ... over - and so suddenly at that. Even though I had always planned to continue to be a promoter of Living donation and still wanted to do what I could to make the process better, it still felt like I was coming to the end of something. And I felt a strong need (desperation?) to have the "next steps" figured out, like what I had already done wasn't enough and I wasn't "finished".

Today I went to an industry breakfast and the speaker was Canadian Olympic Gymnast Kyle Shewfelt (who by the way is an awesome guy). He spoke about the moment he was on the gold medal podium in 2004. After years and years of training and competing, he was finally realizing an enormous, life impacting dream. And as he received his medal, all he could think about was "Now what? What is next?". He said in hindsight he really cheated himself. He didn't allow himself to have that moment, to stop and be present for it. He was hung up in that empty feeling where that goal used to be and felt lost for a good deal of time afterwards. Listening to his story was a real "a ha" moment for me.

Not the same as Olympic Gold
but still pretty cool

While by no means am I likening my experience of a few medical tests and soul searching to training for the Olympics or my "Organ Donation" medal to the real deal gold medal kind, hearing his story really gave me some perspective that I wished I had had prior to the surgery. I think as an organ donor you need to be ready for the "lost feeling" and prepare yourself for that. But you also need to give yourself time to stop and appreciate what you have accomplished by donating. Despite the fact that I helped one person, I got hung up on the fact so  many other people still need help and that awareness is so low/ I've been hung up since the surgery on how I only have an average of 100 hits to my blog a day instead of celebrating the fact I have probably influenced at least 100 people in my travels who are now aware of living donation and have let others know about it too.

It's important to have goals-and believe me, I am not done with this living donation promotion stuff. But you have to allow yourself to feel the "wins" along the way-that's just as important.Success is not about being the best. It's about being YOUR best. And doing the best YOU can.

Phantom Pain

Brain: "Ummm...where did Leftie
go? I have work for him to do!"

You may have heard about phantom pain or sensations in relation to amputees. Basically, even though an arm or leg is gone, the person can still feel pain or discomfort as though it were still part of the body. What you may not have known is that this can also happen with a missing organ. Yes, I have experienced this where Leftie the kidney used to be.

As with most things medical, the sensation varies from individual to individual. It can ache, burn, feel cold, throb, tingle--any kind of pain/feeling really.  For me its a sharp pang, towards my back that aches a little into the surrounding area. Sometimes it is a sharper pain closer to the front, between two incisions. Nothing terrible but something I didn't have before the surgery. For me it can occur when I am doing nothing at all (watching TV, sitting in a meeting). It also happens sometimes when I am doing something a little more taxing like running or eating food that might not be the best idea (think deliciously good salty deep fried items with or without a beer). On occasion I know I've had them when I've been dehydrated. It is more annoying than it is painful-discomfort more than anything. A donor friend of mine told me that for a few months post surgery she would get phantom pains after eating french fries or drinking a glass of wine. Of course, not everyone experiences this but it is interesting to understand what is going on so that some of use do.

Nerdy science types would argue that technically, all sensation from internal organs is "phantom pain." This is because the nerves supplying the internal organs form plexuses (which are more like spider webs instead of straight wires like the nerves in our limbs). They travel a good and less direct distance before joining with the spinal cord which then of course leads to the communication with your brain and the feeling of pain. That's why when we have real organ pain we feel it in other areas (also know as referred pain). People having a heart attack often feel pain in their left arm, and when ladies are blessed with time of the month cramps, they can experience back or upper leg aches. Check out this video to show you the "other places" you might feel organ pain.

Phantom pain can occur from right after surgery. For some people it might continue for a few weeks or months. Many amputees report feeling phantom sensations for years after their injuries. Again, everyone is different. Why does it happen? In the early days, scientists thought they might be caused by neuromas in the tip where the organ or limb was lost by surgery. Neuromas are a cluster or clump of nerve tissue that are a result of surgery. While they were on to something and they CAN be a cause for phantom pain, they aren't the only thing to blame. They know this because sometimes people born missing a limb or organ feel phantom pains too-so its not just about surgery side effects. They haven't quite figured out all of the causes or how phantom pain works. In my head I just picture the brain not really being aware something is missing and it keeps sending out commands, communications-when the message gets to the assigned location, nothing is there so it kind of sparks or shorts, like a live wire, causing pain. Not very scientific I know, but that's my explanation (and it works for me-remember-I am not a doctor!).

Most people just put up with the pain as for many it does go away with time. In some cases, pain medication is prescribed and in very rare situations surgery is done either to remove neuromas (which can help) or in very extreme cases, brain surgery might be involved. Those last two examples only happen if the pain is debilitating and goes on for very long periods of time without improvement or response to other treatments.

I've been trying to focus on what I am doing or what I've just done when I get my "Phantom Leftie" pains. While they aren't overly disruptive, they have been a good physical reminder to watch what I eat and drink, and make sure I am exercising appropriately.

The mind/body relationship is a very mysterious thing isn't it?

Leftie Love & Fundraising

Late Monday night I sent out an email to friends, family and coworkers (and a post to Facebook) explaining that I was looking to raise money for the upcoming Kidney March, and if I could raise closer to $2200 instead of the $300 needed to crew the event, I would walk 100KM.

In less than 24 hours, I have been sponsored over $800. Many of the pledges came from people I wasn't expecting to step forward. People I was hoping for "a little love" from came forward with overwhelming generosity-way more than "a little love". I'm committed now to raising the rest of the money required for me to be a marcher. The people have spoken-they think I can do this and I am going to do my best to not let them down.What was most awesome was people who chose to leave comments on my donation page. So many donated not just in support of me, but in "Honour of Leftie".

Someone made the comment to me that I need to not ask people for money, I need to "shut up" about the organ "thing" and stop all of this. I know that for some people times are tough. It seems like daily we are hearing of another country getting a massive financial bailout or needing emergency  assistance. While things are stable and actually looking pretty good in Canada, we'd be foolish to not expect some impact from these other nations and their financial difficulties. I understand not everyone can help me out but I have to ask. I'm not one to jump from cause to cause and I don't get on my soapbox about much (publicly anyway). This is important to me-it's been a big year for me and I want to see it through. Realistically I can't do this every year (especially the kidney donation part!) but given everything that has happened, it makes sense for me to do the march in 2011.

So here is hoping I can come up with more sponsors and make this a reality!

28 Days

I'm currently taking part in a social experiment/challenge that involves 28 days of good deeds. I was told in jest by a few of my friends that I really don't need to do such a challenge-the "kidney thing" should make me exempt from "needing" to do anything good for awhile. But I thought it would be something interesting to try-I think most people could stand to stop and think about their day to day behaviour a little more. Most of us are good people but we don't always stop to think about others and how the smallest gestures can turn someone's day around. I'm on day 8 of the challenge and I can honestly say making a conscious effort to do something nice for someone else EVERYDAY is harder than it looks/sounds. It's about taking the high road and/or opportunity spotting and/or putting in extra effort. EVERYDAY.

I was on the receiving end of a random good deed over the weekend and it really put things into perspective for me. I've signed up to be crew for the upcoming Kidney March here in Alberta. Ideally I'd have liked to march but I'd need to raise $2000 in the next few weeks to be able to walk it (you don't get donation credits for kidneys I'm afraid.) To crew it's $300 plus the registration fee I've already paid. So I'm shooting for the $300, aiming for the $2000 if I get lucky. I hate asking for sponsors for events. Especially this because it is a lot of money (if I were to walk the event). I did do a blog post about it a) to promote the Kidney March in general because I think it's an awesome and inspiring event and b) because I do need some help with sponsorship. Within a couple of hours of my post, I had my first donation-from a complete stranger. I've never met her but she's someone whose life has been impacted by kidney disease. She herself is flying in from across the country for the Kidney March and is attempting to raise money for her own participation. But she read my blog and took the time to pledge me.

I was overwhelmed by her generosity towards someone she didn't even know. It made my day and actually brought me to tears. It wasn't about the money-it was about the random act of kindness, a show of support for another human being. When I thanked her she told me she donated it because of my choice to give my kidney to a stranger. "Lauren, if I could donate the full $2200, I would, just so I could walk beside you".

I am humbled. And even more resolved to not only do some great things with what is left of the 28 day challenge, but continue to pay it forward. Good deeds go beyond the days you do them...they leave a legacy that fuels people to do better, to try harder, to fight when they are feeling like they need to give up. I really think when you are on the receiving end of an act of kindness it makes you a better person. Which is pretty powerful.

Because that's what kindness is.  It's not doing something for someone else because they can't, but because you can.  ~Andrew Iskander

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.