January 11, 2012
Got a call from Michael today – they are having a meeting on Tuesday to firm up dates, but as of now February 28 or 29 looks like a go. I am freaking out a little – things are starting to seem very real and the idea of surgery is scaring me in more of a vivid way – but it is manageable. I went rock climbing today so I’m exhausted, that might be helping with the anxiety. I am extremely worried about pain. Started doing some research online then stopped when I realized it wasn’t helping. I know I’ll be alright, but I’m such a wimp when it comes to pain. Paper cuts freak me out.
Everything on the way home today was beautiful. The sunset was enough to make me cry. Doesn’t take much these days … I am at a loss for words to explain the way I am seeing the world right now. Everything is vivid and meaningful. I am listening to a lot of heavy/dreamy/emotional music and feeling it course through me like I have ears in my blood. It’s like someone told me today “you have 7 weeks to live”. I do realize how irrational that is, but that’s how I feel.
I have no desire to watch television, I don’t want to waste one minute!
January 16, 2012
I took a couple of days off work, because I was starting to get stressed in an intense way. I had to be honest with myself about how I was feeling. I want to make sure I’m being safe. I am not 100% sure what is causing me to freak out. I feel like the pain is the main thing that I’m worried about. When I asked for Friday off, my supervisors told me flat out they don’t think I’m ready for this to happen. I tried to explain to them that this is just part of my journey, and I have to get through it. They said I need to take a time out to come to a place of acceptance. I consider myself extremely lucky to have such an understanding group of people to work with, such a wonderful group of people who aren’t afraid to give it to me straight-up because they care about me. I didn’t totally agree with what they said, but I tried to be open to it. I tried to take it in and really process what they were telling me. I took Friday and Monday off. It is now Monday evening. I did my best to book myself into a spa this weekend, unfortunately they were all booked up. So, I ended up splitting the weekend between watching a lot of inspiring and emotional movies, and trying to get stuff done that I never have the chance to do. This seemed to help. "The Diving Bell and the Butterfly" was amazing. This film serves as a good reminder of the things we take for granted every day, and the triumph of the human spirit. And watching "The Cave of Forgotten Dreams" really made me examine what it means to be human. I know they are just films but they are almost meditative in their nature, they make you think and feel.
I went climbing today. Exercise seems to help, especially when it’s focused. I feel good now, but it seems to come and go. Like a freak-out tide. Makes me question my emotional stability a little bit. I don’t like having to lean on people. I don’t like asking for help. Sometimes you just have to.
January 21, 2012
I am consistently moved by the level of support I have received from my parents since making the decision to donate a kidney. I just read an email from my Dad. It amazes me how he always knows just how to make me feel better. Maybe when I have kids I will understand how that works. Both of my parents have been nothing but helpful and one hundred percent supportive throughout this entire process. It is such a gift to have such amazing parents. They are both strong, positive, wonderful people and great role models.
January 28, 2012
I have had a week of good decisions and positive experiences.
I am happy to report that I finally have a piece of paper that states a surgery date of March 1st (albeit still a slightly tentative one – could move around a day or two). I am sending out a big “THANK YOU!” to my transplant coordinator, Michael, who has endured endless phone calls asking when such a document might come into my possession. I submitted a request for time off, letter attached, and my supervisor told me just as I was on my way out the door on Friday that he is 99.9% sure it will be approved. What a relief to hear that on a Friday! I don’t have to spend my weekend on pins and needles.
I also had really nice surprise this week from one of my passengers. This person made a point of writing in about me, which is always so nice. It’s a great thing to be reassured you are doing a good job. No matter how well you know you’re doing, having someone else tell you can make you feel so much better. This passenger went out of their way to tell me that they think I am special. They had no idea how much I needed to hear that on that particular day, as my self-doubt had got the better of me. The kindness of strangers can be so moving, and for me it always seems to come to me at just the right moment.
Today I attended a yoga class I don’t normally take, and as luck would have it one of my favourite teachers was teaching it. I feel such a positive energy when I walk into one of her classes, it radiates from her and it’s fantastic! She puts me at ease, and in doing so creates space for me to live in the moment I’m in completely. To really listen to myself and explore who I am and how I’m feeling. Sometimes we miss those little messages we are sending ourselves, they get lost in the bigger noise around us.
I think somewhere along the line the human race lost touch with the power of the earth, and its endless cycle of energy. We lost some kind of connection that, I think, is integral to understanding ourselves. The connection between all living things. Today I would like to think I felt a bit of that connection, in a “tip of the iceberg” kind of way.
February 1, 2012
Over the past few days I have settled back into a routine of making lists and doing housework. I am doing a lot of planning and focusing on what needs to be done before the big day. I am decidedly excited with a pinch of nervousness, but I have found myself lately in an overall place of calmness. I am resolute in my decision, and I find when people try to dissuade me or express their concern for me I take it as the perfect opportunity to educate someone on why I am making this decision and why it is so important to me. I want to help other people, I want to make someone’s life better. Possibly even save a life. The amount of pain I will suffer will be insignificant compared to the gift that I am giving another human being. It is so important to me that I live my life fully and use it wisely. If I have two of something and someone else needs one to live, I am more than happy to give one up even if it means I will be in pain for a short amount of time.
I am hoping to get the word out about organ donation (living and non-living). It’s a subject that might be difficult to talk about, but I think it’s something that every family should discuss. The decision to be a donor, living or non-living, might not be for everyone. If more people were open about it, though, and gave it some thought, perhaps we wouldn’t have a shortage of organs available to those who need them. Unfortunately, it seems we only think of these things when we are directly affected.
While it’s not a decision to be made lightly, it is definitely something for everyone to think about. And it’s not as though it can’t be tailored to you. It’s not an “all or nothing” situation. You can choose which organs you would like to donate. I realize this is a morbid kind of discussion, deciding what should happen to your body if you die, but I think it’s still a very important discussion to have with yourself and the people you care about.
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You can register to be an organ donor in Ontario by clicking *here*
(Much easier than filling out and mailing those cards you get when you renew your license!)
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February 3, 2012
Got an email from Michael yesterday (finally!) and had a really great phone call today with Sherry (Michael’s assistant). I was starting to get frustrated with the lack of information coming my way from the transplant team. I know they are doing their best and they are extremely busy, but having to plan around loosely based dates and estimations is not something I feel comfortable with. Especially when having to travel so far. I’m a little out of my comfort zone here, so planning is one of the things I rely on to help me feel better.
The information I received was that they will speak with the hospital in Montreal on Monday and confirm appointments for me to attend pre-op. Sherry said the operation would most likely take place on February 28th … and to plan around that date. So I called Dad and he seemed more than a little relieved that he finally had something at least semi-final to go on.
I’d like to point out that everyone on the transplant team has been nothing but awesome so far. They really are going above and beyond, and the lack of information stems mostly from this being an out of Province surgery. Different guidelines, and Montreal being fairly new to inter-Provincial transplants, have a lot to do with the seemingly sluggish reactions to my questions. As long as I get enough information to book a hotel, etc. I’m fine. I want to make sure I’m there on the right day at least!
Overall I’m feeling positive and upbeat. I’m trying to strengthen my core muscles as much as I can in preparation for surgery. Core strength has never been something I’ve been good at, but I’m trying. I’m trying to eat well and get in lots of exercise. I feel better than I ever have, which is a huge plus. It’s amazing what changing your habits can do for your body and your mind. I now realize what they’re talking about when they say “high on life” … it’s so true! I’m daydreaming about all the things I want to do and the experiences I want to have when I recover. I want to see the world. I want to experience it, and live every minute of my life to its fullest potential. I want to be able to look back on my life and say … wow I did all of this I’m so happy to be alive!
February 15, 2012
Just got over being ill for a little over a week. Not fun. Getting sick so close to the surgery date was not an easy thing to deal with. Very stressful. In addition to that I’m dealing with a low thyroid, but my fantastic endocrinologist (he really is amazing!) says we can handle it. He is going above and beyond to make sure I’m ok.
They took about 16 vials of blood (give or take a couple - I tried to count but got squeamish) on Monday to send off to Montreal. I always get nervous when they do tests. Even though I already know the results, and I have already done these tests, I always wait by the phone with baited breath until someone tells me “everything was fine – stop worrying!” It’s hard not to worry when your life has been revolving around something for so long. When there has been a two year lead up to this very event. When there are 4 other pairs of people and someone you know and love involved. I’m a pretty good worrier even when I have nothing to worry about, let alone when I do!
Aside from that, I am starting to feel I’m closer to having my paperwork in order and I’m trying to schedule a lot of outings with friends. Making sure I write people little notes to say thanks for all your help and encouragement, stuff like that. It really is crunch time. T minus 16 days! I really wish Montreal would send me some kind of itinerary so I would know when to be at the hospital and who I’m supposed to see. I realize it’s hard to schedule these things but I need to schedule too and I am a little frustrated with the lack of information coming my way. I know I need to be there on the 28th, and I know surgery is on March 2nd … but what happens in between? Who do I see? Do I have appointments? Argh! I’m a planner, people. Information is like my security blanket, it makes me feel better. It’s comforting and makes me feel like things are happening. I am still learning the value of patience. I know it’s a virtue, but it’s one that I missed somewhere along the line.
February 18, 2012
Well, my patience (or lack thereof) paid off! I received a letter yesterday with my itinerary for Montreal. What a relief. Along with it came the contact information for the Transplant Coordinator in Montreal, who seems like a lovely person. She was kind and patient on the phone, and seemed very genuine.
Also – Friday was my last day of work before going on leave. I filled out my E.I. forms online and have now started to realize I don’t have to go to work for 2 months. I don’t have to work for 2 MONTHS! YAY!! This is very exciting. I realize that part of that two months will be painful, BUT - I get to help save people’s lives and I don’t have to work for 2 whole months!! Yes!
Being a bus driver is very stressful, more stressful than a lot of
people think about. When you are driving a very large vehicle full of
precious cargo (people) down a highway at high speeds, you want to make
sure you know how to manage your stress. There is virtually zero margin
for error. Don’t get me wrong, it can be very rewarding. The people I
meet are so interesting, and from so many walks of life. I love meeting
new people and hearing their stories. I have regular passengers who
genuinely care about me. It’s a very humbling experience to have someone
tell you that you made their day in some way. Yesterday I made a point
of letting some of my regular passengers know what I was up to and when I
would be back. There were lots of hugs (and a couple of tears) it was
all very moving.
That said, yesterday was a pretty tense day. I have been
experiencing some signs of stress that are difficult to deal with, and I
think it’s important to mention them. I think part of it has to do with
the fact that I have been sick lately, and part of me being sick is
having plugged ears (which is stressful in and of itself). They are
still plugged but I have been told this is something that should correct
itself and might take some time, so I’m just trying to deal with it
even though it's extremely distracting.
I can honestly say I wish I had taken a full two weeks prior to surgery, especially since I will be travelling. The stress of my job, trying to schedule things, and the stress of the “unknown” of surgery has pushed my stress level to the point where I’m not really comfortable with it. I am starting to get short with people, which is really not like me, and I don’t like the way my body and mind are reacting.
I don’t like being in a negative head-space. I’m a very positive person. I think what I need is a bit of an escape. I think for anyone going through something like this, getting away from it all and being able to take a break from the routine of worries is a healthy thing to do. I am going to my best friend’s place tonight to eat some delicious food and watch funny movies and generally have an awesome time.
February 21, 2012
I got a very moving email from Jackie yesterday. She is a wonderful human being, and I feel so lucky to have her as part of my support system through this process. She is truly a gift.
I find since I fell ill for the last week or so, when I’m very tired I tend to get a bit negative about things. Making sure I am getting enough sleep and listening to what my mind and body are telling me is very important right now. The doctor had given me some Ativan for stress. I took one, and it did help in that moment of distress … but then I decided to try and work through things on my own. You can’t cure something until you really figure out what the problem is and process it. Drugs for stress can work well if you’re desperate or in a pinch, but I find it’s better to really meditate on what the core issue is and try to fix that rather than relying on a “mental band-aid”. Just popping a pill (in my opinion – this may not be the same for everyone) doesn’t fix anything. Ignoring a problem doesn’t make it go away.
I have been surrounding myself with a force-field of positivity and awesome people. Talking to the people who mean the most to me, people who have shaped who I am throughout my life and making sure I stay in touch with positive influences was integral to me shaking a bit of this negativity away. Don’t get me wrong, sometimes we all get depressed or angry or scared … that’s normal. It’s ok to be all of those things sometimes, it’s only human. I think it’s how you react, how you deal with feeling that way, that’s the important part. It helps you get to know yourself, and become a stronger you when you can work through stuff like that. I guess that’s all part of learning who you are, and growing and changing as a person. Live and learn.
February 27, 2012
So much has happened in the last week or so. I learned my thyroid level was very, very low last Thursday. My endocrinologist called the transplant coordinator during my appointment, and informed me that things were going to have to be delayed. Thinking I was going to delay everyone was incredibly upsetting. I don’t want to be the reason people have to wait for a kidney.
Imagine my horror when I got home and received a call from Michael (our transplant coordinator) saying he felt it was best to pull us from the chain altogether. This was devastating. This was my absolute worst nightmare; to have this all fall apart and be my fault. I was not about to accept defeat when what was wrong with me could be so easily fixed. I asked Michael to please consider just delaying my surgery. At least that way it would not affect the whole chain, and Lynda would still be able to get a kidney. If they were to drop us from the chain not only would it affect everyone else in the 4 other pairs from our chain, but Lynda and I would be put back into the waiting game of being thrown back into the paired exchange registry. I couldn’t face another year of waiting … I just couldn’t. Not for something that is so easily corrected. My thyroid is naturally hyperactive, all I had to do was stop taking medication and wait for it to go back up!
Michael said he would put our case forward to the transplant teams, and it wasn’t really up to him but he would see what they said. Normally they want all surgeries to be within a day or so of each other. I guess they have to coordinate things so no one can back out and leave someone kidney-less. There was a very intense day of waiting on Friday, then Friday evening we got the call at around 4pm … everything is still a go! I can’t begin to express the sense of relief that phone call brought. My surgery will be slightly delayed (they are now waiting for my doctor to give them the thumbs up) but all others will go ahead as planned.
Now I can breathe. Thank goodness. I can’t imagine what I would have done if after 2 years of testing and waiting and planning all of this fell apart and we had to play the waiting game again. I can’t imagine. I am so glad we are still in this. Lynda has her surgery today. This is what we have been waiting for, for so long. So, so long.
March 1, 2012
I’m finally starting to feel better. I ended up getting strep throat, but it seems to be completely gone at this point. I will be on these horrible poison antibiotics for only two more days. My thyroid is at “normal”. My strength is coming back.
Lynda had her surgery and everything went well. Her new kidney is doing great! I spoke to her on the phone today. Her voice sounded so strong. Even just two days after surgery, she sounded so positive. I can only hope to be so strong through my recovery. What a lady!
I can’t wait for my surgery date. I can’t wait to be part of this amazing thing, this wonderful process where people help each other. There is something beautiful and moving about knowing you have helped someone. Right now I feel like I haven’t really played my part yet. I feel like I want to remind the transplant team every day that I’m still in this. I’m still here! I just need the ok from my doctor. I have an appointment next Wednesday. It seems like an eternity away.
March 12, 2012
Well, it looks as though I have been lax in my writing. Exciting things have happened and I haven’t even opened my laptop to write about them! Bad me! Maybe this was a subconscious way of living in the moment and not thinking about doing anything other than getting better and focusing on the task at hand. Who knows … either way an update is in order.
My thyroid levels are still at “normal”, hooray! Last week my doctor gave me the go ahead for surgery and notified the transplant team. My new surgery date is April 3rd!
March 22, 2012
In about a week I will be off to Montreal! I’m feeling nervous but nowhere near as nervous as I was the last time my surgery date was fast approaching. I am focusing on being well, eating right, getting exercise and staying calm. It looks like the universe sent some warm summer weather my way early so I can enjoy the outdoors with both of my kidneys for a little while. It’s so beautiful outside, and there’s no place I’d rather be when the weather is this gorgeous. I’ve been walking around downtown a lot. Enjoying good food and seeing as much of my friends as I can. I’m living in the moment and truly feeling gratitude for being a healthy, happy person.
March 25, 2012
Disclaimer: I don’t want people to read this next entry as negative. So, just to make sure we’re on the same page I’m in a positive mood. Reflective perhaps, but not at all negative. Sometimes I’m a little misunderstood so I thought I ought to clarify.
This is the hardest thing I have ever done. It’s difficult to explain how this experience is affecting me to other people. It’s hard to put into words. It makes sense in my head, but when it comes out of my mouth it always seems like I’m not explaining it properly. I don’t want anyone to misunderstand me when I talk about what I’m going through. Of course it can be stressful at times, but it’s more than worth it! I feel badly when someone sees me upset or nervous about surgery, and I do my best to explain that it’s all part of the journey and it’s just something I have to get through. I would expect that everyone’s experience is different so I can’t really say if anyone can relate to what I’m going through, even if they had donated an organ before. I suppose I’m just feeling a little sympathy right now for those people around me who are having a hard time understanding me.
I’m “in it” right now. I’m enjoying being “in it”. Even when it’s hard – those are the moments I try to really try to enjoy the most. I think this experience is changing me as a person. I guess every life experience helps to mould you into the person you are.
April 1, 2012
Bonjour Montreal! I made it!
I’m
sitting in my hotel room … doing a lot of thinking. Tomorrow morning I
have meetings, x-rays and bloodwork. Then I will be admitted. Tuesday
morning they will wheel me into the OR and take one of my kidneys away
and give it to a person I don’t know. Seems like I have been waiting and
fighting for this for so long. I don’t know how I feel. I don’t really
know how I’m supposed to feel. Maybe this is some kind of survival
mechanism. My brain knows if it starts feeling something it might freak
out so it’s just decided to become neutral. I’m hoping starting tomorrow
I will be so busy I won’t have the chance to process what’s happening
until it’s happened.
My father has been so amazing through this entire journey. He has been overwhelmingly supportive, and has taken care of every detail of this trip. Dad, if you ever read this … you are the best Dad in the whole wide world! I love you so much!! Thank you for being my rock.
My best friend surprised me with the news this morning that she is flying out on Tuesday to be there when I wake up. I was moved. Like … truly moved. I am sitting here trying to think of words to type that would be able to express the kind of gratitude I feel. I just keep staring at the screen. I’m at a loss. Megan you are an exceptional friend and a fantastic human being.
I don’t think I will have the chance to write anything until I’m out of the hospital, so I guess this is me signing off for now.
