Live Like You Were Dying

When this song happens upon my ipod I must admit it makes me want to quit my job, go skydiving, see the world, and have a new experience everyday. It makes me think of those people who say that they have never "truly lived" for one reason or another, and in light my desire to donate a kidney, it makes me think of those that can't because they are on dialysis 12hrs a week, are too frail to travel, and spend every waking moment praying for a second chance.

I am very thankful for all of the opportunities that I have had in my life. I have a wonderful husband who loves me more than life itself, I have a wonderful family that treasures me, friends so close they are family, and I have lived a life. In my short years here I have been to University, graduated with 2 degrees, spent 6 months in Europe seeing sights I never thought I would see in person. I've had experiences, I've had my moments (fitting follow up to Live Like You Were Dying is I've Had My Moments by Emerson Drive). I've lived a full life, and although I know that I will come out of the surgery with flying colours and go on to have a family of my own, get my pilots license, and continue to have random wonderful adventures; I know that if something happens and this is it for me, I will have lived a life I can be proud of, a life of no regrets, a life of love, passion, family, friends, and meaning. 

I want to leave you with the lyrics that inspired my post today:

Artist: McGraw Tim 
Song: Live Like You Were Dying 
Album: Live Like You Were Dying

He said: "I was in my early forties,
"With a lot of life before me,
"An' a moment came that stopped me on a dime.
"I spent most of the next days,
"Looking at the x-rays,
"An' talking 'bout the options an' talkin’ ‘bout sweet time."
I asked him when it sank in,
That this might really be the real end?
How’s it hit you when you get that kind of news?
Man whatcha do?

An' he said: "I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

He said "I was finally the husband,
"That most the time I wasn’t.
"An' I became a friend a friend would like to have.
"And all of a sudden goin' fishin’,
"Wasn’t such an imposition,
"And I went three times that year I lost my Dad.
"Well, I finally read the Good Book,
"And I took a good long hard look,
"At what I'd do if I could do it all again,
"And then:

"I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

Like tomorrow was a gift,
And you got eternity,
To think about what you’d do with it.
An' what did you do with it?
An' what can I do with it?
An' what would I do with it?

"Sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And then I loved deeper and I spoke sweeter,
"And I watched Blue Eagle as it was flyin'."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

"No! Absolutely not!"

So my mother-in-law knows. Wanna guess what her reaction was?

Needless to say she basically said that she thinks its great that I want to do this, but that I shouldn't. That I was putting my future children at risk, and living with one kidney is a completely different life. Which it isn't.  And there is a greater risk that I will be hit by a bus walking to work than have complications during pregnancy.

Interesting piece of the puzzle... when we were talking about it, my husband asked her if I was donating to my best friend if that would change her reaction. "Absolutely." So she is an example of the issue being that its non-directed.

That continues to boggle my mind. And I guess I'm learning that I don't think the same way a lot of people do, because to me, just because I don't know someone doesn't mean that their life is not worth as much as mine, that its okay for someone else to die because of a 1 in 300,000 chance of complications. To me, I have the ability to do this, and to not do it to me is almost like playing God and deciding who lives and who dies. Each person has the power to save a life, via blood donation, bone marrow transfusion, or even organ donation. The process is albeit time consuming, but it is relatively simple, and it saves a life. Is it not worth taking a few hours and a few weeks out of your life to give someone years to love and be loved? If it were your loved one, nothing is worth more than a life, and so why would that change because I don't know the recipient?

The other question that both mothers have now asked is "do I get to pick who gets my kidney?" Do I get to say only a  child can have it, or a single mother? NO! And I wouldn't want to either.

No, my kidney goes to the next person on the transplant list that I am a match for, regardless of who they are, how old they are, or why they need a kidney. Thats none of my business, and I don't want to know.


Moving on.

Now, all of the people that  need to know, know. Now I just hope and pray that I am able to get my iron up and am approved for donation. I know that I will have all the support I need to get through this.

And of course, I will continue to chronicle my experiences, the tests, the surgery, and the recovery.

Telling the Other Mother

My husband and I decided that we were far enough along in the process that we should start telling a few people what I was planning. Out of respect for my mother, we decided to tell her first. Which we did.

But now to tell my husband's mother. I love her so dearly, I am very blessed to have such a wonderful relationship with her, and all of my in-laws for that matter. They have really made me a part of the family, and I enjoy a relationship with my mother-in-law outside of interactions with her and my husband.

Yet despite how wonderful the relationship is, I am still nervous about telling her. I get nervous when telling anyone about this. 1, because I am not overly confident that some of the people will be able to keep this to themselves (I'm fairly certain one person I told did not), and 2, because there is still the chance that I will not be able to complete the donation and then I will have to share that news as well. I suppose the 3rd reason is that I am not sure how to deal with this in the instance where I get a negative response.

For whatever reason, I feel as though I would be a failure if I am unable to donate. I am struggling to explain why I would feel that way, so instead of doing a poor job describing it and/or analyzing it, I'm just going to let it be.

The good news is, getting back to telling my mother-in-law, is that I think the 'information distribution' instead of the 'sales job' tactic worked well when I told my mother, and think that I will go down that same path this time round. *fingers crossed* that this will go over well, and that both her and my father-in-law will be there to support my husband and I through the rest of this process.

Living in the What If World

I've been distracted for days. Feeling like I'm out of sorts or not quite present in my activities and interactions. I've been inside my head far more than is healthy.

I keep thinking, well, we don't have kids yet. And does it make me a horrible person to donate before having kids knowing the risks? What if something happens during pregnancy that harms my child? Is it my fault? Am I bad person if I do this?

Living inside my mind for so many days, playing out so many scenarios, has made me spend a few more hours reading stories of other's donations, their experiences, and most of all, their motivation.

Most of the stories I read were short and not overly detailed. Very few were non-directed or anonymous and even less were young women. But one, stood out for me. This post details his experience, and the struggle to balance his own life and make donation as 'easy' as possible with his work and his family while balancing the needs of his sister, the recipient.

The one thing that came clear that really reminded me of what I am doing, is that all of the steps that I go through, all of the tests and procedures I have gone through, those are nothing compared to living on dialysis, diminished quality of life, the thought of dying unless a donor can be found... Another person's life literally hangs in the balance here, and all of everything that I have gone through mean nothing in comparison.

I know that if it was anyone in my life who needed a kidney and I wasn't a match, I would be begging strangers on the street. I would pray that there was someone out there who was young, healthy, and able to donate that would do something like this.

Yes, there are risks. Yes, it is major surgery. No, I haven't had children yet. Yes, we do want children, and do want the very best for them. But I do know that there is a mother, a father, a brother, a sister, a son, a daughter, praying for a kidney, and that they would ask how I could put a (relatively) small risk and minor inconvenience before the value of some one's life.

So when I live in the what-if world, when my mind goes to those places and I lose sight of why I am doing this, all I need to do is picture my life without a loved one in it, someone who would have died when a donation would have saved them, I know that I could never say no, stop.

I am a strong person, I know that I can deal with whatever life throws my way, and having been thrown a lot, I know that whatever comes from this donation will only make me stronger. I am prepared to deal with the risks. The What If World, its just a symptom of my overactive imagination and not the world I choose to live in.

I choose to live my life to the fullest, to create a world I want to live in, to not be afraid of the risks of living. I choose to love my husband, to love my job, to be close to my family, to treasure my friends, and not to be afraid of what the future holds. I love feeling alive, like I am doing something with my life and not merely existing.

No, the What If World is not for me. Its a place I go to every now and then, but not where I choose to live.

Now She Knows

So this weekend I told my Mom and Dad about my plans to donate. I was terrified. Nervous. I wanted positive support.

So here's how it went:
My husband and I took my Mom and Dad out to dinner to celebrate their birthday's (which are only weeks apart), and upon returning home, the four of us sat down to play some cards and I got things started.

Me: Mom, I'm thinking of donating a kidney.
Her: Please don't.
 *Crap! Not the response I was looking for.*

But, have no fear, it did get better. The approach I took to this coversation was that I was there to get her thoughts and feelings, and to share information. This was not a sales job. This was information distribution.

So we started talking. She didn't really have a lot of questions for me, but looked as though there were many things she wanted to know. So I volunteered some information, I told her about the tests I had been through, how extensive they are, and what the process has been like thus far.
I also discussed with her the risks. Her main point is that I haven't had children yet, and she was worried about the risks both to me, and to any kids I may have.

Great. That I can handle. So we talked about them fairly extensively. Very happy that I had done my research and was able to provide quantifiable numbers to back up my points. I am very thankful that my husband was there with me. He was able to articulate things in a way that I was having issues with, and between the two of us, we remembered most of the research we've done. Having his support in telling the family was huge, and I think having his support helped my parents be more supportive as well.

Interesting point, Mom didn't seem to care that it was anonymous, her first concern was me. That made me feel pretty good actually, to know that above all she loves me and just wants me to be safe.
She is concerned about pregnancy and how hard it is on the body, and how hard it will be on mine with only one kidney, but with more information I think will be okay. Actually, she said she'd be terrified the entire time as it is major surgery, but that was her job as my mother.


My Dad on the other hand, he didn't say too much about this. His main comment was "you don't mess with Mother Nature." Duly noted.

Thankfully, they both did say that this was not their news to share, and would not be telling anyone else about this. Also, we talked about this on Saturday night, and had a normal Sunday, which was really wonderful. We were able to enjoy the time that we had together and not let this overshadow everything else.
Very glad that this is all done. Well, not all done. Its the In-Laws next weekend.

Timelines

I called the Transplant Center this morning and spoke with the woman who has been coordinating everything for me thus far. I was looking for information on timelines and a bit more about what to expect.

I am still waiting for my psyc appointment, but that should be in May (apparently the Dr is bringing in another Dr to help with his course load as he is overwhelmed with all the refferals he is getting). The appointments with the nephrologist and the surgeon will follow within about 2 weeks, but right now they dont have an Operating Rooms open until July, so the wait time for surgery is about 3 months. I'm kinda hoping I can get scheduled for July as that still allows me to have the time off work that I need without infringing on our busy time. I know I will have to take as much time as I need to heal, and that with laparoscopic surgery I could be back within 3 weeks, but I need to be back at work, and be back 100%, before September.

My other question was about staying local vs going national. I am not opposed to going where I am most needed, but I think I would prefer to stay at home. Here I have my husband to take care of me, as well as a friend or two. I will have my own bed, and not be racking up a hotel bill. Apparently there is a very high demand for Kidneys, almost 1000, so as long as I am a match I should be able to stay here.

Part of me is still coming to terms with some of the reactions I have been getting, and although they do not have me doubting my decision or anything like that, they have made me wonder why I think so differently than other people that I know? The reactions I'm speaking about are not just ones that I have gotten personally when talking to people about my specific choice, rather from when talking about living organ donation in general. Things to ponder as I get back to my day...

The Boss Knows...and thinks I should wait

Yesterday was an interesting conversation. I was able to sit with my boss and her husband (a rare thing) and talk about a few things that had been going on at work. After a bit of this I felt it would be a good time to talk to them about what I've decided to do.

I have to admit, I was a bit taken off guard with their reactions. I'm not sure what I expected, but I hadnt expected both of them to tell me to wait, and revisit this after a (minimum) year. They will both support me in going through this, but did say that they would rather celebrate me choosing not to go through with this, than celebrate a date for surgery being set.

I think the thought was that as the formal process has only been going on for 4 months, and I am so young (23) that I havent had the opportunity to think this through clearly. They asked how I would feel if down the road a close friend or family member (possibly a child) needed a kidney, and although I was a match, I didnt have one to give, as I had already given it to someone else. I've thought about that.
My thinking is that for certain I will be saving someone's life (or at least extending it), and there is a small possibility that someone I know will ever need a kidney, and I'm not willing to trade a certainty for a possibility. I dont think I will regret this decision down the road, I've done enough research to know what I'm getting into, what life will be like, and just something inside is saying this is the right thing to do. I'm going to trust that feeling and make it happen.

The other thing is by saving my kidney for someone who might never need it, I would be saying that the lives of my friends and family are worth more than someone elses, which isnt true. Just because I dont know them doesnt make them any less of a person or any less valuable. I also know, that life with one kidney will be normal, functioning, healthy, and long. I'm okay with that.

I firmly believe that should a situation happen where later in my life, if someone I know needs an organ, that they will get one. I believe that with everything that I am. And things have a way of working out for me, in better (and more) ways than I could have ever imagined. So I believe that this will work out, and it will be a good decision.

So the reaction wasnt what I expected, but I know that they will support me, and keep this to themselves (which is just as important as their support). I feel a bit better having told them, but know that I would have felt better if the main theme of their reaction wasnt "you shouldnt go through with this."

Be that as it may, its time to move on and get back to work as I wait for the psyc appointment to be set. 

Small sidebar:
I'm not the youngest (Living) donor on record (thankfully), but I am among a total of 34,621 donors age 18-25, with 141 being in 2010 thus far (American Stats, sorry dont have Canadian ones, but will post a link if I find them).

One of the reasons why...

http://www.time.com/time/audioslide/0,32187,1983982,00.html
Right now I am hyper-tuned to anything involving organ donation and especially kidneys. I have been reading all about wait times and how Ontario has the lowest rate in the country for registered donors, how in 2008, there were 4,330 people on the waiting list for an organ transplant, 215 people died while waiting for an organ transplant, and various other stories which go to confirm that not many people do what I'm about to do.
There are so many stories out there about our health care system, scary statistics, and tales of woe. Heart warming stories are few and far between, so when I found this story, I wanted to post it as a reminder of why I am doing this.

I know that if it was my husband, I would be pulling people off the streets and begging them to get tested for donation. I would do anything in the world to keep him alive and by my side. We dont have children yet, but if we did it would make it all that more important to keep him alive. Dying due to a lack of organ donation is so horrible because its preventable, and its not really that hard to donate. Yes it takes time, a multitude of tests, and a bit of recovery post-op, but really, 6-10 weeks out of my life to give someone another 15years with their husband/wife/child/mother/father... thats hardly anything in the grand scheme of things.  So seeing this story online this morning just reminded me of why I am doing what I'm doing, and strengthened my resolve to see it through.

Deciding on the Journey

This blog is about my personal journey to donate a kidney as an anonymous donor.
I am starting this 2 months after my initial meeting with the Live Organ Donor Coordinator and figure I should bring you up to speed on how this came about and what's happened thus far.

The Decision
I have been a blood donor for several years, which started because in 2005 my brother was T-boned by a semi and needed blood. Since that time I have been donating as often as I can as it was some one's blood that helped save my brother's life. After one particular donation I was given a pamphlet for the One Match program, and I signed up. Through my research into what One Match is I came across information on organ donation.
This was something that struck a cord with me and I decided to research further. At the time I was a starving student, and unable to take the time to recover from surgery, let alone afford the time off work. But it stuck with me. My life finally became settled in December, I was done school, married, moved to a new city and was working at a new job. All of the bumps in the road had been sorted out and I finally had the stability required to revisit organ donation.

I continued to research what donation was, the risks, what life was like post-donation and through it all I decided that I wanted to do it. The city in which I live just started the Anonymous Donor program, and I am the first to go through it. I contacted the Living Donor program, and on January 25th went in for my initial meeting.


The Road Thus Far

At this initial meeting they described for me the tests I would need to go through, what the surgery would be like, what to expect in life after, and the difference that I would be making in someone's life.

For tests I would need 2 urine tests, a blood test, abdominal ultrasound, a kidney function test, and a full body scan.
Additional requirements include a meeting with a social worker, a psychologist, and a few others which havent happened yet.

I have 1 urine test left (glucose level) and the full body scan. The urine test I need to go for 2hrs after eating breakfast, which unfortunately due to a busy schedule is why I havent been able to get that one done yet.
The MRI is scheduled for April 21. I have to fast for 6hrs prior to the test, and as its in the evening so I dont miss work, I anticipate being a bit cranky.

The interesting test was the kidney function test. I was told that I needed to be well hydrated and right before going in they even had me drink water. I was given an injection of radioactive material, laid on a imaging slab and contrast images were taken for 30mins, then every hour for 2 hours. I was able to look on the screen and see the green of the radioactive material work its way through my body through my bloodstream.
That was the other "fun" part of this test. Bloodwork. Every hour for 2 hours following the injection. Just a note... I hate needles. Hate them. Cannot stand the thought of them, and I get squeamish if I see one. Any type of blood test or injection into a vein makes me nauseous and light headed. Apparently one of the reasons I had to be well hydrated is so my veins would be nice and plump, easy to stick. Right. Apparently by the time the third and final blood test was being done my veins were not in great shape as it took 3 attempts to find a vein. I almost passed out.
But I did it. Thankfully. And my understanding is that I am pretty much done for blood tests until a match is found and surgery is approaching.

The other interesting part of this process thus far was the visit with the Social Worker.
She was a wonderful lady, and I had a great time talking with her. She asked about me, my personal medical history, my family, my support systems, my husband; my reasons for donating, how I came about deciding to donate, and what I expected to get from this. She told me that as an anonymous donor I would probably never meet the recipient of my kidney, and I told her that I was okay with that. I dont feel this person would owe me anything, or that I would have some sort of say in how they live their life. The only thing I would want is that this person, whoever they might be, would do something, however big or whoever small, to make a difference in this world.
I'll fill out more of the details on this in a later post, and will continue to blog about what the road to donation is like.