14months post-op and 4months pregnant

I'm starting on a new journey. I am pregnant with our first child, due June 2012. I've wanted to share this news here for quite a while, but I kinda figured I needed to tell my family and my boss before telling this world (as I know there is a bit of overlap).

I was a bit nervous when we first found out (heck, I still am - this is a big change!), as I had assumed that I would be high-risk, due to my surgery. According to my doctor I am not high risk! I am young (25yrs now), and quite healthy (as I had to be in order to donate) and thus I am at the higher end of normal risk, but still normal.
I have to say, this was a bit of a relief to find out! They will still keep an extra eye on my blood pressure and do a bit of extra monitoring but other than that they anticipate this being a normal and healthy pregnancy.

Being pregnant did bring to mind all of the risks they warned me about prior to surgery - the increased risk of pre-eclampsia, hypertension, pre-term labor, and low birth weight. What I have been thinking about is that this 'increased risk' took me from less than 1% chance to less than 3%. Which means that I have a 97% chance of no complications.

This is one of those things - it's one thing when being pregnant is an abstract thought of something that may happen at some undetermined point in the future, and another when that second line comes up on the pregnancy test.
Granted, I am still early in the pregnancy, and June is still 6 months away, but from where I stand now, if I could know what I know now back then, I would totally do it all over again. I am young, I am healthy, and the 3% chance is still not enough to balance out the good the my kidney has done for someone else (and their family!).

I know this might be silly, but I kinda figure that since all the organs get squished and pushed out of the way, having only one kidney gives this kid some extra room to grow/move around.

I will continue to come back to this blog, to share updates on life with one kidney, and to let you know how being pregnant with one kidney is going. If I haven't posted, chances are that means things are going so well I don't really have anything to report.

I know this is a new can of worms, so please let me know if you have any questions on life with one kidney, the surgery, recovery, and now how it is having an impact on this new journey. I don't think I am the only person to get pregnant with one kidney, but in this new digital age, I may be one of the few that is willing to blog about the experience. If you would like me to post more frequent updates, let me know as well - I'm happy to post if it will help someone out there.

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'."

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.

Too low to go

On June 16th I ment with the nephrologist (and the rest of the committee) and we talked risks and the gambit. The next day I emailed my transplant coordinator with a signed copy of my Personal Directive, and a note letting her know that my husband and I had talked about the risks and were comfortable moving forward. Then I got the news regarding my low iron. Blah! My iron levels are at an 8, and the acceptable range is 12-31. Thats really low. I'll have a lot of work to do to make sure that I get my iron up. And the transplant cant move forward until I get it up. Meaning the team cannot all come together and decide if I'm fit for donation. Mentally I'm good to go, and physically all my tests have come back looking good, but the only thing is my Iron.
To me, this seemed like a really small thing, but then I did some research, and here's what I found:
"The body needs iron to make hemoglobin, a substance in red blood cells that carries oxygen from the lungs to body tissues. Much of the iron our body is stored in the bone marrow that makes blood cells. When there is not enough iron in the bloodstream, the body uses the bone marrow reserves. If this iron stored in the bone marrow is low, red blood cells do not form properly: they are smaller than usual (microcytosis) and fewer. As a result, less hemoglobin is available to transport oxygen throughout the body."
Also: "Your body needs iron so it can make hemoglobin, a substance in red blood cells that carries oxygen from the lungs to body tissues. Brain activity, breathing, cellular respiration and every activity of the body depends on there being enough iron in the blood."
Note to self: Get iron levels up.  My Transplant Coordinator did say that she has delt with this before and the treatment was IV iron. Eeek. I hate needles, with a passion. But, if thats what it takes, then thats what I'll do.
So today I go to my family doctor to work on this, and will be having all test results sent to the hospital as well to keep them in the loop. Cannot wait to have my iron levels back up.

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.