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Thursday, December 30, 2010

Living Donor Pioneer Dies

I was going to write about something else today but I thought that this was an interesting article about really brave man.  I can't imagine how much controversy and concern what he did would have caused back in late 1954. I bet he had to deal with a lot of Negative Nellies! The fact that what he and his brother did (with the help of their doctors of course) has lead to thousands if not hundreds of thousands of successful transplants (kidneys and otherwise) is amazing. I would think that indirectly, advances in transplants have also impacted other fields of medicine as well...one thing does lead to another sometimes. Organ donations aside, I've always admire people who take risks like this for the greater good-I've never been that brave. I can't imagine making a choice like this without an internet to us for research or even a fraction of the medical knowledge we have today being available to the general public.

On a side note, if the first successful living donor made it to 79, I think that bodes well for people like me who also chose to donate, especially with the advancements in medicine.
Here is his story (borrowed from the UK Daily Mail):

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A kidney donor who helped doctors carry out the world’s first successful organ transplant has died following heart surgery at the age of 79.


The brothers in 1955, six months post op
 Ronald Lee Herrick, whose gift  helped his twin brother Richard survive 56 years ago, had been suffering from complications since his operation in October. He died on Monday at the Augusta Rehabilitation Centre in Augusta, Georgia, his wife Cynthia said. Mr Herrick gave a kidney to his twin brother at what is now Brigham and Women's Hospital in Boston. The five-and-a-half-hour operation on December 23, 1954, kept Mr Herrick's brother alive for eight years and was the first successful organ transplant. Lead surgeon Dr Joseph Murray went on to win a Nobel Prize.

The operation proved that transplants were possible and led to thousands of other successful kidney transplants and ultimately the transplant of other organs. Doctors had tried a handful of transplants worldwide without success up to that point, said Dr Murray, who went on to perform another 18 transplants between identical twins.‘This operation rejuvenated the whole field of transplantation,’ the 91-year-old said from his home in Wellesley, Massachusetts. ‘There were other people studying transplants in four or five different countries, but the fact that it worked so well with the identical twins was a tremendous stimulus.’
Herrick was raised on a family farm in Rutland, Massachusetts, where he graduated high school. He later served in the U.S. Army and retired to Belgrade, Maine. At 23, Mr Herrick was glad to give up an organ if it would help his brother, who was dying from chronic nephritis, an inflammation of the kidneys.
Dr Murray thought the odds of a transplanted organ being accepted would be enhanced since they were identical twins. Before the operation, many people opposed the idea of transplanting a body organ, equating it with desecration of a body.

Others felt it was unethical to operate on healthy humans, and respected editors of medical journals wrote that it was contrary to the Hippocratic Oath's vow to never do harm to anyone. But Mr Herrick never wavered and the operation went on as planned with no complications. Richard met his future wife, Clare, in the recovery room, where she was a nursing supervisor. ‘He was the only one in the world who could save his brother's life, so he was going to do it,’ said Cynthia Herrick. ‘There was no question about it.’

Tuesday, December 28, 2010

Dominos and Do-Gooders

There were two things said to me this week in regards to my desire to donate a kidney that really made me pause-in two very different ways that in the end are connected.

The first was a comment left on here by my birthmom Judy.  She said "it also again caused me to wonder at how the world turns: decisions are made, lives are changed and because of that other lives are changed and so on... providential I think". It made me wonder if there is some kind of greater plan or, in other words if indeed everything does happen for a reason. Small events and decisions lead to other small events and decisions in a seemingly linear fashion. I'm not one to believe on a daily basis that everything I, or people around me do leads to something else which in the end leads to something greater. But I do have to wonder-had I not been adopted by the family I did, experiencing the childhood I did (reading personal interest stories about organ donation at a young age-ha!) as well as the illness and death of my Dad (etc) would I be here now contemplating organ donation? Maybe. But maybe not. Is there such a thing as providence or at the very least the "domino effect"?

The second comment was made by someone else who said "I am inundated with do-gooders telling me how they run their lives and how I should run mine. If you want to do a selfless act, then do it, but don't expect me to care, because then its no longer selfless". My initial reaction to this was great sadness as well as anger. The comment upset me more because of who it came from and the level of support I expected from them. But that aside, they had a point.  I too, am bothered by the "do-gooders".  Not all but most.  They get on their soapboxes, they want you to join their cause and they try to save the world.  Bleck.  Sure it's noble and often the right thing to do-but I think we'd be lying if we said there hasn't been some point in our lives where we've loathed a do-gooder or at least eyed them with a healthy dose of cynicism. I have never thought of myself as a do-gooder and it's not a label I want to wear. So why do we hate the do-gooder? 

A recent series of studies found that those who volunteer to take on unwanted tasks or give gifts/aid without being prompted, quickly alienate themselves. Psychologists believe this is because it makes the rest of us feel guilty and puts pressure on us to behave in an equally selfless fashion. Researchers say do-gooders come to be resented because they 'raise the bar' for what is expected of everyone. They even went as far as to suggest that people might want to think twice before talking about their charity work or volunteering to help out in front of others. The study showed that it doesn't matter that the overall welfare of the group is better served by someones unselfish behaviour. What is objectively good, we see as subjectively bad.

I know that not wanting to be seen as a "do-gooder" is one of the things that initially made me not want to share my story in the first place. I didn't want to be compared to those people who are always trying to generate social awareness, raise money or get their friends to sign petitions. I didn't want to be seen as someone "seeking attention" looking for a pat on the back or rah rahs from other do gooders. The very thought makes me cringe.

But yet here I am. 

Why?  Well in reflecting on both of these comments this week, I realized that sometimes (not all the time) things do happen for a reason, because of things bigger than you. And I think you know when you are in the middle of one of those "chains" or domino effects when a bunch of small events lead you to doing something that isn't the "norm" for you or even is contrary to what you would normally do (ie: my being a loud and proud "do-gooder").

I was reading a story today about Harold who was a pioneer in altruistic kidney donation in 2000.  In his post he shared his domino effect and how a number of events "bumped" into him, eventually leading to his kidney donation. 
  • He too lost his father to cancer and wished he could have done something to help. 
  • Giving blood since high school bumped him into platelet donations.
  • He saw a news feature on a teacher who donated to her student.  
  • Donating platelets bumped into signing up as a potential marrow donor after he met a couple at a mall desperate to find a marrow donor for their daughter (he was not a match).
  • Signing up for the marrow program bumped into a movie about kidney donation on a plane and the movie bumped him into the National Kidney Foundation.
  • That bumped him into the transplant program, leading to a successful kidney transplant. 
A series of seemingly unrelated small events ultimately took him to a place where he was able to save someones life. He said "I wake up everyday and know I did a good thing. And I’ll be happy to tell as many people about it as will listen. Because my domino might bump into someone else’s domino. And one of them might raise their hand and ask the questions that I asked. And one of them just might make a difference".

I'm still not keen on being a do-gooder.  But if it somehow leads to a domino effect with a better life outcome for someone-well that I can live with.  

Sunday, December 26, 2010

Because You Asked

Here a few more answers to some questions I am getting from people as they learn about my "kidney thing" or who have had questions come to mind after thinking about it for awhile.

Will you still be able to drink?
I don't know what is funnier-the frequency of which this one is asked (i.e almost everyone) or the fact that it usually is in the first three questions people ask. I had the same question (perhaps even in my top three) when I first started looking at this.  The first answer I found was on the blog of the FBI agent who donated a few years ago in the states ('Kidney Chronicles', as found in my "Interesting Sites" links on the right hand side of the page).  He said: "I can think of a million reasons why people shouldn't drink, but this is not one of them".  Why I don't share his disdain of festive beverages, I think it might be a good excuse for me to continue drink less and avoid overdoing it.  A coworker who shared with me that she had only one kidney (reasons unknown to me) said her hangovers are worse as a result.  However another co worker's husband donated a kidney about 10 years ago and he "still drinks like a fish". So I think the short answer is you can still raise a glass as well as the next person, but like they say, everything in moderation.

Would I want to know about who got my kidney?
Yes I think so.  It's not a "must" for me but I think it would be nice. It's a piece of the story right?  That being said if I didn't like the person or their family or worse if the kidney didn't work, I am prepared for that.  I knew going into this that I have to make the decision because its a good ting to do, not because I have a specific outcome and recipient "type" in mind.

How will they choose who gets my kidney?
That I don't know 100% but I will ask. But here is what I know based on the assumption that they'll ask if I am willing to go into the national program (I am even though it may mean travel). My understanding is that they will come up with a short list of people my blood type can help how likely have been waiting the longest and are the sickest or harder to match. They will perform cross matching tests which are used to identify the presence of preformed antibodies that would damage the kidney (cause rejection). The basic test involves mixing the liquid portion of the recipient’s blood (the part of the blood that contains antibodies) with my cells. If their blood tries to kill my cells (or does kill my cells) that is bad and it won't work out between us. I will likely have to give a bunch of blood for this purpose once cleared for donation and then from there they will test against the short list, schedule surgery etc.  If I had been donating to someone I knew, this test actually would have been done at the start to rule me out as a compatible donor for that person, then again right before surgery to make sure nothing changed (pregnancy, transfusions and transplants can change the antibodies in your blood).

What is a Domino or Paired Exchange?
A "paired-exchange" is a technique of matching willing living donors (who had planned to donate to a loved one but weren't a match) to a compatible recipient who also has a loved one willing to donate who is not a match. For example a spouse may be willing to donate a kidney to their partner but cannot since there is not a biological match. The willing spouse's kidney is donated to a matching recipient who also has an incompatible but willing spouse. The second donor must match the first recipient to complete the pair exchange. Typically the surgeries are scheduled simultaneously in case one of the donors decides to back out and the couples are kept anonymous from each other until after the transplant.
When a non-directed donor (like moi!) enters the Registry, they have half the conditions required for finding a match. In other words, because the transplant of their kidney is not conditional on my friend or family member receiving a transplant in return, I have a greater possibility of being involved in whats known as a domino exchange. The largest so far I think has been 16 transplants, involving 32 people (in the US). There are some pretty intense logistics to it (including travel, OR scheduling etc) but its pretty cool.  The Canadian Registry going national in November was a huge step for this as it centralizes the planning a bit and makes the who "matching" process far less manual.  Here is a diagram of how a domino exchange would work:


Keep the questions coming-it's a great learning experience for me and also on some occasions has given me some added food for thought!

Friday, December 24, 2010

Christmas and Family

Regardless of whether or not you are religious or what religion you practice, this time of year is about family. It's about spending time with people who are important to you, taking the time to call loved ones who are far away and remembering special people in your life that are no longer with us.

This year is the 15th anniversary of my Dad's last Christmas. In July of 1995, he was diagnosed for the second time with Esophageal Cancer. That time around it was inoperable and terminal. He chose to fight it and did a pretty good job of it well into the fall of that year. But by Christmas, the disease was taking its toll on him. He was becoming a shadow of the man I knew and as a 20 year old, that was pretty hard for me to understand.

Despite how sick he was, there are good things I remember about that Christmas. For one, his illness had slowed all of us down enough that we had time to stop and really get to know each other better. I think I had more conversations with my Dad in those last few months than I had in the five years prior. One of the really  good memories I have of that time is the shopping excursion we took late in December to get my Mom one more present. My dad was a creature of habit and every year his gift buying formula for my mom was exact-there was always a fancy Christmas decoration like a wooden antique Santa or some kind of festive table top display. There was also some kind of orange and chocolate sweet (bleck..not my thing). The third part of the formula was that he always got her something nice to wear. No longer able to drive, he needed me to take him to downtown Oakville to a little boutique, where he found a pretty purple silk blouse for her. The snow was falling, the picturesque streets were bustling with people walking past well decorated store fronts.  It was something out of a Disney movie and more importantly, it was wonderful to spend that kind of time one on one with my Dad.

Of course it was a difficult time too. He had lost a lot of weight, was on strong medication and often slept most of the day and night. He couldn't do most of the things he enjoyed doing before which took a toll on his spirit. Even just walking around the house would tire him so easily. He became so thin that even now, I hate looking at pictures from that Christmas. I think that it's almost harder to watch someone get sicker and sicker and slip away than it is to get through the moment they actually pass on.

This is a small part of what is motivating me to continue on in this journey to help someone by donating my kidney. I can't help but think that somewhere out there right now, someones dad or sister or child is getting sicker with kidney disease. Christmas and all its required activities are probably magnifying how much the illness is taking away from who they normally are. They are just waiting, trying to continue on, not knowing when or even if things will get better.

I have recently been reading a blog of a woman, Heidi who just received a kidney transplant at the start of December.  She has made several comments about how she was doing leading up to her transplant that really have given me insight into what life is like on dialysis. Heidi tried very hard to keep how sick she really was from her friends and family but so many things were slowing her down. Post-op she is a different person. For example, to put it in perspective in under 4 days post surgery she lost 15lbs of water weight with likely more to come off.  She said "And then to think I survived the last couple months when I was in such dire fluid overload and dialysis just wasn't working any more that I struggled to do the simplest tasks, like walking across the room or getting dressed, all the while doing my best to keep this from everyone."

I hope that I will be able to donate my kidney and give someone their life back like that. While I have no idea who will get my kidney or what their lives are like now, I hope that I will be able to make this the last Christmas a family has to watch their loved one struggle with a diminished quality of life. It's not something I could do for my Dad, but this is something I can do for someone else.

“Other things may change us, but we start and end with family”

Merry Christmas. everyone :)

Wednesday, December 22, 2010

Moving Right Along

I'm going to assume there wasn't anything extrodinarily disturbing about my renal scan results as I got a call yesterday from the transplant program social worker.  She was wanting to set up a meeting in the new year.  According to the "steps" outlines on the ALTRA website (Southern Alberta Transplant Program-not sure how the acronym fits...) I am getting pretty close to the end.  After the social worker, thre is only an MRI and then an appointment with the Nephrologist.  He or she will review all the medical, social and psych info again as they have the final say on whether or not I can donate.  However I think that outside of the MRI results, if I have made it to see the Nephrologist, on the surface all the tests have come back clear (otherwise they wouldn't be spending the money on more levels of tests).

Here is what I've done so far (I added psych in because he isnt on the list and he should be):
The social worker appointment is January 4th-she'll discuss family support, work support, any fears or concerns I have and I think this is when we discuss whether or not I want to be place on the national registry.  We'll discuss potential logistics with that too as travel would obviously be involved. I think I also have to consider having a medical directive in place in case something bad happens.

Oh and in case you are wondering, "Appointment with the transplant" if I recall correctly means "appointment with the transplant team" and I don't think that's actually me.  I believe it's the doctors swapping info (with potential receipients' doctors) and the transplant program making scheduling arrangements.

When I look at the list I am amazed in basically about a month I went through all that. If I do some quick math it was 2 urine tests (or as the stepson would say-"doing your business in some kind of a glass"), 6 blood test (well 6 pokes with a needle anyway..they tested more than 6 things).  I think I've answered the "why are you doing this" question about 4 times to medical professionals. I've sat in 7 or 8 waiting rooms. I have eaten hospital food three times.  Thankfully I have only had to fast twice. Fasting=headache for me and who wants a headache?

Monday, December 20, 2010

When the Charlies Come Around

Not the real Charlie
This past weekend after my action packed (not!) morning and early afternoon at Foothills, I had the pleasure of FINALLY getting away for some R&R with Charlie.  Back in October he surprised my by giving me a weekend away (dates to be determined) at a lovely little cabin resort in the Rockies. The cabin was wonderful, complete with a claw foot soaker tub and fireplace.  It was rustic but clean,  simple yet cozy. With all I've had on my plate lately with work, the occasional kidney related test and getting ready for Christmas it was perfectly timed.
I know what you are thinking-that's lovely Lauren, but what does this have to do with the "kidney thing"?Well it has to do with Charlie and the fact that when you have no TV, no distractions but great food, the mountains and the odd glass of wine, you finally get the chance to talk about the important stuff in your relationship.  And of course this subject came up.
As anyone who has read along from the beginning knows, Charlie did not approve of even the thought of this decision.  He was angry and would leave the room with any mention of it.  Days grew into a couple of weeks and I finally asked that he at least support me in this even if he doesn't like it.  From that point forward he started to do all I ever really wanted him to do in this situation: he listened.  Over time he began to joke about my magic kidneys and asked me if I had plans to join the Red Cross when this was all done (I was told by a male friend recently that this joking on Charlie's part was a true sign of acceptance). He also asked the odd question here and there, usually pertaining to an upcoming appointment.  I was very careful to answer just what was asked and not give too much information lest I scare him off the subject again. Every now and again I would drop a "Rainman" fact on kidney donation or something I heard about transplants on the news.
This past weekend I had the chance to ask him why he seemed accepting of it now when only weeks ago it made him so angry. He simply responded that I had provided him with a lot of information as to the risks and how important this is and that is is a logical guy and could see where it made sense to do it. For the first time I really felt like he is backing me 100% in this and I have to say it felt wonderful. It would have been hard to go ahead without his full support.
I don't know if its because it is a topic of interest for me so I'm more aware of it or if its a coincidence but there have been a few shows/news stories we've come across together while watching TV that have been on the subject of kidney donation (Law and Order SVU was one but I can't remember the others). It seems though that in all the media and stories we've seen/read, there is that person, like Charlie, who is against the idea of transplants, especially donating to a stranger.  The good news though is that in all the stories (either fiction or real life accounts), the Charlies come around. It just takes a little time, a few facts and they warm up to the idea.

So if you have a Charlie in your life, hang in there because odds are, he'll be in your corner rooting for you.

“We cannot do great things on this Earth, only small things with great love.”

Sunday, December 19, 2010

Another Test Down-One to Go (I think)

Not actually my scan
On Friday I completed the "longest" test I will need to go through in the screening process-the renal scan.  The renal scan measures the kidneys' ability to filter as well as how well they are helping the body absorb what it should and not absorb what it shouldn't.  It also shows them how well the "flow" works to and from the kidneys and their friend, the Bladder.

The test morning started with me getting lost for the first time at Foothills.  The test was in the special services building which is attached yet separate from the main building on the west and the Cancer Centre on the east. I was told nuclear medicine was on the ground floor and my Google look up confirmed the same thing.  Sounds simple right?  But no, no it wasn't.  After pacing the level where I came in and not seeing anyplace that resembled nuclear medicine, I asked the "Information" booth people where I should be.
"Oh you should be in the basement".  I questioned that...I know they have MRIs in the basement but that wasn't where I was going nor was I told that.  Thoroughly unimpressed with how my questions were interrupting her gum chewing, she asked her neighbour.  The equally customer service focused girl beside her insisted I needed to be in the basement. "Look...all these places around us here on this level are for CLIN-ICS" she said with a slow, deliberate tone, so that I, the village idiot, could understand.  She waved her hand around her head for emphasis. I now understand why they have plexi glass separating those seeking information from those being paid to give it.  It's so we don't throw things at them out of frustration.  With a deep breath I said "They told me the ground floor". "Oh!" said the first girl, "you need to go down a level to the ground floor.  This is the MAIN floor".  As it turns out just because you walk from the ground (no steps) into a building at street level, does not make it "ground".  No, that is a floor below which incidentally is not the same as the basement.  It's a level further. It reminded me again that I am glad I am dealing with these people when I am mentally with it and not preoccupied with being sick.  I can't imagine how the elderly or really sick deal with the confusion.

Anyway once I figured out where I was going I stepped into the world of Nuclear Medicine.  Now if a hospital department could be like Disney World, this is the one.  Never have I met a happier, perkier bunch.  As I was checking in, a young lady in a lab coat approached the desk attendant I was dealing with murmuring medical terms.  The desk lady proclaimed "oh this is who you are looking for" gesturing to me.  The lady, who bore a strong resemblance to Lexi Grey on Grey's Anatomy excitedly told me she was going to get me some water so I could drink it.  She skipped off and quickly returned with the largest cup of water I've ever seen.  I was given about 15 minutes to drink it before I was called to start the procedure.
Lexi introduced me to two other young, brown haired ladies who would be "my people" for the morning.
It became pretty clear pretty fast that I was Lexi's first "solo" attempt at this renal scan thing.  She was reciting instructions and what the procedure would entail from a sheet of paper and was being very sure to check everything she did two or three times.  After much deliberation they decided as a group that my right arm was the best for blood draws so they would inject the radiopharmaceuticals (herein known as tracer) for the test in my left.  This meant the whole room had to be reversed in set up. As they went about doing that and setting me up on the bed, it was hard not to feel like we were just "playing doctor".  Collectively they knew what they were doing but they needed to help each other to accomplish the task at hand. 

They injected the tracer "stuff" into my left arm and I basically had to lay still for almost 30 minutes while cameras (that made no sound) took pictures of how the tracer was moving through the kidneys.  It was a very long 30 minutes because I a) didn't know how long I was supposed to be there for and b) didn't know how long I had been there thus far.  I had also been injected with copious amounts of saline (the tracer was "stuck" in my arm for a bit and they were trying to get it to move into the bloodstream better).  The saline with the giant glass of water were really making me need to use the washroom.

Wave your hand in the air
like you just don't care!

Once that part was done I had to stand in front of a camera for three minutes so that more pictures could be taken.  At least that time I could see the screen.  I could see the two glowing blobs of the kidneys on the screen as well as a giant yellow disco ball of a bladder below (all three glowed because of the tracer in my system but the bladder was really bright).  Clearly the kidneys were working well with the bladder. The last part of the test was one minute of pictures of my left arm to show that a bit of tracer was still stuck but that they had indeed put the right amount in me. The empty needle was photographed as well as a "cover our asses" step (direct quote). The tracer was still stuck despite the exercise of having me wave my arm in the air for 5 minutes.  They had felt bad about making me arm wave and did it with me for most of the time...four women waving our left arms around in a dark room (occasionally jumping) with a fist pumping style fit for Jersey Shore.

After that I had to wait about an hour to have blood drawn for to test if my kidneys were filtering out the tracer as they should.  The test was repeated every hour for three hours. I have to say that Lexi is the best needle sticker I have had in my life...she'd say deep breath and I wouldn't even feel it go in. Very impressive. They were equally impressed about the heat of my blood (??!) as well as the fact that I was thinking of donating a kidney.  They obviously also missed the memo on how they aren't supposed to say anything encouraging.

In total I was at the hospital from 9AM till a little after 1:30PM.  I ate in the cafeteria twice.  I learned there are no doctors lurking in stairwells having affairs as seen on TV.  There are however med students quizzing each other in the cafeteria.  I was pleased to get 3 of one guy's questions right (out of about 15).  In case you were wondering I kept the answers in my head and did not shout them out as I would watching Jeopardy, and no I don't think this qualifies me to be a doctor.
I have no idea what happens next or when I will know how I did at this last test.  I guess I wait for "the next call".

Wednesday, December 15, 2010

Negative Nellies

As much as I don’t want to spend much time at all focusing on the negatives of this experience, its time to talk about the “Negative Nellies”.  That way if someone finds this one day and is considering making a living donation, they haven’t been mislead into thinking that the feedback I have received is all sunshine and lollipops.
When you decide to look into donating a kidney and you start to tell people that, you have to be ready for the feedback good and bad. People love to give their opinions and many assume that you are telling them your plans because you are uncertain and in need of advice. Many assume you are asking for their approval.  While this almost always wasn’t the case for me, I still had to take a deep breath and deal with whatever reactions came my way.
When people are saying something positive, the likelihood of it “coming out the wrong way” is pretty low. But if people are concerned, emotional or down right against an idea, there is a very good chance they won’t choose their words carefully or curb their “tone”.  Here are some examples of some of the concerned, emotional and negative feedback I have received so far (keep in mind it was a big deal for me to tell some people and I was really putting myself out there when I did)
On the subject of my donation idea in general
“Isn’t donating blood enough?”
“This could be career limiting”
“That’s just a stupid idea”
“This is going to turn into some kind of Seven Pounds thing isn’t it and you are going to end up in a bathtub full of ice with a jellyfish”
“Do you think you have magic kidneys?”
“I think you just need a hobby”
On the subject of the fact I have thought it through/researched my decision
“I think you must have misread your research.  The risks of this sort of thing are very high”
“I don’t think you've really thought this through.  If you had you wouldn't be thinking about it”
“Just because someone donates an organ on Grey’s Anatomy Lauren doesn't mean you should do it.  You do understand that is a TV show right?”
On “Donating to a Stranger”:
“Who are you giving it to?...No I mean who....A stranger?  What do you mean a stranger? Why would you want to help a stranger?”
“Well that’s just selfish.  What if someone in your family needs a kidney down the road? You won’t be able to help them”
There has also been a small little group of people who aren’t negative-but they aren’t positive either.  It’s like what I told them went into a giant black hole never to be spoken of again.  These are people I interact with regularly and they don’t talk about it, ask about it and they never made a single comment when I told them about it.  They glossed over the news and in doing so have created a bit of the elephant in the room.
I know from previous life experience that life doesn't come with a manual. Our initial reactions to things are natural and we can’t always react "appropriately" to news that surprises us.  I guess what I don’t get is the aftermath-why so many of these comments are made after they've had time to digest and choose their words more carefully or why people don’t come back after they have reflected and try to “fix” any damage they may have caused.  I’m not referring to strangers here-these are people I know and consider myself to be close with.
In the end if any good can come from this relatively small ‘bad” part of what has been an overall positive experience, I would like to offer a couple of suggestions.  If someone is telling you of a major life decision they’ve made, organ donation or not, just listen.  Be honest and genuine but be sensitive.  Try to choose your words carefully and try not to leave them hanging (say SOMETHING!).You don’t have to agree with their decision but at the same time there is no good that can come out of making them feel bad about it.
And that's all the time I am going to dedicate to Negative Nellies.

Monday, December 13, 2010

What Causes Kidney Disease

I wanted to understand a little more about "who" I would be helping and what was wrong with their kidneys that got them on the transplant list. Outside of the personal stories people have shared with me, I wasn't sure what the common causes of kidney disease were.  So I made a date with Google and here are what I would say are the "Top 8" causes of Kidney disease.
  1. Type 1 and type 2 diabetes can cause a condition called diabetic nephropathy.  That’s the same thing with diabetes that attacks people’s vision, circulation, ability to heal etc. and the kidneys are highly vulnerable because of the filtration work they do. It is the leading cause of kidney disease in the North America, responsible for 1/3 of the people on dialysis.
  2. High blood pressure (hypertension), if not controlled, can damage the kidneys over time. The thing with high blood pressure is that so many people aren’t aware they have it so the damage is being done even though they “feel fine”. That's why it's the "silent killer".  If I do end up donating, this is why it will be imperative for me to see a doctor every year to monitor my blood pressure as there will only be one kidney left-it would fail a lot faster than two if high blood pressure went undetected for long.
  3. Glomerulonephritis (Wowsers-that’s a mouthful) is the inflammation and damage of the filtration system of the kidneys, which can cause kidney failure. Complications from infections (like bladder or kidney infections) and lupus are among the causes. Another way of putting this is "Infections Gone Wild".
  4. Polycystic kidney disease (PKD) is an example of a hereditary cause of chronic kidney disease wherein both kidneys have multiple cysts.It causes you to have enlarged kidneys as well which can cause trouble for your neighbouring organs like the spleen. This is what often puts children or young adults on the transplant list. For most if not all of these people its not a question as to if they'll need a transplant, but when (although in recent years many via special diets and medical attention have made it well past 30 without going into kidney failure).
  5. Use of analgesics such as acetaminophen (Tylenol) and ibuprofen (Motrin, Advil) regularly over long durations of time can cause analgesic nephropathy, another cause of kidney disease. Certain other medications can also damage the kidneys. I kind of wonder how many people are going to be hit with this in the next 20-30 years as these drugs have been pretty “regular” things in our lives.
  6. Clogging and hardening of the arteries (atherosclerosis) leading to the kidneys causes a condition called ischemic nephropathy, which is another cause of progressive kidney damage. This is the same thing that often leads to heart attack and stroke.
  7. Obstruction of the flow of urine by stones, an enlarged prostate, strictures (narrowings), or cancers may also cause kidney disease.
  8. The less “common” causes (but still relevant) of chronic kidney disease include HIV infection, sickle cell disease, heroin abuse, amyloidosis, chronic kidney infections, and certain cancers.
I found a cool page that shares a handful of people's stories, as told by them (voice not video) and their experiences with living with kidney disease.  I listened to them all and I have to say you'd be hard pressed not to relate to at least one of them.  They are all just regular people trying to have regular lives with kidney disease hanging over their heads.

Friday, December 10, 2010

The Good People

I promised when I started this blog that not only would it follow my emotional journey through this experience but hopefully it would also shed some light into the experiences that are "part" of the process.  So over my next few blogs I'd like to talk about my people experiences so far, good and bad.  That way if people who come across my story ever are considering doing the same thing, they get a snapshot of the pluses and minus of this process.  Today let's talk about the good.
I wrote in the beginning about my fears and nerves when it came to telling key people in my life about my decision.  As much as I have always seen myself as a very independent "lone wolf" kind of a person, obviously their opinions mattered greatly to me, hence my hesitation in letting them in on the secret.
Eventually the key people were all told and I felt a little more confident about my choice.  So I told a few more people. I'm still being selective in who I tell when for a few reasons.  The first is that you need time to have a decent conversation about it-its not something that lends itself well to elevator conversations.  And secondly I am still trying to get past my own shyness and unease with attention being on anything related to me.  As a result of this I think I personally have told about 15 people directly and a handful more have been made aware via Facebook.
I have to say I am absolutely overwhelmed by how much support I have been shown by so many people.  People have gone out of their way to share very personal stories about how kidney disease has impacted people in their lives. I've had more than one person (!!) tell me about how they themselves or their spouse have just one kidney and they are very healthy. There have been emails sent from family members and friends that have been filled with so much love and support I get teary reading them. I've also had at least a couple of friends share my story with their other friends via social media to help generate awareness and the need for more living donors. There was the crazy test Doctor and ultrasound tech who told me I was doing a good thing and wished me well so enthusiastically.  I had an amazing post dedicated to my story by Robin, a friend I haven't chatted with in over 2 years, on her blog. There have been offers from people willing to drive me to work after the surgery which isn't even a sure thing yet (I can't drive for a month). I have to say it kind of feels good as the "lone wolf" to turn around and see that I have such a wonderfully strong and supportive "pack" behind me backing me up.
Regardless of how this journey moves forward, I wanted to make sure I captured and paid tribute to all of you who have contacted me directly or even just supported in spirit by reading and following my progress.While there have been a few "negative nellies" which we'll talk about another day, the kindness I have received from people has been pretty awesome. 

Thank you so much.

Wednesday, December 8, 2010

Tests Without Results

Am I there yet?
In my lunchtime yoga class today i was pondering the "Kidney Stuff" (yes I know you are supposed to clear your mind in yoga but if you know me, that ain't happening.  At least I wasn't thinking about work).  I was thinking about how I kind of feel sightless in this testing process, as though I am wearing a blindfold or something. You see, despite all the poking, prodding, x-raying and imaging, you don't know where you stand or if you are moving ahead in the process until you get the next call from a whole new office booking another step in the process. I know with some certainty that the fact that I am moving ahead indicates I didnt epic fail any of the tests but were there any mini red flags? Am I in "normal" health or am I exceptional in any categories? 
It seems odd to me to have given over 16 vials of blood and not know a thing about what the results are. Same thing applies for all the other tests compelted so far.  Ok, I get that the x-rays just were to show that I did indeed have kidneys and that there were no heart lung issues from a tumour perspective-I didnt really need an update on that. And the ultrasound same kind of thing.  I don't know-I guess I was expecting maybe a weekly or biweekly check in from the transplant program to tell me where we are with things and what's coming up.  They did give me a list in the beginning but I've done all those tests already.  The coordinator showed me another list (I didn't get a copy) that had more of the phase 2 and 3 tests on it but things dont seem to be happening in the same order as her lists.  Like the psych test-that wasn't even on this list! The social work test was but at the very end of phase three.  But when the social worker found out I was seeing psych she panicked because I hadn't seen her yet! But when I told her I couldn't come and see her on a days notice so that I could see her pre-psych. she put our meeting off indefinately.  It's all very confusing and out of order.
I know the system is new and that these programs are all "learning" their way through this.  I am patient and I will surf my way through the system until they kick me out or deem my kidney(s) fabulous. Its just a little unnerving to feel like I am standing in the dark waiting for the next person to come along and shove me forward.

(P.S. If you use "Google Image" (what I often use to find free pics for this blog) and enter the term "Blindfold" some pretty kinky/naughty pictures come up! Good thing no one was watching me :)

Tuesday, December 7, 2010

Next Up-Renal Scan

In a little over a week I go for what I would consider to be a "phase II" test-the Renal Scan. The Renal Scan is by far the longest test I will have to do.  It involves three to four hours at Foothills (Special Service building-with the exception of the Cancer Clinic I will have been to every building on the hospital Campus after this).  They've gone so far as to tell me to bring a book.
This was also the first test where they have just "told me" rather than ask me when my appointment is and how I "have to" be there at a certain time. I guess because these second phase tests are more specialized and harder to book so they don't want to give me options in case I get picky. Although I would think most people wanting and willing to donate a kidney to a stranger are pretty "go with the flow" patient kind of people.
The test itself involves a lot of "hurry up and wait". It will start out with me being injected with very small amounts of radioactive materials (radiopharmaceuticals) which will track my organ function and structure, (which is different than x-rays which looks at anatomy). The radiopharmaceuticals are attracted to specific organs like the kidneys and emit gamma rays that can be detected externally by special types of cameras.These cameras work in conjunction with computers used to form images that provide data and information about my kidneys. The amount of radiation from a this procedure is comparable to getting an x-ray. After the first hour they'll take images.  Then I wait for another 2 hours and they take some more.  Each image session takes about 30 minutes. I'm not sure but they might do blood work each time too.
The good news is that I can eat and drink before and during the wait so I wont have to deprive myself of a morning coffee or even water or juice. I think I might even be free to wander the hospital during that time too so I can get refills! But just in case there is a gown involved I will load up my purse.
The other good news is that this is the start to a romantic long weekend with Charlie in Banff (a birthday present he got me back in October).  I so need a weekend away and I think this is our first solo weekend away which makes it even better.  As long as a few radiopharmaceuticals don't get in the way :)

Sunday, December 5, 2010

You've Asked, I'll Answer

As more people becoming aware of that I am doing, more questions seem to be coming up.  I think this is great as I am a big believer that knowledge reduces worry/fear and brings understanding and acceptance. So here are answers to just a few of the questions I have received:

Why are you doing this?
This is a big one. I don't really have a solid "two line" answer.  Its a good thing to do and I am in both a healthy and genetically safe place to do it.  If the transplant I take part in works (which there is a 95% chance of), I am saving a life.  I am also dramatically improving the quality of life for that person, giving them and their families a better day to day. So its quantity and quality thing!



Why help a stranger?
Another common one. In Ontario as of  March 31, 2009, the waiting lists for organ transplants totaled 1,667. The large majority were for kidney transplants (1,185), followed by liver (306), lung (64), heart (48), kidney- pancreas (37), pancreas (22), small bowel (four), and heart-lung (one). The first 2 groups can be helped by living donors in addition to cadaver donation (although not as ideal) but if they are on the reported list, its likely they do not have a match in their family or immediate social circle. So if you look at kidneys alone, in March of 2009 almost 1200 people in Ontario alone were depending on stranger like myself to come forward or for a cadaver donation. I know if it were someone in my family waiting for help like this, I'd be hoping for someone to find it in themselves to help a stranger.

Will it affect your ability to have kids?
I am pretty sure kids aren't in the cards for me for other reasons but this is not one of them.  I could have as many as I want with one kidney.

How does the "travel to donate" thing work?
If they opt to put me on the national registry (which I suspect they will want to due to my blood type), I may be matched with someone from another city/province and I would have to travel there. They schedule transplants every three months right now and I'd have at least a months notice of the actual surgery date. Not every hospital does transplants so it would likely occur at a major centre in Toronto, Vancouver, Halifax, Montreal etc. There are smaller centres in places like London, Lethbridge that do perform transplants but they likely wouldn't send me there. This is because the hospitals are smaller, making it harder to keep my identity and the recipient's anonymous which apparently is a must for the program before the operation.  Travel costs would be reimbursed by the Kidney Foundation of Alberta and some charities may also chip in assistance with things like flights, transportation etc. The program is very new so there are a lot of pilot programs that aren't "absolutes" for every case and may depend on timing and geography. Bottom line though is I wouldn't be out the money it costs to travel. I also wouldn't have to be in a strange city longer than about a week either (I know earlier in the process I was worried about a 3 week "no fly" rule"-apparently that's more if I was heading back to India or Germany or something)

Will you get to meet the recipient?
Before the operation no. I wont even get details on him or her. This is to stop me from changing my mind because of a preconceived idea I might have about who should get my kidney.  In other words I have to be just as OK with a 60 year old single man getting it as a 30 year old married mother with 5 kids. However they have told me that if after I am curious about who they are or if the surgery worked, they could shared some information as long as all parties agree. It sounds like its similar to my adoption search where I could opt to share as much or as little as possible and/or we could exchange a letter through the donor program or meet if all parties were willing.

More to come I am sure...

Saturday, December 4, 2010

Evaluating My Marbles

This morning was my psych evaluation at  the South Tower at Foothills Hospital (I think I have 2 more buildings left and then I have been in them all for this "Kidney Thing"). The purpose of this test was to make sure I wasn't textbook "crazy" and also to identify any psychological risks that might be increased for me if I was selected as an organ donor. In my case because I am a non directed donor, the interview was a little more simple as the doctor did not need to evaluate whether or not I was being coerced or guilted into donating by my family.

The interview itself was made up of several different type of discussion and short answer type questions.  I was asked a range of questions about my family, my relationship with my immediate family and their thoughts on my decision.  I was also asked about any previous experience I may have had with mental health which I talked candidly about (I saw a child psychologist when I was about 8 a few times, grief counsellors after my Dad's death and had a bout of depression in my late 20's that was untreated but resolved itself).  We also chatted about my propensity to worry about stuff.

We spoke about risks and regret and how I would feel if in 20 years I had issues with my one remaining kidney.  Would I feel regret?  Well yeah, a little probably but at the same time, you need to live with the decisions you make in life which is why you need to think things through before you make decisions, especially ones of this magnitude.  I feel like I am doing that by researching both the medical and personal experience stories out there.  I feel like this is an informed decision with calculated risks.
There was a brief question and answer period somewhere in the middle which was clearly a "CYA" (Cover Your Ass) for the doctor.  Do you hear the radio or TV speaking to you? Do you use IV drugs? Do you think you are being followed, think that your phones have been tapped? (I LOL'd to that one because if an imaginary person was tapping my phone, they wouldn't hear much of anything). Have you every been so happy you've scared people? Do you think you are God? Do you compulsively worry about doors being locked, things being put in their place, the stove being left on? (Another LOL there).

We wrapped things up talking about support from my family, my "people" here in Calgary as well as my work (check, check and check).  He ended with the option that he could write me a letter telling the program I was not medically fit and no one would question me wanting to opt out.  I said no and he said he wasn't surprised.
To be honest, I think I was most worried or apprehensive about this test as it is the most subjective of the lot.  A blood test is a blood test and your results either fall within normal or they don't-same thing with the x-ray and the ultrasound.  But a psychiatric evaluation is so subjective, especially in 45 minutes or less. 
The good news though is that I passed with flying colours.  He said we all would have risks in this situation from a mental health perspective but mine are on the low side and he feels like my self awareness mitigates a lot of that risk.  He said that he's be leaving a message for the transplant program that I was 100% cleared and would send the official letter once he is back from vacation in a week.

He added that in his practice he works mainly with people hospitalized for serious mental illness and also with people with serious, long term illnesses such as liver & kidney disease.  He said it's nice for him to see the other side of things from time to time and meet people like myself who are wanting to do something selfless like this. He said he thought I was an ideal candidate and it was a pleasure for him to have met me.  He thanked me for the opportunity to get to know me a little and said someone was going to be very lucky to get my kidney.

I'm still not sure I am comfortable with the "selfless" label or the feelings the doctor expressed at the end but I guess I'll need to get over that.

Wednesday, December 1, 2010

“Being normal isn’t one of my strengths"





"No Doctor, this is not what my kidney
 looks like in my mind..."
  Insane people are always sure that they are fine. It is only the sane people who are willing to admit that they are crazy. ~Nora Ephron

On Saturday I get to go for the "crazy test".  At Foothills they prefer the term "Psych" but either way, we know what they are after.  I will have to rein in my "One Flew over the Cuckoo's Nest" mannerisms for 45 minutes bright and early on a Saturday morning. At least I have 3 days to practice.

In all seriousness, from what I have read the psych test is really just an interview with a psychiatrist or psychologist-I can remember which one is covered by Alberta Health. The good doctor will just be looking to see that there is no coercion, history of depression etc that could jeopardize my emotional well being should the transplant move ahead. From what I understand, they also want me to have a realistic view of the outcome.  This is important for for altruistic donations I guess because I may not find out who receives the kidney or how it turns out in the end (I might though as they are loosening up guidelines around that should all parties be willing). They probably will dig to see if any major life event like a family death or something has triggered this decision. So in reality I should be fine.
It is funny but I think that being adopted has actually been the best preparation for this psych test.  I grew up not knowing my birth relatives and had to accept that.  Then in my 20's when I was given the opportunity to reach out to them through the Ontario government, I had to be prepared for the chance that they may be a) dead or b) unwilling to provide any medical information or c)they might not want any kind of contact.  I also had to be prepared that they might want contact but that they themselves might be crazy (I see a theme here! LOL). My point is that I am not donating a kidney for any reason other than giving a kidney and hopefully helping someone who needs one.  I am OK if I never find out where it went or if it worked. I am also OK if the recipient wants some form of contact whether it be a letter or an in person meeting.  I do have to say that I'd have to draw the line at the telephone though!!. 

We're all crazy and the only difference between patients and their therapists is the therapists haven't been caught yet. ~Max Walker

Tuesday, November 30, 2010

Awareness

I've never been much of an activist. I think I attended a rally once in university in Ottawa...something about protesting tuition hikes. I left as soon as the crowds started throwing macaroni at the federal Education Minister-the same guy they had been demanding come out and speak to them for over 3 hours.
That being said I have been a quiet supporter of charities via donations and participation in a handful of community events usually for causes that have directly affected me (like Cancer or Heart & Stroke or pet adoption agencies) or are near and dear to a friend or family members heart (like MS). So its kind of funny that the first thing I am really going to step into the spotlight on relates to something that has never impacted anyone I have known.
The more I read about Kidney Disease, particularly the need for more donors, the more I want to do what I can to help. I've learned in my many years of marketing that the best way to generate awareness about something is just to get people thinking and talking about it. And while it might take a little longer, if you start with the "low hanging fruit" which are the people already engaged with you, the discussion and awareness that spreads will be more authentic and have a longer life span than trying to get your message out to a world that isn't even looking for you to be saying something.
I know that donating a kidney is a serious decision and in no way have I deluded myself that I am going to convince anyone else to do this. Its not even something everyone can do. However if I can get people more aware of the need for kidney donors and how living donation isn't as risky or crazy as it might sound, then I will be happy. Its a start and at best it may mean a donation or two "extra" to the Kidney Foundation or some random chain of events that helps someone else.
Here are some facts about transplants with an Alberta spin (think of how crazy those doctors in 1954 sounded!):
1954 First successful kidney transplant performed.
1966 First successful kidney/pancreas transplant performed.
1967 First successful liver transplant performed.
1968 First successful heart transplant performed.
         First pancreas transplant performed.
1971 First kidney transplant performed in Southern Alberta at the Foothills Provincial Hospital.
1974 First living related donor kidney transplant performed in Southern Alberta.
1983 First successful single-lung transplant performed.
The first medication for treating transplant organ rejection was introduced.
1986
First successful double-lung transplant performed.
1987 First living unrelated donor transplant performed in Southern Alberta.
1988 First successful split liver transplant performed.
1989 First successful living donor liver transplant performed.
1995 First laparoscopic nephrectomy performed on a living kidney donor.
1998 First simultaneous kidney/pancreas transplant performed in Alberta at Foothills Medical Centre.
1999 First pancreas after kidney transplant performed in Southern Alberta.
2001 First laparoscopic nephrectomy performed on a living kidney donor in Alberta at Foothills Medical Centre.

Sunday, November 28, 2010

A Thumbs Up From Grandma

The most awesome Grandma
in the world (and my brother)
I got a call from my Grandma today. Seems she was out for lunch with my mom, my aunt and my uncle. My mom let them know what I was considering.  I hadn't told my grandma yet for a few reasons.  First of all she is 86, my biggest champion and I don't want to do anything to wreck that.  She also worries about everyone and everything. She's had a bit of a tough year and I didn't want to add to that by making her...well worry. It turns out I didn't need to be concerned.

Grandma let me know how proud she was of me and what a good thing she thought I was doing.  She mentioned that her financial planner's wife got a kidney last month-like it was an everyday thing.  She has been waiting for at least 8 years.  They have 2 teenagers and basically they haven't been able to travel or do anything families do for over 8 years because of her dialysis. They have machines in the house and everything for it.  A month after her transplant, she is a new woman. She is off dialysis and her machines at home can now go to someone else who needs them (I didn't realize that in some cases there are even waits for machines in order to do dialysis at home but that makes sense as I imagine they aren't cheap). Its amazing how many people I am coming across who know people affected by kidney disease.

I made sure to tell my grandma how worried I was that she would worry (gee, where do I get my worrying from!) and she said "Laurie, I worry about everyone and everything all the time anyway.  Its nice to have such a positive thing to worry about". She also made a comment about how its typical Lauren to plan to do something like this and be so quiet about it...not want any fuss or talk about it.  I told her this time I am going to be different.  I want to talk to people about it and I want people to ask questions. I would like people to understand and at the very least least not look at people sideways when they say they want to do this.  So in the coming days and weeks regardless of how my donor eligibility goes, I am going to star spreading the word.

Grandma reminded me of something I said to her in the summer when I was in Ontario for a visit. I had told her I had a feeling there was something else I was supposed to be doing in my life, there were important things I still needed to do but I didn't know what they were yet. But that I would know when the choices were in front of me.  The more I think about things the more I think this is one of them. Grandma agrees.

Saturday, November 27, 2010

Take a Number

strict nurse cartoons, strict nurse cartoon, strict nurse picture, strict nurse pictures, strict nurse image, strict nurse images, strict nurse illustration, strict nurse illustrations Today was one of those days where I  was cursing the health care system...not because its government run and has moments of inefficiencies but because I think I had to deal with 5 or 6 of the grumpiest, nastiest people in Calgary.  The test I needed today was to measure the glucose in my blood 2 hours after eating.  You cant make an appointment for that nor can you be a walk-in to take a number.  You have to go in, tell them you wont take a number but you don't have an appointment.   This seemed pretty straight forward to me...and being as this test is used to monitor for diabetes, it cant be all that rare.  So imagine my surprise when the lab at "Sloane Square" seemed angry about my visit there this morning.  To add to it both the transplant centre people AND the appointment hotline (Calgary Lab Services) told me to eat, come right to the lab and sit for an hour and a half.  So I did.  Much to the annoyance of one Grumpypantess at the lab.


"You are way too early.  Why would you come this early?"
"They told me to on the phone and at Foothills"
"Well you should just go shop or something because we can't deal with you yet"
"That's fine I'll just go read my book"
"Do what you want".

So for an hour and a half I did just that.  Finally it was time to go back up to the counter of warm (hostile) faces.  A new lady was there. Let's call her the Number Nazi.

"Do you have an appointment?"  I opened my mouth to start to attempt an answer.
"Take a number!!" She barked.  Thankfully one of the other ladies saw me and said "No don't-I will help you when I am done with this lady". The other lady looked irritated "Oh you have been helped?".  I thought no but someone who doesn't hate people is about to.The nicer lady at the desk was quite helpful and did my paperwork.  I took a seat and waited for my name to be called. 

The Number Nazi came out and yelled "Lorraine?  Lorraine Henswell?"  No one moved.  My name has been butchered in the past but really?  This much?  I timidly asked "Do you mean Lauren??" "Ohhh.  Yes" she sneered.  "My apologies".

I was brought to a room where I was told to wait.  Eventually a man walked past the room...the Number Nazi told him he should be helping me next.  He looked at my paperwork from about 6 feet away and barked "She doesn't have an appointment-appointments first!" and walked away.
A few minutes late he circled back and apologized for the wait and told me I wouldn't wait had I just made an appointment (I wasn't complaining!!).  I told him I couldn't make one.  He insisted I could.  After a bit of back and forth he actually looked at my forms and said "Oh...no you can't" and looked nervously at his watch to see if the 2 hour mark where they were supposed to take my blood had passed.  Thankfully it hadn't.  He then tried to still lecture me on how in general its better if people make appointments when they can and explained why my type of visit disrupted things a bit.  I listened but then politely pointed out that none of that was my fault or really my problem and it wasn't great to be treated as an irritant by a team of professionals. He responded by reminding me I needed to pee in a cup before I left. 

While hanging out in the waiting room and then going through this less than positive experience today, I realized I'm in a unique position. Going through the health care system as a totally healthy person brings an interesting perspective. Sometimes I'm treated differently (better) and other times I'm not. But what it gives me is a a really objective look at things because I'm not worrying about what's wrong with me or stuck in a waiting room feeling sickly or in pain. It gives you the freedom to just observe while legitimately using the system, which for the record I still think is pretty awesome.  I'm not saying it's perfect but if seems far superior than the alternative to the south. With all the medical fun I've had in the last few weeks between this and Charlie's mysterious joint ailment, I shudder to think what this would cost in a land where not everyone has the same access to health care. Somehow bad treatment from service providers is easier to tolerate when its free.

Friday, November 26, 2010

Friday Facts

I have taken the liberty of gently lifting some facts coloured with opinion on this subject from a website I found called "Kidney Mama".  Sometime people have already said something as well as you could ever hope to so why re-invent the wheel right?
  • There is no kidney shortage. We have about 300 million excess kidneys in this country (Note from LH:  She is talking the US but we can scale it down for us Canucks) walking around in people who think that donating a kidney is a huge surgical undertaking (it isn’t) and doesn’t make that much difference because people can survive just fine on dialysis (they can’t).
  • Organ donor cards will never solve the kidney shortage, because very few kidneys from deceased donors are usable. Until we can grow kidneys in a lab, living donation is the only viable option, no pun intended, for retiring “the list.”
  • The medical profession needs to wrap its brain around non related donors and find a way to make the donation process more accessible to them. Do outreach to encourage living donation! (Read more about the reasons for the medical community’s discomfort with stranger donors in this Wall Street Journal piece from 2007.)(Note from LH:  We are actually much more medically open here in Canada although I do believe more steps could be taken to make people aware that it is an option here.  I do understand though why the medical community is leery of taking a perfectly healthy person and removing their kidney-it does go against their oath to a degree))
  • It is ludicrous and unethical to let thousands of people die each year for lack of a kidney because it is supposedly wrong to compensate donors. Countries that legally compensate donors have no waiting list.(Note from LH:  I don't think I should be paid money for the kidney itself but costs like travel etc should be paid by the healthcare system, insurance or the government)
  • It is not theoretically possible to save someone’s life for “the wrong reasons.” It is always the right decision to save someone’s life if you can.
  • Kidney donors are not superhuman heroes. “Hero” puts a person on a pedestal as different, and lets people avoid considering that they could do what that person did. Kidney donors are ordinary people who were bold enough to step up and do something truly loving and obvious. Of course one should save another’s life. Of course.
So there you go.

Thursday, November 25, 2010

Moms the Word

Making the decision to have a child is momentous.  It is to decide forever to have your heart go walking around outside your body.  ~Elizabeth Stone

I called my mom tonight and told her about my potential plans. Despite the fact I could tell she was uncertain and worried, she was very supportive.  She listened, asked questions and tried to understand why I would even think to do this.  She said it might even be worth another trip to Calgary (Ha!).  I am surprised how well she took it to be honest.  But really everyone's reaction is surprising me in someway; everyone I have told has said or done something I wasn't expecting based on my previous experiences with them. Interestingly enough, the men are the most "on the fence" or aloof  or critical of the situation. Granted I've only told three but its not looking good here guys! The ladies on the other hand have been overwhelmingly positive and supportive wanting to learn more.  They have also all offered to help if they can. I am not ready to make assumptions based on gender but if the shoe fits....

I am glad I've told her and am thrilled she reacted as well as she did. There are a few others I'd like to tell before putting this blog "out there" and that likely will have happened right around the phase one test results coming back so it will be good timing-if I am not eligible to move ahead there won't be anything more for this blog to tell right?

Funny side note.  A coworker I told my plans to yesterday actually read this whole blog last night.  My boss, John, said that if I got people to read my blog and comment, that would be almost the same as "being published" as far as my Part B goes at work.  While I am fairly certain he would say "Sally"doesn't count, it is pretty cool that I almost obtained a personal goal within a day of forming it!

Wednesday, November 24, 2010

Personal Goal: Donate a Kidney?!

I bit the bullet today and finally told my boss about all this.  I didn't really know how to work it into conversation over the cubicle wall (not!) and calling a special meeting was a bit much so I somehow rolled it into my "Part B" meeting today.  Our Part B's are essentially where we set our goals and KPIs for the upcoming fiscal year at work.  So it went a little something like this:

business,businesswomen,occupations,paperwork,people at work,persons,Photographs,women
"Ensure 95% internal client satisfaction"
"Ensure 100% accuracy in all marketing materials"
"Personal Goals: Donate a kidney"

OK it wasn't exactly like that.  But not too far off.  We are supposed to set personal goals.  Every year I haven't and he's pointed that out.  Its not that I don't have them; I just don't see the need to fill them out on a form at work.  This year he anticipated my shoulder shrug and he made four up for me.  The first was very fitting although surprising.  He wants me to publish something.  An article, a letter to the editor or if I'm really a keener a book.  He seems to think I could do that no problem.  I told him about always wanting to start a blog but never being able to narrow it down to a subject that I would repeatedly have something to talk about.  I almost told him about this then chickened out.  After we discussed the rest of my goals (read a book I have always wanted to read but haven't and organize my schedule(?!?)) the meeting seemed over so I somehow awkwardly blurted out the "kidney stuff".  I thought my heart was going to pound out of my chest! I dont know why but telling him was far more stressful than anyone else.
I can't really read what his reaction was.  He seemed so neutral about it.  Like he didn't know what to say or what he thought.  I kind of expected him to have an opinion either way but it didn't seem that he had one.  I know he must have one but I have no idea what it was.  He mentioned about confirming with HR that benefits wouldn't get screwed up but that other than that he didn't see an issue from a work perspective.  Just weird. Oh and he did suggest as an afterthought maybe the "kidney stuff" should be a goal listed on my Part B.  The KPI is pretty easy-in a year I either have two kidneys or I have one.

Next step...tell my mother somehow.

Monday, November 22, 2010

Test Day #1

This morning after 12 hours of fasting I bundled myself up (its -30 with the windchill!!) and slip-slided my way across town to Foothills Hospital for my first round of screening tests.

I started out getting some lab forms and heading down for blood and pee tests.  Yahoo!  They seemed irritated they had to enter so many tests into the computer first thing in the morning! I had to laugh at the eight step instruction poster on how to pee in a cup posted over the toilet-eight steps!  In addition to that I had 14 vials of blood taken out which I think is a record for me.  They tested everything from cholesterol to glucose fasting to HIV and Hepatitis.  I know its the most thorough testing I have done which in some ways are nice-good to know how healthy you are without having to get sick to have tests ordered, right?

After that I headed up to chat with the transplant coordinator.  She was really nice and answered a lot of questions I had (which I will likely get into in later posts).  Because I am a non-directed donor, its likely that I could end up saving someone who had a high chance of not receiving a kidney. This is especially true for people who end up being matched over the National Registry.  She said last year the registry matched and performed 80 living donor transplants...a few years ago that never would have happened and a large number of those people would still be waiting or would have passed away. She said the registry is really helping ensure that more people get what they need and that the sickest people or those who are hard to match have a better chance at being helped.  She had a lot of great information and really made me feel good about the process but not pressured at all. She said right up until they put me to sleep to take the kidney I will be asked by everyone I talk to if I really want to do this.

I then had to head over to Emergency to get an X-Ray.  There was surprisingly no line up which was nice.  The tech was a little irked about the lack of info on my requisition form. He asked what the X-Rays were for (as in what they were looking for) and I told him I am a possible kidney donor.  He immediately became about 100% nicer and they got me in and out of there very fast.


After that it was off to Cardio in the main building.  I have a feeling I am going to be well acquainted with Foothills by the time this is all done.  I checked in there and was told to go sit in the "blue" chairs.  I was almost thrown off by some aqua coloured chairs in the same hall but spied some truly blue chairs a bit further down.  I wonder how the colourblind folks do with those instructions.  I don't think I was sitting on the chairs more than a few minutes when they came to get me for my ECG (which measures the electricity in your heart/body I believe).  The lady who ran that test was really nice.  I told her why I was there and she seemed very impressed by the willingness to donate an organ.

She mentioned that despite working in a hospital, most people there never give it much thought. She lamented that they probably should more.  She spoke of an accident that happened in the last 6 months (it was all over the news) where a young woman had died when a transport truck brake drum on the highway was kicked up by another vehicle and flew into the woman's windshield. The ECG lady told me that the woman (who was brain dead) donated everything. She said that they were busy over the following few days even in her department, I assume doing heart tests etc on recipients for the organs.  She said she met several of the recipient patients and families and she realized how much of an impact that one woman's (family) choice to donate her organs was making on so many lives.  She said she regrets not thinking about it more herself before that. I think its something we're all guilty of-you just get caught up in your own day to day and don't think about stuff like that. And realistically not everyone is going to choose to be a living donor but at least we can let our families know what to do in the event of a brain death.

My next steps are to do some "homework"-blood work to do on my own steam which I will try to do this Saturday, and an ultrasound.  That's been booked for next Tuesday.  After that, once they've looked at all my results, I will know if I've passed phase one or not.  Assuming I did pass phase one, I would then be scheduled for a Renal Scan which is a 4 hour test involving dye and peeing in a cup a lot.  After that I would go for an MRI to map the anatomy of my kidneys (how many blood vessels and arteries going in and out).
The whole morning quite frankly made me more excited about the idea of this.  Nothing is for sure of course and even the timing of it could be anywhere from say February to next summer but it definitely seems more real.  I am really glad I opted to explore this further.

On a happy note, Charlie has really turned around on this whole topic.  He called me today at work to see how the tests went and listened to some of the stuff I had learned.  What a relief.  I know I need his support on this and it looks like I have it.