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".