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Monday, June 20, 2011

When Patience Flies Out The Window

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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April 6, 2011

Here I am.  Mid morning, the Wednesday of "early the following week" in which I was supposed to hear from Foothills about the last round of test results. You may recall that I was told (after I followed up because I had heard nothing 3 weeks post tests) a best guess option of when I might hear back was "late next week" or failing that, sometimes early this week.  So here we are.  Now I'm not going to get into the semantics of the fact that we are no longer in the "early week" period because frankly it doesn't matter any more. I am FRUSTRATED. I am sick and tired of wondering, of shrugging my shoulders when my friends and family ask what is going on with the "kidney thing". I find myself no longer able to come up with excuses in defence of the Living Donor program and what is starting to seem like a lack of organization or appropriate resources rather than a side effect with the program being new.

I must stress that absolutely they do good work and every life they help/save is priceless and cannot be measured by any satisfaction survey or performance evaluation. I have not a doubt in my mind that medically, when my chart is in front of them and I am top of mind, they have my best interests at heart. But right now, I feel like I'm sitting on a shelf somewhere there, waiting for a time that Dr. N or someone else gets around to looking at it and then gets around to making some kind of decision which eventually, once they get to it, they'll call and share-or better yet book a meeting to discuss-more waiting.

Part of my frustration of course lies in the waiting to know if I'm a donor or not.  But now the other part is more about communication. If Dr. N was away or too busy or sick or whatever is causing the hold up could they not call and let me know there will be a further delay? Why am I chasing to find out if I am eligible to donate a kidney? Two weeks is one thing but when you are speeding towards the six week mark it makes you wonder. About a lot of things.

Remember one of my blood tests came back higher than normal in c-reactive proteins? Remember they said that could mean anything from cancer to a mild random infection? Or lupus. Or some kind of liver issue. Could be nothing or it could be something. At this point I'd hate to think its was "something" and that too has been sitting in a file somewhere for 5+ weeks.

I had a friend make a comment the other night that its a good thing they don't take this long to make a decision about "dead people" kidneys/organs because no one would ever get one. I do respect the fact that because I am alive, they need to be a little more cautious about what my future holds with one kidney but at the same time he had a point. Someone needs my kidney.  And if I am indeed eligible to donate, this just prolongs the waiting for that person.  If I am this frustrated with the process I can't imagine what its like to wait, on dialysis, indefinitely, for a kidney to become available. I wonder how many people on both sides just get tired of waiting and give up.

The bottom line is this: I am a patient of the program in some way, shape or form and I have been left hanging. While I don't think I'd be impressed by any excuse as to why at this point, I'd love to hear one because then at least it would mean they had communicated with me.

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