Friday, January 14, 2011

A Forced Choice

Yesterday I was forced to make a choice.  I was given the option of being eligible to continue in the Living Donor Program OR being able to continue writing my blog.  If I want to donate my kidney and help a stranger, I can't talk about it in a blog, using social media or via traditional media.  This mandate was handed down by my social worker for one of the larger organizations tied to the program. I hope that they will entertain the indiscretion of this (last) post as I wanted to let everyone know why there would not be any more posts for awhile.

Because the end goal of helping someone is the most important thing to me, I decided to respect and comply with the request although I will continue to work with them, review their policy and determine if there is any room for compromise.   I do feel, in my opinion, this was not handled well-ultimatums never feel good especially in a situation like this. However the reasons for this policy, although not completely clear to me, must be in place for a reason.

I do regret the fact that I have lost what is a very important personal channel for me to voice my opinions, my feeling, my concerns and my experiences while I go through this journey.  I also regret the fact that this policy decision has destroyed a primary method of  communication to friends, family and coworkers who care a lot about me and are following my progress from across the country.  I deeply regret the lost opportunity to educate people about the process, as it happens and to generate awareness for the thousands of people living with and dying from kidney disease.

I do not regret my decision to donate.  I would not have made the decision without, in part, the education and understanding I have gained from reading the many blogs and stories, both Canadian and American, I have read in the last five months. I hope that at some point, people who develop these kind of policies are able to better weigh perceived risks with actual benefits such as awareness, increased living donations and better support for people who opt to start along this kind of path.

I am able to write about my experiences after it's all said and done....I will be doing that.  In the meantime, thank you for your interest and support-it has been wonderful.



  1. It seems counter-productive for this organization to hand this mandate to you. A smart, more forward-thinking organization would welcome your insight into their process, and "use" your story as a way to promote organ donation. Your posts to date have been thoughtful and honest, and have probably at least got readers thinking about the idea of organ donation. What a waste for them. You should be used as a resource, not silenced.

    I'm glad you're still going to donate.

  2. I think you should continue to write in the same fashion that you have been, but just not post them. Then post the entries when you are able too.

  3. WOW are you still allowed to talk to your friends and family too? This decision doesn't make any sense to me - can we make complaints on your behalf?
    As one of your friends from far away I am really sad not to be able to hear updates from you. I've been so interested to hear how it was all going and your posts were making me more comfortable/accepting of your decision to donate your kidney. It seemed so scary when you first started talking about it -I had never heard of anyone actually doing this for a stranger.
    So your blog entries have really made me aware of so many new concepts about organ donation. I'm really sad for you too not to be able to express yourself. What a wasted opportunity for raising awareness.

  4. It breaks my heart to read this.

    Seems that the loudest voices heard in our world are the ones that have caused us the most pain, yet God gives us people like you who want to give the gift of life to others and we're commanded to stifle our voice. Shame on them.

    You will come out on top, and don't let politics stop you from pursuing what I can assure you will be one of the most fulfilling experiences in your life.

  5. I too do not understand this rationale. It seems a waste to lose this as a medium for others to learn. It is not as if you are profiting from this except to keep us all informed. I agree you should keep writing in the moment and then post when you are able. I am also glad you decided to continue in the program - I am sure your prospective recipient knows nothing about this rule and would be equally annoyed. I look forward to future posts no matter when they come!

  6. Wow, what a strange thing! But you're right -- this policy must be in place for a reason, however strange it might seem. You certainly made the right choice, in my opinion, to continue to pursue your donation, but it must be very frustrating for you.

    I just started following your blog and was reading it with great interest. It's too bad the communication will cease for now :(

    I wish you continued success with your quest to donate a kidney!