Sunday, December 12, 2010

support, please? - part II

In my lifetime, I've found most often that any support I've needed has come from immediate family members or very close friends. After all, they know me best and the trust and loyalty I need from them has been well established for many years. So, I guess I would say that I would never imagine that I would seek support from someone that I had never met before, yet alone ever spoken to.

As I began my journey of donating my kidney, I found that I didn't have a choice and would need to look elsewhere for this support. I wanted to find others that would be able to give me the knowledge, information, facts and honest opinions to all my questions about kidney donors, and their experience. As much as I love my family and friends, there was no way in hell they would be able to help me with this. They weren't even aware at this stage of my journey, so seeking support from them was out of the question. I needed a new friend and mentor to be there for me when I was 'stuck' with crazy questions about everything ranging from how to successfully accomplish my 24-hour pee tests to filling out the numerous documents required.

I had spent many hours doing research on living kidney donations and at this point I was confident that I had collected all the information I needed to feel comfortable with the actual surgery. What I didn't have was information about the personal and delicate questions that any patient is hesitant to ask of their physician.  I knew there were many tests to come, prior to my surgery, and then I also knew that recovery would be another area I was lacking information about.  When I connected with Harvey Mysel (Living Kidney Donors Network), I asked him if he could possibly provide me with contact information of other living kidney donors. My thought was that if I could talk to others that had been there and done that, I would be able to absorb the entire experience more thoroughly, through their words. Harvey suggested I contact two donors; one was a woman from New Jersey who donated in March of 2010, and the other was a woman living in Chicago that was going to be donating in the upcoming weeks.

I didn't delay the connection I needed with them for even one day. My first phone call was to Hope Preston. Hope lives in NJ and donated her kidney at the same hospital where I would eventually end up having my surgery. She was so kind and helpful, providing me with the answers to the questions I had about Weill-Cornell specifically, and also sending me a copy of a journal that she kept detailing her daily progress before and after her surgery. This was extremely helpful and it really broke down the experience much more clearly for me.

The following day I called Cara Yesawich, the other donor Harvey told me about that was soon to have her surgery. Little did I know just how much this woman would become a part of my life. I new she was someone special after the first phone conversation we shared and I also knew that she would be the mentor and friend that I needed during this inquisitive time for me. Cara provided me with all the answers I needed, even the most embarrassing and personal ones. I felt so comfortable talking with her and never hesitated to ask her something regardless of how stupid I thought it was. I think knowing that she honestly didn't mind helping me was a huge relief. I never once felt as though I was bothering her and got a positive vibe from the beginning, that she truly cared. 

For those that are in the process of becoming a living kidney donor, please request a mentor if you find you need someone that can be there for you who has lived the experience. You will be so relieved and comforted just knowing you can rely on a buddy that will give you guidance as you progress through your journey. I'm persistent when I want results, and I will be assertive to get them. One thing you won't find in all the literature you receive is answers to questions (honest answers) about pain, scarring and digestive difficulties during recovery. Ya know, all the poop questions. What about all the mobility challenges I would encounter after surgery? I never even thought of that. Cara prepared me for the little struggles I would have like preparing meals and getting in and out of bed. I also would have never known if all the weird things spinning in my head immediately before surgery were natural. All these thoughts were so easily dismissed in my mind with a quick phone call or email to Cara. The discharge papers they hand you when you leave the hospital are about as informative as a clue on a scavenger hunt. It's a joke, really, and I can't tell you how much post-op information I got from Cara, daily. She was my angel, and still is.

So, should you be in the beginning stages of your donation, I urge you to find a mentor. The Living Kidney Donors Network, the National Kidney Registry, Living Donors Online, Cara, and myself included, would be more than happy to help you with your questions. We are not doctors, and don't claim to be, but during such an important experience in your life, you have the right to ask virtually anything you want. And, you have the right to get an answer, with a lot of support and care packed into it.

Thank you, Harvey, Cara, Diane, Robyn and all the other donors that were there for me when I needed support - when I needed a friend.

Until next time.... hope you're all enjoying the Christmas spirit.