Monday, June 28, 2010

may the testing begin...

My decision to become a living kidney donor gives me the option to donate to a specific individual that I may personally know (whom I might be a match for) or, be a non-directed donor to a recipient that would essentially be a stranger. My hopes are that I might be a candidate for a never ending altruistic donation. It appears complicated at first, but if you view this short animated diagram, it explains in simple detail exactly how this donation chain happens. If it’s possible to donate to one recipient and allow an opportunity from that transplant to set off many others, I would be crazy not to be a part of something that could help so many others. As I mentioned in my earlier post, Cara was an altruistic donor that set off one of these chains. At this point in my journey I have no way of knowing if this will be a possibility for me as well, but I am hoping and praying that this opportunity becomes available.

Having made the decision to be a non-directed donor, my next step was to complete a Medical Certification Form from the National Kidney Registry. This form features the many blood tests, and a 24-hour urine test, that I must have completed by my primary physician here in town. I made the appointment to visit my doctor immediately after downloading the form. I remember telling my doctor “Please don't think I'm crazy but I have something to tell you.” I shared with him my desire to be a part of this process and was curious to get some feedback and opinions from him as to what his thoughts were. He expressed his support, and I was back in his office on May 11 to complete the blood work.

Along with the blood work required for this initial basic set of tests, is a 24-hour urine capture. What? I know, that’s what I said. Bottom line is that for a 24-hour period, I have to save all my urine and keep it refrigerated, right next to my eggs and milk. I needed to pick up the container at another office and was a bit surprised when they handed me what seemed to be no more than a quart-sized container. I looked at the nurse and laughed and said, “oh, that won’t do, I will need at least 2 of those.” The last thing I wanted was to be without a container after filling one jug and having to reach for a half-empty pickle jar to complete the test. Well, I can say that upon completion of this fun test, I barely filled 1/4 of one of the jugs. What the hell was I thinking, being all Superwoman-like, as if my urine was all powerful and so strong! I’m sure a Yoo-Hoo jar would have been sufficient.

I received a phone call from my physician on May 17 with some positive results from all my tests and felt relieved that he didn’t find any red flags that might eliminate me at this stage. At this point in my process, I was put in contact with an administrative coordinator, Diane, at the National Kidney Registry. Diane was my liaison with the NKR to ensure that my paperwork was being received and evaluated. She was extremely helpful in answering more questions I had about the process and also filled me in some more on the actual surgery, should I be considered as a donor. On May 25, the NKR still had yet to receive my blood work results and I was growing impatient. I called my doctor and asked the secretary to fax ME the results and I would then forward them to the appropriate department at NKR. On May 26, I received an email from Diane confirming the paperwork was received. Now I had to wait for their medical board to review the results. Tick, tock, tick, tock....

On June 3, I received an email from Diane stating that the medical board had reviewed my results and everything looked good! I almost peed my pants!! I was so relieved, excited, anxious and happy. From the beginning of my contact with Diane I had discussed my wish to have my surgery with the team at Weill-Cornell. Diane then put me in contact with a Transplant Assistant with Weill-Cornell who would be handling my case with the team there. After exchanging some emails and a phone call with Julie, I requested a date to go to New York to begin my tests and be evaluated as a potential kidney donor. On July 13, at 9am I will begin what will be approximately 8 hours of medical tests and a psychiatric exam. I can’t remember a time when I have been this excited to visit a doctor!

Until next time... it's summer, don't deprive yourself of one of life's simplest of pleasures - ice cream!

Tuesday, June 22, 2010

baby steps

As I mentioned in my earlier post, Harvey Mysel from the Living Kidney Donors Network, was instrumental in providing me with the information I needed that led me to the decision to be a living kidney donor. Harvey established the LKDN after recognizing the need for better resources while pursuing a successful living kidney transplant in 2006. If it wasn’t for his patience and his generous time with me, I know that I might never have taken the steps forward to get me to this point where I am now.

One of the most important factors in my decision, was the ability to be able to talk with a non-directed donor so that I might get all the information I needed, straight from the horse’s mouth - so to speak. The internet will only provide data that is in the best interest of the organization in which you seek to retrieve information. I wanted to build a relationship of sorts with another woman that I knew would be honest with me about her journey, not just a voice behind the process to convince me to hand over my organ. Harvey was kind enough to make a connection for me, and that angel is Cara Yesawich.

Cara lives in Chicago and I was so anxious to talk to her, as we had been emailing for about a week. Excited to finally hear her voice, I was a bit hesitant to get involved in the conversation for fear she would tell me something that might spook me. I didn’t want to hear anything that might create a wave of fear and cause me to terminate my progress towards being a candidate. I can honestly say that my reaction to her story was just the opposite. She was so candid, kind, informative and knowledgeable. I was elated to find her to be as enthusiastic about her journey, just as much as I was about the prospect of being able to donate my kidney. Cara’s story was so inspiring and beneficial to me, and I know it’s because she shared with me the good, the bad and the ugly. I was lucky enough to start my correspondence with her prior to her transplant surgery, which enabled me to get a feel for her emotional state both prior to, and after. Cara was an altruistic donor - a domino that set off a kidney pairing that enabled 8 people to receive a kidney. Calling her an angel is an understatement. I encourage readers to visit her blog to explore her story. She has been such an inspiration to me and I value this new friendship.

Harvey also made a connection for me to another non-directed living kidney donor, Hope Preston. Hope lives in New Jersey, and she too had recently recovered from her surgery. Hope was so informative, providing me with a written journal that gave me detailed day-by-day progress up until and after her surgery. Hope’s transplant surgery was at Weill Cornell Medical College, in New York. She was very pleased with the care and treatment she received there and had suggested that perhaps I look into the possibility of moving forward with that hospital as opposed to a local one here in Albany. So, I began researching more into that option. Hope gave me contact information of her administrative coordinator at the National Kidney Registry and suggested that should I decide to choose Weill Cornell, that I might give her a call. Hope’s speedy recovery, and her positive experience with her transplant team convinced me to work directly with Weill Cornell. Hope too, has been such a positive influence in my decision-making process, and I owe her many thanks for her time, kindness and patience with my inquiries.

On Monday, April 26, 2010, I made the decision to register online at the National Kidney Registry to be considered as a donor. My homework was thorough, and establishing a relationship with Cara and Hope, only solidified my decision. My first step in the process in becoming a living kidney donor was complete and I have to say that it was probably the best decision I have made in a long time. My internal spirit was lifted and I knew that my journey had only just begun.

Until next time... start each day with a big stretch and a glass of water - you will feel refreshed and better prepared!

Thursday, June 17, 2010

just getting started

The past 8 months of my life have been some of the darkest. I wish I could support that by sharing some tragic story that disrupted my life in a way that would warrant such emotional emptiness, but I don’t have a story. After some very deep soul searching, I came to terms with this darkness and realized that I was experiencing nothing more than a loss of meaning and fulfillment in my life. Realizing this was the first step, finding a way to get me out of my funk was the second.

I have a wonderful and supportive family I adore and that loves me very much. I’m surrounded by some of the most caring and dynamic friends a person could ask for. I have a beautiful apartment, a feline companion, a job and a very financially responsible lifestyle. What more could a girl ask for, right? I often found myself at the end of the day wondering what significance my existence had in regards to another’s life and well-being. I wanted to be able to experience what ‘giving and sharing’ was really all about. How could I make that happen without depleting my life savings to aid one of many charitable organizations, or contribute several additional hours weekly of volunteer work in addition to my already filled schedule? These were questions that nipped at me for months.

Anyone that knows me well, knows that the most important thing in my life, that continues to be the one thing that provides me balance and well-being, is my health. A day doesn’t go by that I don’t feel blessed that I have the ability to move my body daily, pain-free. Oddly enough, the more I began to feel blue about my life, the more I felt even better about my health and fitness. Suddenly the answer to my question became obvious - I want the ability to share my good health with someone that desperately needs it, but how can I do that? Ironically it was during this time that a conversation with a co-worker piqued my interest as he was sharing a story with me about the frustrations of a relative enduring multiple kidney transplants that eventually were rejected. Curious and craving more information, I hit the internet that evening and Googled ‘kidney donation’. Two hours of research online and I just knew that I had finally found the answer to my question. I can give my good health to someone who truly needs it by donating my kidney!

On April 9, 2010, I began my journey. After posting queries on Facebook, of all places, I found a contact that could answer my questions on how I could begin this process. Harvey Mysel, Founder & President of the Living Kidney Donors Network, responded to my post and it was then that I truly felt that my life was going to change. Harvey provided me with a wealth of information, contacts and resources to get me going. I have him to thank for bringing this opportunity to my life.

My intent of this blog is to share my experiences of this journey, to help educate others that might want to be a part of a living kidney donation, and to also spread the word of just how important this is to the lives of approximately 80,000+ people waiting for a kidney transplant. I have much to share and hope that you will come follow me.

Until next time... challenge your body daily!