- Chicago, Illinois, United States
- Make Life Happen! Welcome to all of you who visit. If you are looking into becoming a Living Donor and would like a detailed idea of my journey..scroll down and begin with the older posts first. I welcome any questions or topics that you would like to know more about.
Sunday, April 28, 2013
Three Years After Donation
Its been three years since I donated my kidney. It seems like yesterday and with time I continue to grow and learn more and more about living donors. Many of you know that I am part of a group that started a non-profit called the Living Kidney Donors Alliance. We started this because of the tremendous need for other potential living donors who wanted the opportunity to speak with someone who has been through the process. I have been honored to mentor over 30 donors now and my kidney family continues to grow. For those of you considering donating a kidney to a loved one or be a non-designated donor like I was I truly hope you will take advantage of the numerous people in the the group who have been through this journey. So what have I learned? How important it is for potential donors to have access to what we call an "independent donor advocate". Someone who does not have any ties to the transplant center who can help guide you before, during and after your donation. I am not a medical advisor in any way and have no desire to be. I am however a strong advocate to those donating to be pro-active in their health care, questions and concerns and to be their cheerleader I suppose, in letting them know that they have a voice, someone who cares, 24 hours a day. I've learned that UNOS (United Network for Organ Sharing) which monitors and governs the transplant centers throughout the United States needs to take a stronger look at how important an indpendent donor advocate is as well as wanting to be receptive to survey feedback that has not been acted upon by the transplant centers for living donors. Too many donors have felt that they have been left by the wayside once they have donated. There should be life long annual check ups for living donors to check their creaetine levels and more importantly, no one should be denied health insurance because donating is considered a "pre-existing condition". One in 750 people are born with one kidney and don't even know it until they have some sort of medical testing that reveals it. I had one young woman that I was working with who wanted to donate and when she got to the testing phase of her kidney function it showed that she only had one kidney so she obviously could not donate. I told her that it was a blessing for her in disquise and that she should feel strong and proud that she was willing to step up to the plate and donate on behalf of a friend of hers. So why...should those who have donated a kidney be considered a pre-existing condition? I feel blessed that to report that I feel great, that my donation has made positively no change in my lifestyle. Now that I am past the two year donating mark, I will be responsible financially to have my creatine level checked each year. But I can assure you of this I have positively no regrets in donating and I only wish I could do it again. It brings a smile to my face each day knowing that the man who recieved by kidney in the kidney pairing is doing great and has his life back. I am concerned with the existing processes for donors and the unrealistic expectations of how quickly they will return to a normal schedule. Everyone heals at a different pace but over 70% of those surveyed felt it took 4 to 6 weeks to be able to go back to work full time and resume their normal duties. I have seen a few cases (very few) where the individual did return in two weeks. I still to this day am convinced that living donors are the only way to reduce the waiting list and save lives, especially with kidney pairings. But I also am in high hopes that the medical transplant community will be more pro-active for the donor, keep closer communication after the donation and that UNOS will mandate a much longer schedule of medical check-ups for living donors. Several of the LKDA group have made efforts to attend the UNOS meetings and unfortunately the reception has not been warm and fuzzy. It is almost as if they don't want to hear the feedback of living donors and their needs. This makes me sad...not for myself but for all living donors. It makes me angry not for myself...but for all living donors. There is nothing like giving the gift of life and myself and many others are dedicated to making this experience a wonderful one!