Caregiver and Advocate

[Bobbiereed]

Hi, My name is Bobbie Reed and I am the caregiver to my now 27 year old son, Alex. He received his kidney transplant on November 9, 2015 from a non related living donor who was an alumni from Penn State University. We are so grateful to this man for saving his life. Penn Stater's stick together and take care of their own. WE ARE PENN STATE---THANK YOU. I am so happy to become a part of this group and to be able to share our story in hopes of helping others on their journey.

[sashastorm]

Hi Bobbi, I am a caregiver to my husband and also gave him a kidney on 04/10/2017. It is wonderful that your son received a kidney from a non-related donor! My husband and I met at the University of Oregon and are big fans of our school too. It helps to have a team to cheer on when you are going through the ups and downs of kidney disease! I wish you all the best! We caregivers also need support and encouragement!

[NeedingAdonor in reply to sashastorm]

So how is your husband now? I am here in Oregon and searching for a donor for my fiance. We had 5 people apply to donate and they turned all of them away. I'm beyond frustrated. The last applicant is 19 yrs age and so smart as he said "If they weren't so stubborn and turn down people because of a tiny detail then he would have a donor"! I agree there and am running out of what to do. I haven't held an event yet so that is an option and I haven't made a video.

[Bobbiereed NKF Ambassador in reply to NeedingAdonor]

Actually it was my son who I found a donor for. He is doing good with the exception to the steroids causing side effects of sleep irregularities, fatigue, weight gain, and mood swings. I really wish he could switch to something else but even with all that is going on with him, it is much better than kidney failure and dialysis. I thank God each and everyday for his donor.

It is really frustrating when looking for a donor and learning they have gone through evaluations only to be declined I remember that all to well when my sister in law tested for my son early on. She, like everyone else in the family was convinced she would be the one to save my son. Her health was excellent and upon visual evaluation should have sailed through with flying colors. We only knew she was being evaluated because she told us. Her confidence in being able to help my son was overflowing. The transplant center told us nothing. Not even the fact that she was being evaluated. Then came the final day where the doctors revealed their decision to her. They told her she couldn’t donate to my son. In fact she needed to see a kidney specialist as she was in Stage 3 Renal Failure. Apparently from birth, due to some defect that was never discovered, both of her kidneys never grew. They were not even supporting her as an adult at age 56. That announcement sent her into a mental spiral. She was devastated. We were devastated too because now not only were we having to cope with a son in kidney failure, we now had to face the fact a close relative was right on his tail. Today, she remains monitored by the doctors with limited kidney function. I had to pick it up and move forward too on the search to find my sons donor. I have a much better understanding now of just why the testing and evaluation process is so private. If we wouldn’t have known, it wouldn’t have been such a big let down.

My best advice is to keep your head up and keep trudging along. Use social media whenever possible to draw attention to the good. For example: look what XYZ Company did to raise awareness for organ donation. Everyone should be a registered organ donor. I need to find a kidney donor. Will you be the one to help me? For more information contact my transplant center at......

[Bobbiereed NKF Ambassador in reply to sashastorm]

You should look into the new program the NKF has recently introduced. It is “the Big Ask Big Give”. This program gives you a wealth of information on how to find a living donor. Contact the NKF Cares Hotline—it is toll free and ask them if the program is being presented somewhere near to where you live. I actually helped in the development of this program and our story is featured throughout it.