I’ve been so blessed to meet many wonderful, awesome, courageous, strong and loving human beings since being diagnosed with Sjögren’s syndrome!
I want to share this special person and her journey with everyone. She contacted me via Facebook a few months ago because she wanted to make a generous donation to the Sjögren’s and Lupus Foundation of Hawaii. I have had the pleasure of talking on the phone with her and learning more about her life living with lupus. She is a very kind and giving person who is working hard everyday to help raise awareness and funds for those with lupus in Hawaii. She is very active in our community with her Ladies of Hawaii Truck’in group who have helped her to share their love of trucks and put together yearly calendars to raise funds for a great cause!
Cheryllynn Ibana-Bean has lupus and had a kidney transplant four years ago. Recently she was notified by her nephrologist that she will need to go back on dialysis and eventually need a second kidney transplant. Her doctor has given her a short time frame to try to find a donor/match. Please read her letter and story…..
Just me. A simple person asking a simple question. Well, I don’t know about being simple, but a question that may hit for some of you, a moral tone of curiosity; while for others, to create a sense of uneasiness. I hope not the latter. I hope for you to have an open mind and open hearts.
I am in need of a kidney. My question is: Would you allow me to be blessed to share one of yours?
My journey began in 1998 when i was diagnosed with Lupus, an autoimmune deficiency, at the age of 28. Lupus turned my life upside down. I loved children. I just had one. A beautiful baby girl, our little angel. I knew i wanted many more. I thought i had time. To pace myself: career, finances, newborn baby girl at 3. I thought i had all the time in the world to be blessed with more children. Lupus proved me wrong. I eventually buried both of my baby boys: one 7 months and the other 5 months. I couldn’t even make it past term.
Our family: my husband, my daughter and me became stronger than ever. But still, Lupus left me beaten at such an early age. Oue future was so uncertain. Doctors fiddled with possible cures, but still didn’t know, exactly what they were treating. “Lupus,” was considered to be a death sentence. No cure. No fix. “What was Lupus?, What was wrong with my body? Why couldn’t i have any more babies? Why me? Why me? Why me?
I eventually lost kidney function because of Lupus and had to begin dialysis. For 4 years I was on peritoneal dialysis, while for 3 more years i remained on Hemodialysis. I waited 7 years for a kidney transplant. My family and I began to lose hope. I began to lose hope while, yet again, sitting on my dialysis chair ready for another 4 hour treatment.
I’ll never forget the call. On June 23, 2013 I was told that there was a kidney that was a possible match. Wow! What a feeling! Pessimism quickly turned to cautious optomism. I started to clear my bucket list. Doctors said not to worry, transplants last up to 10-15 years. It’s been 4 years and 3 months.
Today, my transplanted kidney function is down to 14%. Normal kidney function should be at a steady 50% or above. Of course, I asked my Nephrologist the questions, What happened to 10-15 years? The answer came back of possible scarring from medication and possible overcompensating treatments.
So it brought me to where i am today…
I am in need of a Kidney. If anyone is willing or knows someone who has type O blood (+/-) and willing to bless me with their spare, please let me know.
All my love,
If there is anyone who might be interested in becoming a living donor and a potential match for Cheryllynn, please contact Maile at the Queens Transplant Center. She is the coordinator who is working with her and you can reach Maile at (808)691-8897.
START EACH DAY WITH A GRATEFUL HEART!
Please remember everyone’s body is different and unique. Always discuss any areas of concern about your autoimmune disease with your doctor.
Hugs to all…..You can do it!
Don’t be afraid of failure. If you never try, you will never succeed.