Dear Young Amanda,
When you were diagnosed at 31, I would like to share that this was not a death sentence. I realize that when someone gets diagnosed with a chronic illness, you think you must stop living your life, and I have to say that it is the farthest from the truth. I feel that the layer on top of being diagnosed with IgA nephropathy, which is a rare disease, will be EDUCATION, which is the MOST IMPORTANT. I feel that you need to be able to advocate for yourself while going through this disease journey.
If I told you that you would not be really bothered in the first 11 years of your diagnosis, would you have changed anything that you did leading up to your first flare-up, which came in the Spring of 2018? I’m sure the years leading up to 2018 were never perfect, but you were stable, and that’s all you ever wanted. Remember when you got diagnosed, your old nephrologist told you that you would be lucky if you got to the age of 40 without dialysis or a transplant. I feel that you must remember that you have this chronic illness, but this does not define you as a person, just like your job does not define you either.
Your first real test of adversity on your disease journey came in the Spring of 2018. You had your first flare-up, and you were completely lost for words, emotions, etc. that your body could turn on you like this. WOW, was this a wake-up call to you personally because this flare-up was due to STRESS that was not manageable, and you kept it to yourself. The experience of 2018 was a bump in the road on our journey, which led you down a path of finding a new nephrologist with groundbreaking ideas on disease and treatment in the years to come.
In conclusion, since your flare-up, you found a new nephrologist in Philadelphia who promised you that he would keep you off of dialysis and or needing a transplant for almost 5 years. Fast forward to December 3, 2024, you received a new kidney from your cousin Joe, who gave you a 2nd chance at life, and he will FOREVER be your hero. You never asked Joe to get tested, and he was the 2nd person who had stepped up for evaluation. He never wavered in his decision to go through this life-changing operation, and when we found out in October 2022 that he was a match, I knew my prayers were answered, that I would never have to go through dialysis or ask a stranger for a kidney. Remember, your motto from 2018 and something you live by each and every day, “You are stronger than you’ll ever know!”
Warm Regards,
Old Amanda
Keyaira S.
Rachel M.
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