My journey with rare kidney disease began shortly after one of the happiest moments of my life. Almost immediately after we found out we had conceived my son, we learned that my kidneys were failing, and were told that it was unlikely they would sustain a pregnancy, or my body through a pregnancy. I immediately began searching literature and resources like the NKF and found hope in the stories of others who had carried children close to term, and became familiar with the risks. I found and surrounded myself with a medical team who honored my decisions and supported me, and after 37 amazing and simultaneously mentally and physically challenging weeks, we welcomed Jude into our world (named after Saint Jude, the patron saint of lost/hopeless causes). I have been astounded with the grit and determination my physicians have had, along with their creativity and dedication to provide excellent care. I am in caring and amazing hands.
If I could tell the Katlynn of three years ago anything, I would tell her that her life is not over with this diagnosis. It’s only just beginning. While this disease will take some things from you, this disease will be a blessing to you, it will slow you down, make you more intentional with your time—you will not take a single moment with your son for granted, and you will never become resentful of the commitment and time you reserve for your family. You will cherish it. You will be brought closer to God and family, and you will fully appreciate your marriage and your vows as your husband sits with you through doctors’ appointments and hospital stays “in sickness and in health”. You will have friends who will hold you up in your darkest moments when you think you cannot continue—they will be there to remind you that you can. You will wake up every day intimately aware of your blessings and you will give thanks for them daily. There is a resilience in you, that you didn’t know existed. Life is not over, keep fighting—it will be painful, and scary and hard. You’ll grieve the life you thought you’d have. But it’s worth it, as is anything worth fighting for.
Sincerely,
Katlynn
Keyaira S.
Rachel M.
María L.
Stacey B.