Dear Courtney:
As you finish high school and head on to college, you might be aware of some health things that will arise in your future. At the beginning, the weight loss is great, you look so thin and everyone compliments you.
But then you will begin to have incredible pain that will lead to a diagnosis of Crohn’s disease during your junior year of college. Your mother will think you are anorexic.
During the course of this autoimmune disease diagnosis, you’ll have three bowel resections, you WILL get to have a baby, then a hysterectomy and adhesion removal surgery, and the loneliness of struggling through these challenges. It’s the beginning of a long existence of “COMPROMISE.” Later, during a flare-up due to some mechanism in your system, you end up developing another autoimmune disease, a rare kidney disease called IgA nephropathy. This diagnosis puts you in a position to need a kidney transplant by the time you are 50. When you are diagnosed at 44, your kidney function will already be down to 37 eGFR.
However difficult these circumstances are, you must remain resilient. You must be smart. There are ways to find joy and live your best life. You will betested and challenged, but you have support, and you’ll learn how to communicate your needs. One specific time you will need help is when you end up with a severe infection (klebsiella) that will absolutely change your life. After getting an infection and not listening to your body, you end up in a doctor’s clinic in Placencia, Belize. Listen to your body! Flying home to the United States to be admitted to the hospital for 2 weeks with acute kidney failure will stop you RIGHT IN YOUR TRACKS. And then when you are released, you are right back in the hospital 5 days later for another stay, because you are so weak.
This IgA nephropathy will come to affect everything. To dig deep into those challenges hurts…I wish I could spare my younger self, my family and my friends of the horrors that came along throughout the years. This is a marathon and not a sprint. You WILL get accepted into the Transplant Program at the university hospital. Please take good care of yourself and listen to your body. Advocate for yourself and find a “Board of Directors” to help advise you when you are overwhelmed. Find a great, empowering therapist. Find support from those who have this disease also. Listen to the right people, because there are a lot of “armchair physician” friends who know about a “PRODUCT” that can cure you…It can’t. YOU WILL FIND a GREAT SUPPORT GROUP just at the time when you are so scared that you can’t think straight.
Now, I’ve found an IgAN Family — and that is such a gift. You’ll be able to get out of the closet from the anxiety. You will find support when you are having crazy symptoms that could come from Crohn’s, anemia, or IgA nephropathy. TREASURE these relationships.
Besides the health struggles, you have a lot to look forward to: getting married, getting to have a daughter, great friends and raising a lot of money for Crohn’s disease and for your neighborhood school. Being in a long line of women who are strong, you will not give in easily. To enjoy life, you have to appreciate the little things. Believe me, there are so many adventures to take and so many paths you can follow.
One day, you might realize that having these diseases — and the challenges that come with them — gives you SO MUCH. You become incredibly and humbly grateful. Your compassion might change, and the way you see others struggling changes you. I don’t know who I’d be without them. These diseases have made me look at life much differently. Sometimes life is so beautiful, you just want to cry. I just wanna see what happens next…
GIVE YOURSELF GRACE and don’t compare yourself to others!!
Courtney
Keyaira S.
Rachel M.
María L.
Stacey B.