Dear 23-Year-Old Self,
You’re probably just leaving the nephrologist’s office. You’re feeling alone, confused, and scared. You didn’t bring anyone to this appointment with you, as you didn’t imagine getting a life-changing diagnosis. You’re wondering, as you drive to your friend’s:
What did the doctor just even say? Am I going to die young? How did this happen?
You reach your friend’s office, they scan the paperwork you were given, you forward it to your mother several states away, and you go home. You’ve had the air knocked out of your lungs, but I want to tell you…breathe. Slow down and just breathe. It might be hard to see it now, but it’s going to be OK. There are things you can do, people you will meet on your journey, and a lot of great things coming down the road. Don’t get me wrong, there will be many trials that test you to your max, but you’re stronger than you think.
Start off by learning all you can about IgA nephropathy. There isn’t much out there on the internet yet, but there will be. Start by looking at social media and locating groups of other people who have IgA nephropathy. Read their success stories. Read what’s gone well and what has been a struggle. Finding commonalities and hope amongst others with this disease will give you great strength. It will inspire you to make changes and do everything you can to help yourself. Being able to share in this journey with others is priceless and will make a huge impact on you over the years.
Ask your doctor what your lab values mean. If you don’t understand what he says, look it up online. Start keeping a journal of your values. Take notes on what you’re doing at the time of each lab test, like what medications you are on, if you’re trying a specific diet, or anything else that might be important. Understand that what you eat and drink can affect your labs. Make diet changes and reduce your sodium intake, even if the doctor tells you that you do not need diet restrictions currently. Things such as cutting out red meat, dark sodas and salt will matter. Drink water. Staying hydrated is imperative. You’ve learned all this through trial and error, as the resources weren’t out at the time. You are in control of your knowledge; continue to seek information and learn as much as you can.
Treatment is hard. There is no sugarcoating it when it comes to this. Be kind to yourself. It’s important to talk to your doctor, and please ask questions.
When first diagnosed, you were worried about the ability to have a child. It’s been eleven years since diagnosis, and I am happy to share that you have a happy and healthy 4-year-old girl named Ella.
Your IgA nephropathy diagnosis strongly impacted your pregnancy, and you were seen by a high-risk doctor throughout. Early in pregnancy, your numbers greatly improved. You stopped spilling protein and your doctor joked that you should always be pregnant. At 34 weeks pregnant, you were at the high-risk OB-GYN, and the doctor noticed your protein spill was up and your blood pressure was slightly up. The numbers they were reading were “normal” pre-pregnancy. The doctors were not sure if you had preeclampsia or an IgA nephropathy episode, were unwilling to “risk it,” and decided to induce. To this day, I think it was an IgA nephropathy flare and regret the early delivery. The induction lasted 42 painful hours. You had three epidurals. The doctor on call decided to do an emergency C-section.
Due to the issues with the epidurals, the doctors didn’t know exactly how much of the drug was in you. When they numbed you for the C-section, you could not breathe; you were conscious and suffocating on the operating table under the bright light. You mouthed to your husband that you were dying, and that was the last thing you remember. You later learned that they dragged your husband out of the operating room, intubated you, and put you on a ventilator. You were not conscious for your child’s birth. Your daughter was born at 34 weeks weighing 4 pounds, 6 ounces and was rushed to the NICU. You were not allowed to meet your daughter for 24 hours because you were on a magnesium drip due to potential preeclampsia and she was in the NICU. Ella spent a week in the NICU and then returned home. I am happy and proud to report that she is doing fantastic. It’s important to show yourself grace. You have been through traumatic events that change the pathways in the brain. Although you teach about trauma through your job as a trainer for the state, it’s different to live it. Don’t let stigmas that have been passed down to you about mental health treatment affect your willingness to be treated. Once you address your PTSD and anxiety issues with your health care provider, things will start to look up.
Every time a lab result pops up in your portal, you will jump. You may read it and cry, but you will overcome and keep fighting. We don’t look sick and other people won’t understand, but who cares about them? You need to know that the opinions of others do not hold any value over who you are as a person. The people who love you will understand, and you will find a way to make yourself understand that it’s OK to be sick and it’s OK to be tired.
IgA nephropathy may affect what meals you choose to eat, where you choose to go (especially with the pandemic), and the decisions you make in your personal life. IgA nephropathy is a part of you, but it does not define you.
Your labs will fluctuate but keep the faith. You have made such an impact on the lives of children and families through your job. You have an amazing husband, who you met post-diagnosis and who loves you despite any diagnosis you may have. You bought a house together and have a beautiful daughter. Ella is sassy, sweet, and every bit a diva, bringing you more joy than you ever imagined.
You will find joy in a beautiful summer day; in your child playing; in the everyday beauty of life. We cannot let this diagnosis have a hold over us. Don’t let IgA nephropathy take away from your life. You are YOU and you are amazing. It will get easier with time. Although I don’t know what the future holds for me with this diagnosis in the years to come, I have faith. I will keep making choices to take care of myself, I will keep learning, keep growing. Your life is amazing. I know you are scared right now, but it will be easier with time.
Sincerely,
Me
Keyaira S.
Rachel M.
María L.
Stacey B.