Dear Lauren,
Hello from your future. It’s me, 39-year-old Lauren. Ancient, right? You’re what, about 33 now? Recently got married? Congrats!
I’m sorry to say this, but you’re about to go through some stuff. It’s not gonna be fun. I’m sorry.
You’re pretty used to dealing with FSGS and its many appointments, treatments and hospital stays. You’ve been dealing with it since you were 7 years old, after all. In fact, I’d say you had a pretty good attitude about it your whole life, all things considered, even the years where you looked and felt like a different person because of everything you had to go through while fighting this disease. B
ut kidney failure and the transplant are almost gonna break you. Again, I’m sorry. There’s nothing I can do about it. There’s nothing you can do about it. You’ll try. You’ll panic. You’ll call your old nephrologists, convinced the doctor is wrong, that there has to be something you can do to save your kidneys. You’d eat a scorpion if someone said it would work. After all, your kidneys have held on for nearly 30 years with this disease, why would they suddenly fail now, right? They can’t! Seriously though, they can’t. Right?
I’m sorry, but they can, and they do. I know. It sucks. You weren’t expecting this. The specter of a kidney transplant was always in the way distant future.
Remember when you were first diagnosed with FSGS in second grade? You didn’t really understand what was going on, but you thought the children’s hospital was cool and the nurses were nice. There were fun people in striped shirts who came around and played games with you while your parents spoke to serious adults in white coats.
The best part was that you got to skip school on Tuesday afternoons for treatment, which meant you got to watch Willy Wonka and the Chocolate Factory in the hospital bed. Sure, sometimes the needles made you cry, and the nurses felt bad, and your parents felt bad, and it sucked. But then you got to watch Willy Wonka and eat treats, and everything was OK again.
When you were 7, it didn’t really matter that you gained a lot of weight due to side effects from treatment. What did you care about your appearance? Bring on the pancakes!
And you didn’t even really notice when you stopped growing — another side effect. Height wasn’t much of a concern at that age, was it? Besides, being the shortest person in class meant you always got to be in the front of the line, and who doesn’t want to be at the front of the line?
But it still sucked when Brittany called you fat. When she made fun of you for having a disease. But I’m glad you had friends to rally around you and make you feel better. Plus, everyone knew she was just jealous that your playground McDonald’s franchise was outearning her playground Burger King franchise.
Gaining weight was harder at 12. Seventh grade is already the worst. Add moon face to that? That’s just cruel, man.
Turns out moon face was also extremely inconvenient at age 21. You Googled how to lose the moon face and found a guy on YouTube who exclusively ate 40 oranges a day and avoided moon face. (Thank you for not trying that).
Remember when you ran into that guy you hadn’t seen in years at a bar, and he drunkenly told you that “you got chubby”? You burst into tears. It didn’t help that your boyfriend at the time, your first love, shrank back and said nothing. At least his best friend stepped up and defended you.
So yeah, I know that 33-year-old you has been through some stuff. But your kidneys have been stable for a long time now. In fact, you barely even think about your disease these days. It hums along in the background while you focus on your career and personal life. You have noticed a little bit of swelling over the last few years, especially after extra salty meals, but that happens to a lot of people, right? Your creatinine is stable, so your doctor isn’t worried. In fact, your labs are so good that you and your new husband just got the ok to start trying for a baby. It’s an exciting time!
I’m sorry to tell you that this is the part where everything goes off the rails. You won’t get to try for a baby after all, and this is the beginning of the end for your kidneys.
I know. I know, it sucks. And it gets a whole lot worse before it gets better.
Over the next few months your blood pressure will skyrocket. You will wake up with mind-melting headaches and nausea every morning. By the end of August, you will be in the hospital with a hypertensive crisis. You will vomit out of your car’s passenger window as your husband worriedly drives you there, and this will happen the day before the two of you are supposed to go to Paris for 2 weeks.
You will feel scared when you get a kidney biopsy and learn that your kidneys have reached the end of their rope. You will be upset that your best friend didn’t visit you in the hospital. You will plead, beg, and cry to the doctor to try other ways to save your kidneys. He will tell you there is nothing to be done except get on the transplant list. You will think he’s a hack and call your old doctors so you can save your kidneys. Your old doctors will look at the biopsy and confirm that your kidneys are toast. You will get evaluated for a kidney transplant, and you will cry the entire time. You will regret assuring your husband that he didn’t need to take time off work to come with you. You will feel heartbroken as your 65-year-old parents trip over themselves trying to give you their kidneys. Your dad won’t make it past prescreening due to his blood pressure, and you will get frustrated that your health care team seems to drop the ball on following up with your mom about her test results.
You will decide to get evaluated at another hospital instead, where you grew up and where you feel comfortable, and which offers a more tailored approach to transplants and therapy. You won’t cry this time. The vibe is better here, and you are coming to terms with the loss of your kidneys and what you are about to go through.
Your father is allowed to continue testing here, and because of this he will soon learn that he has kidney cancer. He will have his kidney removed 2 months before your transplant. If there is one saving grace through this whole ordeal, it is that your kidney failure might have saved his life.
Your brothers will also be tested to be your donor, and your older brother will turn out to be a perfect match, second only to a twin kidney. He will selflessly offer to give you his kidney, even though he has two children under 2 years old and has been terrified of needles since you were kids. You are grateful, but feel guilty, and these two feelings will exist side by side and never go away.
Kidney failure is brutal. Your kidney function will get down to 5%. You will hardly be able to eat anything at all because your body cannot process nutrients. You will subsist mostly on saltines and sour candy. You will panic at restaurants as you read the menu and try to calculate what has the least potassium. You will freak out when a pasta you thought had white sauce comes out with red, because tomatoes are high in potassium. Scouring the internet for potassium levels will send you down mental spirals frequently during this time, because if your body ingests any more potassium your heart will explode or something.
You will continue to wake up with excruciating headaches and vomiting episodes. You will be so pale you are practically translucent, and despite a strict no-salt diet, you will wake up with a swollen face every morning. You will watch with a mixture of horror and curiosity as the swelling migrates down to your ankles by the end of each day. You will be so anemic and tired that it will be all you can do to walk to your car, commute to your office, and plop yourself in your chair every day. You will miss a lot of work, so much that you run out of sick days and have to take unpaid days off. You will have the constant taste of metal in the back of your throat. The internet will tell you that this is the taste of the toxins that have built up in your body.
You will cancel another vacation, this time to Costa Rica, because you are too ill to travel. You will turn down a lucrative job offer because you know you are too ill to do the job properly. You are only 110 pounds and you barely eat, but you’re still constantly on the verge of another hypertensive crisis. You will try to lower your blood pressure by listening to Lana Del Ray’s “Lust for Life” on repeat.
You will learn your dog has cancer, and he will die a week later. The next day you will move into a cramped apartment while your house gets demolished for total reconstruction. You will lie awake at night, wondering how you could possibly wake up alive in the morning when you feel this bad and alternately worrying that your brother will die while giving you his kidney. You will not allow yourself to have any feelings about all of this because you know if you do, you will fall apart. You begin to disassociate so much from your life that you start to wonder if you are in a simulation, and if someone behind the controls is messing with you.
Your husband will have a hard time with everything, and you won’t have any ability to make it better. You will feel guilty that his life turned out this way. You will wonder if he regrets marrying you. Oh, and your grandma dies. I’m sorry. I told you this was going to be difficult. But light does emerge. Your dad gets his cancerous kidney removed. You receive a beautiful, thriving kidney from your superhero brother, and it works better than you even hoped. His surgery goes perfectly, and he is still the most energetic person you know.
You spend 3 months healing at your parents’ house, where your nurse mom takes excellent care of you. You regain your color. Your blood pressure lowers again. You can eat anything you want except sushi. No more headaches, no vomiting, no swelling. Despite recovering from major abdominal surgery, you have more energy than you’ve had in years. You get to take long walks on the beach daily. You spend time with your nieces, time you wouldn’t otherwise have had with them.
You pivot your career into writing, which you always wanted to do. This goes well for you and turns out to be extremely convenient once the pandemic hits.
Your house gets rebuilt, better than before, you get a new puppy, and your marriage regains its strength, better than before.
And though it takes a while, you eventually welcome a perfect baby boy in 2022.
Oh, and your FSGS has not yet come back.
It’s hard to be sick. It will affect you mentally as much as physically, and it will touch every corner of your life, like spider legs trying to choke everything you care about. People you thought would be there for you disappear, while others come out of the woodwork.
This won’t be something you can tough out on your own. You won’t be able to handle it quietly, like you’d prefer. Kidney transplants are uniquely punishing because to live, you must accept the gift of another person’s body part. This is extremely difficult, possibly harder than any of the other bits: the extreme diet, the vomiting, the headaches, the fatigue, the hospital stays, the waking up from surgery feeling like you’ve been stabbed in the gut. Putting your brother’s life in danger, even if it’s only a very small risk, is the hardest thing you’ll ever do, because you know that if something happens to him, you will never forgive yourself.
The disease you encounter in the next few years will not be the disease of your youth. Being a sick adult is much harder than being a sick kid. People feel bad for sick kids. It horrifies them; they will do anything they can to help a child who is ill. But a sick adult is a burden. You cannot be the person you previously were to your friends, family, co-workers, and bosses. You might not even be a functioning member of society at all. If you want to play games in the hospital or watch Willy Wonka, you’d better hope there are people in your life to facilitate that for you.
But I’m here to tell you that those who do show up for you show up hard. For every friend who fails to visit you in the hospital, there’s one who drives 12 hours in both directions to comfort you for one night only. There’s the acquaintance who offers to get tested to be your donor, no questions asked. There’s the sister-in-law who offers to carry your future child if you need it, and the college friends who send flowers and new pajamas to your hospital room. There will be a boss who offers to find you a kidney on the Russian black market, and a cousin who mails you coloring books. There’s your remaining doggie who snuggles you in bed every night, your parents who would do anything to see you well, your in-laws who are with you every step of the way, and your husband who will stay by your side.
And of course, there’s the brother who saves your life.
You’ll be OK. Just hang in there.
With love from the future,
Lauren
Keyaira S.
Rachel M.
María L.
Stacey B.