Dear Me on My Wedding Day,
I know you’re going to always wish you’d found a pill-style cap to go with your wedding dress (I still do!) but your second option still looks great on you, and Mitch looks adorable in his tux (great job finding him—more on that later).
Anyway, on to more important things (yes, more important than the pill cap, I PROMISE)!
Just so you know, there will be ups and downs—mostly ups—but the downs are pretty “down” so ENJOY THE UPS!
Guess what? You’re going to have KIDS!! Shocker, right? You thought you’d never even get married, much less have kids, yet here you are on your wedding day!
Your first kid is a boy and he is SO COOL! He is super smart, a gentle giant, and a GREAT HUGGER just like his mommy (that’s you!).
Now for one of the downs (the biggest one)…When you get pregnant with him, they will run standard tests on your blood and urine, and you will be told that you have a kidney disease (thank GOODNESS you discover it, though, because I might not be around to write this to you!). Yes, I said kidney disease. After your son is born, there is a biopsy done on both of your kidneys, and you are told that this disease is called Immunoglobulin A Nephropathy, or IgA nephropathy (IgAN for short). It is incurable, possibly genetic (no one seems to know for sure), and eventually deadly. You will cry in the car in the parking lot after you leave the nephrologist (that’s a kidney doctor, by the way). You will try to process all of the things he says about diet (low protein, no dairy, low salt), POSSIBLY GENETIC (you will think of your son SO MUCH) and working on your weight and blood pressure. PLEASE work on that! It took me (you) a while to get that.
So, you tell your family about this deadly disease. It’s shocking, but no one (including you) will understand how serious it will get.
Life goes on…you’ll want a second child. You’ll have to get opinions from THREE different nephrologists before one will tell you that it is okay to have another child, even though it will take a toll on your already struggling kidneys. Don’t forget this: DON’T GIVE UP AT TWO NEPHROLOGISTS!
You’ll have your second child and SHE is A-MA-ZING! She is also super smart, creative, beautiful, and A GREAT HUGGER! Even though you will go from 40% kidney function down to 30% function, you will NEVER regret it and you will tell your daughter this all the time!
Now, 30% function sounds terrifying, right? Well, it depends on the person. You will do pretty well up to this point. You will have gained some weight, but your function will stabilize…for a while.
THREE YEARS LATER…you and your husband will sign your son up for karate lessons. He will LOVE it! Your husband will convince you to sign up so you and hubby will join also! Did you know you’re going to be a THIRD-DEGREE BLACK BELT!? Your hubby and son will also, and your daughter will be a SECOND-DEGREE BLACK BELT! Good thing too, because you will lose a lot of weight (about 60-70 pounds)! That helps, but your work will keep your blood pressure up a lot, so IgAN will rear its ugly head and you’ll suddenly be down to 20% kidney function (another down), and your nephrologist will say you need to start preparing for dialysis and even a kidney transplant!
Okay, okay, okay, it’s not the death sentence you think it is, I promise! Dialysis and transplant have this huge stigma, but you’ll be doing a somewhat newer version called Peritoneal Dialysis (PD). It’s complicated at first, but you’ll get the hang of it. Lots of things to learn about, though: diet, limiting liquids, phosphorus, potassium, edema, anemia (and more!), and now you will have to eat MORE protein, not less! There will be crazy ups and downs at this point. Did I say you made a good choice with your husband? When he finds out that we can travel while on PD (because I know you and he LOVE to travel!), the first words out of his mouth will be “So, where are we going next?” He will never want you to feel down, or feel like you can’t do something (remember the karate?).
So, jump forward almost 10 years. Since finding out about doing PD, you'll learn how to do it so well. You are great at troubleshooting, and your confidence in this process will enable you to go to so many places! You will even live in CHINA for 2 years when your husband gets a job there. Crazy, right!? And this will all be while you're on PD. See? NOT a death sentence! Now our kids are 23 and 20, and we’ve been on and off the kidney transplant list for almost 8 years (off because we went to China), and we’ve just received a kidney transplant! YAY! When you sign up for a transplant, you have to have a support person with you at all times during the process. Our beautiful, smart, loving, amazing daughter is our support person (hubby is now in Germany—same job—different country—long story). Our daughter stepped up in a MAJOR WAY and helped me through the entire process. Our son was there for the journey also, and he helped a lot as well. So, we are still able to travel (well, not during this pandemic—yes, I said pandemic—that's a whole other letter—maybe two or three letters!) and our new kidney is doing great!
I will end with this: Please, please, please work on your weight and your blood pressure, and maybe a little less salt in your diet...I promise it will help you in the future.
Sincerely,
You on your 25th Wedding Anniversary.
Keyaira S.
Rachel M.
María L.
Stacey B.