November 14, 2014
Since I got back from Seattle, things at the casa have gotten interesting.
While I was gone, I got a message from #2 son, asking about the ingredients to some energy bars we got at Costco. #2 is now 21 years old, in college, while working a third shift job, and has an adorable girlfriend. The three of us took a trip to Costco, back in early October, and split up some of the packages, Like chicken broth and protein bars.
Because, apparently, we have become the most boring people in the world. This is probably why I don’t blog as much as I used to.
Except, suddenly, things were slightly less boring. What was in the protein bars? He stopped eating them because they were making him achy and bloated.
Like the deeply caring woman I am, I asked him if he was getting his first period, and went back to doing my nails.
A few days later, while I was on the train back from Seattle, my husband messaged me that Sean was going to the emergency room “for tests.”
Tests? TESTS? TESTS ON WHAT???? (Looking for bigger, darker fonts to express the utter panic.)
WHY WAS NOT INFORMED??!!!!!!!?????
Apparently, I was. When delivered by the most-low key 21 year old in the world, bloated means, retaining so much water that he looked like he had his 87 year old Grandmother’s ankles. The school nurse informed him that there was blood and protein in his urine, and he needed to get more tests immediately.
A difficult week followed. I continued to travel East at Amtrak speed (leisurely). I messaged #2 to make sure he was all right, and asked him what tests he’d gotten.
Blood. Urine. Shrug. Follow up appointment in a week. Double shrug. And yes, it is possible to shrug in FB messages. It’s all about the words you leave out to make your panicked mother guess what is going on.
Did the swelling go down?
No. But he had water pills.
A week passed, while the DH and I ran through every disease possible that could cause water retention, and got minimal reports from #2, who did not seem nearly as worried as we were. He thought he saw a tendon in his foot once. Hooray!
I made it home to Wisconsin, and drove him to his follow up appointment, which was to a kidney specialist.
Me (relieved that there is some kind of diagnosis): So they’re sure it’s kidneys?
#2: They did an ultrasound last week.
Me (seeing little black dots in front of my eyes as my blood pressure races up and down the scale): And when were you going to tell anyone about this?
#2: I told James (#1 son).
Me: And he said nothing to us. (Eventually, we have a family “conversation” and I discover what he told James was “I had an ultrasound. It’s a boy.” And once again, we learn the problem with raising a pair of smart asses.)
#2 (Pointing to the GPS): The clinic is coming up on the right. And should I be worried that it says dialysis center?
I assured him that kidney dialysis was probably not something they sprung on you as a surprise, while looking t the way the feet of my whippet-thin son were bulging out of his shoes and his pants were pulled tight across the calves.
After a visit to the doctor, we learned that, no, they do not surprise you with dialysis. This wasn’t a case of kidney failure. It was primary kidney disease, which is probably autoimmune and would be treated with drugs once the full diagnosis was made. The swelling was caused by the protein that was going into urine and not the blood stream, where it was supposed to be handling fluid. The normal amount in urine was 30 mg. Sean had 12 Grams.
Diagnosis would be made with a biopsy.
In the hospital.
In a week.
Then, treatment could begin.
Days ticked by. Water continued to be retained. 40 to 50 pounds of it. Was he pissing steak? And why was his face swelling? Because when he raised his legs, water ran uphill.
Finally, a biopsy (which, if anyone hasn’t noticed, is a scary word). Tests on the samples they took of his kidneys.
#2 son has cellular FSGS. For no particular reason, other than what I suspect is shitty genetics from my side of the family, #2’s white cells have decided to eat his kidney cells.
#1 looked up famous people who’ve had this disease. Gary Coleman.
FSGS is why Gary Coleman was so short. #2 son claims to be 6’ 2”. I think, including hair, he is closer to 6’ 3”. Thank God for FSGS. Can you imagine how tall he would have been, if he had fully functioning kidneys?
Apparently, cellular FSGS is the best kind to have. Personally, I’d vote for NO FSGS AT ALL. But this is not a voting matter. And really the other types are more difficult, and involve chemotherapy. This one means six months of steroids. Also blood pressure meds, anti-pneumonia meds, and more water pills. Four months before we can be sure it’s working. But a probable end with total remission and no more problems.
And increased doses of water pills seem to be working. He’s lost 20 pounds in two weeks. And now, there is nothing left to do but wait.
And while we do that, we can enjoy the stack of medical bills from trips to emergency rooms, specialists and an overnight in the hospital. If anyone wants to buy a book, I recommend the self published ones. So far, I need to sell about 10,000 of them, and we’re just getting started.
Really, I liked my life better when it was too boring to write about.
Chris, we just had a very successful kidney transplant in my family. You sent this to TheCherries… Fb group, but do you mind if I share it with the “buy a book” exhortation?
Sure. Share it where ever you want. Thanks for asking.
And congratulations on your successful kidney. I am hoping that we don’t end up down that road, but it is good to know that this is not as dire as problems with some other organs might have been.
Good Grief!! Chris – the only other words I have now are “Oh, crap!” and “this sucks.” Let’s go back to boring. Good thoughts and hugs for the kiddo.
This is so scary, Chris! I hope the treatment works well – and quickly – and I also hope you have good insurance. And I’ll go make sure I’ve bought all your self-published books! ((hugs))
Kidneys… At least they figured out what was wrong with him. My 21 year old daughter spent 3 days in the hospital with excruciating pain in her absomen. One CAT scan, several ultra sounds, and dozens of blood tests later they still couldn’t tell us what was wrong. Glad to hear he’s doing better and I’m praying that this too shall pass and life goes back to boring and predictable very soon!
Gosh! Wish good health to your son soon! and strength to you and your family through this ‘waiting” time.
Holy kidneys batman ! There is improvement, right ? This from eating a protein bar ? Very scary stuff. How are you doing ?
Nope. We can’t blame the protein bars for this. This is all autoimmune. Which means it can happen for no particular reason. The cells that are supposed to fight disease just randomly attack the body.
I blame genetics. My mom has unspecified connective tissue disease, which is something that’s not quite lupis.
I have something called blepherochalasis syndrome. That’s something that’s so rare it didn’t even used to be on the internet. (I am really excited to see it now, when I search. For a while I thought the doctors had made it up to get me to go away).
And Sean gets kidney disease.
There is some improvement. Apparently, there is less protein in the urine, but still way too much. But we won’t know for sure that he’s getting better for several months.