Moving Day...
"My Life with CKD" is now online at http://charjtf.com. Hope to see you there!
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May 5
Apr 28
I Can't Complain
32 years ago, I was diagnosed with Chronic Kidney Disease, also called CKD (specifically, I had Membraneous Glomerulonephritis (chronic)). I was living near Allentown, PA, at the time, and my doctor, Dr. Paul Bosonac, was awesome. He spent a lot of time explaining what was wrong with me (basically, he explained it as "holey nephrons"), but he was a bit stumped because he wasn't quite sure what to do with a 22-year-old who, as he said, "had 80-year-old kidneys".
After doing a kidney biopsy, he decided that I should go on Prednisone. Massive doses. 120 mg every other day, for 6 months. But he admitted to me that he didn't know what would happen...his best guesses were that in six months, I'd need a transplant, or I'd be on dialysis, or I'd be dead. I (obviously) beat those odds! By Christmas, my kidneys had started to respond, and he weaned me off the drugs (this took another nine months). There were no guarantees as to what the future would hold. (Then again, no one gets any guarantees, so I wasn't too fussed about it.) It was 13 years (and several more nephrologists because I kept moving to different states) before my next incident. Thus started the many cycles of Prednisone over the next five years. Each time, my kidney function would increase, although my "high" value kept dropping overall. During one of the "good" times, I got pregnant (at 40!), and everyone was surprised when my kidneys handled it just fine. (My OB/GYN said that I had "the most boring pregnancy ever", which no one expected. Dual high-risk moms-to-be don't typically have boring pregnancies!) Over the last 14 years, I've changed nephrologists twice and endured a variety of drugs. I've been on Prednisone, by itself and in combination with oral chemotherapy. (A side effect of chemotherapy is increased kidney function. This can be a problem for people with cancer, but it's a bonus for people with CKD.) I had 2 Rituxan treatments, spending each day at Mass General Hospital (MGH) as poison dripped through the IV, while gloved, masked, and suited nurses upped the dosage on a regular basis. (That's the standard protocol.) For those who are curious, my eGFR (way to measure kidney function) is 19; my BUN is 35; my creatinine is 2.6. This puts me solidly toward the end of Stage 4. (Typically, people my age should have eGFR at 60-100, BUN at 5-21, and creatinine at .4-1.0.) At Stage 5, also known as End Stage Renal Disease (ESRD), eGFR is somewhere around 15, and when eGFR is at 10, they start talking transplant. Because I've been under my doctor's care for so long, she's able to determine when the best time is for me to proceed to the next step in the treatment plan. (In other words, it's a little different if you just suddenly show up with an eGFR of 19.) Two facts are in play here: - The type of dialysis determines how quickly your kidneys will completely fail. Hemodialysis, which is the one most people think of (where the blood is filtered outside the body, typically through a fistula in your forearm), is much harder on the kidneys. And it requires three treatments a week, lasting from four to five hours each (not including travel time). Peritoneal dialysis (PD), which uses a catheter in the belly (the dialysate flows in, and then it flows out), is much easier on the kidneys. However, it requires four treatments a day, although each treatment only takes about 40 minutes and can be done at home. It's also easier to travel because PD can be done anywhere. - If you start peritoneal dialysis before Stage 5 starts (like with an eGFR of 19), it should be longer until a transplant is necessary. Because PD is easier on the kidneys, current function should be maintained longer. After 32 years, my six months is up. Some time this year, I'll be starting PD. I'll be sharing the steps...from the surgery to insert the catheter to my travels to MGH for the training to setting up the home dialysis center (well, I suppose "room" is more appropriate). I don't know yet when everything will happen because a lot of things have to be taken care of first (including preparing to go on Medicare, which...at this time...still covers all costs related to ESRD). I will, of course, continue to work and travel. If you have any questions, let me know. If I don't know the answer, I will find places that do. But my life is completely different from most people with CKD and ESRD. My quality of life hasn't really been affected, other than my diet. Some people have it much, much worse, and I consider myself exceptionally lucky.
Filed under //
BUN
chronic kidney disease
ckd
creatinine
egfr
glomerulonephritis
peritoneal dialysis
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Jan 10
My son and his incredible swimming weekend
J had a swim meet this past weekend (January 8-9). Meets held at the Zesiger Pool at MIT are usually really big meets...lots of teams from the area participate, with over 800 kids swimming in 19 lanes (split into two pools, one for 12 and under and one for 13 and over).
Now that he's 13, he swims with the bigger kids. (The good news for me is that this is the closer end of the pool, which means that I can actually see him swim.) For this meet, he was scheduled to swim 7 events, which are listed below, along with his seed times and results. (He got cut from the 8th event, the 500 free, because of time...the meet was going long.)
- 50 free. Seed: 31.39. Result: 30.92. (Cut: .47)
- 100 free. Seed: 1:10.22. Result: 1:09.43. (Cut: .79)
- 200 free. Seed: 2:32.04. Result: 2:28.62. (Cut: 3.42)
- 100 back. Seed: 1:23.13. Result: 1:20.32. (Cut: 2.81)
- 200 back. Seed: 3:02.80. Result: 2:55.31. (Cut 7.49)
- 100 fly. Seed: 1:37.40. Result: 1:31.57. (Cut: 5.83)
- 200 IM. Seed: 3:13.32. Result: 2:57.02. (Cut: 16.30)
All in all, he did one heck of a job :-)
He's now qualified for Regionals in 50 free, 100 free, and 100 back. Woot!
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May 22
It's all about expectations...
This topic...expectations...actually applies to both personal and business. But in this case, it’s about parents, babies, and doctors.
Sometime around now in 1998, Jesse had his one-year physical. He had grown so much...born at just around 6.5 pounds, he was now close to 20 pounds. He’d been walking for several months by this time (he was walking at WritersUA in March of that year, complete with a ring of bruises around his forehead where he kept running into walls). He wasn’t talking much...”mama”, “dada”, and “dama” were pretty much it by that point.
So Jim and I show up with Jesse at the doctor’s office. Jesse gets weighed and measured, and he’s all ready for the check-up when the doctor arrives. We talk for a few minutes while she examines Jesse, checking all those things they check on one-year-olds. Then she asks him where his nose is.
He looks at her as if she’s speaking a foreign language.
She puts him on the floor, where he runs over to the computer monitor set up in the corner. He sees the screen saver, so he moves the mouse to stop it. He sees a password field, so he taps on the keyboard to try to enter the right combination. When it doesn’t work, he tries again. Meanwhile, the doctor is saying to me...
“We can’t judge his intelligence if he doesn’t know where his nose is.”
Expectations. It’s all about the expectations.
No one ever told me that babies were supposed to be able to recognize their nose by the time they were one. As an older mom (I turned 41 less than a month after Jesse was born), I really hated people acting like I didn’t have a clue, but I expected them to tell me when there were tests, for heaven’s sake :-)
Obviously, Jesse had no expectations at his age. He was doing what he normally did as a one-year-old, and we never limited him when he tried doing things. (I’ll have to write about “independence” later.)
The doctor’s expectations were that not only he would know where his nose was, he would be able to point to it.
I’m pretty sure that none of the books said that he was expected to know how to use a computer. As a result, it wasn’t possible for them to measure his intelligence because their standards included body parts recognition, not mouse recognition.
So the next time someone is shocked at your accomplishments, find out what their expectations were. Sometimes only a realignment is needed.
PS By the time he was 13 months old, Jesse knew where his nose was. And his eyes, forehead, lips, teeth...it was a month of immersive, intensive study, but he passed the next text ;-)
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May 10
What's your favorite word?
Last week, I was part of a panel at STC's Technical Communication Summit called "Inside the Technical Communicator's Studio", hosted by STC Fellow Barbara Giammona. I've never seen the original TV show...I'm not sure if that helped or not.
Anyway, each segment ends with 10 questions, and the first question is, "What's your favorite word?" I like a lot of words, but my favorite word is "Dam". And, of course, it has a story :-)
Jesse, like many kids, said "dada" (\'da-da\) first, followed shortly by "mama" (\'mä-mə). But at some point, he realized that there were times when it didn't matter which one of us responded to him (as long as one of us did), and a third term was born: da-ma. After awhile, it got shortened to "Dam", and at some point, Jesse only used it when talking to me.
Of course, it meant that trips (like to the grocery store) got to be really interesting. Here's this tow-headed, blue-eyed little boy, pointing out things in the store that he wanted me to buy. "Dam, cookie!" "Dam, candy!" "Dam, milk!" And I was so used to it being my name that it wasn't until I saw people's faces that I realized what it sounded like to people who weren't aware.
"Dam" disappeared as my name when Jesse was 6. I'm not sure why he stopped using it or even exactly when, but it was just gone one day. But it's still my favorite word :-)
What's your favorite word?
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Dec 22
(download)
Happy Holidays :-)
The long-standing rumor in the Help authoring field is that December is quiet, at least for consultants.
I haven't had a quiet December in years :-) (Yes, I know that's a Good Thing(TM)!). But with everything going on, I end up way behind for the holidays. Here we are, three days before Christmas, and the tree isn't decorated. The presents aren't wrapped. (Heck, more than half of them aren't even here yet.) The duck is prepped (because, if I hadn't gotten it done when I did, then Christmas dinner would have been macaroni and cheese ;-).) The only baking that's finished...a batch of snickerdoodles and two batches of peanut blossoms...are because Jesse decided he wanted to bake this year.
This, of course, means that the holiday cards are also late. So while some will get sent, I'm posting a special online version here (I added a couple more pictures and some text.)
Wishing you and yours the happiest of holidays :-)
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Mar 24
Ada Lovelace Day: Paula Berger
Today is Ada Lovelace Day, "an international day of blogging to draw attention to women excelling in technology". People all over the world are blogging about women in technology...specifically, their "unsung heroines". (Here's why.)
Anyone who signed up for Ada Lovelace Day is supposed to talk about someone who inspired them, so let me introduce Paula Berger, currently Director of the NFC Forum and former president of STC.
When I first met Paula almost 20 years ago, she was running SOLUTIONS with Lynn Harris. What started out as a short-term tech writing contract led to a long-term professional and personal relationship that has helped me in more ways than I can count. (Paula jokes that she and I started an IM conversation years ago and we've never stopped.)
It's because of Paula that I started speaking at conferences. It's because of Paula that I'm a better writer (she's an awesome editor). And it's because of Paula that I recognized my potential as a tech writer and a technical communicator. She has great insights and, more importantly, she gets me to think.
Who's your unsung heroine?
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Oct 1
A place for me?
So I now have a Posterous blog, thanks to Guy Kawasaki ;-) I'm not sure why I should use it instead of any other blogging software that's available, but I figure it's worth a try. And I can use this blog for the non-business stuff that's rattling around in my brain.
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