A few months ago a church friend asked me, "So when do you not have to worry about rejection anymore?"
I told him the stark truth: "When this kidney dies and she goes back on dialysis. Then she goes on the transplant list again, and if we're lucky she gets another kidney and we get to start worrying again."
He was stunned, as are most people. "Transplant" and "Happily Ever After" are not the same thing.
That being said: We went to Philly for rechecks at nephrology, neurology and gynecology Monday and Tuesday (a massive accomplishment, getting all three in a two-day spread!).
Gynecology is easy: Cramps? Nope. Good - carry on, no changes, see you next year.
Neurology was a mixed bag: Yes, we should increase her medication a little more, but we need to clear it with nephrology because it is causing some kidney side effects (increased acid), so we'll get in touch with them and then get in touch with you. Make an appointment for three months. (Well, except that if history is any predictor, they'll forget to ask and forget to call; and I've already checked and there are no appointments available on the one day Babygirl doesn't have school near the three month mark unless I speak to the special scheduler, and gee, she wasn't available. Sadly, it's CHOP Neurology in a nutshell.)
Nephrology was just tough: Creatinine is 1.3, up again after coming down briefly. Calcium is up for no good reason (and believe me, there is NEVER a good reason). Too much acid (neurology's fault, and fixable, increase the bicarbonate). Neutrophil count abnormally (but not quite critically) low. There will be a team meeting to discuss what to do next. Increasing the mycophenolate is an option that has been being discussed for a long time, but concerns about her neutrophils have been the opposite side of that coin, so it's anybody's guess what's next. The word 'biopsy' came out, but they JUST did one, so I'm not sure what the point of that would be. They agreed that increasing her neurology medication is not a problem and will call and tell neurology, so I can call and bug them later.
So since the appointments were spread over two days, and the first day ended at noon, we got in the car and drove east for an hour until we ran out of land. Babygirl has never seen Atlantic City, and since we go to Bethany Beach (I think they have about the world's smallest boardwalk LOL) she's never really seen a Big Boardwalk town. We walked about three miles of boardwalk, about three miles of sand, visited Ripley's Believe it or Not Museum (hokey but fun, and better than taking a 15 year old into the casinos!) and had dinner on the beach. It was a nice break for the two of us, even if the news wasn't the greatest.
DeeDee
Follow a mom and a child with nephronophthisis through the kidney failure and transplantation process.
Tuesday, June 30, 2015
That......
That moment when...
You are driving and you look ahead and see the kind of cloud coming down that makes you swivel your head in all possible directions to check for tornadoes, even though there isn't a bit of wind. When, moments later, without transition, you go from dry road to full-bore downpour.
That moment when...
You are afraid to look away from the road long enough to find the emergency flasher button so you just palm the dash until you hit it. When you realize that a moment ago there was a truck in front of you, one behind you, and one next to you but you can't SEE any of them.
That moment when...
You can't recall if you are on that section of this highway to hell that has a shoulder or if there is a concrete barrier next to you, and you can't see either one.
That moment when...
You realize you've been saying, "Oh God, oh Jesus, oh God, oh Jesus..." over and over; and it is without a single doubt the sincerest prayer you have offered up since the last time your child was suffering in a hospital bed.
That. Was. My. Day.
DeeDee
You are driving and you look ahead and see the kind of cloud coming down that makes you swivel your head in all possible directions to check for tornadoes, even though there isn't a bit of wind. When, moments later, without transition, you go from dry road to full-bore downpour.
That moment when...
You are afraid to look away from the road long enough to find the emergency flasher button so you just palm the dash until you hit it. When you realize that a moment ago there was a truck in front of you, one behind you, and one next to you but you can't SEE any of them.
That moment when...
You can't recall if you are on that section of this highway to hell that has a shoulder or if there is a concrete barrier next to you, and you can't see either one.
That moment when...
You realize you've been saying, "Oh God, oh Jesus, oh God, oh Jesus..." over and over; and it is without a single doubt the sincerest prayer you have offered up since the last time your child was suffering in a hospital bed.
That. Was. My. Day.
DeeDee
Wednesday, June 24, 2015
Unexpected Gains.....
Last night I spent the usual 10 minutes struggling to get my Mom to agree to let me test her blood sugar after dinner so I could give her her insulin. When she finally agreed, the result was higher than I expected.
"371! Holy cow, Mom! What were you eating all day?!?!?"
"371? That can't be right! Let me look at that!" (She looks at it, the tiny little hand-held screen.) "There is something wrong with that machine. Why, that means I've gained over a hundred pounds today!"
Brief pause.
Babygirl and I started laughing so hard our bellies were still sore this morning. It took WAY over a minute before I could gasp, "MOM! It's a glucose machine, not a SCALE!"
It took HER way over a minute to register why we were laughing.
Ah, life at Dementia Central.
DeeDee
"371! Holy cow, Mom! What were you eating all day?!?!?"
"371? That can't be right! Let me look at that!" (She looks at it, the tiny little hand-held screen.) "There is something wrong with that machine. Why, that means I've gained over a hundred pounds today!"
Brief pause.
Babygirl and I started laughing so hard our bellies were still sore this morning. It took WAY over a minute before I could gasp, "MOM! It's a glucose machine, not a SCALE!"
It took HER way over a minute to register why we were laughing.
Ah, life at Dementia Central.
DeeDee
Friday, June 19, 2015
Gypsy, Farewell......
I've clearly been AWOL for some time! You can thank Squeaker. He decided to gently push my laptop off the edge of the table. The landing wasn't pretty. The computer is insured but due to a series of errors and travel I haven't got it back yet.
I went to Walla Walla for Citygirl's graduation from winemaking school (more on that in another post or three or four), leaving here last Wednesday evening and arriving home late on Monday night. My mom's friend Em came to stay with her while I was gone, helping Hubby keep an eye on her.
When I came in to say 'hi' to mom, Em pulled me aside. "Gypsy doesn't look well. She's been throwing up, and her belly feels a little full."
Mom has always two cats. Gypsy was found at a local shelter after the first big flood here in 2006. She was estimated to be about a year old and had clearly just had kittens, although the kittens were not found with her. My sister-in-law spotted her, recognizing her for what she was: A purebred Ragdoll, something my mom has always wanted but couldn't really afford. They are lovely cats, long-haired, blue-eyed, and similar in coloring to a Siamese; but sweeter in personality, very affectionate. A couple of years later when my Mom's (then) second cat died, I found Emma on Freecycle. Emma is orange and white, also long-haired, a clingy, needy little thing perfect for an old lady's lap.
I took a look at Gypsy. Her belly WAS distended. I called the vet and made an appointment for yesterday morning.
When I loaded her into the carrier, I noticed how dry her fur looked - not at all her usual shiny, well-groomed self. I found myself feeling a little desperate - hoping the cat would at least outlive Mom.
The 'patient' ahead of us unexpectedly didn't make it out of the vet's office. Both the vet and the pet owner were clearly distraught. I said to the vet as we walked in, "I hope this isn't another one." She shot me a look, knowing that I am a doctor and wouldn't make such a comment in jest, and said, "It's really too bad I don't drink, when I have days like this."
It turns out that some breeds of cat (Ragdolls and Siamese among them) can develop a form of autoimmune peritonitis. Gypsy was severely dehydrated, belly distended, and there were swollen glands and a good-sized mass. "She needs to go to heaven."
Ugh. We moved to the surgery, and she gave her some ketamine (Gypsy managed to bite her - the only evil temper I've ever seen her display), and a bit later she came back to administer whatever it is they give that finishes the job.
She's not my cat - I could have just left her there, I suppose, but for the sake of my Mom and the love she has borne for her kitties I just couldn't. We owe our pets tremendously for all they give us, and they ask so little in return! Babygirl and I came home with the empty carrier, and I still haven't told Mom.
The problem with having dementia is that bad news is intense, horrible, and it makes you cry, and then you can't remember why you are crying and have to ask and be told again like it's the very first time. I can't imagine that she'll remember. I guess what I'm hoping is that she just won't notice she's missing, since Emma is always all over her and Gypsy was more of a come-and-go sort of soul anyway.
Meanwhile I am grieving for her, not because I miss her cat, but because I miss the woman she once was.
DeeDee
I went to Walla Walla for Citygirl's graduation from winemaking school (more on that in another post or three or four), leaving here last Wednesday evening and arriving home late on Monday night. My mom's friend Em came to stay with her while I was gone, helping Hubby keep an eye on her.
When I came in to say 'hi' to mom, Em pulled me aside. "Gypsy doesn't look well. She's been throwing up, and her belly feels a little full."
Mom has always two cats. Gypsy was found at a local shelter after the first big flood here in 2006. She was estimated to be about a year old and had clearly just had kittens, although the kittens were not found with her. My sister-in-law spotted her, recognizing her for what she was: A purebred Ragdoll, something my mom has always wanted but couldn't really afford. They are lovely cats, long-haired, blue-eyed, and similar in coloring to a Siamese; but sweeter in personality, very affectionate. A couple of years later when my Mom's (then) second cat died, I found Emma on Freecycle. Emma is orange and white, also long-haired, a clingy, needy little thing perfect for an old lady's lap.
I took a look at Gypsy. Her belly WAS distended. I called the vet and made an appointment for yesterday morning.
When I loaded her into the carrier, I noticed how dry her fur looked - not at all her usual shiny, well-groomed self. I found myself feeling a little desperate - hoping the cat would at least outlive Mom.
The 'patient' ahead of us unexpectedly didn't make it out of the vet's office. Both the vet and the pet owner were clearly distraught. I said to the vet as we walked in, "I hope this isn't another one." She shot me a look, knowing that I am a doctor and wouldn't make such a comment in jest, and said, "It's really too bad I don't drink, when I have days like this."
It turns out that some breeds of cat (Ragdolls and Siamese among them) can develop a form of autoimmune peritonitis. Gypsy was severely dehydrated, belly distended, and there were swollen glands and a good-sized mass. "She needs to go to heaven."
Ugh. We moved to the surgery, and she gave her some ketamine (Gypsy managed to bite her - the only evil temper I've ever seen her display), and a bit later she came back to administer whatever it is they give that finishes the job.
She's not my cat - I could have just left her there, I suppose, but for the sake of my Mom and the love she has borne for her kitties I just couldn't. We owe our pets tremendously for all they give us, and they ask so little in return! Babygirl and I came home with the empty carrier, and I still haven't told Mom.
The problem with having dementia is that bad news is intense, horrible, and it makes you cry, and then you can't remember why you are crying and have to ask and be told again like it's the very first time. I can't imagine that she'll remember. I guess what I'm hoping is that she just won't notice she's missing, since Emma is always all over her and Gypsy was more of a come-and-go sort of soul anyway.
Meanwhile I am grieving for her, not because I miss her cat, but because I miss the woman she once was.
DeeDee
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