I received a call from the sedation team today. They reviewed Babygirl's chart and came, unsurprisingly, to the conclusion that she was not a candidate for sedation because of her weight. The steroids have increased her weight so much that she could stop breathing, so she the referral was sent on to general anaesthesia for scheduling. It's just one more way that medication side effects are running our lives.
This is hardly big news - if it was true in November, it is true now. Nothing has changed. So now another team has to look things over and decide when the biopsy can be done. Since the anaesthesia nurse had no idea we had a second-choice date, and things aren't looking good for March 14th, I told her that spring break is April first. That would mean that for the second year in a row we'd have to leave home immediately after Easter dinner and run to Philly.
Such is life LOL.
DeeDee
Showing posts with label medication side effects. Show all posts
Showing posts with label medication side effects. Show all posts
Monday, March 4, 2013
Sunday, November 25, 2012
School Pictures......
One of the many problems with not attending more than one day of school a week is that you miss school portrait day. Admittedly school 'portraits' are not usually particularly representative of our children's growth and beauty as WE see it, but it's still nice to have something current to send to the family at Christmas.
Babygirl left school early on picture day. She missed school entirely on photo makeup day. This year, for the first time ever we won't have a set of school photos of her. She hates having her picture taken anyway - her body has changed so much in the last ten months due to the anti-rejection medications that she's become uncomfortable about it.
But the beauty of having family is that people have talents that I lack and are willing to share them. So my thanks and undying admiration go to my (local) sister-in-law. She is a photographer of rare talent: landscapes, portraits, animals, weddings, babies - she rocks them all. And she took pictures of Babygirl that will allow her to see just how beautiful she really is. This is the preview shot:
Impressive.
DeeDee
Babygirl left school early on picture day. She missed school entirely on photo makeup day. This year, for the first time ever we won't have a set of school photos of her. She hates having her picture taken anyway - her body has changed so much in the last ten months due to the anti-rejection medications that she's become uncomfortable about it.
But the beauty of having family is that people have talents that I lack and are willing to share them. So my thanks and undying admiration go to my (local) sister-in-law. She is a photographer of rare talent: landscapes, portraits, animals, weddings, babies - she rocks them all. And she took pictures of Babygirl that will allow her to see just how beautiful she really is. This is the preview shot:
Impressive.
DeeDee
Thursday, November 1, 2012
Week Eighty - Whining....
Babygirl got a lot of loot last night considering she was really only up for about two blocks of candy looting. But the grandbabies came along, and their inability to go the distance spared me the necessity of making her be the one to "give up."
She awoke this morning because her neck hurt. The light hurt, her head hurt, but her neck was the prize winner this time.
The neck pain frightens me. Truly, truly truly scares the bejeepers out of me. No fever, no blood pressure elevation, no other worrisome signs, lots of very well-trained intelligent people thinking that it ISN'T scary, but my gut disagrees.
I don't deal well with fear. I don't cope with helplessness well. I suck at patient watch-and-wait crap. I hate to see her cry because once again she cannot go to school.
This sucker was still hurting her some when I got home from work. She came with me to get some stuff for supper, and had to shade her eyes when the brake lights on the car in front of us came on, because it hurt.
I spent part of my day determining that the headaches may be aggravated by her Rapamune. That would, indeed, stink. I spent most of the rest of my day whining.
It's not pretty.
DeeDee
She awoke this morning because her neck hurt. The light hurt, her head hurt, but her neck was the prize winner this time.
The neck pain frightens me. Truly, truly truly scares the bejeepers out of me. No fever, no blood pressure elevation, no other worrisome signs, lots of very well-trained intelligent people thinking that it ISN'T scary, but my gut disagrees.
I don't deal well with fear. I don't cope with helplessness well. I suck at patient watch-and-wait crap. I hate to see her cry because once again she cannot go to school.
This sucker was still hurting her some when I got home from work. She came with me to get some stuff for supper, and had to shade her eyes when the brake lights on the car in front of us came on, because it hurt.
I spent part of my day determining that the headaches may be aggravated by her Rapamune. That would, indeed, stink. I spent most of the rest of my day whining.
It's not pretty.
DeeDee
Tuesday, September 11, 2012
Yesterday's Results......
Yesterday's visit with the doctor was same old/same old. Blood work. Breakfast. Weight (stable) height (unchanging) vital signs (acceptable). Dr. A came in and went over what we have available at the time of the visit:
Bone age (determined from an x-ray of her hand from last week, a couple of days after she turned 13) is 15, two years ahead of what it should be. Since we really do know her actual birthday, and there isn't much doubt that she was 23 months old or LESS when we got her (based not only on her stated birthday but on her size and developmental characteristics), it's interesting to see an x-ray imply that she is aging faster than expected. We discussed it, but the conclusion is that whether or not it is something to worry about, the bottom line is that it can't be changed. Babygirl is, therefore, more or less done growing. That means that she, the only one of my kids who might have actually exceeded my 5' 9", is going to finish up being 5' 2", or 3" if she's lucky. Kidney disease stinks.
Cholesterol is high, but they still haven't gotten the lipid results from April of 2011 that our doc did the day her original diagnosis was made. I know it was done, but I'm sure I never even thought about asking for those results. The kidney failure was the only thing we focused on.
Creatinine is 0.8 for the third time in a row. The kidney likes Rapamune. And so do we. A couple of mouth ulcers? No biggie.
Neutrophil count is down to about 750. Ulp. It may be from the mycophenylate, but if they cut the dose more she'll probably reject again. Okay for school. Watch for fever. Avoid sick people (um, okay, sweetie - run like hell if somebody at school sneezes or barfs on you!). Repeat locally next week and the 'team' will discuss whether or not Neupogen is a good idea.
See you in two weeks. Or sooner, depending.
She feels great, so it's a good day?
DeeDee
Bone age (determined from an x-ray of her hand from last week, a couple of days after she turned 13) is 15, two years ahead of what it should be. Since we really do know her actual birthday, and there isn't much doubt that she was 23 months old or LESS when we got her (based not only on her stated birthday but on her size and developmental characteristics), it's interesting to see an x-ray imply that she is aging faster than expected. We discussed it, but the conclusion is that whether or not it is something to worry about, the bottom line is that it can't be changed. Babygirl is, therefore, more or less done growing. That means that she, the only one of my kids who might have actually exceeded my 5' 9", is going to finish up being 5' 2", or 3" if she's lucky. Kidney disease stinks.
Cholesterol is high, but they still haven't gotten the lipid results from April of 2011 that our doc did the day her original diagnosis was made. I know it was done, but I'm sure I never even thought about asking for those results. The kidney failure was the only thing we focused on.
Creatinine is 0.8 for the third time in a row. The kidney likes Rapamune. And so do we. A couple of mouth ulcers? No biggie.
Neutrophil count is down to about 750. Ulp. It may be from the mycophenylate, but if they cut the dose more she'll probably reject again. Okay for school. Watch for fever. Avoid sick people (um, okay, sweetie - run like hell if somebody at school sneezes or barfs on you!). Repeat locally next week and the 'team' will discuss whether or not Neupogen is a good idea.
See you in two weeks. Or sooner, depending.
She feels great, so it's a good day?
DeeDee
Saturday, September 1, 2012
Happy Birthday.......
Babygirl is a teenager!
Because of a run of bad family car karma, we are still in Ambler (not our car this time - my nephew was going to drive to the park with us yesterday but my sister-in-law's car is off the road at the moment), so I drove them home last night. Rather than driving home starting at 10:30 PM we spent the night. So far pretty much everybody is still in bed. I love it when I can run a group of teens into the ground!
The hospital called with her lab results yesterday morning. The call came in just as I was having the following 'conversation' with my dyslexic nephew: "You need to move to the left to turn left. Left. Move left. No, your OTHER left!" so it took a moment to be free to speak LOL.
Her creatinine is 0.8 (which we knew). her hemoglobin is 10.1 - anemia slightly worse but relatively stable. Her white count continues to drop. Her neutrophil count is 1042. 1000 or less would have made them advise against being in a park full of people, and would have made them at the very least advise against the water slides, which would have been less than fun on a 90 degree day. They did advise against the water rides like the log flume, which do not use chlorinated water and which can result in significant facial splashing. So the good news is that her birthday weekend wasn't ruined. The bad news is....yikes. I HATE neutropenia. She's starting school in five days with a low count. I know they said she can go to school with any count over 500, but these are just numbers we are playing with. How she handles exposures to diseases like influenza, whooping cough and gastroenteritis all depend heavily on her neutrophils being available to spot the threat and respond.
I'm assuming that they think the Rapamune may be playing a role in this since they decreased the dose by 40% despite a technically therapeutic level. I didn't actually ask. I was still in the middle of the "Right. Left. Whatever!" discussion.
Next appointment is on the tenth. I will, I will, I WILL resist the temptation to repeat a blood count on my own between then and now.
DeeDee
Because of a run of bad family car karma, we are still in Ambler (not our car this time - my nephew was going to drive to the park with us yesterday but my sister-in-law's car is off the road at the moment), so I drove them home last night. Rather than driving home starting at 10:30 PM we spent the night. So far pretty much everybody is still in bed. I love it when I can run a group of teens into the ground!
The hospital called with her lab results yesterday morning. The call came in just as I was having the following 'conversation' with my dyslexic nephew: "You need to move to the left to turn left. Left. Move left. No, your OTHER left!" so it took a moment to be free to speak LOL.
Her creatinine is 0.8 (which we knew). her hemoglobin is 10.1 - anemia slightly worse but relatively stable. Her white count continues to drop. Her neutrophil count is 1042. 1000 or less would have made them advise against being in a park full of people, and would have made them at the very least advise against the water slides, which would have been less than fun on a 90 degree day. They did advise against the water rides like the log flume, which do not use chlorinated water and which can result in significant facial splashing. So the good news is that her birthday weekend wasn't ruined. The bad news is....yikes. I HATE neutropenia. She's starting school in five days with a low count. I know they said she can go to school with any count over 500, but these are just numbers we are playing with. How she handles exposures to diseases like influenza, whooping cough and gastroenteritis all depend heavily on her neutrophils being available to spot the threat and respond.
I'm assuming that they think the Rapamune may be playing a role in this since they decreased the dose by 40% despite a technically therapeutic level. I didn't actually ask. I was still in the middle of the "Right. Left. Whatever!" discussion.
Next appointment is on the tenth. I will, I will, I WILL resist the temptation to repeat a blood count on my own between then and now.
DeeDee
Saturday, August 25, 2012
Ulcer Update......
Oragel is the bomb. Babygirl slept all night, no problem. This morning I looked again, and things weren't any worse, for which I heartily thank God. I had a mental worst-case scenario in my head that involved calculating the anticipated area of the ulcer based on its rate of doubling during the day yesterday (one to two to four millimeters over 12 hours? Sixteen to two-hundred fifty-six.....? That would involve the ENTIRE inside of her cheek. Yup. Gotta shut down that imagination.).
The original ulcer looked about the same. There are two newer, smaller ones. And a couple more of the dark spots that tell me more are on the way.
The on-call nephrologist returned my call within three minutes, which is pretty impressive in my opinion. I filled her in, told her we'd been warned about this possibility, and she agreed to call some triamcinalone (steroid) paste into our pharmacy. Oh, oops! Don't do that - ours is closed on weekends! We subbed in the local CVS (she looked it up online and faxed it from her computer, which is too cool).
CVS at CHOP has my cell phone number and sends me a text when any of Babygirl's scripts are ready to be picked up there. I found out today that not only did our current prescription information pass from Philly to here, so did that little trick. I got a text telling me the paste was available for pick up as I was on my way there.
I confess, I did not know that triamcinalone came in a paste. I applied it to the ulcers and asked Babygirl what it tasted like. "It has no taste." Really? I put a smidgen of it on my tongue to taste it. "But it feel REALLY wierd!" Um, too late to tell me THAT. I cant GET that stuff OFF of my tongue! I guess I don't have to worry about it not sticking to the ulcers.
You don't supposed they mix the triamcinalone with FixoDent, do you? Ewwwww.....
DeeDee
P.S. If they knew this could happen, why not just hand me a prescription for the paste to keep on hand just in case?
The original ulcer looked about the same. There are two newer, smaller ones. And a couple more of the dark spots that tell me more are on the way.
The on-call nephrologist returned my call within three minutes, which is pretty impressive in my opinion. I filled her in, told her we'd been warned about this possibility, and she agreed to call some triamcinalone (steroid) paste into our pharmacy. Oh, oops! Don't do that - ours is closed on weekends! We subbed in the local CVS (she looked it up online and faxed it from her computer, which is too cool).
CVS at CHOP has my cell phone number and sends me a text when any of Babygirl's scripts are ready to be picked up there. I found out today that not only did our current prescription information pass from Philly to here, so did that little trick. I got a text telling me the paste was available for pick up as I was on my way there.
I confess, I did not know that triamcinalone came in a paste. I applied it to the ulcers and asked Babygirl what it tasted like. "It has no taste." Really? I put a smidgen of it on my tongue to taste it. "But it feel REALLY wierd!" Um, too late to tell me THAT. I cant GET that stuff OFF of my tongue! I guess I don't have to worry about it not sticking to the ulcers.
You don't supposed they mix the triamcinalone with FixoDent, do you? Ewwwww.....
DeeDee
P.S. If they knew this could happen, why not just hand me a prescription for the paste to keep on hand just in case?
Friday, August 24, 2012
Mom?.......
"Mom, my cheek hurts."
Uh-oh. Watch out for oral ulcers, they said.
"Hop up here and let me look." Way back opposite her molars is a dark spot. It looks just like any blood blister, about a millimeter across.
"I think you bit your cheek." Since she does this with roughly the regularity with which she trips over cracks in the sidewalk, I was relieved. I went to work and forgot all about it.
When I arrived home she complained again. A second look revealed a small ulcer, about 2 mm across, with a small red rim. The doctors told us to call 'right away' if we saw ulcers, but it's 6 PM on a Friday night, which is, of course, exactly when all medical disasters strike. That, or 2 AM Saturday, which was Citygirl's preferred "I have an earache and a fever" time.
"We'll get some Oragel for you when we go shopping tonight."
We went out for dinner. Babygirl didn't do so well eating. A search of Walmart revealed that Oragel and similar products are hiding with the denture adhesives. Thankfully, not too far away from the melatonin, which I've decided to try for an ongoing bout of insomnia.
By the time we got home the ulcer was about 4 mm across, with a significant red rim. Oragel was very helpful, and she's resting comfortably now. I'm hoping that my "wait until morning and see" philosophy doesn't end too badly. Odds are good that my melatonin will knock me into a decent sleep just in time for her to decide she can't tolerate the pain in her cheek anymore LOL.
Ugh.
DeeDee
Uh-oh. Watch out for oral ulcers, they said.
"Hop up here and let me look." Way back opposite her molars is a dark spot. It looks just like any blood blister, about a millimeter across.
"I think you bit your cheek." Since she does this with roughly the regularity with which she trips over cracks in the sidewalk, I was relieved. I went to work and forgot all about it.
When I arrived home she complained again. A second look revealed a small ulcer, about 2 mm across, with a small red rim. The doctors told us to call 'right away' if we saw ulcers, but it's 6 PM on a Friday night, which is, of course, exactly when all medical disasters strike. That, or 2 AM Saturday, which was Citygirl's preferred "I have an earache and a fever" time.
"We'll get some Oragel for you when we go shopping tonight."
We went out for dinner. Babygirl didn't do so well eating. A search of Walmart revealed that Oragel and similar products are hiding with the denture adhesives. Thankfully, not too far away from the melatonin, which I've decided to try for an ongoing bout of insomnia.
By the time we got home the ulcer was about 4 mm across, with a significant red rim. Oragel was very helpful, and she's resting comfortably now. I'm hoping that my "wait until morning and see" philosophy doesn't end too badly. Odds are good that my melatonin will knock me into a decent sleep just in time for her to decide she can't tolerate the pain in her cheek anymore LOL.
Ugh.
DeeDee
Monday, May 28, 2012
Travel Day.....
While y'all are enjoying your Memorial Day picnics and remembrances, Babygirl and I will be on the road in a set of borrowed wheels (thanks to Mr. and Mrs. O, who because of Mr. O's transplant REALLY understand why we need this!). Sadly, it's not a convertible, although I admit that that would defeat the purpose. It's a lovely day to drive by the looks of things, and we located the missing Ipod charger so we'll have some good tunes on the way!
We'll have the evening with family all the same. I'm so grateful that we have a welcoming home at the other end of this journey! I'm bringing watermelon, but I'm thinking that maybe another batch of s'mores might be in order....
I'm not looking forward to what tomorrow holds. Procedures are never fun, and despite the wonderful folks at CHOP, admission doesn't seem like such a good time either. I'll do my best to keep everybody updated, although I'm betting that we won't have the kidney biopsy results until Wednesday.
Oh, and here's another I'm-medical-so-I-don't-know-what-normal-people-think moment: Just because they are performing a biopsy doesn't mean that anyone is at all concerned about the possibility of Babygirl having cancer. Biopsies are done for a variety of reasons, and in this case, it's to see what is causing the decline in kidney function. Tissue looks different depending on what's hurting it, so if it's medication damage it will look different than if there is rejection-related damage.
I guess if I get to pick I want it to be medication related. That way, I assume, they can change medications and make things better. Doncha just love that Pollyanna attitude?
DeeDee
We'll have the evening with family all the same. I'm so grateful that we have a welcoming home at the other end of this journey! I'm bringing watermelon, but I'm thinking that maybe another batch of s'mores might be in order....
I'm not looking forward to what tomorrow holds. Procedures are never fun, and despite the wonderful folks at CHOP, admission doesn't seem like such a good time either. I'll do my best to keep everybody updated, although I'm betting that we won't have the kidney biopsy results until Wednesday.
Oh, and here's another I'm-medical-so-I-don't-know-what-normal-people-think moment: Just because they are performing a biopsy doesn't mean that anyone is at all concerned about the possibility of Babygirl having cancer. Biopsies are done for a variety of reasons, and in this case, it's to see what is causing the decline in kidney function. Tissue looks different depending on what's hurting it, so if it's medication damage it will look different than if there is rejection-related damage.
I guess if I get to pick I want it to be medication related. That way, I assume, they can change medications and make things better. Doncha just love that Pollyanna attitude?
DeeDee
Friday, May 25, 2012
Aw, Crap - Part Two......
We repeated blood work yesterday morning. Late yesterday afternoon the nurse practitioner called with the results.
Babygirl's creatinine is still 1.1. Re-hydrating her did not help, so there is great concern about why the kidney is so unhappy. They suspect it may be the tacrolimus, which prevents rejection but can, in and of itself, cause kidney damage. They want us to come to Philadelphia on Tuesday morning, instead of next Monday (so much for "see you in two weeks"!) to have STAT blood work. If her creatinine remains elevated, she will be admitted overnight for a kidney biopsy. Oh, yippee.
And because that really isn't quite enough crappy news, her neutrophil count has dropped some more. So no church on Sunday, no going out in public, no friends over and so on. And because they think her OTHER anti-rejection medication is causing that, we've had to decrease the dose again, which logically means that her kidney is more likely to be rejected, so we're more likely to end up needing that biopsy.
So last night hubby and I decided to pretend it was a weekend. We barbecued, and had a couple of drinks and got silly. At one point I asked him, "Is there any problem alcohol can't solve?" He replied, "Alcoholism." I laughed myself stupid. I love that guy!
DeeDee
Babygirl's creatinine is still 1.1. Re-hydrating her did not help, so there is great concern about why the kidney is so unhappy. They suspect it may be the tacrolimus, which prevents rejection but can, in and of itself, cause kidney damage. They want us to come to Philadelphia on Tuesday morning, instead of next Monday (so much for "see you in two weeks"!) to have STAT blood work. If her creatinine remains elevated, she will be admitted overnight for a kidney biopsy. Oh, yippee.
And because that really isn't quite enough crappy news, her neutrophil count has dropped some more. So no church on Sunday, no going out in public, no friends over and so on. And because they think her OTHER anti-rejection medication is causing that, we've had to decrease the dose again, which logically means that her kidney is more likely to be rejected, so we're more likely to end up needing that biopsy.
So last night hubby and I decided to pretend it was a weekend. We barbecued, and had a couple of drinks and got silly. At one point I asked him, "Is there any problem alcohol can't solve?" He replied, "Alcoholism." I laughed myself stupid. I love that guy!
DeeDee
Tuesday, May 22, 2012
Aw, Crap......
I finally got a call from our nurse practitioner about yesterday's lab results. It's not pretty. The only really good news is that her tacrolimus level is adequate and not high enough to be the cause of all the bad news.
The bad news? Well, we already knew her creatinine was too high. But her bone marrow is not happy. Her anemia is worse, her white cell count is too low, and her neutrophil count is below 1000 again. It's not as bad as last time, but it's enough for us to need to keep her home from school until we get the results of the labs we're going to do on Thursday morning.
The worse news? There appears to be only one medication left on board that can be causing the problem with her bone marrow, and that's the mycophenylate. They already decreased the dose in case it was the cause of the problem originally, and they stopped two other medications. And they can't decrease it more because her creatinine is going UP which of course could be a sign of rejection and not merely dehydration.
And if her creatinine IS up because she was dehydrated, it was my fault. We drove to Philly on a hot afternoon, and Rhonda the Honda does not have functioning air conditioning. Babygirl slept, as usual, but I was pounding down water the whole way, and I should have made her do the same.
I guess we're going to have to start taking the big green van, but that will increase our gas costs about threefold, and I'm pretty sure it won't fit in CHOP's parking garage. We simply cannot afford to fix the AC in Rhonda for a while.
Lord.
And that's a prayer, not a cuss.
DeeDee
The bad news? Well, we already knew her creatinine was too high. But her bone marrow is not happy. Her anemia is worse, her white cell count is too low, and her neutrophil count is below 1000 again. It's not as bad as last time, but it's enough for us to need to keep her home from school until we get the results of the labs we're going to do on Thursday morning.
The worse news? There appears to be only one medication left on board that can be causing the problem with her bone marrow, and that's the mycophenylate. They already decreased the dose in case it was the cause of the problem originally, and they stopped two other medications. And they can't decrease it more because her creatinine is going UP which of course could be a sign of rejection and not merely dehydration.
And if her creatinine IS up because she was dehydrated, it was my fault. We drove to Philly on a hot afternoon, and Rhonda the Honda does not have functioning air conditioning. Babygirl slept, as usual, but I was pounding down water the whole way, and I should have made her do the same.
I guess we're going to have to start taking the big green van, but that will increase our gas costs about threefold, and I'm pretty sure it won't fit in CHOP's parking garage. We simply cannot afford to fix the AC in Rhonda for a while.
Lord.
And that's a prayer, not a cuss.
DeeDee
Friday, May 4, 2012
Home Again, Home Again....
(This post was originally written the day after we returned from the hospital. It got delayed because the other posts seemed more important. I couldn't figure out an easy way to make it current, and I like it, so here it is.)
We made it home Sunday afternoon, and spent Sunday evening recovering as best we could from three nights of broken hospital sleep. I returned to work today, and Hubby had to leave periodically, leaving Babygirl in phone contact with us and a neighbor. Curlygirl is sick and couldn't come over, and Boo is sick so Boo'sMom couldn't come. In a perfect world one of us would have totally had the day off, but hey, we are living proof that this is not a perfect world.
Babygirl is closer to "back to normal" each day. She ate dinner tonight, the first full meal I've seen her eat since Tuesday night. Teacher is coming tomorrow to continue her State testing. Life marches on.
I didn't see too many patients today - most were cancelled in case we didn't make it back from Philly. But needless to say, at least two had illnesses that made me have to consider using the medication that wiped out Babygirl's immune system.
And I used it.
Nothing has changed at all about what I know of the risks of the drug - I myself am allergic to it. What has changed is my personal experience, my personal awareness of the dangers. It doesn't merely impact THIS drug - I had to think a bit longer and a bit harder about ALL of the medications my patients were on today, double checking mentally to see what, if anything I can do about risks. And the answer did not surprise me: "Very little."
All I can do is be vigilant. I always warn my patients about common side effects of medications, but there is no way on earth even the fast-speaking commercial voiceovers can cover all the potential risks, and no way any patient would listen beyond the first three or four (or if they did, then no way the would ever take ANY medication. What sane person would?). The only other thing I can do is to ask my patients to be vigilant. Taking a moment to educate people on the common risks of their meds is easy. Figuring out where to draw the line on the rarer stuff is difficult. Frankly, if people knew ALL of the risks of medications, no one would take them.
I feel a bit like I'm in the Hunger Games: "And may the odds be EVER in your favor!"
DeeDee
We made it home Sunday afternoon, and spent Sunday evening recovering as best we could from three nights of broken hospital sleep. I returned to work today, and Hubby had to leave periodically, leaving Babygirl in phone contact with us and a neighbor. Curlygirl is sick and couldn't come over, and Boo is sick so Boo'sMom couldn't come. In a perfect world one of us would have totally had the day off, but hey, we are living proof that this is not a perfect world.
Babygirl is closer to "back to normal" each day. She ate dinner tonight, the first full meal I've seen her eat since Tuesday night. Teacher is coming tomorrow to continue her State testing. Life marches on.
I didn't see too many patients today - most were cancelled in case we didn't make it back from Philly. But needless to say, at least two had illnesses that made me have to consider using the medication that wiped out Babygirl's immune system.
And I used it.
Nothing has changed at all about what I know of the risks of the drug - I myself am allergic to it. What has changed is my personal experience, my personal awareness of the dangers. It doesn't merely impact THIS drug - I had to think a bit longer and a bit harder about ALL of the medications my patients were on today, double checking mentally to see what, if anything I can do about risks. And the answer did not surprise me: "Very little."
All I can do is be vigilant. I always warn my patients about common side effects of medications, but there is no way on earth even the fast-speaking commercial voiceovers can cover all the potential risks, and no way any patient would listen beyond the first three or four (or if they did, then no way the would ever take ANY medication. What sane person would?). The only other thing I can do is to ask my patients to be vigilant. Taking a moment to educate people on the common risks of their meds is easy. Figuring out where to draw the line on the rarer stuff is difficult. Frankly, if people knew ALL of the risks of medications, no one would take them.
I feel a bit like I'm in the Hunger Games: "And may the odds be EVER in your favor!"
DeeDee
Tuesday, April 24, 2012
Out of School Again....
When we went to see the doctor yesterday, we discovered that Babygirl's white blood cell (WBC) count is very low. More importantly, she is neutropenic (critically short on neutrophils, the WBC's that fight bacterial infections). Since her meds already make it hard for her to fight fungi and parasites, taking out yet another arm of her immune system is a very, very bad idea.
This problem is a side effect of one of her meds. She takes trimethoprim/sulfamethoxazole (aka Bactrim or Septra) daily to prevent parasitic infections, and needs to remain on this for the first six months post transplant. This medication is apparently shutting off her ability to make neutrophils, and stopping the medication will likely correct the problem. Well, crap happens, right?
The problem I'm having with this is that they knew LAST week that this was a problem. They apparently discussed it on Tuesday with the Transplant Team and decided to stop the TMP/SMX and start a new medication for parasite prevention. Problem is, they never told US, or called the new prescription to the pharmacy. So last week her WBC count was 2.7 (normal is 4.5 - 10). This week it's 1.4.
If Babygirl catches a bacterial infection (and strep is going around her school!) she will be unable to fight it. Antibiotics only take you so far if your own body doesn't contribute to the battle. So she's home until the counts come up. We'll go Thursday to the hospital across the street for this one - thank God we don't have to go 70 miles this time.
And not to give me a heart attack or anything, but she called me this morning at work and told me she has a sore throat. There's no fever, and it doesn't look to terrible, so we ride it out. Yup, crap happens.
On the lighter side, you should SEE the medication she gets instead. It's a liquid, a slightly brighter shade of yellow that a raw egg yolk, and at least twice as thick. It looks utterly disgusting. Poor Babygirl!
DeeDee
This problem is a side effect of one of her meds. She takes trimethoprim/sulfamethoxazole (aka Bactrim or Septra) daily to prevent parasitic infections, and needs to remain on this for the first six months post transplant. This medication is apparently shutting off her ability to make neutrophils, and stopping the medication will likely correct the problem. Well, crap happens, right?
The problem I'm having with this is that they knew LAST week that this was a problem. They apparently discussed it on Tuesday with the Transplant Team and decided to stop the TMP/SMX and start a new medication for parasite prevention. Problem is, they never told US, or called the new prescription to the pharmacy. So last week her WBC count was 2.7 (normal is 4.5 - 10). This week it's 1.4.
If Babygirl catches a bacterial infection (and strep is going around her school!) she will be unable to fight it. Antibiotics only take you so far if your own body doesn't contribute to the battle. So she's home until the counts come up. We'll go Thursday to the hospital across the street for this one - thank God we don't have to go 70 miles this time.
And not to give me a heart attack or anything, but she called me this morning at work and told me she has a sore throat. There's no fever, and it doesn't look to terrible, so we ride it out. Yup, crap happens.
On the lighter side, you should SEE the medication she gets instead. It's a liquid, a slightly brighter shade of yellow that a raw egg yolk, and at least twice as thick. It looks utterly disgusting. Poor Babygirl!
DeeDee
Monday, March 26, 2012
Coping With the Side Effects......
Babygirl has been most fortunate when it comes to handling all the various meds she's had to deal with over the past year. The phosphate binder didn't bind her. No problems with iron, vitamins, and hormone adjusters. The new anti-rejection protocol doesn't make her hands tremble, cause nausea, make her hair fall out, or any of the other potentially far more dire side effects (so far).
Except the prednisone.
It's a life-saving drug, I know. But its short-term side effects can be miserable. When Curlygirl needed it to treat her asthma, we referred to it as "Demon Possession in a Bottle." Usually by about the third day she would start throwing food at the table, and once or twice I think I saw her head spin. When I was on it in 2010, it caused mood swings and hot flashes that made menopause seem like STABLE time period in my life. You can ask any of my children, and they'll tell you that I was NOT stable during menopause LOL. The drugs long term side effects can be disastrous. Cataracts, obesity, diabetes, osteoporosis, thin skin - it's a long and ugly list.
Babygirl is going to be on prednisone for the rest of her life, although at much lower doses than she started on. She has been fortunate in that the drug does not make her moody, although it does make her hyperactive. The cataracts, diabetes and osteoporosis we have to keep observing for.
But she has the weight gain.
When Babygirl was diagnosed she weighed about 103 pound, if I recall correctly. Her "dry weight," the weight after dialysis, was around 98 pounds. During her time on dialysis she grew only 1/2 inch.
Since the surgery February 3rd, she has grown another 1/2 inch, gained a shoe size, and put on nearly 30 pounds. The first ten pounds were absolutely needed to catch up from a year of being ill. Another 2 match the height gain. The rest is settling on her belly and face, and since she is a normal American adolescent girl, she is becoming unhappy about this. Her BMI (Body Mass Index, a ratio of height to weight adjusted for age) has risen from below the 25th percentile to above the 75th percentile - not obese, but a huge jump.
Her legs are also swollen. The accounts for a little bit of the weight, and is a combined side effect of the prednisone and amlodipine, which she takes for high blood pressure (oh, that one can cause swollen gums, too!). This makes her feet hurt at the end of the day, especially while walking back and forth to school . We could, of course, drive her one or both ways, but then she'd lose her main source of exercise, which would then add to the other problems.
We spent part of Saturday shopping for new clothes and shoes. It was not a fun time. Aside from the "I'm fat." "I can't believe I need a shirt this size." and "Mom, look how swollen my legs are!", she got very tired long before we found every thing we needed.
She's in Philly with her dad seeing the doctors now. It will be interesting to see whether restarting school with its attendant increase in activity will have had any impact on these problems. She continues to decrease the amount of prednisone she takes, and that will (hopefully) also help.
I raised one child with an eating disorder. I'm altogether too aware of the kinds of comments that trigger food avoidance, and we are starting to hear them from well-meaning people. "Wow! You've really put on some weight!" is really never, ever okay to say to ANYONE. No one I know would even consider saying such a thing to an adult, so why, may I ask, do people think it's okay to say to a KID? Especially a 12 year old girl?
DeeDee
Except the prednisone.
It's a life-saving drug, I know. But its short-term side effects can be miserable. When Curlygirl needed it to treat her asthma, we referred to it as "Demon Possession in a Bottle." Usually by about the third day she would start throwing food at the table, and once or twice I think I saw her head spin. When I was on it in 2010, it caused mood swings and hot flashes that made menopause seem like STABLE time period in my life. You can ask any of my children, and they'll tell you that I was NOT stable during menopause LOL. The drugs long term side effects can be disastrous. Cataracts, obesity, diabetes, osteoporosis, thin skin - it's a long and ugly list.
Babygirl is going to be on prednisone for the rest of her life, although at much lower doses than she started on. She has been fortunate in that the drug does not make her moody, although it does make her hyperactive. The cataracts, diabetes and osteoporosis we have to keep observing for.
But she has the weight gain.
When Babygirl was diagnosed she weighed about 103 pound, if I recall correctly. Her "dry weight," the weight after dialysis, was around 98 pounds. During her time on dialysis she grew only 1/2 inch.
Since the surgery February 3rd, she has grown another 1/2 inch, gained a shoe size, and put on nearly 30 pounds. The first ten pounds were absolutely needed to catch up from a year of being ill. Another 2 match the height gain. The rest is settling on her belly and face, and since she is a normal American adolescent girl, she is becoming unhappy about this. Her BMI (Body Mass Index, a ratio of height to weight adjusted for age) has risen from below the 25th percentile to above the 75th percentile - not obese, but a huge jump.
Her legs are also swollen. The accounts for a little bit of the weight, and is a combined side effect of the prednisone and amlodipine, which she takes for high blood pressure (oh, that one can cause swollen gums, too!). This makes her feet hurt at the end of the day, especially while walking back and forth to school . We could, of course, drive her one or both ways, but then she'd lose her main source of exercise, which would then add to the other problems.
We spent part of Saturday shopping for new clothes and shoes. It was not a fun time. Aside from the "I'm fat." "I can't believe I need a shirt this size." and "Mom, look how swollen my legs are!", she got very tired long before we found every thing we needed.
She's in Philly with her dad seeing the doctors now. It will be interesting to see whether restarting school with its attendant increase in activity will have had any impact on these problems. She continues to decrease the amount of prednisone she takes, and that will (hopefully) also help.
I raised one child with an eating disorder. I'm altogether too aware of the kinds of comments that trigger food avoidance, and we are starting to hear them from well-meaning people. "Wow! You've really put on some weight!" is really never, ever okay to say to ANYONE. No one I know would even consider saying such a thing to an adult, so why, may I ask, do people think it's okay to say to a KID? Especially a 12 year old girl?
DeeDee
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