Comin' Round the Mountain.....

The mountain that has been parked on my chest for the past week or so is crumbling a bit.  My re-visit to my doc yesterday resulted in a 50% increase in my steroid dose, right before bedtime.  I manage to sleep, really sleep, almost for two four stretches with only one ugly coughing spell in between.  It was lovely. 

But increasing steroids has a price.  I was crying at my first glimpse of my schedule this morning, which made my nurses scatter.  The good news is that this resulted in a drastic reduction in my patient count.  I managed to hang in long enough to clean up a ton of paperwork and backlogged 'tasks'.  There is still a lot to do, but it doesn't feel quite so overwhelming.  Next mood swing, five minutes.

Working to breathe is exhausting.  As long as I was sitting at my desk I was fine.  If I had to move from the desk to the nurses' station and back, I was about as winded as if I'd sprinted through the parking lot from Walmart to TGIFriday's.  So now that I can sleep, can breathing be far behind? 

I'm hopeful.

DeeDee

Remaking Godzilla.....

There is nothing like a good horror movie, or so I've been told.  I haven't really been able to watch one since I snuck downstairs and spied on the Friday Night Fright Night Late Night viewing of "The Blob" when I was about seven years old.  I have no idea what was so terrifying about it, but I've never been able to sit through a horror flick since then. No Freddy.  No Chucky. No "Day After Tomorrow" even. My kids mock me.

So I've never understood why anybody would REmake a scary movie.  I mean, really, if it scared the bejeepers out of everybody the first time, why go for it again?

But me, I'm just livin' the dream here.  Because  this wasn't scary enough:  http://kidneedsakidney.blogspot.com/2012/09/week-seventy-five-godzilla.html , I'm just doing it all again.  Like a bad redo of a movie that wasn't anything but frightening the first time. 

At least this time I've dodged the ER.  I have my little nebulizer an my bottle of steroids.  But every two hours for the last three nights running I've pulled up out of a sound sleep to the kind of cough that just empties your stomach.  I expect tonight will be more of the same.  I'm on day five of prednisone, so tomorrow the doc's going to get a message about how well I'm not doing.

Oh, did I mention I worked today?  Yeah, it was fun.  I am a little better, though - I didn't feel the overwhelming need to fall asleep every two hours, so things are looking up.

DeeDee

Appointments Made....

This virus has, as usual, triggered my asthma.  Getting out of bed this morning left me winded, so I called the family doc to see if he'd be willing to start some prednisone.  I'd like to avoid a rerun of  that ER visit in February of 2013.  Guess he'd like that too - he's seeing me in an hour.  Apparently I sounded rather impressively ill to the receptionist because my call got sent straight to the nurse. Other than that, I'm feeling better.  I appear to have given up the razor-blade-swallowing-festival that's been inhabiting my throat, although I still sound like some sort of amphibian when I speak.

On the Babygirl end of things:  I received no call backs and no email replies (beyond an 'I'll get to that tomorrow' from Monday') regarding her appointment despite leaving daily messages.  This morning when my daily 8:30 alarm went off (yeah.  I have an alarm set on my phone to go off daily at 8:30 to remind me that the phones are open at Neurology so I don't forget to start calling) I called, and instead of leaving a message for the doctor/nurse (option 3, then 3, then 3, then 4) I pushed the appointment button (option 1).  I got a good scheduler.

I explained the problem in what was probably the longest run-on sentence she'll have to deal with today, and in amphibian, no less.  She took it all in, and put me on hold for a bit to try to talk to the coordinator (agreeing with me that THAT person is no easy person to reach).  After a few minutes she came back ("Well, I got tired of waiting."  Jeepers, really?) and looked over all of the back-and-forth notes from all the nurses and doctors.  Dr Y is actually NOT seeing office patients on the day we need to see him (I misunderstood, he is handling hospital patients that week), but his nurse practitioner is available and has plenty of appointments free for headache patients on either of the days we need to be seen and we've see her before and....

W. T.  H. 

I have no problem seeing the NP.  I know from experience that she'll go drag Dr Y out of whatever hole he's hiding in if she thinks he needs to actually look at Babygirl.  What I don't get is why this was too complicated for the last scheduler or the nurse to figure out.  It was, of course, no problem whatsoever to make a matching appointment with nephrology.  They'd fit us in tomorrow if we needed them to.  Today, even.

The good news is that I can put patients in on Monday and Tuesday to help make up for being out so much this week. 

DeeDee

At Least It's Not the Flu....

I woke up Sunday morning feeling just a little bit as if being dead would be a nice option.  Babygirl had a killer headache and my nose was running and my eyes wouldn't stay open, so I sent hubby a text to let him know we weren't actually deceased and crawled back into bed.

I can't recall the last time I spent the nearly 36 hours in bed.  I got up Monday, worked 3/4 of a day, came home and immediately went to sleep.  I awoke this morning voiceless and achy. 

Now, I know the difference between a cold and the flu, but this year's flu has been breaking through the vaccine and causing atypical symptoms.  I haven't had a cold in years that left me so exhausted and pain-soaked.  And there is Babygirl to consider.  I mean, if I have influenza, do I have to move out?  But technology is a wonderful thing.  We now have rapid flu tests in the building for the pediatric clinic upstairs, so we swiped one. 

The downside to this test is that it requires a nasopharyngeal swab. No one on my staff has done one, so I was put in the rather awkward position of having to demo the technique on my own nose.  Just so you know, 'nasopharyngeal' means a thin Q-Tip in your nostril straight back (not up!) across the top of your palate to the back of your throat.  Rotate 360 degrees twice, cough (or gag as the spirit moves you) and voila! You have collected your specimen.  The nurses were appalled that I was able to simply do this to myself.  It was, frankly, less scary than having someone do it who looked like they might be willing to try going UP my nose.  There is no 'up' in a nose.  Honest. 

The test was negative.  This was good for several reasons.  First, I'm not bringing something deadly home to Babygirl.  Second, there has been so much influenza that the clinic upstairs has had only positive test results. I proved that negative results were possible, which was reassuring.  Last, it means I didn't expose all of yesterdays' patients to flu either.

I managed to stay awake for a couple of hours after I got home today, but I fell asleep before dinner anyway.  And I'm about done now.  Colds just stink.

DeeDee

Making an Appointment......

Slogging through January leaves so little of interest to talk about. We are marching ever-so-slowly into Babygirl's new medication.  They want us to adjust the dose every two weeks and report back in SEVEN weeks.  We have an appointment next Tuesday.  We are negotiating about whether or not we need to go.

Appointments with neurology are ridiculous.  Babygirl was in the hospital twice in November, and we fortunately had a visit already scheduled for immediately after one of those stays.  We were told to come back again in a month.  Next week was the 'soonest they could get us in'.  "But he told us he wants us there in a MONTH."  Well, sucks to be you, doesn't it?  Two months is what we have, so two months is what it is. 

So last week as the nurse and I were discussing the medication change and the timing of her appointment.  I pointed out that perhaps seeing her next week when he wanted an update in nearly two months might not be the best in timing, and since Babygirl has two days of no school for no good reason in mid-March, perhaps that would be a better time? Especially as she'll be due to see the kidney docs about then as well? Gee, the nurse agrees, that makes perfect sense - let me check with the doctor. 

He apparently agreed, since I got a call from scheduling, who informed me that although the doctor wants to see Babygirl on one of those days in March when she has no school, he has no available appointments so she can't let us come those days.  Ummmm......seriously?  He's working those days, right?  Yes, yes he is.  But he can't see her. Sucks to be you. 

Now I know that this poor soul is stuck between good customer service and not pissing of the doctor she works for.  But it seems to me that if the good doctor has given her specific dates, that constitutes de facto permission to mess with his schedule a bit - it does in my office.  And at this point I'm more than a little tired of this game.  "You are going to have to negotiate with the nurses about this.  This is when he wants to see her.  Call me back next week." 

At this point I have two days scheduled off next week to travel for a Tuesday appointment at his off-site office that I likely will be cancelling, and no days scheduled off for the trip I'll likely be taking in March.  It feels like it shouldn't be this hard.

DeeDee

January Musings.....

Getting back into the groove after the holidays seems like an eternal process.  I just got the tree down on Saturday, and Babygirl and Curlygirl hiked the Christmas bins back up to the attic for me on Sunday.  The living room is ten sizes bigger, but so much darker.  I think maybe I should by some soft white LED lights for the mantle to mimic the more gentle background light that settles in our hearts at Christmastime, at least until the sun comes back! 

January is almost half over already. How did that happen? In a month when it feels like I am slogging through my work and sleeping through my evenings, the days seem to be flipping past awfully fast.

I sent Citygirl's love a text last night.  He didn't have me on his contact list, so I messed with his head a while while  he tried to guess who I was.  It was fun.  I need a better hobby.

Work varies from crazy to depressing.  Young people shouldn't be sick.  Moms shouldn't lose their kids.  Hospice shouldn't have so many, many patients.  There's a feeling of fighting a war I can't really win. And then the old ladies come, and laugh at their aches and pains and sorrows and bring the sunshine back with them. 

Hmm.  Maybe I AM back in the groove. 

DeeDee

Taking Risks.....

Everything in life is a risk, right?  Every choice we make has the potential for consequences down the road that we can't possibly anticipate or imagine.  Have you read The Five People You Meet In Heaven by Mitch Albom?  An entire fascinating novel on the subject. 

But I digress.

I belong to a British support group online for parents of kids with kidney disease.  I put up this post this morning:

"Ana, now 15, is approaching the third anniversary of her kidney transplant. The first 6 months were marvelous from her perspective - no dialysis and no pain. Since then she's been plagued by daily headaches that have been diagnosed as migraine. Between transplant meds, inactivity due to pain, and now migraine meds she's gained nearly six stone (had to Google that LOL not a term we use in the states!) and her current medication is making her evil. Next week they are taking a chance and changing her to topiramate, which (rarely) can cause kidney stones, because we are out of safer options. We'd appreciate thought and prayers. (and yes, whatever it is you are going to suggest, we've tried that or it isn't safe LOL)"

Truth is, we are out of safer choices.  After more than two years of headaches and medications that kinda sorta help a little, she's on a combination of Depakote and Keppra.  While they warned us that the Keppra could cause personality changes (it didn't) it's the Depakote that's made less than  her usual pleasant self.  So even though the Depakote has helped a little with the headaches (and by 'a little' I mean they have gone from daily with no break at all during the entire day to daily with some pretty good hours in the evening and one good day a week and she seems less depressed) I think we need to keep looking.

But....

Kidney stones.  Crap.

I know, better than anybody, that you only get the side effects of a medication that you get, and not all of the ones on the list.  The kidney team has a plan to watch out for even the potential for the stones.  But, damn.

We won't be making the switch until she gets some additional blood tests, and since I didn't get the fax for that by the end of yesterday, that will take some time, so maybe by Wednesday?

Prayers appreciated.

DeeDee

Resetting the Clock......

Two weeks' worth of insomnia culminated in a pretty spectacular migraine yesterday afternoon.  I had two holiday weeks with four day weekends, so the late nights led to late mornings and a two week break from the gym.  It was relaxing, but I hate the feeling of being unable to fall asleep at a reasonable hour.

So last night I decided to try to reset the clock.  I could tell by 11 that I wasn't going to fall asleep.  The long nap that knocked the migraine into submission was still fresh, and there was no possible way on earth that my eyes were going to close again anytime soon.  So I alternated between marathons of 'Storage Wars', 'Ridiculousness' and 'Law and Order: SVU' while reading Gone Girl (what a truly enjoyably psychopathic story!) and playing Sudoku, and stayed up all night.  I dozed off for a few minutes around 3:30, and at 4:30 I loaded up and went to the gym, worked out, showered and relaxed in the sauna.

By 8 o'clock I had done over 100 work tasks over breakfast, gotten Babygirl up for her meds, gotten Mom up for HER meds (including her daily weight, which requires more than a little coaxing), coffee'd everybody and arrived at my desk.  By 5 o'clock the last of my more than 100 remaining work tasks were swimming in front of my eyes, so I drove home.  The presence of Babygirl's daily tutor did not stop me from putting on my PJ's and taking a 15 minute Death-and-Resurrection nap on the couch while dinner was cooking.  I didn't even see the tutor leave.

So now I'm running on the strength of the nap, hoping it wears off by ten so I can enjoy the rest of my full-moon week.

DeeDee

Gym Class.....

Babygirl and I went to the gym together yesterday. 

Given how craptastic her life has been for the past few months this was more than a small accomplishment.  Her mornings have been owned by pain and darkness, ruled by nausea. and managed by medication and sleep.  This past week she's had some day/night reversals, and suddenly she is waking up in the early morning, headache free.  It's not a long enough period of time to be able to call it a real trend, but it is nice to see her with the lights ON in the morning.

But I digress.

Babygirl gained quite a bit of weight after the kidney transplant.  This was multifactorial:  Prednisone prevents rejection but packs on the pounds.  Headaches lead to immobility which leads to muscle mass loss which in turn causes a decrease in metabolism.  And the new medication for her headaches has 'carbohydrate craving' as a potential side effect.  She isn't walking half a mile to and from school every day, or attending PE class three times a week.

Medication side effects are an interesting thing.  When you ask laypeople how likely any one person is to have a 'common' side effect of a drug they tend to answer with "Twenty to fifty percent" when the odds are usually less than five percent.  And people don't think in these terms:  You only get the side effects that YOU get - not all of the potential side effects listed on the paper.  I've been on prednisone for over a month at a time and lost weight (rare, very rare) and been on Depakote (Babygirl's new med) and had no weight effect at all (common enough).  But then, most people on anti-rejection medications don't have any increase in their migraines either.  Babygirl is just lucky like that.

So we have a battle to fight.  And few tools to fight with.  Trying to make Hubby's and my free time coincide with Babygirl's well time so that we can go to the gym with her is our New Year's hope. 

Yesterday was a great day.  We went to the gym, exercised for half an hour, and later went to the mall and walked.  She didn't get a headache until the end of the day, and she is up this morning already so the plan to try out the pool today will likely happen. 

If we can make this a regular occurrence and find a way to document it, I think the school will allow it to stand as part of her PE requirement, which would take off some of the homework pressure. 

So here I am, almost 57 years old, and attending freshman gym class.

But as Babygirl pointed out:  "This doesn't smell like the school locker room. At. All."  Ah, the bright side.

DeeDee