Monday, September 30, 2013

The Purpose of a Long Drive....

Babygirl's arrival in the Transplant Clinic surprised the front desk staff.  After all, we just left!  And we weren't on the schedule. 

As always, Babygirl and I came in on more or less empty stomachs.  We'd each had some coffee an climbed into Beauty for the traffic-raddled ride into downtown.  Usually there are blood work orders waiting.  We hit the lab at 8, follow with breakfast and meds in the cafeteria, and come back to be seen. This time?  "They want to examine her before they order any labs."

Well, that makes perfect sense to me. 

We waited (not long) and saw the nurse practitioner, who pulled up the ER labs.  "Well, it isn't a urinary tract infection!"  (No kidding.  I refrained from fist-pumping to celebrate my superior diagnostic skills.)  Then the doc, who examined her, the labs, the history, and who said, unabashedly, "I have no idea what this is."  Um, could you teach a seminar to doctors in general on how to say that out loud instead of, say, giving out unnecessary antibiotics for spurious 'UTI's'? 

Bottom line:  Observe.  Keep a diary.  Return to the ER if there are any more interesting symptoms, like fever and vomiting  but stay home for mere repeats of this same pain.  Maybe she needs a Gynecologist (or as my friend puts it, a Groinecologist).  Maybe (just my thought) it's a variation on the migraine (it happens).  See you in December as scheduled.  Get these labs done right after Halloween.  No need for labs today.  Enjoy your breakfast.

We were out the door of the clinic by 9:20.

So the entire purpose of our 384 mile round-trip was apparently to enjoy the extreme blue-sky beauty of Mount Pocono in full fall foliage followed by a glass of wine with my best friend.  It was amazing, absolutely amazing - both the trees and the friendship.  Now to catch up on work.


Saturday, September 28, 2013


When you are sitting in an ER with your chronically ill child you inevitably consider that you might end up admitted.  In fact, BEFORE you go to the ER with your child you will have already begun to prep for what will undoubtedly be a long, long day. 

When I left work to go home to get Babygirl and take her to the hospital yesterday, I glanced at the gas gauge - half plus, good to go.  I contemplated temperature control.  Hospitals are either freezing or boiling, so layers are a must.  So I ran to the basement to put the washer contents into the dryer - my favorite sweatshirt was in there.  I figured it would be dry by the time anybody even ordered any tests (I was wrong - it was dry about mid-ultrasound).  I found Babygirl's favorite sweatpants, ran down my mental list of comfy clothes (all clean!) and changed from work pants to loose khakis. 

Note to self:  Never, ever leave home without a prayer shawl or two.  Babygirl got warm blankets.  I got cold.

One kink:  My phone died earlier this week.  I was planning on getting a new one Friday evening.  WHY is my phone always dead or uncharged when these things happen?   Hubby heard secondhand (my 9 AM patient who was the first to be cancelled works with him) that we were on our way to the hospital.  The fact that we were discharged allowed me to carry on with my plan to get a new phone.

One more kink:  They were able to transfer my contact list from the old phone.  Except that some of my contacts were randomly assigned new numbers.  I sent a text to Babygirl that said, "PILLS!!!!!"  It went to some random stranger in Narragansett, Rhode Island.  The resulting conversation was entertaining.  I tried to call Curlygirl today (to cancel her birthday party) and once again got a puzzled response when I insisted I was some unknown girl's Mom.  Oops. So if you are in my contact list you might want to text me your actual number.  Oddly, many numbers seem okay, and most have at least the right area code, making it all the harder for me to determine if the numbers are correct.

Aside:  Cell phones are making us dumb.  I used to keep everybody's number in my head.  Of course, now I can hardly keep ANYTHING in my head.

The worst of the phone weirdness is that I lost most of my CHOP numbers. Ugh.

I'm supposed to sing in church tomorrow.  I have a hideous migraine and can't listen to music.  Lordy.  I have the screen on the computer almost dark.  It works.  Sleeping would work too except that seems to be off my to-do list.  So is keeping dinner down. 

I was going to mention one more miscellaneous thing....but it floated away somewhere.

At least I know my stuff is clean for whatever happens on Monday.


Friday, September 27, 2013


Babygirl awoke with a bellyache.  The same as LAST Friday's bellyache, neither better nor worse.  No fever.  No nausea.  No bowel issues.  No urinary symptoms.  Just Babygirl, hunched over and saying she was too sick to go to school. 

Last weeks' bellyache went away with no help from anybody but God.  Each day was better than the one before, and in the end I decided it wasn't anything to worry about.

So why worry about the identical problem a week later?

Sigh.  Nothing that happens once that goes away by itself is ever really a problem.  It's when the problem comes back that we start to worry, medically speaking.  And honestly, if it weren't for the kidney transplant I'd have to say there was still nothing terribly alarming about it. 

Transplant patients can probably never truly be considered to be healthy.  Stuff that other people shake off in a minute can take a transplant patient OUT. 

So I called the transplant team.  The nephrology Fellow knows us.  I told her the story, and she said she'd track down the attending and call back with a plan - maybe an order for some blood work and an ultrasound.  That seemed like a good idea to me - and I'd be able to work that in around my half-day of work and Mom's cardiology appointment (remember the broken pacemaker wire?  Yeah, still working on that).  I don't know what I was thinking. 

By the time the Fellow called back I was hard at work on my usual Friday morning paperwork stack.  Disability forms, school physical forms, letters to insurance companies explaining why I might have a better idea what my patient needs than the gum-chewing high-school-educated pencil-pushing gateway geeks who make the decisions about formularies and medical supplies.  Stuff like that.

"Take her to the ER.  Tell them (oh, yeah, they love when I do that!) that we want a CMP, CBC, UA and kidney sono." 

I jot it all down.  Honestly, the ER doc would have to be a total moron not to want the same stuff anyway.  Except he wanted a CT scan instead of an ultrasound. 

"Dude.  You can't put CT contrast through a transplanted kidney."  Honest, it's bad for the kidney.  "Well, oral contrast only then."  "It's a lot of radiation for a kid, doc.  Why don't we do the CT if the sono doesn't tell us what we need to know."

Off to ultrasound we go.  "Does Babygirl have a full bladder?"  Likely not - she just produced a urine specimen at the request of her nurse.  "Do you need her to have a full bladder to see the kidney transplant?"  Eyebrows meet hairline.  "Let me make a call."

Once the purpose of the study was clarified and the correct orders given, we were off.  The kidney looks fine, except her right ovary appears to be adherent to the backside of it (scars happen, right?).  They can't locate her appendix, but as the radiologist who came in to assist in the search pointed out:  "No one with appendicitis would be able to tolerate this exam."  Yup.  They were pushing pretty hard.  Babygirl never peeped, but you could see her break out in sweat at one point. 

While we were in ultrasound, I passed the point of no return on getting mom out of the house and to the cardiologist.  I called to reschedule.

No wiser, we return to her cubicle.  ER doc shows me the labs:  "She has a UTI!"  She's anemic, as usual, slightly worse than usual.  Kidney's working fine, no increased white count to indicate infection (although that doesn't mean much - she can't make many white blood cells).  Urine showed some white blood cells and not much else, except some skin cells, meaning that the specimen wasn't 'clean'.  No blood.  No nitrites (bacterial breakdown products often seen in UTI's).  From my perspective, it's a pretty bland specimen.  He calls the nephrology attending, announces his finding, and then listens and grunts and 'yes, but..'s a lot while she patiently explains to him.....what, I don't know. I can only hear his end of the conversation (and I don't think he knows I can hear him).

He comes back and says CHOP wants her to have a liter of fluids and he's going to put in an IV.  Apparently I was a bit too relaxed to note her vital signs.  Her blood pressure was 80/30 on one of the readings, and the rest were pretty low as well.  They failed to get the IV on the first try and I refused a second.  The kid has mouth, you aren't considering surgery, how 'bout we just make her DRINK a liter of fluid?  (I added a bag of salty junk food while she was drinking.  Worked like a charm.)  Her pressure came up.

We were discharged with antibiotics and instructions to go to CHOP for a recheck on Monday morning.  By then they will have the results of the urine culture, and we'll go from there.

But I sincerely think that we were given the advice we were give because the ER doctor didn't want to send us out the door without an actual "diagnosis". 

We docs sincerely hate to tell patients that we have no idea at all what is going on.


Wednesday, September 25, 2013

Year Three, Week 24 - Easily Frightened....

Last week, the day after we came back from Philly, Babygirl awoke with a bellyache.  No fever.  No nausea.  No urinary symptoms.  Not like cramps.  Low in the belly - right over the transplanted kidney.  No trauma, no recent heavy lifting or change in activity.  Just pain - bad pain.  Tylenol didn't really help, so I gave he the tramadol we keep for her worst headaches, and she stayed home from school and went to bed.

And I went to work. 

Every mom knows that day - the one where you wish with all you are that you could stay home and sit vigil over a child who is ill. 

But we are shorthanded - one of my partners is sporting a new knee, and won't be back for a few more weeks.  I have two students, and I'd just skipped a day to go to Philly.  My desk would be literally buried by work leftover from Wednesday and the missed day, and that work represents needs ranging from silly to desperate, needing focus and attention from someone who can tell the difference. 

Focus.  Sigh. 

I wanted to call every ten minutes.  I didn't.  I wanted to go home at lunchtime and see if she was okay.  I couldn't.  I wanted to get home early and see for myself that she wasn't dangerously ill.  I barely made if for dinner at 6:30.

At work I wanted to be kind.  I was short-tempered.  I wanted to be tough.  I was weepy.  I wanted to concentrate.  I felt SO scattered.  I can't believe I actually accomplished anything.  I can't remember anything but the desperate desire to get the damned charts off my damned desk and dump the damned task list into my damned computer's recycle bin. 

I'm pretty damned sure that witnesses will freely attest to the fact that my language was much, much worse than that.

She was fine, sort of.  Still in pain, no fever, no symptoms except the pain.

By Monday morning it was gone, and she was saying things like, "Maybe I fell out of bed or something..."  Ummm......okay? And, "What if I had had appendicitis like Dad?"  Uh, yeah, crossed my mind.

I've been doing better at not getting totally hysterical about every little thing.  But this scared the crap out of me.  I'm still not sleeping, and I'm still pretty cranky.


Sunday, September 22, 2013

Hamsters for Dinner......

Taking care of my Mom as her memory declines is both a challenge and a joy.  She retains her sense of humor, but the problem is that she can't connect the conversation to the joke anymore.  This leads to some oddly timed repeats that can leave us in stitches or in tears, depending. 

She asks almost every question at least four times.  The commonest question we hear is "What's for dinner?"  She'll ask over and over and it doesn't really matter what we say.  So we make things up.

"What's for dinner?"



"Yes, we got them in Hamsterdam."  At which point we are singing variations on Boy Scout songs:  "Hamster, Hamster, damdamdam..."  (If you don't have THAT tune stuck in your head for the rest of the day, you had a sad and lonely childhood.)

She notices when the grandkids aren't here.  She asks about babies every day.  Since they are only here on weekends for dinner, that adds up to a lot of questions about babies and where they are located, and our answers vary from, "With their parents" to "Off to see the Wizard" in scope.

It's not mean if she can't remember, is it?  Well, maybe LOL.

I've heard from friends that hygiene and dementia are not friends with each other.  What is it that makes the forgetful seem to think that showers are freezing cold and quite possibly toxic? It's worse than the preteen I'm-not-dirty-I-bathed-four-days-ago phase.  And since the passage of time means nothing to her at this point (she asked me yesterday during my weekly changing-of-the-linens why on earth I do that every single day), she thinks I'm trying to shove her into the shower daily.  Since showering her takes well over an hour (cajoling, wheedling, bribing, demanding, shower plus un/dressing and hairstyling) I'd be insane to try it daily. 

Changes in routine are not a problem.  She like going out to go to the doctor but she wants a double Quarter Pounder with Cheese each time.  And since she can't remember whether she's eaten or not, she keeps on asking.  And asking.  And asking.  Not to mention that the LAST thing her cardiologist would want her eating is a QPC.  With fries.  Add extra sodium, please.  Lord.

I want her to enjoy life as best she can while she can.  We eat well, and sometimes adjust her water pills to compensate for the extra salt if we get a pizza or some Chinese (and trust me, she eats far less of that under our supervision than she did when she lived alone!).  Balancing her heart failure against her dying kidneys against her memory loss is a fine, delicate thing. 

I have had many conversations about end-of-life care with my mom, the majority of which took place long before the dementia was well-entrenched.  In every single conversation she voted for quantity of life over quality.  Respirator?  Yes.  CPR?  Yes.  Feeding tube?  HELL, yes.  No matter what? Even if you are so far gone you don't know you are there?  YES. 

Ugh.  This stands in direct opposition to what common sense, and common decency would dictate. I don't understand how someone who spent years as a nurses' aid in a nursing home could think this way.  But it IS how she thinks.  So how do I apply it? 

If I let her eat the way she wants to she'll be in the hospital by Friday and dead by the end of the year.  Restricting her is practical, but it takes away the only clear joy she has left in life.  She has a broken pacemaker wire (one of two - the other is pacing for now).  Repair/replace and risk surgical complications that would worsen her quality of life?  Leave it alone and risk decreasing her quantity of life?  She's no longer competent to decide for herself, and I'm stuck with a promise made as health care proxy to do what SHE would want to do.  According to her guidelines I should never let her eat anything she likes again AND replace the pacing wire. 

Sigh.  We have a consult with cardiology this week.  I'll take a moment to speak to him privately.  And I'll let her eat as she likes.  She won't get much sodium at our table, and she seems to like our food anyway. Since she moved in she hasn't been back in the hospital for heart failure (she was in twice in the month before she moved in). If allowing treats does decrease her quantity of life, I think she's okay with it.  After all, if she never worried about that before she got dementia I have a lifestyle precedent that I can follow.  And I guess I'll have the pacemaker fixed if they suggest it - it IS what she would want. 

But I want my kids to know - I don't want to do it this way when it's my turn.


Saturday, September 21, 2013

New Eyes.....

My glasses are getting a bit worn.  I think it's been two years since I last had an eye exam and got a new pair, so the chips and scratches are hardly surprising. 

So I went for an eye exam.

"Did you get these glasses here or somewhere else?"  "Here."  "And you say it's been two years since your last exam?"  "Well, I think so - I've been kind of busy."

My last exam was in 2009. 

Looking back, I can kinda sorta remember that I was supposed to go for an exam in December of 2010, right smack dab in the middle of Migraine Hell.  I'm sure that I couldn't face having bright lights flashed on my retinas, so I put it off.  About the time I might have considered rescheduling, Babygirl got sick.

There probably is no end to the things that got back-burnered  when our lives turned upside down and inside out.  I know I've been pretty good about keeping up with my doctor visits (although I'm thinking that I may be just a little overdue now).  I managed church, work, doctor visits, Hubby's surgeries, and a bunch of other stuff during the two and half years we've been dealing with this. 

But I'll never know, unless I trip over it, what things got so deeply buried that they may never be cared for.  I'm guessing many of my good friends think of me fondly and wonder if I'm still alive (so to speak). I've not been a good or reliable friend for a while, certainly.  I've been on the taking rather than giving end of things, absolutely.  And you know what?  I think I don't mind.  And I'm hoping they don't either.  Anyone who wants can give us a shout and we'll try to get back in the swing of things.

Priorities around here have changed dramatically.  We circled the wagons and kept them that way.  It's a testament to how our lives have been that I consciously rejoiced today because it's been over TWO MONTHS since any one of us was admitted to a hospital.  I'm still doing the happy-happy joy-joy dance over the fact that I don't have to leave my home to go to Philly for THREE WHOLE MONTHS.  Babygirl's ongoing needs mean that I spend a substantial portion of each weekend cleaning.  My Mom's needs mean that I have less down time in the morning, and less freedom to just run away from home whenever I want.  I rarely have time for the type of introspection that would uncover anything that I am missing.

But there are a couple.

Music.  Babygirl and I have an ever-growing playlist, and it's wonderful to belt out "Just give me a reason, just a little bit's enough..."  with Pink, or "New York state of mind" with Billy Joel, but it isn't choir music.  I miss making music with other people, and the depth of worship it inspires.  If someone else would run the choir I'd join.

Adult friends.  We've begun having people come over for dinner here and there, and I hope to expand our guest list a bit.  I'd like to get to know some people we don't know well, and re-affirm old friendships.  As witty as Babygirl has become, and as acerbically funny Hubby can be, it's nice to bring in some folks from the outside again. 

Wine with Citygirl.  Her years in the city and recent move to the west coast have made it harder for us to stay connected.  Phone only takes us so far, and I truly, truly miss her.  She's having a great time working for a couple of wineries and excited about starting classes this week.  It is wonderful, absolutely amazing to have a daughter grow up to be such a great friend.

On the flip side, I have JuJuBee and Curlygirl here at home.  I spend more time with them now than I did when they lived at home in high school, and I'm grateful for time with grandkids and my girls.  Having little people call me 'Grandma' (or something that sounds kind of like that) is such an amazing blessing. 

So I guess it was time for me to get new glasses.  Time to look around with new eyes at the life we have now.  It's a good life, better than I would have expected.  We're walking a tough road, aware that there are tougher ones and thankful for the blessings we have.  I'm amazed at how light it is looking through these new eyes, grateful for small blessings that I might not have appreciated without the struggles we've endured.


PS I would suggest, for future reference, driving home with the OLD glasses and adjusting to the new somewhere other than behind the wheel.  Experience speaks.

Friday, September 20, 2013

The Point of the Adolescent Clinic......

The Transplant Clinic is absurdly efficient.  Check in, pick up lab orders, get blood drawn upstairs, eat, return and get put in a room.  Usually we arrive shortly after 7:30 and get out by 9:30 - 10 on a bad day.  Not so the Adolescent Clinic.

To give as much leeway as possible, we were gone for an hour to Neurology.  Had that not happened we'd have left by 12:30.

So what the heck is the point of all the extra people?  And all the extra time?  And what is the bill for this going to look like?  Usually it's about $400.

The point is simple:  Keep the kidney alive.

I've mentioned before that 14 and 19 are common rejection ages.  CHOP is constantly doing studies to figure out why, and what can be done to make sure it doesn't happen to their kids.  So there were some common themes to the questions asked of Babygirl yesterday.  And yes, for the first time, all questions were addressed to HER, not me. 

"Do you know why you have been asked to join this clinic?"  Explanations were given about the need to gain control over her medical care.  One provider said,  "It's like learning to drive.  No one would just hand you the keys and expect you drive on the turnpike.  You need an adult sitting on the seat next to you while you practice in the parking lot for a while."  Our job as parents are to include her in pill sorting, set up HER phone to get the text message reminders, and gradually allow her more responsibility over her care.

"How is school going?  And what are your friends like?"  (And privately, to me, "Do you have any concerns about her friends?")  Teaching a kid that choosing good friends and avoiding dangerous ones is challenging for all of us.  It's good to have some backup on this one.  I'm guessing that kids with drug-using troublemaker friends might have some problems with compliance?

"Do you know what medicines you are taking?"  Yes, all but two - the blood pressure med and the bicarbonate.  "Do you know how much you take?  How often?"  Not so much, and pretty much, respectively.  In an emergency, you need to know what you are taking, exactly.  This would clearly help avoid med errors at other hospitals.  And it would certainly help her transition to another doctor if needed.

Babygirl tells me that the questions asked behind closed doors (in the 15 minutes I was thrown out of the room LOL) were still about her friends and social life.  I guess they decided that bluntly asking if she has sex or uses drugs was not on their list yesterday.

The psychiatrist spent some time exploring the depth of her friendships and the changes that began happening with dialysis.  Babygirl used to have a lot of sleepovers both at home and at friends' homes.  That stopped completely with dialysis.  She really couldn't go overnight elsewhere without a lot of preparation, and she didn't want her friends to see the bedside commode and dialysis equipment in her room.  She still doesn't want friends to come over. I'm sure the concern here is social isolation and depression.  The doc was relieved to hear about her frequent contact with her best buddies - her sisters - and in the end seemed satisfied with the quality of her life (either that or he has a phenomenal poker face).

Adolescent Clinic is a twice-yearly event.  So if it weren't for the Hypertension Clinic, we'd have a nice short visit in between.  And THREE MONTHS!!!  Whoot!  It's a record!  I texted the date of our next appointment to my sister-in-law and she was quite surprised.  We didn't even get an order for blood work in between. 

I guess we can live with longer, far more infrequent visits.  Yes, yes we can.


Thursday, September 19, 2013

Year Three, Week 23 - If Visits Were Symphony.....

Today was Babygirl's first visit with the Adolescent Clinic in Nephrology. 

First, the Prelude:

Babygirl's school Open House was last evening.  It started a 6:30.  We moved from classroom to classroom every nine minutes, going from the first to fifth floors.  We met up with Citygirl's favorite English teacher, now on Babygirl's favorite list.  We met the art teacher who didn't seem to mind giving Babygirl a low grade on a project that she couldn't finish because the smell of the marker was triggering a headache (NOT going to be a problem going forward, and Babygirl can finish the project with paint or black colored pencil for regrading).  I joined the PTA (made a donation, plan to do nothing, their second-least favorite kind of mom). 

We were on the highway at 8:30 PM and arrived around 11.  What with one thing and another, I was asleep at midnight and up at 6 (I woke up at 4 thinking it was time to get up.  You can not imagine how satisfying it was to park myself back under the covers!). 

Traffic to the city sucked.  There really is no better word for it.  So our intended 7:30 finish-up-the-study meeting with Nina, the study coordinator, had to be fit in among all of the other visits that are part of Adolescent Clinic.

 First Movement, Allegro:

Nurse.  Lab. Fill out Nina's forms over breakfast.  Nurse Practitioner.  Nina. 

Second Movement, Presto con Moto:

OOOPPPSSS - almost 9:30 - make a dash up the 48 steps, through the long bridge to the other building, elevator to 6 and sign in for Neurology.

Third Movement, Adagio con Fermata:

And wait.  And wait.  And wait.  We were the ONLY patient on the doc's schedule, and he is so accustomed to NOT having patients on Thursday that he thought the page he received about having one was in error.  Seriously.  When we finally caught up to him, he was exceptionally pleased with Babygirl's progress:  Only two notable headaches in the last two months.  He gave us advice about what to do for them, and sent us on our way, recheck in 6 months.

Fourth Movement, Affrettando:

Back to Nephrology:  Transplant pharmacist. Pop-in greeting from Dr. B.  Residents.  Nurse Practitioner #2.  Social worker.  Psychiatrist.  And finally, the attending physician, Dr. A. Oh, and Nina, here and there, trying to finish her study paperwork, taking back our electronic pill sorter, paying Babygirl her participation fee and enrolling us in the next phase of the study.

Babygirl is still pretty anemic.  Dr. A is thinking she needs to go on erythropoietin again.  I (once again, for about the dozenth time, suggested that perhaps Babygirl has Thalassemia minor (an inherited form of blood malproduction that leads to benign chronic anemia)).  Hmmm, interesting idea, she says.  Wouldn't need to treat with erythropoietin, then, she says.  Yeah, I say.  So a call is going forth (at long last) to hematology.  We will either see them, or not, at their discretion.  I'm guessing it'll be a go.

She still has too much acid.  Double the bicarbonate.


On our way out we were snagged by the Hypertension Clinic coordinator, who signed Babygirl up to be seen in THAT clinic on our next visit, warning us ahead of time that THAT clinic takes four hours each time and includes labs, an echocardiogram, and a visit from Nephrology inside of that clinic (so she doesn't have to meet separately with the Transplant Team.

We didn't leave CHOP until 1:30.   Next time will likely take as long if not more so (especially if we tack on hematology).  The time AFTER that will be back with the Adolescent Clinic, and I will be invited to hang out in the waiting room, no longer needed in back.

The Postlude:

The kidney is doing fine. See you in three months.  Seriously, there has to be a simpler way to tell us that.


Monday, September 16, 2013

Searching for Organs.....

A friend sent me this link with a note attached:


I do love it. It's a tale of unselfish devotion and the unimaginable kindness of strangers.

But it disturbs me more than I can say.

The donor is a 41 year old woman.  Kudos to her for helping a stranger.

The recipient is a 77 year old woman (I think.  The husband is 77 and they've been married for 57 years, so give or take a couple of years...). 

Transplanted kidneys can be expected to survive about 15 years.  That means that this woman will be 92 when the 41 year old kidney fails.  Or she'll be dead.  Her life expectancy (absent her known diagnosis of kidney failure) is roughly 85, statistically speaking.  So they are giving a young kidney to someone who could reasonably be expected to die of natural causes long before the kidney would normally be expected to fail.  The odds are that she was never placed on a public transplant list because she simply didn't qualify.

So they are deliberately 'wasting' half the life of the transplant.

And then there is the cost.  Medicare (yes, really)  paid for ONE HUNDRED people to be tested as donors for this elderly woman at a minimum of $500 per person for those who were immediately proven not to match, and $10,000 for those who were close.  Figure at least $50,000 - maybe closer to $100,000.  Then there's the surgery and hospital stay.  $10,000/year in medication costs.  Specialist medical visits for $500/week for a year. 

We were told that we could expect that Babygirl's first year with a transplant would run about $100,000.  They underestimated.  Re-admissions for complications are the expected norm for transplant patients.  She was in the hospital four (?five) times in less than one year, and was desperately ill twice - sick enough to die, actually.

Babygirl was 12.  Thirteen.  Fourteen.  An age where the body can, given enough support, recover from nearly any insult.

Not so true with a 77 year old.  Statistically speaking, not many teens die of pneumonia, or strep throat, or influenza - or surgical complications.  LOTS of 77 year olds do, even in the absence of immunosuppressive medications.  Once again I find myself asking, "In a world of limited medical resources, where should our money be going?" 

This isn't just about 'rationing' care.  It's about understanding a basic fact:  We are all going to die.  None of us is going to live forever.  The statistics surrounding medical care in the last year of life are appalling:  Nearly 20% of Medicare recipients have some form of surgery in the 6 months before they die.  WHY?

It's a touching story - an old man, still deeply in love with his wife, begging for a kidney.  Who wouldn't be moved? 

And I hope it goes well for them, I do.  But I suspect that they may be stunned, as many are, as WE were,  to learn that transplantation is not the cure for kidney disease, but a treatment that has many, many risks.  And no matter what anyone tells you about those risks, there is no way to truly prepare yourself for the degree of difficulty involved in the years after transplantation.  It may turn out that the transplant hastened her end rather than prolonged it.  And more likely, transplant may have worsened her quality of life in her last year because no one will want to give up and 'waste' that kidney.


Sunday, September 15, 2013

Third Year, Week 22 - Posting Because I Feel I Must....

Really, sometimes there is no good reason to write a blog post.  Bloggers just get the feeling like people are waiting, so you HAVE to write something, right?

So to tell you all what you most want to know:  Babygirl is doing well and has not missed a single day of school so far.  We're going to have to break that record this Thursday and go to Philly.  The neurologist has agreed to see us that day at 9:30 (I had to follow up Monday's call on Friday to find this out.  I wonder if they were planning on telling me or just checking to see if I was sincere?), so it's a BOGO type of trip.  I'm going to have to 'fess up to the fact that Babygirl has missed FOUR doses of medication in the past month - once, my fault; the rest are on her.  Sigh.  We'll see what that has done to the transplanted kidney. 

Babygirl's school Open House is, of course, Wednesday night, so we won't be arriving in Philly until at least 10 PM, up at 6 to leave for the hospital, and come home by 3 PM - an exhausting schedule that will leave me totally tired for Friday.

In other news, I have a student.  Well, I had one student, and now I have two (apparently some doc in another town kinda got let go).  Both of these young ladies are on their first clinical rotation, which roughly translated means that they don't know anything about how to apply what is in their heads to the reality of the patient in front of them.  Teaching a new practitioner how to prioritize their knowledge?  Crap.  I forgot how tough this is - my last couple of students were farther along in their training.  The good news is that both are bright and not at all insulted by criticism.  The bad news is that teaching is WORK, and I am having all I can do to get everything done.  I've been going in early, coming home late, and sleeping poorly to round it all out.  Hubby is the soul of patience about all of this, but it is getting just a little old.  Two more weeks of them, I think.  And then I get another one. 

Priorities:  Teaching someone that seasonal allergies matter, but not as much as the potential for big blood clots and strokes.  Since both abnormalities show up on the same test, and the allergy one is listed first, students tend to get stuck on the first abnormal thing they see and fail to scan for the REALLY scary stuff.  Step back.  Get the big picture.  Kind of like hiking in the woods and failing to notice a big BEAR because you are focused on the poison ivy.  Yeah.  Like that.

Exhausting as it is, I have to say that I do love teaching.  As long as it isn't long division.


Wednesday, September 11, 2013


I had one of those What-Do-You-Think-of-This-Gonna-Bankrupt-Us-Obamacare-Crap conversations again this week.  People ask me.  They think 'doctor' is a synonym for 'rich republican' and that all doctors oppose the Affordable Healthcare Act.  I'm here to correct that impression.

First, doctors are just people.  Very busy people.  I'm willing to bet that not one in a thousand of us (including me) have read the entire piece of legislation.  No surprise - I've never read the rules of what Medicare covers, or BlueCross/BlueShield for that matter.  I've never read the fine print of what MY health insurance covers. 

But I think it's a good idea.  Maybe not a GREAT idea, but a very, very good one.  And I really think that we should stop crediting President Obama with this idea.  The Clintons, Hilary in particular, tried to put forward a similar plan in the early 1990's.  And Mitt Romney put an almost identical plan in place in Massachusetts when he was governor there, and that plan seems to be working very well.  Since he was the first to succeed, I feel we should honor him by calling Affordable Healthcare "RomneyCare". 

RomneyCare matters.  Prior to the passage of RomneyCare, here's what our family was facing:

When Babygirl went on dialysis, a medical coverage clock started ticking.  Medicare (for those of you confused about public insurance, we Medi'care' for the elderly and disabled, and Medic'aid' the poor) begins assisting with health care costs for renal failure patients three months after they start dialysis or receive a transplant, whichever comes first.  Medicare is secondary to any private insurance for 30 months, and then becomes the primary insurance provider. Dialysis is covered for its duration after that, so if Babygirl had not received a kidney for 5 years, she'd have remained on Medicare the entire time.  Once a patient receives a transplant, Medicare gives you 30 more months and is done.  Medicare covers 80% of expenses.  Babygirl qualifies for free prescription backup which does NOT cover her transplant meds.  Those could be obtained under the hospital coverage at 80% (our 20% would be well over $1000/month).  Her Medicare costs us $104/month.  A policy to cover the remaining 20% would run about $150/month, but we don't need to do that because we have my work insurance, which costs $120/month plus co-payments and deductables (about $200/month, maybe more - ask me at the end of the year).  Healthcare, therefore, is costing this family of three $574/month with an additional $50/month in prescription costs, and has saved us over $2000 so far in hospital and lab costs.  Call it $180/month, subtract the cost of the premium:  Savings of about $75/month.  If she lands in the hospital again, quadruple that.  These are our pre-RomneyCare costs.

Babygirl is fourteen.  She received her transplant 19 months ago, and therefor has 11 more months of Medicare coverage.  How much it will cost to care for her after that will depend on the number of times she lands in the hospital.  When she turns 18, if she doesn't go to college, she'd be off our plan.  She would qualify for Social Security Income, but it would be based on my earnings.  It will be too much to call her poor, so no Medicaid.  It will be too little for her to afford a full-fledged healthcare plan, so no coverage at all. 

We've talked before about what this means.  No insurance = no medications.  No medications = rejection.  Rejection = dialysis.  Dialysis = Medicare coverage in three months and back on the transplant list to repeat the cycle over and over and over.

The initial phase of RomneyCare has helped with that.  I can keep her on my insurance until she's 26, so I only have to keep working until I'm 68 to keep that going (not my initial retirement plan, but hey, beats watching your kid die).  When the rest of RomneyCare comes into effect, it may allow me to retire at a more reasonable age and still hope that Babygirl will have health insurance.

People are always utterly astonished when I explain the results of repealing RomneyCare.  They are always amazed when I point out that they are already paying (in increased hospital bills) for the uninsured who use the ER for primary care and can't afford to pay. They are stunned when I point out how many community hospitals have been forced to close because they cannot afford those losses.  They are always shocked by the notion that a HUGE percentage of bankruptcies occur because of uncovered medical expenses.

Massachusetts is not bankrupt.  Canada?  Not bankrupt.  Australia?  Not bankrupt.  Costa Rica?  Not bankrupt.  WHY do people assume that WE will bankrupt ourselves by taking care of our poor and lower middle class's health care?  I really do not know. 

As a doctor, will I make less money?  Maybe so.  But I'm already at the bottom of the doctor pay scale because I care for the poor and uninsured.  And I've already learned that I can live on less.  My Christian conscience will not allow "the least of these" to go without at least basic health care! 

I think we all owe Mitt Romney a huge 'thank you' for being brave enough to institute a compassionate system of health care for his constituents in Massachusetts.  The fact that he has become a coward and backed out of thinking that the people outside of Massachusetts deserve the same is sad, but thank God President Obama was willing to cross party lines and borrow the Republican governor's lead with RomneyCare.


Tuesday, September 10, 2013

Third Year, Week 21 -Timing....

Yesterday was a Monday.  Not a monday, a Monday. 

It started out well enough - up early, dog walked and fed, Mom weighed and medicated, laundry sorted and folded.  I even had my clothes out and ready so I could shower and go.  And then......

"Mom - my pill sorter is empty."

No worries - I always sort an extra for on-the-run days.

"That's empty, too." 

Well, almost.  Not counting one leftover EVENING dose that somehow got missed this month.  Crap.

Out come all the pill bottles, the sorters, the vitamins - all.

And I settle into the focused concentration required to get this done right.  She has 11 different prescriptions and three over-the-counter medications.  Distractions can be literally deadly, so you have to just shut out the world, take your time, and do the job right.

The only reason I was only 10 minutes late for work was because I skipped the shower.  I had to write up a medication list for her to carry to the eye doctor (ask Hubby about how fun it was to take Squeaker with him for that appointment LOL), and write a list of all 11 of her prescription numbers so I could call them ALL to the pharmacy (managed in the midst of my Monday-office madness).

Oh, yeah - and the other extra thing?  I called Neurology.  I totally forgot to try to match up an appointment for Babygirl's last visit to Philly.  It's a pain in the tushie - Neuro only lets you call two weeks ahead (they say it's to avoid last-minute rescheduling on their part.  That being said, we've been last-minute rescheduled twice).  Turns out life just got slightly more complicated. 

 Babygirl's neurologist only sees patients on Monday and Wednesday, and Monday is for headaches (save your seizures for Wednesday, please).  When we were attending the Monday transplant clinic, we could (theoretically) schedule neuro for the same day.  Now we are in the Thursday clinic.  So.  The receptionist has a message out to Babygirl's neurologist to see if he'll see her on Thursday, since we drive four hours to get there.  I'd gladly go a day early except that Babygirl's school's Open House is that Wednesday evening (of COURSE it is) and I really cannot miss the opportunity to meet her teachers.  And her doctor would still have to okay putting a headache kid in on seizure day (this is incomprehensible to a family practitioner.  How hard is it to switch up?  I have to change from headaches to diabetes to asthma to hypertension to backaches all in the SAME PATIENT.  I'd see everybody every damned day if I had separate days for each problem!).

Monday and Wednesday.   Dang, I am in the wrong specialty.  

Well, nevermind.  It'll work or it won't and there is nothing I can do about it.  So now I need to take yesterdays shower and leave early for work so I can do a house call three towns over with a student in tow.  I'm guessing it's house call/stroke/diabetes/school physical day.  Or maybe hypertension/COPD/depression day.  Or.......

It won't be boring.  That's probably why I didn't specialize.


Saturday, September 7, 2013

Hockey on the Ball Field.....

Yesterday was one of those near-perfect days.  It was sunny with a glowing blue sky.  Warm, but not too warm. Crisp morning air, good sleeping weather.  And I won a Cider Mill pie in a pie auction at work.

A vast improvement over Thursday when I lost my entire evening to a massive migraine.

Somewhere during the course of my work day someone mentioned that there was a baseball game on for the evening.

We aren't sports fans.  You've seen how we do the Superbowl. But going to see the local AAA ball team play is something we usually do at least once every summer.  We missed all the games last year in the chaos of our lives, and this year we just weren't paying attention at all.  Many of the games come with an awesome fireworks display, so when I hear that there were fireworks as well as a game, I put going on my to-do list.

I got home from work, made a breakfast-for-dinner plate for my mom, and ate pie with Babygirl and Hubby.  We arrived for the game a little over half an hour early, and were among the last five cars able to park in the stadium lot. When we got to the ticket line, there was a man holding up three tickets.  His church had bought them in advance at the group rate and some of their people cancelled, so we got them for $20 TOTAL!  (Our local park has some good deals, and I know we can get cheaper tickets with certain employer benefits and so on, but for last-minute for a playoff game I was pretty pleased.)  They were the best seats I've ever had in the stadium.  We were directly in front of the skyboxes looking straight up the first base line from above home plate, on the aisle - an important feature when your Hubby is a big man with a bum knee.  And we were under shelter for a change, making the frosty air that rolled in when the sun went down more bearable for the always-freezing Babygirl.

Seeing as how we'd already had dessert, we had a traditional ball park dinner of hotdogs, and French fries, snacking on Cracker Jack later.  And we watched the game with our new not-our-church friends. The people seated behind us were a family of two parents with about four girls.  Between plays we heard any number of hysterical movie quotes, the most notable of which was, "Hello, my name is Inigo Montoya.  You killed my father.  Prepare to die!" 

And the game!  Our team had won every game going into the playoffs, and had lost the first two of  (potentially) five playoff games.  So it was do-or-die for the team, much more serious than the usual mid-summer games.  As far as I know, our team has never even made the playoffs before, and in all the times we've gone to games over the years, we've never seen them win even once.  (Perhaps it would have gone better for the team if we'd somehow left THAT Karma home.)

No score in the first inning.  Or the second.  Third.  Fourth. 

Fifth inning came, and the other team got in two runs on a couple of horrible umpire calls.  And it just kept going.  If there was a bad way to call it, they called it that way for us.  Somewhere during the fifth (or maybe sixth), one of the umps called our guy safe on second, then changed his mind and called him out, and then added the guy on first to the 'out' list and made the guy on third return to second......

And that's when the fight broke out.  Teammates were holding back players who were trying to kill the ump.  The other team was holding back the folks who were trying to kill our guys.  The dugouts emptied out onto the field, and the crowd participated in a boo-fest the likes of which I've never heard.  In the end, the crappy call held, and the umps ejected our team's manager from the game. 

Even though our team ultimately lost, it was without a doubt the most exciting ball game I've ever seen.  Fisticuffs in baseball?  I posted on Facebook:  "I went to watch baseball and a hockey game broke out."

The fireworks after the game were amazing but relatively anticlimactic after the fireworks DURING the game. 

We had a lot of energetic, happy chatter in the car on the way home.  We decided that we really MUST get to more games next summer, and we decided to at least try one actual hockey game this winter.  If you live in a city, you should take advantage of the things that are available to do! 

For a last-minute adventure, it rocked.


Thursday, September 5, 2013

Third Year, Week 20 - First Day.....

I came home from work late yesterday, barely in time for dinner.  Babygirl was nowhere to be seen.  I set the table, and then ran upstairs to get her since she didn't respond to my text (it's our version of an intercom LOL). 

She came down, and she looked like somebody had taken a club to her spirit.  All questions were answered in monosyllables. She didn't want to eat.  Hubby and I passed more than a few frightened glances back and forth, finally specifically asking about bullying or trouble on the walk home. 

"I'm just really tired."


I know she hasn't really been too active this summer.  Fatigue has been an ongoing issue.  But DANG, she looked so......defeated.  And it's only the first day. 

She took some Tylenol for a headache.  She went upstairs to rest.

And we worried.

A couple of hours later, she was looking more herself.  She was able to cheerfully discuss the day a little, and shared some online videos with me that had made her smile (or cry, depending.  "Heaven Needed a Hero" in tribute to Cory Monteith was tough). We shared a bag of popcorn.  By the time we went to bed I was feeling a bit more reassured, but.....

Crap.  We'd really rather be hearing stories about teachers in Spandex.


Monday, September 2, 2013


It happened.  The day we've been dreading.  Babygirl turned fourteen yesterday!

Oh, don't misunderstand.  We love birthdays - cake, parties, family gatherings, lunch at a special place.  That's all great.

And of course we LOVE Babygirl!  We want her to have a hundred more birthdays, and we want to be there for every single party!

But FOURTEEN.  {{{{{shudder}}}}

Babygirl is the last in a long long line of girls.  And those girls who have lived with us at age 14 have been killers.   We have survived the Fourteen Uglies more than a couple of times, in a fairly broad number of ways.  And somehow we were always unprepared for their transition to The Dark Side.

Citygirl stopped eating at fourteen.  JuJuBee wrapped herself in fantasy reading and 'disappeared' from reality at fourteen.  Bella settled more firmly into rebellion rule-breaking at fourteen.  Curlygirl decided school was optional and considered starting a family of her own at fourteen.

Kidney transplant recipients have special challenges, as we know.  And fourteen is the commonest age for rejection.  I don't think it's hormonal.  I think it's the nature of the age. 

Fourteen is the time when girls seem to think that the only way to prove they are growing up is to make some disastrous choices and see what happens.  Fourteen is the first of the you're-not-the-boss-of-me years.  The first of the you-can't-make-me years.  Those dark years roll on (and on and on and on....) until the dawn comes in the mind and heart of the girl involved:  "Oh!  You love me no matter what, and I can be successful and independent in some more productive and less dangerous way!"  In my experience this begins happening at sixteen to eighteen, so we've already done about TEN YEARS of the Uglies.  (Trust me, at times we've understood the wisdom of the country song that says, "If I'd killed you when I met you I'd be out by now.")

For a teenager struggling with major, major health issues this can become a battle of control.  The transplant team told us of teens who would pretend to take their medications, removing them from the pill sorter to 'get their parents off their backs' and throwing them away, probably for a sense of mastery over the un-masterable. 

No one really seems to know how much of the rejection-at-fourteen phenomenon is due to compliance as opposed to normal growth and development.  No one knows for sure how to keep the normal Fourteen Uglies from leading to loss of the transplanted kidney and a return to dialysis.

Fortunately for us, Babygirl has thus far not exhibited the Pre-Fourteen Uglies symptoms.  She is almost always kind, polite, and present.  She has no plans that we know of to go over to The Dark Side.   The others had all given us hints, usually starting about age twelve, that Ugly was on its way, but not Babygirl. 

Maybe it has to do with the fact that she is functionally an only child at this point.  Her sisters are still around, and very active in her life, but at home it's just the three of us.  I hope it helps.  I hope we dodge the rejection bullet.  And I REALLY hope we'll dodge the Fourteen Uglies bazooka.

As hubby and I shopped for a birthday card for her, we struggled a little.  Some of the 'funny' cards almost made us cry (front:  This year could be the best, most awesome fun exciting (add more superlatives) year of your life!  inside:  Or it could suck.  I'm not psychic.) or just seemed too young or silly for her life.  And I'm not sure she really 'got' the one we did pick:

"For your birthday here's a badge you've earned the right to wear....  "I've Survived DAMN Near Everything!" 

We're hoping she doesn't feel she has anything left to prove.