Wednesday, July 27, 2011

Week Fourteen - Mindfullness......

I gave my counselor the blogsite address before my last appointment.  She noticed the comment I made earlier about not wanting to be "mindfull" because my mind was too full already!  While she understood the tongue-in-cheek spirit in which that was said, she also had some good advice for me regarding mindfullness as a stress management tool.

To understand why this sort of advice is important, you may need to know a bit more about me. 

As a child, I was a bookish, shy person.  I was very content with my own company - after all, I didn't make fun of myself the way others often did!  I redesigned board games to fit my rainy-day fantasies.  I played outdoors, riding "horseback" on the "back forty" for hours on end.  When my mom became concerned that I was spending too much time reading in my room, she'd kick me out of the house.  My younger brother recently shared that one of his favorite memories of me was of a time when I took books with me and climbed a tree with him.  We sat high in the branches, tree swaying, reading together.  In essence, I lived in my own imagination or in books almost all of the time.

Even as an adult, I often felt out of place. I learned to blend, learned to be friendly and to at least appear a little outgoing. But in all honesty, the first time I felt like a normal person was when I hit medical school - that place was FULL of bookish, shy, intense people!  (Not at all what you'd imagine doctors to start out as LOL.) Now, no one who knows me would select the word "shy" to describe me, but I'd rather go the dentist than to walk into a room full of strangers.

So my mind IS full.  But it's full of vivid imagination, memories of great books, medical articles.  It's cluttered with to-do lists, It's loaded with calendar dates,  memories of the love of family over big tables full of food with 20 people around, and the promise of beach week. 

And fear.  And worry.  And grief for my baby.

Vivid imagination is all very well in it's own way, but I have seen too much and can imagine too well what lies ahead for her in the coming weeks and months. I can imagine funerals. What I cannot fully imagine is whether or not I can live without her.

And here is where I need to be "mindfull".  I need to be able to focus on something outside of the fear.  I cannot live in an ocean of worry waiting for the next wave to swamp me.  So she is teaching me how to empty my mind a bit, and focus on one thing at a time. 

Basically mindfullness is just the serenity prayer.  Especially the part about "the wisdom to know the difference."


Friday, July 22, 2011

Week Thirteen - Surviving Summer.....

Like all of you, we are dealing with one of the hottest summers on record.  No big deal, really.  Push those fluids, lay back and rest when you need to, go and see Harry Potter one more time because the theaters are cool.

But for my baby?  Well, she's off at camp.  And her camp is a swim camp, all lake activities like learning to water ski, being launched off the blob, climbing an inflatable iceberg, kayaking and canoeing.

When we went to visit the camp, I knew already that she was sick, although I didn't know that when I arranged for her to go in the first place.  I was supposed to be out of town, remember?  She always goes to camp the week we do the Mission Trip, but we had to pick a new camp to fit her schedule. We toured the place, and they showed us the lodge where it was most likely her group would be housed.  Not luxurious, but AC and a bathroom across the hall. 

Camp was excellent about arranging for her dietary challenges.  They were great about handling her meds.  But when we arrived, she was assigned to a large, somewhat primative cabin with 17 girls and a counselor, with a bathroom in the lodge one building over.  No AC.  She and her best friend picked bunks, and settled in.  I chatted with her counselor about hydration and not ignoring her muscle cramps because they are the only way we know she's dehydrated.

And I went home.  It was 85 degrees, dry, not too uncomfortable. I got the biweekly call from nephrology - kidney function is worse, anemia is better. And then the heat wave rolled over all of us. I pictured that crowded cabin, kids sweating on bunk beds. So yesterday I did something I have never done.  Swore I would never do.  I played the overprotecive mom and called the camp.  My counselor actually suggested that I do so.  Why worry when you can actually do something?

And I honestly felt better.  The woman I spoke to knew my daughter, listened to my concerns, and said, "I'm going to leave right now and speak to her counselor and the nurse to let them know the risks for her."

I go to pick her up today.  And we'll keep surviving.


Wednesday, July 20, 2011

Down time......

After the most insane 12 weeks of my life, I suddenly find myself with no one to take care of!  Hubby and nephew are of for a week of mission work.  BabyGirl's at camp.  The only one left here with me is my 17 year old, and all she does is work and sleep!

I was supposed to go on the mission trip.  We serve the Appalachia Service Project, doing emergency repairs for homeowners. But my 19 year old hasn't had her baby yet - stubborn little Boo!  She's due the 23rd and apparently intends to stay where she is until then!

So I have a week off.  No work, which is a blessing.  My work is demanding, and I have had brain function issues since my illness in November that make it even harder.  The break has allowed me some breathing room.  My calendar since April has been such a bewildering maze of doctors appointments, medication schedules, shot reminders, and negotiations with insurance that I simply don't know what to do with a blank week!

So I am painting.  No, nothing artistic.  Bedrooms.  We are shifting things around to get ready, financially and emotionally, for the upcoming strain of surgeries and dialysis. And believe it or not, this type of mindless labor has a very Zen appeal for me.  I have finally been able to let all the hamsters off the wheels in my head, exhaust myself with a good day's work, and sleep. Really, really sleep. And finally, to pray.

Oh, not like I haven't been praying.  Back in December, when I'd been sick for about 3 weeks and no one knew what was goint on, our church had a little tree.  You were supposed to write a prayer, stick it in a clear glass ornament, and hang it up.  My prayer just said, "PLEASE".  As in, "I'm begging you..." And nearly every prayer since then has been a harried, concentrated plea for something I need right now - the car to run, the traffic to clear so we can get "there" on time, for Matt to get better NOW because I need him, get me back to work before I run out of sick time....

But I haven't had time (or taken it) to listen.  To let myself know that I am being carried (Footprints In The Sand). There is always a part of me that is aware that God is with me, but I confess I rarely "hear" His voice the way many claim to.  But yesterday, there was conversation.

"She's officially on the list, God.  Please! Do the miracle and get her matched!  I'd sell my soul... No!  Wait!  YOU own my soul, but you know what I mean. I'd do anything so she would't have to suffer this!"

"She is not the only child, nor are you the only mother, who is walking this road and praying this prayer.  Would you want another child to die waiting so yours could be healed?"

Ouch. Okay, so when I say "anything" is that what I mean? SIgh. No.  Sincerely, no.  So, okay, keep carrying me, God.  And, well, then, how 'bout those coping skills?  Can you give me some of them?

Thanks, God.  Amen.


Monday, July 18, 2011

The Living Donor Conundrum....

My kid needs a kidney.  And she needs it sooner rather than later.  Eighteen people die each day waiting for organ transplants.  There are truly tens of thousands of  people waiting, and fewer than 10% of them get the organs they need in any given year.

Dialysis is not a cure for kidney disease, it is a delaying tactic.  The life expectancy of a patient on dialysis is significantly lower than that of those who receive transplants, even taking into account surgical disasters and early transplant failures.

The average wait time for a kidney from a cadaver is 3-5 years. Years. All those years on dialysis.  So she will turn 12. Then 13.  Then 14.  Maybe 15 or 16? before she gets that kidney.

Unless we find a matching living donor.

Usually this is less of a challenge for children than adults, because generally, families treasure their chidren and line up quickly for testing - Devil take the risk!  As you may have gathered, it's not that we don't treasure our baby - we all lined up pretty quick too!  It's that we aren't actually related to her. None of us even pass the preliminary screening.

We are fortunate, blessed beyond all imagination, to belong to a loving and supportive community church.  I have been humbled, awed, and brought to tears by the number of people who have come to us and asked what they need to do to give her a kidney.  Bless them, bless them all! But the majority were either the wrong blood type, or too old (over 60), or too ill (high blood pressure and diabetes takes you out of the running automatically).

We have at least 6 who make the preliminary cut.  Our living donor coordinator was truly impressed by this number.

But here's the thing, emotionally.  Sometimes being a doc interferes with my ability to set priorities in the way another parent might.  Removing a kidney is not a little deal.  It's painful.  It has significant risks, both short- and long-term. And I'm not fond of asking people to take huge risks on my behalf.

And, to whom, honestly, would I be willing to give one of MY kidneys? Some of that is simple.  My kids. My husband.  My brothers, sisters-in-law, neices and nephews.  But....  If I saw a random poster of a kid hanging in my local grocery store, would I call? Would I, as a mom of a young child, offer my spare kidney to someone else's child, knowing the risks of the surgery? I feel tremendously guilty.  WHY didn't I give away my spare kidney before I developed high blood pressure?  Why didn't I think of it?  I'm on the bone marrow donor list - why not a kidney?

Just today I ran into a total stranger who is BabyGirl's blood type.  She says she is on a living donor list but has never been contacted.  I gave her our donor coordinator's card.  Then I went to my car and cried. 

I have never considered myself to be a coward.  And I don't think, in the ordinary scheme of things, that I am selfish.  But I am a SLACKER beside the courage and selflessness of these people.


Saturday, July 16, 2011

Week Twelve - Meeting the Transplant Team.....

Our appointment with the transpant team started at 7:30 AM and ended at 2:30 PM.  There was no break for lunch.  We were told it would end at noon, and knowing my daughter's eating habits and fluid needs I brought drinks and snacks, thank God.

First, a nurse for the inevitable weight/height/blood pressure and pee speciment.  She herself had had a kidney transplant, with a successful pregnancy afterwards!  She showed my daughter her scars, which was VERY cool.

Then we saw a movie on transplantation with another transplant candidate (30ish).  Then the transplant coordinator (RN) came in.  She explained her role in the process and then gave a slide show/informed consent discussion.  Of course, any discussion that includes the possible death and dismemberment of your child is an appalling wake-up call, even if you know it's coming.  They made no effort to soften it for my daughter, or to exclude her from the discussion.  It's not that I don't think she has the right to know, exactly.  It's more that I think I should have been given the option to exclude her from some of the scarier stuff if I felt it inappropriate.  I wonder at what age, if any, they offer parents that option? She also told us that no one would be added to the transplant list until the transplant meeting, nearly a month from now.

Next was the surgeon.  I was surprised that it was a woman (yeah, yeah, I know, I'm a woman and I'm a doc).  But female urologists are a distinct minority in their profession.  Her initial discussion was so obviously aimed at my daughter (assuming she thought my daughter was, say, 6) that I almost wanted to tell her to talk like a grownup.  But in the end I adjusted to her approach.  The content was clear, her discussion of the proceedure understandable,  She was FAR more honest than our nephrologist about the odds of getting a kidney, the wait time, and the number of pediatric transplants she has done and does each year. I like her.  I could trust her.

Then the resident.  It's July, so this guy has been a doctor for 2 whole weeks.  He's clearly clueless and is still using checklists to figure out what to ask.  But I know that one way or the other we have a wait - there's another candidate in the room next door, so we gamely take it. He needs to learn, and I don't mind teaching.  I didn't tell him until he was done that I was also a doc.  Then he got really nervous LOL.

Then the dietician.  We already have a pretty good clue on this stuff so she didn't really cover much that we didn't know.  She was also one of those sort of Zen granolaheads who instructed me on "mindfullness".  Frankly, right now my mind IS full, and being out of my mind seems like a very good choice at times.  I didn't say anything.

Then the social worker.  She screened BabyGirl for depression, assessed how she was handling things.  Frankly, she should have screened ME.  My doc has already increased the antidepressant we started a few weeks ago, and I'm in counseling, thank you.  So now I only cry a few times a day and not all the time.

Then the resident, with the surgeon.  She made sure we understood everything we had thus far heard, looked over the labs, examined my baby and said, "Forget the transplant meeting - I'm calling everybody for an okay and getting her listed now."  That was very reassuring, except that we had already been told that the average wait is 3 - 5 years. I discussed our desire to multi-list, and told her where I wanted to go, and our nephrologist's puzzling reaction.  She herself trained at that center, and felt it was an excellent alternative, but emphasized how much time we'd be spending on the road if the local guy wouldn't do follow-up.

Then the living donor coordinator.  She asked if we had any potential living donors (we do).  She handed me several of her cards, with her number.  I am to give our potential living donors her number, explain that they need to contact her, and then tell them I am not permitted to discuss donation or my daughter's kidney issues with them again after that (they want to be sure I am not hectoring people into coughing up a kidney).  She also gave me the best news I've had in weeks.  There is a fund that pays for living donor screening!  So that $10K/person?  Not our problem anymore!

So now you are up to date.  Twelve weeks.  Just under 1/4 of a year.  Can I get off this ride now?   I don't like it.


Friday, July 15, 2011

Week Eleven - Choosing a Transplant Center.....

When our nephrologist first told me that our daughter would need a transplant, he only told me about our center.  He told me that they did 5 pediatric transplants a year, "And that's a lot." I asked about other centers and he mentioned a couple, one of which is 5 hours away, and one that is that is 10 1/2 hours away. When they scheduled us to see a transplant team, it was the local team, which is an hour and a half from home. We saw them yesterday (more in next post!).

Meanwhile, I went online.  I used (again) to check into transplantation centers, and I learned quite a bit, some of which I might have been happier not knowing.  First, I learned that my neprologists exaggerates, to say the least.  Our center does 2 - 3 pediatric transplants/year.  They did do 5 once - in 1999.  The centers he mentioned do about 10 -15 each.  But I found another center, 3 1/2 hours away, that does TWENTY.  Their surgeons also do all of the local adult transplants, averaging 200 a year of those. So I gave them a call, sent them our daughter's records, and they said they would accept her - we go to see them August first. And the beauty of this center is that it is very near to my brother, and my sister-in-law.  So we'll have a free place to stay.  And support.  And home-cooked meals. We ARE allowed to multilist, and it may decrease our wait time.

But here's the catch:  Our nephrologist refuses to do ANY follow-up that she needs if she has her transplant there.  "I wouldn't be comfortable," he says.  "Why?"  "I'm not familiar with their protocols."  What?  There are ten antirejection meds (okay, a new one just got FDA approval 3 weeks ago, so 11).  Just exactly how complicated can this be?  And let me remind you that I'm a doc also.  AIDS has more than 11 meds.  Diabetes has more than 11 meds.  High blood pressure has more than 11 meds.  I treat all of that stuff, usually at the same time, so what exactly, again, is his discomfort?  I did not get an answer that really answered the question.  So now I'M not comfortable.

And the problem with this is, that follow up is BIG in the first few months.  Weekly.  Then biweekly.  Monthly.  And because her immune system will be suppressed by the antirejection meds, she will be prone to infections.  If she ends up in the hospital across the street from me with an infection and worsening kidney function, she would ordinarily be shipped to our local center.  If we go to the other place, we'd have to transfer her there.  If she goes by chopper?  I'm following in a car, 3+ hours behind, possibly in a snowstorm?  Ouch.  But.....if that happens, getting 90 minutes in a snowstorm isn't too easy either, and at least my brother and sister-in-law can get to the other center in a few minutes - it's three stops away on the train that stops right outside their door.

All of which begs the question:  Do I really want a doctor caring for my daughter who exaggerates and won't learn new things to take better care of her?

I'm thinking not.  And for the time being, he's going to be deciding about her dialysis?  Damn.  Damndamndamndamn.


Thursday, July 14, 2011

Week Ten - Upcoming Surgery.....

We had a doctors visit this week.  We spent a LONG time with the NP, discussing how poorly she is doing (as far as her numbers are concerened), and how at odds that is with how she generally looks.  We refer to her frequently as "the healthiest sick kid you'll ever see."  The NP decided to pull the pediatric surgeon in, since he was seeing other clinic patients, to set up placement of a peritoneal dialysis (PD) catheter.

There are two ways to do dialysis - hemo (blood) or peritoneal (gut lining).  Apparently, kids don't do as well as adults on intermittant hemodialysis, and although it can be set up at home (yeah, you get your own machine and everything!), it is time consuming and requires the patient to sit for a few hours.  Now, me?  Give me a book or a laptop, and I can sit 'til my butt is visibly larger, but Babygirl?  Not so much.

So I think  everybody gets the general idea behind hemodialysis.  They stick a needle in your arm, take out the blood, run it through a machine that cleans it up and put it back.

PD doesn't work this way.  A catheter is permanently inserted through the abdomenal wall.  Then the patient (or family) runs a large amount of clear fluid (2 liters) through the tube into the peritoneal cavity and leave it there for a few hours.  Then the fluid is drained out, by which time it has turned yellow (Voila! Instant Pee!) because the osmotic forces of the fluid content have sucked the toxins out of your blood and into the fluid.  The beauty of this concept is that it can be done at night - fill'er up at bedtime, drain it out in the morning, and off to school you go!

Of course, it's really not that simple.  Now, I have seen tubes that have been placed through the abdomenal wall into the stomach for feeding purposes.  Because of the way they are made, they do not connect to the peritoneal space, and the tract is short and the opening small.  Same with ostomy holes.  But the description of this proceedure gave me the whim-whams. 

The primary incision is in the belly button.  The tube itself, more than a foot long.  Half dangles inside the peritoneal cavity down to the area of the appendix, low on the right side.  The other half is TUNNELED  (ow ow ow thank God she'll be asleep but that baby's gonna hurt when she wakes up!) to the left upper abdomen, near the lower ribs.  The purpose of the tunnel is to prevent peritonitis, infection of the peritoneum, which can lead to so much scar tissue as to make further PD impossible, not to mention that it is, in and of itself, dangerous and very painful.

It takes a month for a PD catheter system to "mature",  She needs it NOW.  But we have swim camp.  And horse camp.  And our annual family beach week, all in a row.  They want her to have what's left of a normal summer.

So surgery is scheduled for August 15.


Wednesday, July 13, 2011

Week Nine - More Labs.......

In the aftermath of the ER visit, they wanted us to go for more labs.  Despite the increase in fluids, her kidney failure did not improve.

Maybe it's time to talk about numbers.  There are basically 3 blood kidney function tests.

1) Creatinine (Cr).  Normal value in kids would be 1.0 or less.  It's a indirect reflexion of muscle mass and muscle turnover, and the kidneys eliminate waste from that balance.  It rises exponentially as kidney function worsens - for example, a rise from 1 to 2 represents a loss of nearly half of your kidney function.  From 2 to 4, another half (leaving 25%), and so on.  My daughter's first Cr was 4.7, It is now 6.2.

2) Blood Urea Nitrogen (BUN).  Normal varies based on circumstances, but if  Cr is normal, BUN should be around 10. It usually rises in proportion to the Cr, so a patient iin chronic kidney failure  will have a  BUN roughly 10 times the Cr.  A dehydrated patient will have a much higher BUN/Cr ratio. 

3) Glomerular Filtration Rate (GFR).  GFR is a reflection of the speed at which glomeruli (the kidney's tiny filters) can clear waste from the blood) . This is a calculated number based on height, weight, and age. Labs automatically calculate them for adults, but in kids you need a GFR calulator (or a formula).  My daughter's docs do not talk about her GFR.  At first I wondered why, but then I went to a GFR calcualation site. I plugged in her numbers and discovered that her GFR to start with was 13.  Now it's 6.  Normal is greater than 90.  So at this point the number is irrelevant.  Her kidney function is nearly as bad as it can get either way.

Renal failure is staged. with Stage 1 being a GFR just below 60. Stage 5 qualifies you for transplant/dialysis, with a GFR less than 15.  Usually they begin to prep for dialysis early in Stage 4, because it takes time to ready the body for that process.  She is deep into stage 5, and we do not have access for dialysis., AND we aren't on the transplant list yet.

We are running out of time.


Tuesday, July 12, 2011

Week Eight - The ER.....

One Saturday my daughter came to me complaining of back pain.  It was, actually, what doctors refer to as "flank pain", in the area of the lower ribs over the kidney, on one side. She's not allowed to have ibuprofen or aleve, so I gave her acetaminophen and the pain was gone within half an hour.

The next day was church picnic day, with a lovely chicken barbecue, outdoor service, and lovely weather.  There was a playground just across from our pavilion and the kids were, as usual, running around like lunatics until lunch was ready to be served.  BabyGirl was sweating, like the other kids, and I saw her drink a glass of lemonade.  One glass.

We got home about an hour later, and she began crying because the flank pain was back, same side, and REALLY painful.  She had no other symptoms - no blood in her urine, no frequency, no fever, no pain with urination.  But, DANG..... She's not a normal kid anymore.  I have to face this, REALLY face this.  I can't wait it out, hike her to the Walk-in, or call the on-call doc.  They would tell me what I already know.  She's NOT healthy, despite all appearances to the contrary.  She must, must, must go to the ER. But.....I am experienced enough with how ER's work to know that giving her some acetaminphen before we go would be the most merciful approach.  After all, we might have wait HOURS before they even get to her.

We arrived.  I told our story, and we got hustled in ahead of all the other folks in the waiting room (gulp).  Blood work, urine specimen.  The doctor came in, heard the story, looked her over, and ordered an ultrasound.  Calls to the specialists.  More blood work.  An IV.

The final conclusion?  Dehydration.  And a substantial worsening of her kidney function, even compared to the numbers that sent them scrambling to get us in with the transplant team 3 months ahead of schedule. We have hit the point where she's feeling the disease, and we're only 2 months into this.

A call to the specialist for followup advice?  Make her drink. More.  A LOT more.  She has what is refered to as "high output" renal failure,  meaning her kidneys can no longer decrease her her fluid output to make up for insensible losses such as sweating.  It's better than NOT producing urine, which leads to an appalling amount of fluid retention and needs severe fluid restriction to manage. 

Well, okay.  We can handle more water.  So far it's the easiest piece of advice we've gotten.  And maybe, just maybe, it will make her kidneys work a little better.


Monday, July 11, 2011

Week Seven - The Financial Realities of Transplantation......

In the huge package of paperwork for the transplant team was a 40 page booklet about what to expect.  Some of it we had already seen, some I knew because of my work.

But I still have not been able to get past the 15 pages entitled "Financial Planning."  Apparently this whole deal could run $100,000/year for dialysis. Her current meds top $700/month (mostly covered).  The transplant year could be half a million. Oh. My.  I made notes, and, with a grim sense of "Holy Crap," I made a some phone calls.

The first one was to our insurance company.  Here's the list of questions and answers:

1) Does our policy pay for kidney transplantation? (Because if not, we're screwed, totally screwed.)
          Yes, it does - but nothing experimental.
2) Is there a lifetime cap on payments for dialysis, transplant and meds?
          No.  Thank you God - there is no cap. So we're good until she isn't a student.
3) Does it pay to harvest a kidney from a living donor (about $90K on average!)?
          Yes. But.......

The "but" is a big one.  We are not covered to screen potential living donors to see if they match.  They can donate a pint of blood for free blood typing (and preliminary HIV/hepatitis screening).  After that it's on us - tissue typing?  Probably $500/person.  Match? Move on.  Screen for kidney function, presence of both kidneys, kidney anatomy, general health and psychiatric evaluation.  This could, I imagine, add up to $10K/person.  Right now I have several on my list. Living donors are covered on out policy from 5 days prior to hospitalization to 3 months after.  It doesn't include travel, income loss, or ongoing disability.  And we aren't permitted to contribute much to that.  There are limits (although I confess I do not yet know what they are) and we must not appear to be "buying" a kidney.

Next was a call to Social Security to get a Medicare application.  Turns out that once you start dialysis or get a kidney transplant, you qualify for Medicare coverage, which will cover 80% of the costs.  They wouldn't let us apply yet (and the woman on the phone was actually unaware that this exception to usual Medicare guidelines even existed!) because we are neither of those things yet, so I have no way of knowing yet whether this would offer us additional coverage on the donor screening issue. We are over income for her to qualify for SSI (disability payments, which are for poorer families to use to help defray non-medical costs of disabities - ramps, travel, income loss,and so on).

By the time we meet the transplant team in July, I'm supposed to have a plan for paying for everything.

It just keeps getting better and better!


Week Six - From Bad To Worse.....

We have continued to have blood work done every 2 weeks.  I really do know better than to assume "No news is good news", but I have been getting copies of the blood work each time.  And really, it's all pretty terrible but it doesn't seem a LOT more terrible to me.  After all, this isn't my area of expertise at all, and the specialist said we'd meet the transplant team in the fall.

So, when, without warning, I get a BIG packet (addressed, I might add, directly to my child, so if she had been home that day, opened it (since she has been getting mail directly from the kidney foundation and finding that to be very cool even if she doesn't quite "get" everything they mail her) and put it away in her room I might never have even SEEN it!), from the transplant team telling us our appointment has already been made for July 14th...."Please arrive at 7:45 AM and be prepared to stay 6 hours....."!  My heart is pounding now just remembering how it felt to open that packet.  And of course, it's 6PM.  On a Friday.  Still WEEKS away from the appointment, so I really don't want to call the "emergency" crew, especially since odds are good that whoever answers won't be the docs who already know her.  Sigh.

So, I rage and I cry and I get hysterical, and when I'm done hubby does the same.  And there is a part of me that is like a little kid, howling, "....but you PROMISED! It's not FALL yet!!!"

And then I tell my little one that it looks like things are moving a bit faster than we thought, and we look through the educational stuff  again. 

And once again, she surprises me.  I've mentioned, tangientally, that she's a bit young for her age.  What that means in real life is that  she's a little slow, just above the range of high-functioning mental retardation, but barely at the bottom of what is considered "normal" intelligence.  She's been held back a year in school, and still reads almost 2 years behind her grade level. But she has a never-quit spirit, a great enthusiasm for the outdoors, and a vast quantity of practical good sense (which is a rare quality in many adults of any intelligence level!).

She says, "So I may need dialysis sooner.  But I want the belly kind, not the needle-in-the-arm kind."  Hooo. Well.  I am speechless for a minute, and then I say, "Well, then, that's what we'll get."  I figure, no point in telling her that that IS what's she's getting, no choice in the matter, which is the truth.  Thank the good Lord she thought she had a choice.  And that she picked what is inivitable for her while she still thought she had a choice.  We have so little control here, so I'll settle for the mere appearance.

Monday finally comes, and I call the NP and let her know I REALLY would have appreciated a heads-up before I got all that paperwork.  She apologised, and expressed some astonishment that we had gotten it all so soon, less than 24 hours after she asked her staff to set it all up.

Arghhhh - the one time there is some semblance of efficiency.  And it kicks me right in the chest.


Sunday, July 10, 2011

Week Five - Reaching Out......

Somewhere along in here it occured to me that I am under too much stress. It also occured to me that I know next to nothing about dialysis in kids, and transplantation.  The information that the doctor sent us home with is woefully inadequate in my opinion, so I started looking for resources.

A friend recommended, a website that keeps track of all hospitals that do all kinds of transplants, and also the distribution of transplantable organs.  It made me able to look up all the area hospitals (we are on the east coast).  Our local center told me they do 5 pediatric transplants per year.  UNOS says they do 2 or 3, but managed 5 in 1999.  Ummmm......really? I was surprised, actually, at how few transplants are done on kids even in the major centers.  I am thinking that a center about 3 1/2 hours from here might be our first choice.  But hey, we have until fall to think about THAT, right?

My husband and I figured that if we made some posters of our daughter's cute lil' face and put them here and there we might get lucky and get a donor, since preliminary tests show that our baby doesn't match any of us except her pregnant sister, who for obvious reasons is not a candidate for kidney donation. So we went to Kinko's, had posters made (they give you a better price if you tell them a sad story!) and began handing them out all over the place, including to all my older daughter's college grad families and friends. So far we know posters are from Niagara Falls to Connecticut to Florida.

I called the local branch of the National Kidney foundation.  They sent us a couple of cookbooks, a child-friendly guide to dialysis with pictures that are considerably less terrifying to look at than the adult version. BabyGirl was glad to get info she could understand, and even more excited to get mail in her own name. There are no local support groups for kids awaiting transplants.

I called my EAP (Employee's Assistance Program) and made an appointment with the same counselor I saw the year my older daughter decided that eating was optional.

Stress management?  I'm not sure it's possible, actually.  But we'll take a stab at it.


Week Four....The Shots.......

Among the many things your kidneys do for you is regulate how much blood you make.  There is a hormone called erythropoetin that stimulates the bone marrow to make red blood cells.  When your kidneys fail, you become anemic.  This is why my daughter felt so cold.  Her anemia was severe, but because it took a long time to get so bad, it didn't bother her as much as it might have, and only had symptoms in recent months.

So now, once a week, she gets shots of erythropoetin.  We were supposed to start them at the same time as the pills.  But our insurance wouldn't cover it right away.  Seriously?  The kid is on the brink of needing a transfusion and you won't PAY for this stuff? Well, turns out that at about $500/shot, they want to be SURE she needs it, especially, I suppose, since it is often used in "doping" atheletes. We are not allowed to fill it at our normal pharmacy, and it gets shipped from about a thousand miles away, overnight, once a month.

Her dad gives her the shots.  He's diabetic, so he knows how.  And oddly, she looked at me and said, "Mom, I know you're a doctor and all, but I'd feel weird if you gave me shots."  Well.......okay LOL.

Not so many years ago kidney failure patients just got transfusions.  Lots and lots of them.  It's one of the reasons so many of them contracted HIV in the early 80's, and repetive transfusions adds a LOT to the risk of transplant rejection. 

Hooray erythropoetin!


Saturday, July 9, 2011

Week Three - The Diet.....

After the 3rd set of blood work, I got a call from the Nurse Practitioner (I really like her, by the way - she is shockingly truthful, which I am discovering is a rare thing). She told me that my daughter's phosporus levels were up, and that we needed to start her on a low phosphorus diet and some pills to take with meals to decrease phosphorus absorption.

There are some interesting metabolic consequences of high phosporus levels.  It makes your body produce excess parathyroid hormone, which among other things causes excessive calcium loss in the bones.  For children this frequently leads to one of the early symptoms of kidney failure, which is growth delay. Fortunately for my daughter this has not been the case, but the last thing we need is osteoporosis later.

The pills, by the way, are approximately the same size as the average prenatal vitamin.  And she takes 2 with each meal.

So they sent me a diet list. .  She looked it over and asked, "What am I going to eat for breakfast??" Followed by, "Hey! I don't have to eat chili anymore!!" That's the spirit!

 It's almost easier to say what she CAN eat than what she cannot No whole grains, no more that the equivalent of 2 pieces of white bread a day - including pasta.  White rice but not brown. No more than 1/2 cup of dairy a day. No cheese, no pizza. No nuts, no more that 2 tbsps of peanut butter per day. No soy. No beans.  No peas.  One-half cup of corn (popcorn, corn on the cob, etc.) per WEEK. No asparagus. No colas, diet or otherwise. No sunflower or pumpkin seeds. No ice cream. So, basically, if I can kill it and throw it on the grill, or it's fruit or most veggies, we're good.

I have patients who have to follow this diet, but since it is the nephrologists who prescribe them, I confess I had NO idea at all how miserable it is.

Adapting is a challenge.  We found a bread made of white rice flour and flaxseed that she says tastes just like whole wheat bread.  We tried of rice milk, and then found flax milk (an excellent source of healthy omegas), which she really prefers in her coffee (LOL, yes, I've always let her drink coffee - the kid was born in Guatemala, I swear they must have put the stuff in her bottles) and on her fruity rice cereal.  I have found a really good rice-based equivalent of Bisquick for pancakes and muffins.  I have yet to try the pizza dough mix I bought.  We have rice cheese.  And the local Asian food store has been great - they have all kinds of rice noodles to replace most pastas  and it is VERY cheap compared to the "gluten free" rice pastas at the supermarket - usually 10-25% of the cost.

Hanging out in the vegan/gluten free aisle of our local supermarket is both expensive and educational.  The other moms with kids on special diets are in awe of how bad ours is compared to theirs, which oddly makes me feel better. It's proof that this really IS as hard as it feels! And one mom there offered me the exceptionally valuable advice that my extra dietary expenses are applicable to the federal medical tax deduction - so get a prescription for the diet from the doc and keep those receipts!

My baby's best friend's mom is a nurse.  She has the diet on her fridge and supply of pills at her house. The school nurse looked the diet over and said,  'I don't think the school can even begin to comply with this." But since our school won't let kids have fruit juice to drink unless there is a medical reason they can't have fat free milk, I did manage to make it possible for her to get juice without creating a daily commotion in the line (which did cause her considerable stress at first).

She is learning how to exchange.  Do I want an English muffin for breakfast or a hamburger bun at dinner?  A small yogurt now or a frozen yogurt later?  "Are we having corn on the cob this week, Mom, or can I have half a bag of popcorn tonight?" Rice noodles and low-sodium boullion is a good source of carbs for this active, growing child, and replaces wheat-based high sodium ramen noodles.

The first week of compliance with this made her lose a pound and complain of hunger. It took some serious work to replace that weight and get the carb/fat/meal/snack ratio back to a tolerable level.

I've never really gone hungry, except maybe a little to drop some extra pounds.  But it made me weep to hear her say it - privately, later, of course. She is already skin over muscle, one of those coltish, long-legged preadolescent beauties who can never seem to figure out where her feet are. A pound doesn't sound like much, but it was VISIBLE.

And at this point, I have the grim feeling that the suffering is really just beginning.


Friday, July 8, 2011

Week Two - The Never-Ending Questions.....

I am a huge believer in prayer.  And of course, the only way to get people to pray for your sick kid is to let them know she is sick.  Which leads everyone you tell to ask a bunch of questions, and suddenly, like it or not, I am the Ambassador of Pediatric Renal Disease.

Here are the questions I have heard more than a couple of times:

1) "Is it both of her kidneys?"  Now, as a physician I do know a bit more about this than the average guy, but I really had NO idea that this would be the very first thing people (and I mean nearly EVERYBODY) would want to know.  If someone needs a new kidney, it means that neither one of the ones they have are working.  And there is no way with just blood work, by the way, to even tell if someone has only one kidney working. Either your blood is being cleaned out, or it isn't.

2) "How did this happen?"  Now THIS question makes sense to me, but there really is no good answer to it.  By the time she was diagnosed, it was too late to get a biopsy to see what the problem was.  Apparently, one dead kidney looks like another, so she is past the point where it would tell us anything.  I'm grateful, in a way - those biopsy needles look to me as if they hurt.  But the nephrologist made some assumptions based on her age and degree of failure, and nephronophthisis seems likeliest.  It's rare, inherited and untreatable, so finding it earlier wouldn't have mattered except that it would have given us more time to hunt up a living donor.

3) "How is she taking it?"  Well, all things considered, she was taking it well until the severe dietary restrictions and numerous pills and weekly shots started - but that's a topic for another post.

4)  "Is she on a transplant list?"  Well, no.  She's going to need a kidney, but you don't make the list until you get a little farther down the road.  She still has about 10% of her kidney function, and more importantly, she's still peeing.

5) "Are they going to do dialysis?  I hear that's HORRIBLE." (That last was said right in front of my daughter.)  We are hoping to get a kidney before she needs dialysis.  And please don't scare my kid more than is needed - this is plenty scary enough as it is.

6) "Someday you'll know the reason for all of this."  Okay, it's not a question, but I have heard some version of this this more than a couple of times. And really?  A reason? For an 11 year old kid to have a disease that will almost certainly shorten her life, make many parts of her life miserable, require not one but several transplants over her lifetime?  It's like telling a mom who's baby died of SIDS, "Oh, the baby's in a better place now."
I (kindly, I hope) told one young woman who asked this question, "If you are still looking for reasons why bad things happen to innocent people you are only showing how young you are. This is the inheritance of Adam, and we just have to trust that God loves us anyway."

Better to say nothing, or simply offer to pray - which is what I was asking for anyway.


Thursday, July 7, 2011

The First Week......

The first thing they do when your kid has a disastrous lab report is to repeat it.  It makes sense - make sure there was no mix-up at the lab, in labeling or in transport.  So here's an 11 year old, never sick a day in her life, who, on her well visit to the doc the day before got 3 shots AND bloodwork.  And now I get to explain to her that we have to go back and do it again.

Bless her.  Bless her over and over and over - she just looked me in the eye, shrugged and said, "Okay!".  We went to a local draw station - the one at my office as a matter of fact.  The phlebotomist is good, and does a LOT of kids, but for some reason was unable, after 3 tries, to get any blood from my baby.  So she sends us to the hospital with a note for us to only see Frank. 

And bless Frank, too.  He hit it on the first try and made her laugh doing it.  I now have his daily schedule, and we only go for blood work when he's there.  Because the second thing about having a kid with disastrous blood work is, they KEEP repeating it.

We had an ultrasound that first day - aside from the fact that both her kidneys appear to have chronic kidney disease, all is normal

Then off to the specialist, a 70 mile drive.  The nephrologist sends my baby off with a specimen bottle, and then turns to me and says, "We will be discussing transplantation.  It is my experience that it is important to be as frank with a child as it is possible to be.  How do you want me to approach her on this?"

Now, I have to say, that I had already been crying every day.  A lot.  And I also already knew that we'd be discussing transplantation.  But....but....I'm not READY.. She's not READY.  I'll NEVER be ready, ever.  People die waiting for transplants, and die having them, and what about treating her with something first???? But I know it's not going to take my baby long to fill up that little cup, and I have to decide, right NOW, what to tell this total stranger about what kind of kid my daughter is and what I think she can handle.

"She's young for her age, doctor.  It might be appropriate if you approach her more like you would an 8 year old instead of 11."

And for the next 2 hours, that's what he did, educating both of us about what he thought was wrong (Nephronophthisis) and what we needed to do.  He told us that he expected her remaining kidney function to decline to a degree that we would need to meet the transplant team in the fall, and that he wanted us to "enjoy our summer" and send her to camp, go to the beach, and behave as normally as possible.

Oh, and get this blood work done tomorrow......

I may never stop crying.


A Little About Us.....

Our family is blended, mixed, racially diverse and, well, generally unique.  I have one biological child, 2 adopted children, and 2 who are "mine" because they fell thru the foster care cracks and never left us.  My hubby and I have had kids come and go over the years without ever officially becoming foster parents.

Our household currently has one 11 year old, about to enter 6th grade.  One 17 year old who graduated high school last month (Yay!), and who will hopefully start at the local community college in the fall.  One 19 year old friend of the family currently in local college and making some decisions about her life. One 22 year old nephew, who is leaving for culinary school in September.   One 22 year old who graduated college in May (Big Yay!), and is in NYC on an internship, and will likely stay there.

Out of the house we have a 35 year old, married, with 3 kids (grandkids are the BEST, AND I didn't have to go thru labor to have them!). She lives about 1 1/2 hours away.  And a 19 year old, living with her boyfriend, expecting a baby any minute now, who lives nearby. 

Financially, we are stable.  I work on a mission team providing health care to the poor.  Hubby has been the best Stay-At-Home parent ever.  Despite what people expect of my profession, we are solidly middle class.  We are fortunate to have no current "stupid debt" (credit cards etc), but we do have kids' college costs and a mortgage.

The year has had many stresses.  I became ill just after Thanksgiving and was out of work until April.  I remain part-time.  During that time I had an unrelated minor knee surgery.

Hubby tore up HIS knee and had to have the ACL replaced.  He is still recovering.

And then, the kidney failure.

I am SO looking forward to the end of 2011.  Except.....we still need a kidney.


Wednesday, July 6, 2011

Welcome to my world.....

In every life there come moments where you realize that everything that was true yesterday is NOT true today.  April 21st was one of those days.....

On April 20th I took my 11 year old daughter to the doctor for a routine camp physical.  Now, I'm a physician myself, and it is always just a bit of challenge for me to refrain from filling in these forms myself.  But I am smart enough to have picked a family doc (formerly one of my partners) who is an even bigger bully than I am and he'd likely KILL me if I did.

"Any problems?" he asks.

"Nah.  She's healthy, eats like a horse and is doing great in school.  But over the winter she would complain of being cold in the evenings."


"Yup.  Wrap-up-in-a-blanket cold.  Teeth chattering and all."

Some discussion ensued.  Since my daughter was adopted from Guatemala and we have no relevant medical or family history, he opted to do some obvious tests (iron, thyroid) and some screening for general health (metbolic panel, cholesterol).  The lab drew the blood and we went on with our day.

On the 21st I got a call from the doctor's wife, also a doctor and a partner in the practice. "Dee, I REALLY hate to be the one to tell you this.  I have some bad news for you."

Kidney failure.  Chronic.  Setting up an appointment at the nearest center.  Needs transplant. Anemia. 

The words I heard, I think, but parts of my brain and all of my heart simply STOPPED.  And parts of them haven't started back up again since. with me if you like.  I'll try and add a little a few times a week and bring you up to date on where we are on the journey.