ChezPerky

I posted a completely unscientific poll on my Facebook page recently asking a simple (but maybe complicated) question:  do you think that your doctor/specialist needs to have personally experienced a disorder to effectively or compassionately treat you for it?  Does your answer change based on the type of specialty/disorder?  The answer on my page, unsurprisingly, was overwhelmingly and unsurprisingly, NO, a doctor needs to have experience treating a disease or disorder, but does not need experience treating it (exception:  pregnancy; best if an OB has experienced pregnancy and delivery if they are going to be a woman’s OB…. I vehemently disagree as nearly all my ob/gyn’s have been male except the ones who have been hoisted on me by virtue of who has been on call at delivery time, but that’s another story and falls outside the confines of “microblog” Mondays).

Interestingly, if you pose the same question in a disorder-specific forum (say, migraines, or infertility), you get the polar opposite answer: migraneurs feel overwhelmingly that neurologists must have direct, personal experience with having migraines and infertiles… while not an overwhelming majority, still have a small margin on the side of the majority who at least feel that fertility specialists who have at least some personal connection with infertility (a family member or close friend who has struggled with infertility) makes for a better physician.  Personally, I find this to be an extremely curious thing – and probably based solely on confirmation bias and nothing else.  The problem is that we all have an extremely small sample size -those of us who have had wonderful physicians without personal disease experience will argue vociferously for the side of not needing direct personal experience, but rather a great deal of treatment experience; but those of us who have had compassionate doctors who have shared personal stories will argue that this is what made them know that this was the doctor for them.
But when you apply this logic to other diseases, the logic starts to break down.  Do you require that your neurosurgeon have had a brain tumor or aneurysm in order to operate on yours; or that your general surgeon have had pancreatic cancer (which will surely kill him, as it has a very low survival rate) or an appendectomy (which requires very little empathy on his or her part but does require the raw technical skill of a surgeon); do you require your anesthesiologist to have undergone general anesthesia before s/he puts you under?  These may seem ridiculous questions, but if they do, then why do patients insist that a neurologist must have experienced a migraine before they are qualified to treat a migraine?

What about you – do you think your doctor needs to have experience suffering from [migraines/infertility/other] in order to treat you and is there any specific disorder for which you think there is an exception?

[yes, I realize that was nine sentences and that I cheated by using a lot of semi-colons to make for run-on sentences; WORK WITH ME HERE!]

I won’t try to catch up on the last several years of not blogging just now.  I will, instead, jump into Mel’s #MicroblogMonday and hope that this jump-starts me back into blogging in general.  I just got back from a long trip to Cape Canaveral to see my father, which included a side trip to Orlando to visit Cinderella and Magic Kingdom (all that was by myself with the kids – then Seth flew in to help with the last leg) and a drive home so we could stop in North Carolina for the bar mitzvah of the son of Seth’s friend of over 30 years.  While in NC, I met my 6th cousin 3 times removed, and had a lovely reunion with my former high school orchestra director, which I found to be truly inspiring and was perhaps the true highlight of my trip.  I will write more about meeting up with Scott in my practice blog when I’ve had some more time to process the visit.  It’s so good to be home again, as I definitely pushed myself beyond my capacity and have long since run out of spoons, but I’m so grateful that I was able to take the kids on the trip.  It was a terrific experience for them, with many beautiful photo ops, and wonderful opportunities to catch up with friends we haven’t seen in ages.

Now for the recovery.  The kids start school on Wednesday, though, so I need to spend the next two days cracking the whip and getting them to write those summer book reports on the books they were supposed to have read this summer….  (they DID read the books.  They just didn’t write the book reports!).

Three years ago today, my miracle baby, Tova Lieba (meaning “kind heart” or “loved one”), was born. It was the end of a hellacious pregnancy with the sweetest, most beautiful five pound reward at the end. Every day with her is a joy, which probably means her teen years will be hell. I’m so honoured to be a mother to four amazing children. So very lucky to have been given this fourth chance to be called “Mommy.”

My Little Princess, then and now:

I’ve been pretty lousy about updating, but I should get back to it, so as usual, I’ll just dive right in.

My health hasn’t improved significantly, but it hasn’t gotten significantly worse, either.  I’ll take status quo.

Sam’s ASD diagnosis has solidified, but he’s doing really well and we’ve got a great support team.  He’s adorable and sweet, and we know he’ll do well in the long run.  We’ve been struggling a bit with his ADHD medications, which has actually not been a bad thing, because it gave his teachers an opportunity to see behaviors that we knew were there, but they didn’t.  It strengthened our argument at our IEP Planning meeting, so it ended up being good timing.  Lemonade out of lemons, or some such thing.  We are so lucky to have an amazing support structure in place for him and I couldn’t ask for a better kid, to be honest.  He’s sweet and kind, and full of love.  I wish we understood a little better what’s going on in his head, but who doesn’t wish that of their kids anyway?

Ellie is such a gem.  She’s excited to learn, wants to please everyone, and she’s generous and is extremely attached to Mommy and Daddy. She’s in the same Pre-K class with Abby, but had over a week in school without Abby when Abby was sick and THRIVED.  She was so excited to tell us all about everything that she did in school those days:  “Guess what I did in school WITHOUT ABBY Today!?” and “I had such a good time at school WITHOUT ABBY!” etc.  Uh, suffice it to say, we’ll be separating the girls’ classrooms next year!

Abby is also adorable.  She’s independent and unique, loves to make cards and pictures for people and is turning into quite the little artist (well, by a five year old’s standard…).  She just got diagnosed with “primary generalized epilepsy – absence type” because she’s been having pretty obvious absence seizures for over a year, but in the last few months, they’ve been occurring so frequently that they’re starting to interfere with her ability to make it through activities (at *least* 8-12 per day).  The neurologist was able to give  adfinitive diagnosis without an EEG (though we’ll still be doing an EEG) by provoking seizures in the office.  Apparently, you can provoke absence seizures by inducing hyperventilation (in a kid who’s already getting them).  Sure enough, she had three seizures right there in the office.  I didn’t love the doctor, but the PA was fantastic.  Another bit of our little adventure, right?  At least we’re never bored!

Tobie is simply precious.  And precocious.  She loves to dress up and pretend and have princess tea parties.  She likes do “Dance with my Daddy” whenever she can.  She’s snuggly and sweet and far too smart for her own good.  She’s also extremely opinionated.  She’s adorable and she knows it, which isn’t great.  She doesn’t like to settle for anything less than exactly what she wants, which is becoming quite a challenge.  Truthfully, she mostly gets what she wants- she’s pretty spoiled, I admit, but if you could see her and be around her, you’d know why!  She’s hard to resist.  Even my nanny who is VERY no nonsense (in a good, and loving, way) has a soft spot for Tobie.

Seth’s still working out of state and doing well with it, but we miss him.  His contract goes through June, and we don’t know what we’ll be doing after that, but I’m sure we’ll work it out.

Hopefully I’ll be better about updating from this point on so that I can update about real things instead of just catching up all the time.

After my last post, I disappeared again.  This was not by design.  On May 29th, I was supposed to see my gastroenterologist in the afternoon.  Before leaving for my appointment, my home health nurse came to change the dressing on my central line (a Hickman catheter).  When he was here, he was concerned, because it looked like my line was getting infected.  He felt that I needed to go straight to the emergency room.  Knowing how darned difficult it is to get an appointment with my doctor, I went to her first (she and the hospital are about the same distance).  When I checked in with the receptionist, I was quite early and I asked them to check with the doctor to see if she would prefer I proceed to the ER or wait for my appointment.  Dr. S came out to see me and took one look at the site, which by then was red all the way up to my shoulder, and sent me to the ER.  Argh.

Meanwhile, my husband was in California (the other side of the country) and was expected to be there for at least a month or more.  

I knew a line infection probably meant 3-5 days in the hospital, so I arranged for extra babysitting and for my mother to spend the night with the kids.  I arranged for people to take the kids for the weekend in case I was still in the hospital then.  And I settled in for several hours in the ER waiting room.  Once I got called back to see a doctor, she confirmed what I already knew: that I needed to be admitted for treatment, and that I could expect to wait 6 to 8 hours for a bed for admission.  Fortunately, Hopkins has a beautiful new ER, so at least it was comfortable-ish.  

The next day was a flurry of tests and cultures, etc.  And shocking, but well-timed, news.  My husband’s project in California had been overstaffed, so he was sent home after less than a week there, instead of the promised 6 week project.  Well, at least that meant I didn’t need to worry about where to put the kids for the weekend. What we didn’t realize at the time was how crucial it would turn out that he ended up being home.  Because my expected 3-5 day hospitalization turned out to be a 16 day saga in which I was barely lucid and have very little memory of even today.  Thank heavens he was able to be there for most of the time I was inpatient.

Shortly after I was admitted, it appears that I aspirated something (we’re not sure what), and I got pneumonia (right after having gotten the pneumonia vaccine, ironically).  I have no memory of this.  I do remember going to interventional radiology to get a port put in (lower risk of infection with a port than a PICC or Hickman catheter) and being told I had a fever so I couldn’t get it that day.  I imagine that was the start of the diagnosis of pneumonia, but from there, my memory is very spotty.  Apparently after I got sick, I became quite delusional, had a psych consult called in, and ended up with a 24/7 babysitter.  

Since getting discharged, I have spoken to numerous people who have told me that they talked to me at multiple points during my 16 day hospital stay – I have absolutely NO memory of these phone calls.  Even a call with my grandmother.  I went on a walk of the hospital nearly every day with my husband and I only remember a couple of those walks.  Apparently, we bought a father’s day card for my father, which I only vaguely recall.  Also, apparently I’m a smart-ass.  When I finally got cleared to get a port (I don’t remember getting it – I just now have this weird thing implanted under my skin now, which I find really disconcerting!), apparently I said to the resident, “Don’t take this the wrong way or anything, but what year are you?” “Fifth year,” he said.  “Okay then, you’re good,” I replied. I can totally see THINKING that, but I can’t believe I actually said it.  

I also received a blood transfusion (2 units of blood) because my hemoglobin level went down to 6.6.  Bad news bears.  Apparently I said to the nurse, “When my daughter was in the NICU and had a blood transfusion, they made me sign a consent form that said she had a 1 in 16,000 chance of getting Hepatitis B and a 1 in 60,000 chance of getting HIV [it might be the other way around], why aren’t you having ME sign a consent?”  My husband doesn’t remember me getting a satisfying answer to that question.  It must be covered under my general consent for treatment, which I signed upon admission. Frankly, I don’t even remember signing the general consent for treatment, so I’m not even sure that’s valid since I may not have been lucid at the time that I signed it!

Because of things that were said and done during my delirium, a condition of my discharge was that I see a therapist weekly for cognitive behavioral therapy to help me “cope better” with my illness.  Well, to hell with them.  I already had a perfectly good therapist, and I’d like to see any of the doctors cope as well as I do with not eating solid food for three years.  But whatever.  I will comply with weekly CBT, but not because I’m not coping well, but because I’m literally traumatized by the fact that I lost over a week of my life in my memory.  I keep learning things about my time in the hospital that I have ZERO memory of and it is beyond disturbing.  Not because the things that happened were disturbing in and of themselves, but because I have NO recollection of them whatsoever.  Two rabbis have told me that they spoke to me several times and have reassured me, without prompting, that I said nothing inappropriate.  (It worries me a little that they felt the need to tell me that I said nothing inappropriate when I didn’t ask that question…)

Suffice it to say, it’s taking a little while to readjust to life on the outside.  I’m seeing a new therapist on Wednesday who was recommended by our developmental pediatrician – I trust him implicitly and he promised me that she wouldn’t be offended if I called her a shrinky-dink, which is crucial to our getting along.  I still am recovering from the pneumonia (I’m told by multiple health care providers that it will take at least a month to fully clear – ugh!).  I have a new feeding tube pump which gives 50% formula and 50% water flushes each hour in hopes of keeping me better hydrated without having to resort to IV fluids via my port (to keep my infection risk lower).  And I see my gastroenterologist again on the 28th, so maybe she’ll have more answers for me.

Hah.  Hah!

This morning, Seth finished packing, printed out directions from the airport to his hotel and various other places that he needed to go, and headed upstairs to say goodbye to the kids.  He told each one of them that Mommy (that’s me) was going to take him to the airport and he was going to get on a plane and go away for a while but that Mommy was coming right back home and that he would be home as soon as he could.  He gave everyone hugs and kisses.  Sam was chewing on a marshmallow when he got his little speech, hugs and kisses, and he had a vacant little smile on his face the whole time.  I knew he wasn’t processing a single word Seth said, but Seth insisted (based on the fact that Sam hugged him back) that Sam understood.  Until Sam looked at him and shrugged while saying, “But, if you set a marshmallow on fire, it won’t be fluffy anymore!”  and then he scampered off…

Yeah.  Did I mention that my kid’s on the spectrum?

We’ll miss Seth, but we hope that the next six weeks go by quickly and relatively painlessly.  I’ve hired an extra babysitter to help me in the evenings and on weekends and I hope that’s enough to get me through.  Seth’s going to have a very demanding schedule while he’s in SoCal, so I don’t envy him in the least.

On the health front, I had a Secretin MRI/MRCP earlier this week and the preliminary report showed that my pancreas and pancreatic duct are working, and that my common and bile ducts are enlarged.  Not sure what all that means but I’m seeing my GI doc on Tuesday and will know more then.