Archive for November, 2009

So I’m OB-less.  You know that.  But, of course, out of the goodness of their hearts* the practice “is available for emergency medical care only until 12/20/2009.”  So… what constitutes an emergency?

I mean, does the fact that I’m in excruciating pain right now and don’t know what my pain management options are constitute an emergency?  I’m guessing not, but I”m not certain.

So, if that’s not an emergency, does the horrific rash that is running up and down my whole arm and seems to get worse when I get a dose of IV Phenergan constitute an emergency?  I mean, it’s not life-threatening, so is it an emergency?    It’s getting worse, but it’s still mostly limited to a fairly local area (from my left shoulder down to my left wrist).  Is this an emergency?  I’m guessing not, but I’m not certain.

And if neither of those are emergencies, try this one on for size:  What about the cramping and bright red spotting I’m having right now?  It’s been going on throughout the pregnancy – on and off, mostly off and now it’s back. Does this constitute an emergency?  I’m guessing not, but I’m not certain.

I’d continue to speculate – but I have an unbelievably bad toothache right now, and my brain isn’t quite functioning.  Sigh.



*Oh, right – that would be “out of compliance with the law”


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Silver Lining

So, while I know that you all were absolutely convinced that I should switch OBs – I wasn’t so sure.  The issue I had was mostly with one of the triage nurses at the practice, but I have my reasons for liking the doctors (one in particular), and medically, they were giving sound medical advice.  I didn’t want to start all over again with a new practice, knowing that I’d probably have very similar issues even with a new practice.  Besides, after I explained my frustrations to Dr. R. on Tuesday, there was a huge improvement in how things were being communicated to me.

But, it’s a moot point.  Because they’ve taken it out of my hands:

Dear Ms. Perky,

We regret to inform you that our practice will no longer be able to provide medical services to you.  We feel you need to find a physician with whom you will have a more communicative relationship.

Our practice is available for emergency medical care only until 12/20/09, which is 30 days from the date of this letter.

We suggest you place yourself in the care of another physician without delay.  You may wish to contact the State Medical Society at the number or website listed below for assistance with selecting a new physician.

[insert contact information here]

We have enclosed a medical records release form with this letter.  You may mail or fax the completed form to our office.  There will be no charge for the medical records transfer.  Your medical records will be available in our office for the period of time required by law.


Drs. So and So, So and So, and So and So


You’d think this letter would have made my day.  After all, I wasn’t overly thrilled with them right now anyway, right?  But if they hadn’t fired me, I would have had time to wait until my perinatology appointment in less than two weeks before figuring out what to do about a new OB.  But I can’t be left without an OB for that long – I’m being followed by a home health agency, and they need a doctor to communicate to and to receive orders from.   But that hardly constitutes “emergency care” because it’s essentially maintenance care.

I don’t want to pick a new doctor without my perinatologists’ input, but if I call there, I won’t be able to talk to the doctors, I’ll be talking to the nurse who will just give me a name or two out of their files.  It is unlikely that I’ll be able to get an earlier appointment, since next week is Thanksgiving week, so I’m just going to have to wait.  But then – who do I tell the perinatologist to send my report to?  They can’t send it to my current OB because, again, that’s maintenance, not emergency care.

In an ideal world, I’d switch to a midwife – but I’m not a good candidate for a midwife.  So… I’m sort of stuck.

Finally, if I’d left on my own terms, I would have been able to come back for GYN visits after I delivered.  I no longer have that option.  I’ve had horrifically bad experiences with GYNs in the past and I had finally found a practice that I was comfortable with.

I know that the silver lining is that now I don’t have to agonize about whether to leave a practice that was rarely responsive and was completely inflexible in my care.  But it still smarts.  I hate it when people don’t like me.

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Proud Owner

After much delay and more than enough drama, I am now the proud owner of a shiny new, double-lumen PICC line.  And boy is it running better!  If only it didn’t hurt like hell.  I don’t remember the first line hurting this much after putting it in, but I also was laying in a hospital bed drugged out for a week after it was put in, plus it was a smaller line.

The problem with the previous PICC line (aside from the fact that it just wasn’t working particularly well), was that my skin all around the site was reacting VERY badly to the adhesive on the stat-lock, around the tegaderm, and the tape (which I frequently had to use in order to keep the tegaderm from peeling off.  I’ve never had this severe a reaction to adhesive before, but this was (and still is – it’s going to take a while to heal) excruciating.  I am so glad that I stood my ground and insisted that it be changed.

And now?  Having spent the entire day at the hospital, I’m beat, so I’m going to bed early tonight.

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For the Record

I know I’m doing a lot of whining, and I apologize for that.  For the record, I am delighted to be pregnant.  I am extremely grateful for this opportunity to expand our family.  I have not lost sight of the fact that under all of the sickness is a miracle.  For all the ridiculousness, I love knowing that I’m growing a whole human.

Now if you’ll pardon me, I have a porcelain goddess to go pray to.

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So last Thursday, my OB’s office called me because for the three hundredth time my home health care company (Alere/Matria) had alerted their office to the fact that I wasn’t getting better… just worse.  The nurse (who hadn’t consulted with the OB) called me in a panic, couldn’t believe she hadn’t been told earlier (she had been – plus they get weekly reports from the home health company), and she demanded that I come in immediately to see the OB because they couldn’t do anything (change orders, etc.) until they saw me and ran some tests.  She had a 3pm appointment available, which gave me exactly enough time to send an email canceling my 3pm meeting, and get on my way to the OB’s office.

Of course, I was coming from work, so I looked pretty decent.  After all, at that point, only one person in the office knew I was pregnant (my manager), I do my best not to look like my miserable self when I’m at work.  My hair wasn’t a mess, I was wearing makeup… you know, I looked human(ish).  My OB walks in the room and says, “Well, I’m not worried about you at all! You look GREAT!”  That’s all fine and good, but don’t you want to know what’s going on?  I feel like … well, like “not great”.  I’m happy that you’re not worried about me, but hey, could I get a little help over here?  I was spilling ketones, losing weight, and hadn’t kept a single thing down (even my trusted SuperPretzels were failing me) in over a week.    Medically/Nutritionally compromised?  Maybe not.  But certainly my quality of life has taken a significant hit recently – and my ability to function at the bare minimum level I need to is waning.  As far as I’m concerned, that’s just as critical as whether my CBC is normal.

He wouldn’t discuss a steroid protocol with me (“We’ve never really done that here…”), he made a face at adding pyroxidine and Phenergan to my IV meds (but begrudgingly agreed to call in the Phenergan), and repeated over and over that “he’s not worried!”  He did check the heartbeat with a doppler to make sure baby’s still hangin’ out (heartbeat was present and accounted for), and he wasn’t going to draw labs until I insisted.  Meanwhile, I was standing right there when he asked his nurse to call in the IV Phenergan for me to the home health company.

The nurse never called with the order.  On Friday, my nurse at Alere called my OB’s office and played phone tag with them all day, while the OB nurse tried to verify with my OB whether she could authorize the change in medication orders, because he had written nothing in my chart about it.   Nothing.  The OB nurse failed to communicate the order to Alere before COB on Friday; as a result, I spent Saturday completely useless and miserable, praying for death.  Meanwhile, my OB’s office had also been alerted to the fact that my PICC line probably needs to be changed, but they said and did nothing about it.  (My OB *did* look at it from across the room and said, “It looks great!”… I’m sensing a theme here, how about you?).  My Alere nurse changed the PICC dressing on Friday and on Monday, and said the line really needs to be removed and replaced in a different location.  Alere reminded my OB’s office that they needed to look at it.  The phenergan finally got called in on Monday.

I talked with my OB’s nurse Monday and nearly lost it.  I was completely ticked that it took five days to call in a very simple order.  And her response?   “Well, you have to understand, I have emergency calls to take during the day.  I can’t waste my time sitting on hold.”  Never mind that every time the Alere nurse calls her, she sits on hold at least as long.  Never mind that I’ve given her explicit instructions on how to get through quickly to an Alere nurse.  “I have much more urgent matters to take care of.  I have to prioritize.”  Wait, what? I’m not important enough to bother with?  Hi!  I’m a paying customer.  I have a complex medical issue (or three) that I need assistance with.  I’m glad I’m not an emergency yet.  I’m trying to stay that way.  But if this PICC line doesn’t get changed, I will have an emergency that needs to be taken care of, and I’ve lost all confidence that the office could actually respond appropriately and within a timely manner to assist me in the case of a true emergency.

And today I had my regularly-scheduled appointment with one of the OB’s in the practice (a different one) and told him exactly how frustrated I was that an order that should have been called in on Thursday didn’t get taken care of until Monday.  And I explained that there’s a problem with the PICC, but he brushed me off at first and wouldn’t even look at it.  I pushed further and told him the specific issue – and though he still didn’t bother to look at it himself, he agreed that it needed to be moved.  He also agreed to change the dose on my IV Phenergan order.  Anyway, his nurse was supposed to take care of placing the new order with Alere for the Phenergan, and to coordinate with the hospital PICC Team to get me a new line ASAP.

Suffice it to say, neither was accomplished today.

The nurse called me an hour later and said, “The PICC Team said that since it’s infected, you have to go to the ER, get blood cultures drawn and if they’re negative in 72 hours, they can replace your PICC line.”  Um, but it’s not infected.  “Dr. R. said it was.”  Um, Dr. R. didn’t even look at it.  I tried explaining the issue to her, but she simply said, “Since Dr. R. said it was infected, you have to go to the ER.  If the ER doctor says it’s not infected, they can call me and I’ll call the PICC team.  I spent several useless hours in the ER only to be told, “but we don’t DO PICC lines!  [I knew that].  It’s clearly not infected, but obviously needs to come out.”  That was the extent of my ER visit, for which I had the privilege of paying a $35 copay, plus probably the balance since I haven’t met my deductible yet.  Good times.

Now it seems that maybe I’ll have a new PICC line tomorrow?  Oh, and that updated Phenergan order?  Didn’t happen today, despite the nurse’s assurances that it would be faxed today.  Yeah.

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I posted an U/S picture on facebook, and my law school roommate sent me a hilarious response.  He was shocked, to say the least.  I told him that he’d made me crack up and he said, “I wish I were as funny as you are fertile!”

I didn’t have the heart to tell him I’m not particularly fertile.  😉

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HG Research

The problem with hyperemesis gravidarum is that there isn’t a really good and consistent way to treat it.

Okay, I’m lying.  The problem with HG is that it sucks, plain and simple.

The other problem with HG is that there isn’t a really good and consistent way to treat it.   You start with oral medications like phenergan or compazine, then ondansetron.  Maybe try some vitamin B-6.  My doctor even suggested Unisom (which is an antihistamine – doxylamine succinate, I think).  The problem with each of these options is that they require you to be able to tolerate oral medications.  The ondansetron (Zofran) comes in oral disintegrating tablets, so you don’t actually have to swallow them, but there are two problems with them – you have to be able to tolerate the taste of them, and they’ve got aspartame in them – so if you’re like me and aspartame causes migraines… well, it’s not a great option.  Take the anti-emetic, get a migraine, throw up from the pain.  Good times.

Oral medications aren’t working?  Still losing weight?  Can’t keep fluid down?  Go to the ER for IV fluids and IV Zofran and/or phenergan.  That’ll hold you for a couple days.  Maybe it will even break the cycle.  You might also have the joy of having snarky ER doctors tell you that part of why you can’t put food in your stomach is because you haven’t put any food in your stomach.   Gosh, if you just eat, you’ll be able to eat!  Makes total sense.  Except, it doesn’t, because the lack of eating isn’t for lack of trying.

So multiple ER visits for rehydration don’t work, and the next step is inpatient hospitalization for IV hydration, IV antiemetics, etc.  Sometimes even just having the time to not be moving around helps.  And while I was in the hospital – it’s true, I felt reasonably okayish since I was very still, not eating, getting lots of fluid and antiemetics.  But I still wasn’t really able to tolerate food or much oral fluid.  Meanwhile, I was missing my first week of work.  Indefinite time inpatient is not an ideal answer for treating HG.

The biggest danger in patients with HG is dehydration.   Also nutritional deficiency, but let’s face it, I’ve got “reserves”, if you will, so malnutrition isn’t the biggest issue for me.  (I will note that I did, and possibly do, have nutritional deficiencies in my labwork – it just was the least of my problems at the time).    But dehydration is not so great for anyone, let alone someone who is pregnant.  Later in pregnancy, dehydration can actually trigger contractions – not a great thing for a chick with a history of early onset preterm labor (even for a triplet pregnancy, I started contracting extremely early last time – so although this is a singleton, I *am* at risk for having PTL again).

And so – while I was in the hospital, I had a PICC line put in.  A PICC line is a central catheter inserted through a vein in the arm threaded through to the vena cava.  A PICC line is useful because it gives long-term access (a regular IV has to be changed every 3-5 days), and can be used for TPN (total parenteral nutrition) if necessary (a regular IV line can be used for PPN but not TPN).    Having the PICC line enables me to get home IV fluids and I also run my Zofran pump through it.  This way, I can be treated as an outpatient, instead of staying inpatient indefinitely.  A good thing, right?  Of course right.  And at the rate I’m going… TPN may not be out of the question in a couple weeks anyway.

I am against TPN.  I lost so much weight in my last pregnancy, couldn’t eat much of anything, and no one batted an eyelash at the perinatology practice.  This pregnancy, with my regular OB and everyone’s hysterical about a 20 pound weight loss.  I don’t really see the medical difference here, except I have only ONE baby and a FAR less high risk pregnancy than before.   I don’t mind doing TPN if it’s truly necessary, but I’m clearly not malnourished, so I don’t see a true medical necessity.  Having TPN would also mean that my Zofran pump would have to be run subcutaneously, instead of through the PICC line (they can’t run both), which would mean I’d have to lower my dose of Zofran unless they changed my PICC line to a double-lumen line.  Therefore, I see a myriad of reasons to avoid TPN if at all possible.

Which brings me, in a long, roundabout way, to the title of my post.  I’ve been doing a little bit of research on HG and have found a few things.  First, I’ve found that the treatment protocol that my doctor has used up to this point has been completely appropriate, and absolutely textbook.  Second, I’ve found that I *can* get IV phenergan – so I’ll be calling my doctor about that this week.  I can’t keep down the oral phenergan consistently, but it *does* help at night, and helps me sleep in addition to helping the nausea abate, so I’d like to be able to get that in me more consistently.

But I also learned that there’s a pretty aggressive steroid protocol that can be used and seems to have some very promising results.  I hate what steroids do to me – but I also hate what HG is doing to me, and the steroids might have the added benefit of breaking the migraine cycle I’m in right now.  That would be lovely.  (Having been unable to consistently take oral medications to prevent the migraines lately – well, you can imagine that it hasn’t been pretty).

Also, I’m probably not getting enough thiamine – so that’s something we can add to my IV fluids (I already add a multivitamin and folic acid to my IV fluids once per day), but that’s easy to fix (I’m guessing it won’t help the nausea, but it’s still important).

So I have a lot of things to talk to my doctor about this week… and my next appointment isn’t until next week.  Hrm…

I’ve also pretty much given up hiding this pregnancy from anyone other than my employer.  I’m past the first trimester, and everyone I know locally pretty much figured it out when I spent a week in the hospital.  I hate that I have no control over it.  I’m still not telling anyone how far along I am or what my due date is.  I hate the countdown that people get into.  I’m even still getting it now.  “Oh for sure you’ll be better by 12 weeks!  What?  You aren’t?  13 then!  It’s worse?  14 for SURE!…”  Frankly, I can’t handle the pressure.  I’m trying to get through each day, not each week, and I just don’t need everyone around me continuing the countdown, so I’m doing my best to avoid telling anyone my due date under any circumstances.  Other than, of course, my medical team members.

Oh, and my husband.  Him too.  Though I’m not sure he can be trusted with that information.

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