You've gotta fight...for your right...to the best healthcare

As many of you know, I was diagnosed with cholestasis of pregnancy back in 2008, when I was pregnant with Ava.  Cholestasis effects your liver, NOT your gallbladder as some doctors would like to believe (having it taken out does nothing and women get cholestasis whether they have their gallbladder or not), and it causes severe itching that can only be taken care of with one medication, Actigall.  Anti-itch creams don't work and Benadryl doesn't work because the itching comes from bile acids getting into your blood stream.  The itch is literally UNDER your skin, not on the surface.  Actigall helps reduce the bile acids and thus relieves the itch.  If you're interested, this is a great website with lots of helpful information: Itchy Moms

When I was seeing Dr. C during Ava's pregnancy, I had to fight and fight and fight to get diagnosed and put on Actigall.  I called him numerous times during Christmas break, even calling on Christmas Day to state that I would be going to the hospital for testing.  I was in complete misery, wasn't sleeping, itching 24/7 and I had a doctor who was skeptical of it being cholestasis because it's such a rare condition.  When I finally got in to his office after having tests done at the hospital, I was armed with print-out after print-out from the internet in case I had to basically be my own lawyer and fight for my rights as a patient.  Thankfully he finally relented at that appointment and put me on the medication, and from there it was smooth sailing - I was carefully monitored the rest of the pregnancy and followed standard protocol for cholestasis: Actigall, follow-up blood work to check my bile acid levels, bi-weekly NSTs, and a 37 week induction date - which thankfully was unnecessary since Ava came on her own at 36w2d. 

However, my relationship with Dr. C was tainted after this experience.  I just couldn't forgive him for the way I felt I was being treated in those early days of severe itching.  I went through agony trying to get relief, was sent for tests I didn't need, and had to endure rude comments such as, "What do you think you're going to do when the baby comes?" when I mentioned I hadn't been sleeping at all.  All of this, coupled with the fact that Dr. C was a 40 minute drive away, led me to a new OB/GYN practice closer to my house.

My first visit with Dr. B was positive and she seemed to know a lot about cholestasis and the proper treatment.  I felt as though I had nothing to worry about...until today.  The itching has just barely started and I decided to get in the office right away for blood work and a prescription.  The unfortunate thing is that this is a large practice and many times, instead of seeing your doctor, you see a nurse practicioner.  I felt like I was talking to Dr. C all over again. 

NP: "Have you used any new soaps or lotions lately?"
Me: "No" (thinking in my head, DUH lady, cholestasis is not caused by soaps and lotions)
NP: "Let me see your hands, do you have a rash?"
Me: (showed her my hands, thinking DUH lady, there is no rash with cholestasis)
NP: "Why don't you try some Benadryl?"
Me: "Benadryl doesn't work with cholestasis." 

She did finally look at my records from Dr. C and ordered the correct blood tests, but, refused to give me medication until the results come in.  Insert me banging my head on the wall.

The test results should be in no later than Wednesday.  Thankfully, my itching is very mild right now, but I know from previous experience how quickly it can escalate.  I don't want my bile acid level to be high already, but I'm worried it'll be too low and they won't put me on the Actigall...and if this is the case, I guess I'm going to have to bring in print-out after print-out and once again fight for my rights.  It is just so frustrating to know more than your doctor's office.  I realize they cannot possibly know every single affliction out there, but if you have even one patient with a rare diagnosis, do some research!  Prepare yourself in case you see the exact same thing in the future!  Not to mention, check out a patient's records.  If this nurse had simply looked over my files, she would've known all she needed to know and we could've skipped that ridiculous conversation...

I will update when my test results come back.  Please pray that I do not have to fight a doctor about this AGAIN...