Thursday, November 25, 2010

Ongoing treatment through Pregnancy

When I had my last Infliximab transfusion, I was told by the nurse, rather casually, that my next one in December would be my last until one month after the baby is born, making it sometime in May. Naturally, I panicked. I can’t go FIVE months without medication. Hell, history has clearly demonstrated I can’t even go five weeks without medication.

The nurse was not at all concerned. She brushed me off with a “You’ll be fine” and “it’s best not to take unnecessary chances when you’re pregnant.” I wondered how she catergorised the very real risks of my becoming so unwell that I can’t eat, become malnourished, have intestinal blockages and require hospitalisation and surgery on the growing baby. Would she tell a person with diabetes to stop taking insulin? Or someone with epilepsy to cease anti-convulsants?

I considered asking her this, but decided to go straight to the source: My specialist. After all he is the one who has the ability to override this seemingly arbitrary rule, not the nurse. As much as I respect the work that nurses do, they are essentially powerless against the organisational red tape.

I made the appointment but my baby brain kicked in and I completely forgot all about it until a week afterwards. Way to maintain credibility. I called, apologised and begged for another appointment. His receptionist was unimpressed but after an agonising few moments where it seamed she would not get me in until January she relented and said “Well I have had a cancellation for Wednesday.” I took it, along with her comments about ensuring that I do actually turn up this time with gracious appreciation and wrote down the appointment everywhere, diary, calendar, even a bright yellow post it stuck to the side of my computer.

On the drive over to my specialist I replayed arguments I anticipated I would have with him over in my head. After my last surgery in 2008 I was without medication for 6 weeks. During the surgery they removed all the active Crohn’s. 6 weeks later my guts were absolutely riddled with it again. I told them. They dismissed me. A colonoscopy preformed at the 6 week marked showed exactly what I had been telling them: Complete relapse, worse than it had been pre-surgery. It took two years and multiple admissions, procedures, minor surgeries, blockages and medication trials to get me to the point I am at now, which is relatively healthy and able to function. I planned to remind him of all this.

Don’t get me wrong, I’m not dismissing the risks this medication may pose to my unborn child. I’ve done the research. Infliximab is a category B1 drug, this is defined as:

“Drugs which have been taken by only a limited number of pregnant women and women of childbearing age, without an increase in the frequency of malformation or other direct or indirect harmful effects on the human fetus having been observed. Studies in animals have not shown evidence of an increased occurrence of fetal damage.”

Essentially all of the research that has been done has shown no adverse effects, however to move the drug into the Category A slot, more research needs to be done. Compare that with the risks to an unborn child where the mother is malnourished treated with prednisolone, etc. Not to mention the very real chance of death to both mother and baby in the event of an intestinal blockage. In my mind the risks associated with relapse are far worse than the risks of taking this medication.

I arrived at my appointment and sitting impatiently before my specialist as we exchanged pleasantries I found it impossible to contain myself. “Look, can we just cut to the chase?” Yes, I actually said that. He looked at me a little taken aback and slightly amused. “Is there a problem?” Um, yes. There’s a pretty big problem. I calmly explained. He considered me for a moment and then said “That won’t work. You can’t be without medication for that long”.

I was stunned. I’m so used to fighting and arguing with medical people around my treatment that in all the scenarios I played in my head on the drive over, it never even occurred to me that he might actually agree with me.

He said that the whole waiting one month after birth thing is nonsense. Once I give birth I can have the infusion as soon as I am able to physically get there. He said, if you give birth on Monday, you can have the transfusion on Tuesday if you like. He then said that he is prepared for me to have the transfusion anywhere up to 35 weeks pregnant. He then emailed the IBD nurse, the medi-hotel unit manager and the pharmacy as we spoke to inform them of the same. He is a man of action. I should never have doubted him.

So I will have my next regularly scheduled transfusion in December. Then I’ll have another in February, slightly earlier at 6 weeks, then the next will occur in April after I’ve had the baby, as worst it may be two weeks late.

Crisis averted. I feel unbelievably relieved.


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