We went to our first doctor’s appointment following the review of the pathology report with my OB. This doctor’s appointment was to see the Reproductive Endocrinologist (RE) upon the recommendation of my OB. I went in filled with anxiety, a notebook filled with notes, questions, and copies of studies on CHI, and my husband by my side.
The nurse took my stats and told us that we would first see the resident and then we would get to speak to the RE. The resident was kind and took our story down for my chart. After a fairly long wait, the RE came in and apologized that she had taken so long, she was trying to track down some of my testing from the hospital. Not that I had ever been in a situation where a doctor needed to track down info about me, but I was impressed that she had actually taken time to do so. She then began asking about testing we had done. Did we have genetic testing on Ava after birth? Did I have a maternal blood test for genetics? There was some indication of a potential heart issue – did we get an autopsy?
The only thing relating to Ava’s heart that was ever mentioned to us was that they like to get a cardio consult on cases like mine to rule out and get as much info as possible. We had a cardio consult scheduled, but Ava didn’t make it long enough, though she fought hard. At our 18 week anatomy scan we were told the chambers of the heart and blood flow looked perfect. What was in my chart that indicated there was a problem? No one said we needed to get an autopsy to follow up on this potential heart issue. I know there are already too many regrets on my list of should have done this or that, but I mentally added this one anyway.
I started to become concerned that the doctor would focus too much on genetic abnormalities that weren’t there, or the fact my blood pressure was high that one time in my entire life, and ignore the papers that clearly stated CHI was what led to the end result. Because doctors know high blood pressure and genetic issues – they don’t know CHI. I asked if she had ever had a patient who presented a pathology report with CHI and the answer was no. “Aw, how sweet, I’m her first,” my sarcastic brain chimed in.
The RE then began to dive into potential treatment options with the caveat that she would not be comfortable giving an opinion on course of treatment until I met with the MFM and they had time to discuss further. She started out covering the basics of baby aspirin and a blood thinner. She stated that Heprin was commonly proscribed, but since I didn’t present with the typical thrombotic issues, Lovenox is perhaps a better alternative. She went on to explain that steroids like Prednisone carry more risks, and she would rather not prescribe them if they weren’t necessary. Perhaps I could start them as a “last ditch effort” if things started to go wrong. I started to feel that she was going to stop at those and call it a day. I asked about hydroxychloroquine. She stated that she had seen case studies that used this, but there was a newer drug that had caught her interest. She excused herself and quickly left the room and came back with the name of the drug. Tacrolimus. I had seen this in my research – it’s an immunosuppressant meant for transplant patients to keep from rejecting their new organ. I immediately felt relief because if she knew the name of this drug, she really had read up on some studies and was open to trying more than the “classics.”
So, as it stands today, I will have an appointment with the MFM, then a rheumatologist to rule out any underlying autoimmune disorders, and then an official game plan can be set in place (hopefully by the end of April). However, based on the discussion today, tentatively the plan will be to start baby aspirin, then start Lovenox upon a positive pregnancy test. I will get a scan at the RE office at 6-7 weeks and then have a scan every other week until I transition to the MFM and OB to continue care. Since the RE didn’t want to commit to anything before I see the MFM, I didn’t get a final answer on the Tacrolimus, but if we go that route, I believe I won’t have the need for Lovenox. I would love to avoid having to jab myself twice daily for 9 months if possible, but if MFM recommends I do both, I will absolutely do both without an argument. What ever it takes to have a baby earth side.