I took Nicole for her first visit with a ob-gyn yesterday. Nicole has had anemia issues for almost two years now. On paper her hemoglobin looks normal and falls in normal ranges but for Nicole and her heart/lung issues her hemoglobin should run high and it doesn't. Her platelet count is consistently low and has been for the last two years at least. She takes a daily supplement of iron but it isn't helping to the extent that it should. Nicole tends to have heavy cycles on a regular basis. I see how tired and fatigued she gets, dizzy spells, cramps, headaches and just not feeling well during this week.
I am always very nervous when we have to go to a new doctor. I never know what to expect. Will the doctor listen to me, will the doctor know what PH is etc. It turns out that a resident was shadowing the doctor so we were actually seeing two doctors. She was very nice and very young. I was impressed when she knew that her VSD (ventricular septal defect, a congenital heart defect, a hole in the heart), PAH, and Eisenmenger's were all connected together. As with most doctors they are always surprised that her heart defect went undetected for so long. I explained about her anemia and the reason for the visit. She asked what her hemoglobin numbers were and I showed her the lab results but I had the May results along with the ones from previous months. I had, however, forgotten June's bloodwork. She looked at the numbers and looked at me thinking "what is the problem... these numbers are normal?" She asked me to leave for a minute so she could ask Nicole questions privately which I know they do as some girls are afraid to answer sensitive/private questions in front of their moms.
The resident left and consulted with the doctor. The doctor came in and was very nice. The first thing that impressed me was the fact she had contacted a friend of hers at University of Florida that deals with CHD's (congenital heart defects) to ask about her hemoglobin and this is how she knew that Nicole's hemoglobin although it was "normal" on paper wasn't normal. She explained about how we get our monthly cycles. She explained that Nicole can't take estrogen because of the risk of blood clots and with her health issues this is too big of an risk. She could give her progestin only which comes in severals methods like the Depo shot but the doctor didn't want Nicole taking something she couldn't take back out of her body. She has opted to start with the pill. I said I needed the approval of her cardiologist before I can give her any medication and she called her cardiologist in front of me and spoke to him. She told him that she believed that if she could stop her periods and with talk of possible iron infusions they could get her hemoglobin up and her anemia under control so she wouldn't be so fatigued.
I am very, very hopeful that this will be a godsend for Nicole. In some ways, Nicole taking birth control bothers me but I also know that because of Nicole's health issues combined with the fact that the medicine she takes causes serious birth defects she will never be able to have children of her own. If the pill works at getting her anemia in check this is the end goal.
I was also very impressed with the doctor and the compassion and understanding she showed Nicole. I am saddened that she is pediatric so she will probably only see Nicole until she is 21 since she is under the CMS (children's medical services) program. I will fill the prescription tomorrow and Nicole will start taking the pill. It is so hard to keep track of all these symptoms and issues but I know I must be more vigilant about this. I had a great idea on how to do this and hope that this will be simple so I will follow through. Nicole will go back in Sept. for a follow up. The doctor will start with the minimum dose and adjust it accordingly.
Both the resident and the doctor listened to Nicole's heart beat and agreed she has no murmur which is why the doctor's never suspected a heart defect. Nicole has a large VSD which is why there's no murmur. Even her diagnosing cardiologist would never of suspected without an EKG followed by an echo that she had a heart defect.