April 18, 2013

Today we had our 2^nd appointment with Dr. Walsh. Bryan says there was not a whole lot of new information divulged, though it felt like this to me. He thinks maybe the first time we went, I was simply focused on knowing one thing: whether or not it was in my best (physical) interest to continue the pregnancy. With this sour taste in my mouth (despite the Dr. being a SUPER nice guy), I was extremely nervous for today’s appointment. We started off talking about last week’s flu incident, but then the topic immediately shifted when he noticed my swollen ankles and feet. He asked me how my breathing was, and if I felt more severe shortness of breath. He described many of the common symptoms of congestive heart failure, which is what some people with my hypertrophic-cardiomyopathy experience, but then immediately compared them to pregnancy symptoms (almost completely identical). Since I found out I was pregnant and began re-developing heart issues all within one month of each other, it is hard to know what to blame these symptoms on. He suggested another echocardiogram done soon, to look for any potential changes, as well as bump up our visits to monthly, as all we can do at this point is monitor the symptoms and look for worsening, which may be more indicative of congestive heart failure. In keeping with a positive train of thought, not all people with hypertrophic cardiomyopathy go into congestive heart failure, and many can live successful lives on beta blocker medications alone. However, we will not know where I lie on the spectrum until I have finished the pregnancy and can be more thoroughly tested. He did say he is concerned at the rapid rate in which my heart has deteriorated into its current state, which all adds up to bigger questions. At this point, my two cardiologists (I see the other one on May 1) are scratching their heads, as many abnormalities have popped up between the two issues I have going on. But I digress….the first and main priority for all of us right now is getting through a healthy pregnancy, a successful delivery, and ending with a healthy baby and…then me. J
One bit of happy news is that once I complete my second trimester (seven more weeks!), the chances for cardiac complications go down, as my heart won’t be working as hard as it had to in the first two trimesters. When we talked about delivery, again the answer was “Lets wait and see”. He did mention that for his patients, he has to determine if it is best to deliver on the cardiac floor, in the ICU, or in the standard labor and delivery. Lucky for me, with how well I have been doing so far, he seems to think I will be okay with the standard labor and delivery. However, a cardiac nurse will be present, and I will need to be hooked up to a heart monitor. As for methods of getting this little bean out…well, that is still up in the air.

Another bit of interesting news was further details on the abnormalities of my heart rhythm and also the shape of my heart. So one test to perform will be an MRI of the heart, after baby is born. We talked about how I don’t fit into the “box” for either diagnosis (Wolffe Parkinson White and Hypertrophic Cardiomyopathy) and the doctors want to do more studying to find a potential link, if there is one. I could be carrying some sort of gene that has until now gone undetected or unclassified…maybe I can get a new disease named after me! He also talked to us about the potential of visiting bigger research hospitals where people around the world go to, such as the Mayo Clinic. I forgot to ask if it was all expense paid. We also talked about genetic testing, as two out of my three sisters have since completed and successfully passed their EKGs and Echocardiograms, but if I were to undergo genetic testing and have markers for the specific genes that are causing this issue, they could use this to their advantage in future evaluations. The doctor told us that they don’t particularly carry out genetic testing, because there are so many mutations and variants of this heart disease that it would be nearly impossible to find what exactly I am carrying or what the cause is. He did say, unfortunately, that once the parent is found to have this disease, the potential for off-spring to inherit it is 50/50.

We talked about my own life expectancy, and he assured me that, while we still need to test to know more details, he is hopeful that I have the less severe case of hypertrophic cardiomyopathy and that I won’t be among the smaller group who will need a defibrillator- that is, he is hoping I don’t have the dangerous kind of heart rhythm that could lead to cardiac arrest, and he did not seem to think my life would be adversely affected or shortened due to this either. We also talked about heart transplants, which are only reserved for a select few who don’t respond to any other kind of treatment, and as Bryan said, its like trading one problem for another. I have also been preoccupied with the feeling lately that I may be a danger to others, especially when driving and if I have a medical emergency, though he did not seem to think this is a likely scenario at this point. Once again, he reiterated how well I am doing and how great it is that I have managed to keep myself out of trouble for the past three months. Bryan and I credit God, prayers, and our stubborn German heritage :-).

Well, this is all the information I have retained and can remember for now. Its time to go put my swollen cankles up in the air. (This is something else exciting I may get to look forward to- compression stockings and potentially going back on diuretics- but only if necessary, although there are some that are safe for pregnancy). As Bryan said, the doctor talked A LOT (about 30 minutes) and he used some big words. For every issue we discussed, there were three or four subsequent bullet points he presented, which made me wish I could record the conversation, or not feel like an idiot as I tried to keep up and take notes at the same time. But he was very patient with us, answered all of our questions, and put our little minds at ease…for the moment. We really could not ask for a better and more patient set of doctors. We are truly blessed in the midst of all of this.