Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
I have talked before about my heart worries, about the fear that I have that all is not well in my heart after all (see this entry from last month: https://livingwithfh.blogspot.com/2017/12/the-tricky-balance-between-trusting.html). Although most of the time I feel OK ( I have never in my life felt ‘great’, really), there are some symptoms that sometime worry me more than others. My neuropathy in my hand and arm, and the strange pains in my chest, also my weird voice that has gotten raspier and quieter with time, after my surgery are not worrisome to me that much. But the weird blood pressure which persists and the shortness of breath which feels like a lack of air when I try to exercise even a little bit do worry me. Is my heart truly OK?! With a move across country and with trying to find the right doctor to figure this all out (and not really finding one I can truly trust so far) the worry seems to grow bigger. The new cardiologist I have seen in my new home state seems to be overwhelmed by the weight of my heart concerns, at least this is how I feel after having seen her for the past three months now. Anyway, this is about the new findings in some tests that she ordered rather than about my relationship with her as my caregiver. That is a topic for another post! As I was mentioning in the blog linked above, because of these concerns I have, and because she finally listened, she ordered a holter monitor for a couple of days and a cardio-pulmonary stress test. A month or so later I finally received the results to both of these tests. Apparently, the delay was caused by her not being able to explain the results herself and waiting to find a more “senior” cardiologist to interpret them. How’s that for not worrying?! She did not have much to say about the holter monitor, other than “my heart was beating faster when I recorded the discomfort I was having.” However, she did not say what mishe have caused my heart to beat faster, especially when most of the times when I recorded the discomfort were at rest. For those of you who have not had a holter monitor attached to your chest before, it is a device (https://www.heart.org/HEARTORG/Conditions/HeartAttack/DiagnosingaHeartAttack/Holter-Monitor_UCM_446437_Article.jsp#.WlzccqinHIU) that is connected to all these wires (like a mini-EKG machine). The wires are attached to your chest with stickies. It is the size of a mini-ipod or so, and you wear it for any amount of time (a day to a week). You cannot shower when you wear it. When you have any kind of chest discomfort, like palpitations, short of breath, chest pain or pressure, there is a button on it that you have to press to signal the holet that you are having an “event”. At the same time, you record the time this happened in a journal and you specify what you were doing at the time when this happened. When they receive back the monitor from you, they put the reading of the monitor together with your report to understand what really happens with the heart in the moments when you recorded the discomfort. Outside of a brisk walk one day when I recorded shortness of breath, all the ‘events’ I recorded in my journal and signaled on the monitor were at rest. So, why my heart was beating faster, I am not sure and the doctor did not explain. But another bullet point has been added to my concern list, as you can imagine. Then, she also ordered a cardio-pulmonary stress test. Although I have done many stress tests in my life, I had never done one of these before. It is not pleasant. Nothing hurts, but it is very awkward and very uncomfortable. As you are walking on a treadmill, they hook you up to an EKG machine to monitor the function of your heart. There are two techs in the room: one watching your lungs and one watching your heart. They put this mouth piece in your mouth and they clip your nose: you can only breathe in the mouth piece which is connected to this hose which measures your lung capacity and other variables. You cannot swallow your saliva during this and you run on a treadmill with this whole setup on you for as long as you can. They speed up your treadmill and they increase the angle of the incline slowly as you exercise. The test is supposed to find out whether you have any kind of impairment to exercise, whether from the heart or from the lungs. The way my cardiologist explained, there could be three things that stand between you and a good cardio exercise: it could be physical de-conditioning, which is a fancy way to say that you’re out of shape. It could also be a pulmonary impairment, where your lungs don’t fill up with enough oxygen for whatever reason. And there can also be a cardiac or circulatory impediment which would mean that either your heart does not pump enough oxygen to your body (which could point to a ‘bad pump function’ of the heart) or the exchange between the heart oxygen and your body is limited, because of blockages in your circulatory (arterial) system. They found no pulmonary impairment, according to the doctor, although some of the decoding I did does say that there is a limited oxygen exchange at the level of the alveoli. But it is unclear to me whether that is on the lung or the circulatory side. They also found physical deconditioning, which I know is there, because after years of limitations, I can only push myself so much to do cardio exercising. So, I know I don’t do enough to stay in shape. What they found out more clearly, was that I have a mild to moderate cardiac impairment. Apparently, they can measure something called the VO2 max or the VO2 peak, which is the maximum amount of oxygen your body gets during exercise. For more on the VO2, see https://en.wikipedia.org/wiki/VO2_max. Based on my weight, age, etc, the VO2 prediction is 31.30 mL/kg/min. At my level of extreme exercise, it is 19.90 mL/kg/min for me, which is at about 64% from where it needs to be. Related to this, the value of the METS (oxygen uptake in ml/kg/min) was only 7.43, and from what I read for a woman my age it needs to be around 9.5. So, to unscramble all this: my body does not get enough oxygen when I exercise. The doctor says this could be due to either or both of these things:
- my aortic valve does not work sufficiently strong to push the oxygenated blood out to the body or my heart muscle doesn’t work sufficiently to do the same thing.
- I have still blockages in my (heart or body) arteries that prevent my muscles (including the heart muscle) to get enough oxygen.
To view original post visit: https://livingwithfh.blogspot.com/2018/01/latest-in-my-heart-tests.html
Blog Post by A.W. About this Blog
In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.