My story
My journey with Pectus Excavatum started in 2016, even though I didn't know it at the time..
I was born with this condition - but as I had no real physical symptoms, we never paid much attention to it. But it was something that made me very self-conscious. I would avoid doing PE at school, and learned from a young age to forge my mom's signature on the excuse letters. I used to think it was because I just didn't like sports, but looking back now, I realise it was because I struggled more than the other kids. And getting dressed in the open changing room with all the other girls was something I avoided with a vengeance. As I grew older, I learned how to hide the deformity with clever clothing choices and once I found a good bra, I could pass as almost normal.
But back to the present. As I said previously, I used to dislike sports and actively avoid it. But in December 2013, while on holiday visiting my parents who lived near Stormsriver (Eastern Cape), we decided to go for a walk in the forest behind their house. It was a hot day, and even though we walked mostly in the forest, it was very humid. I remember thinking to myself "this is why I don't do stuff like this, I'm miserable". But that all changed when we suddenly popped out of the forest, onto an old forestry road and bridge crossing the most amazing, clear river. I realised in that moment that hiking is the only way to have these experiences, and to discover the little hidden gems of nature. The bug bit and I was hooked. The next day I went to go buy my first pair of hiking boots, and during the rest of the holiday, we walked every trail in the area. Once I got back to Cape Town, I joined every hiking group I could find and started hiking every weekend. After a year and half of hiking, I still struggled to keep up with the groups. I was fine on downhills and flat sections, but as soon as the trail had a slight incline, I would fall behind. I thought it was maybe because I just wasn't fit and needed to work harder. At the end of 2015 I started my own hiking group - by that time I had become so despondent because I was always at the back of the group, I figured if I had my own group, I could determine the pace. In 2016 I realised it's not just fitness, so I went to the doctor for the first time.
And this is where my story starts...
The doctor ran tests and determined I had low iron. So I was put on an iron supplement. After 3 months I was sent for x-rays to check my lungs, and that was where I first saw the term "Pectus Excavatum". I asked my doctor about it, and he said it's no big deal and can't be the reason for my exercise intolerance. He said I could get it surgically corrected, but the medical aids will see it as cosmetic and will never cover it. That pretty much ended that conversation. Then the dance started... Every few months I'd go for tests, my iron would be slightly better, so I was told to continue the supplements. A few months later, I would go for tests again, and it would then be lower, but not enough to be concerning, so once again I was told to continue the supplements and come back for tests in a few months.
In the interim, I had done my Adventure Guide course, and became a registered adventure guide. With the intention of doing guiding as a part time venture. I realised very quickly that I can't guide clients up the mountain if I can't even keep up. Who wants a hiking guide that is always right at the back, and that you have to wait for the whole time to show you were to go next?
In 2022, I had enough and went to a different doctor. He sent me for all the tests again to get a new baseline, and also x-rays again to make sure the issue is not my lungs. All the tests came back fine (except the iron being low), and he let me know my lungs are also fine. So I was referred to a Hematologist to try and figure out why my iron stays low, or if there is another reason for my fatigue and exercise intolerance. Once again, tests and more tests. Still no reason why my iron is low and no solution. So the doctor suggested we try intravenous iron, to see if that helps, and then if my iron is still low, we can start doing the more invasive tests like bone-marrow biopsies etc. Of I went to the clinic in Durbanville (this was now a few months later, after some fights with the medical aid, and after doing the 5-day Tsitsikamma hike where the only thing I could think of the entire 5 days was "WTF am I doing here, I'm dying..."). The doctor at the clinic very nicely explained that the intravenous iron is like Lego blocks - my system will now take those Lego blocks and build the hemoglobin that is used to transport the oxygen around my body. He said the process takes about 4 to 5 weeks, but I should start seeing an improvement already within 2 weeks. Fast forward 5 weeks, I did a hike I've done many times before, and I struggled more than the previous time I did it. To give context, the elevation gain of the hike was less than 300m over about 2km. I phoned the doctor and asked to have my iron tested again. The tests came back and my iron was now 100% normal. So, something else was wrong.
I was then referred to a physician. After brief examination, and putting me on a treadmill, he thought it might be my heart. So we did an echo, an ECG and a stress ECG. With a whole list of blood tests thrown in for good measure. Everything came back fine - the doctor was actually surprised I'm struggling so much, considering how good my test results were. He then said maybe the heart is not the culprit, but actually the victim, so he sent me for a CT scan to check for blood clots in my lungs.
Finally, the test results came back: severe Pectus Excavatum with compression and leftward displacement of the heart. Haller Index (HI) = 5. The doctor let me know that the PE was actually more severe than what was observable, and this might be the cause of all my issues. BUT - why is there always a but - he was not sure if this was what was actually causing my exercise intolerance. So we first needed to tick a few more boxes and I needed to go see a sports physician to do lung function testing and VO2 max testing. Like a good little soldier, off I marched to the sports physician's office in Newlands after waiting another 3 weeks for an appointment. We did the lung function testing, and he saw there was a definite drop in function after exercise, but he also didn't think it was because of the PE. Instead he thought it might be asthma and prescribed an inhaler to use for a month, then come back to redo the lung function test and VO2 max test. Part of me was relieved as I left the office, because using an inhaler once a day, and then being able to function normally seemed almost too good to be true. It was... The inhaler made me feel extremely jittery and light-headed, and gave me a terrible headache. And I still struggled on hikes.
When I first got the CT scan report, I started doing research on PE. I joined online support groups and started educating myself on the surgery options, etc. I also received a recommendation for a surgeon in my area that does the surgery on adults. In South Africa the surgery is rarely performed on adults, and most doctors would not recommend it (which is why I think my doctor was looking for other reasons for my exercise intolerance).
I decided I was not going to wait a month while using the inhaler, but reach out to the surgeon that was recommended and get that ball rolling so long as the waiting list to get a consultation with a surgeon can sometimes be weeks. So I requested a copy of the x-rays that I was sent for in September 2022 (just over one year ago) so that I have all my reports when I see her. When I got the x-ray report, I felt something break inside me. The report clearly states severe Pectus Excavatum is present, and even though they can't determine the HI, it is estimated to be at least 3.9. This was not what broke me, but rather the fact that my doctor received this exact report with the section about the PE in bold, and yet he sent me to the hematologist to look at my iron. If my doctor knew more about PE, and rather sent me to a cardiologist instead of a hematologist, could I have been further along in my recovery by now? This question haunts me, but I remind myself that God has perfect timing and a reason for everything.
And now a new chapter starts. Or perhaps even a new story. By this time next year my life could be so different. Let's see how it unfolds :)