Well, I have not posted in a while. So where have I been? No not traveling this time - so let's get candid on not feeling well and low hemoglobin...
First off, I am alright! I've been offline dealing with you guessed it medical issues. What I initially thought was a few rounds of bad subq remodulin sites turned out to be something a little more complicated …. low hemoglobin.
My Pulmonary Arterial Hypertension diagnosis is linked to a genetic disorder called Hereditary Hemorrhagic Telangiectasia (HHT) or also known as Oslo Weber Rendu. HHT causes malformed blood vessels and can affect multiple organs of the body. 15-20% of HHT patients may develop PH, however the number is smaller for those diagnosed with PAH.
As an HHT patient, I routinely get my hemoglobin and ferritin levels checked every 4-6 weeks. Hemoglobin in blood carries oxygen from the lungs to the rest of the body. And ferritin helps understand how much iron your body stores. For women, the healthy range is to have a hemoglobin in the 13-16 range. Having a hemoglobin below this range can make you feel weak, tired, restless and not like yourself.
Last time I checked my levels 4 weeks ago, my hemoglobin was 16, so well within the healthy range if not on the higher side. I felt like my normal self and could do everything (within reason). Since then, I slowly started to notice symptoms that were abnormal to my everyday life. Walking down a hallway seemed exhausting, my O2 stats were lower than ever, abnormal bleeding from my lip and nose, constantly nauseous and had a high heart rate - even at rest.
I immediately thought my sub site went bad causing these symptoms. After changing the site (twice!) it seemed not to be the case. The next thought? - Coronavirus. Nope, tested negative.
So during these long 4 weeks, it was a trial and error of trying to figure out what was wrong.
Until yesterday, when I got my hemoglobin and ferritin results. In a month, my hemoglobin dropped from a 16 to 8.8. Almost half my hemoglobin level in less than 4 weeks, is a huge change, not to mention that it is well below the normal range. In hindsight it explains everything - excessive bleeding causing lower hemoglobin, fatigue, shortness of breath &
lower sats.
Luckily, I have a great hemophilia and hematology team and already got one dose of iron and another next week to be as good as new.
I appreciate everyone who reached out, and will be back to post more soon! Just remember to always look full picture at your conditions and symptoms since it may not be what you
expect! And always advocate for yourself when not feeling well! See y'all soon 💜
