Sophia Grothoff, 22, of Bonn, Germany, was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in February 2020. Her story has been edited for style and clarity.
I had trouble breathing for quite a while before I was diagnosed. No one really took me seriously until I started coughing blood in December 2019. I was in the hospital for a couple days for some tests. No results. No one knew why I was coughing blood or where it could have come from. So, I got sent home. I wasn’t supposed to think about it anymore, but I had this strange feeling inside of me that something was not right.
I am currently doing my education to become a midwife at a university hospital in Bonn, Germany. I thought that it could help to talk to some doctors I know who work with patients who have heart problems. I asked one of them for her opinion and what she thought I should do. She also had a strange feeling about all of this. She talked to a cardiologist from the hospital where I was working. Finally I was taken seriously.
Long story short, it came out that I am suffering from PAH. I was shocked. I always knew that something wasn’t right, but I didn’t expect it to be a rare disease. It took a while to accept the fact that it will never go away. I had busted dreams and moments of uncertainty. A huge difficulty for me right now is the coronavirus situation. Because I am still doing my education, I only have a certain amount of sick days. I’ve reached these days already.
I was told not to go to work [during pandemic stay-at-home measures] because I am a person high of risk. I was glad that I got to stay home because this virus is kind of scaring me. I don’t really know what the virus is going to do to people with PAH. I would rather stay home safely instead of working and risking getting the virus. It might be harder for me to keep up with the others because I am now missing out on a bunch of stuff.
The hardest thing for me since I got diagnosed was that I was told not to get pregnant. I think it’s every girl’s dream to build a family of her own someday. That dream was busted right away. I think it’s even harder for me right now because I am studying to become a midwife. It’s something I think about a lot, and it’s still hard for me to accept.
Other than that, I am trying to eat healthier, stay active and quit stuff like caffeine and alcohol. Being out of breath sucks, but I am just trying to accept it and adjust to everything. I keep telling myself that everything happens for a reason.
My family is really supportive and is helping me deal with all of this. I am trying to stay positive even on rough days. There is always something good in every day; we just need to look for it. Don’t make it worse than it already is. We are going to make it. We will have a wonderful life even under these conditions. Hope and positivity are all we’ve got.