Life with pulmonary hypertenson, a Blog by Caro, a patient

My name is Carolin and I have been living with the rare, chronic disease pulmonary hypertension since August 2015. My diagnosis came 3 days after my church wedding, but the first symptoms started in November 2014, when I was travelling with my mum and a friend in Barcelona and quickly noticed that they were both much fitter and I was constantly out of breath.

Then, in February 2015, my health deteriorated rapidly after coming down with flu. I was then sick at home for 2 weeks and after about a week I started to notice water retention. I went back to the doctor, who listened to my heart and lungs, but couldn’t find anything unusual. After a few tests, they told me it was hypothyroidism. I was given tablets for it, but my condition got worse and worse with the tablets. Since my church wedding was coming up, I decided to go through with the wedding and then get a second opinion. But I didn’t get around to it.

On 28 July 2015, I was admitted to the emergency room at 5 a.m. with very poor oxygen levels and severe shortness of breath, as well as severe pain in my legs. The hospital I was in quickly told us that they couldn’t help and that I had to be transferred urgently to a special hospital, as I was definitely going to die in the current hospital. Within a few hours we got the OK for the transfer to the Löwenstein clinic and the next morning I was transferred. After about 2 hours, I was diagnosed with pulmonary hypertension.

The first months after the diagnosis were very hard. I had to learn that everything I wanted for my life was no longer possible and that I had to change everything. I then looked for information and other patients to exchange ideas. I quickly found PH e.v. (the German pulmonary hypertension association), and also patients, with whom I could exchange ideas. But I couldn’t quite get rid of the things that were buzzing around in my head. So I started to write my blog I got everything off my chest and quickly received messages from patients who felt the same way. Everyday life with the disease is not easy, because every day we fight a battle against our own body. A fight that we actually cannot win. Writing the blog helps me to deal with the problems of everyday life so that I can go into the day stronger and shape my life in a positive way.

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