since 27th october it is prooved and confirmed that I am having CTEPH –
I am a 39 year old mother with a son (he turned 3 on the 11th nov) and married to an amazing
husband – we all 3 live together in Ibiza, having a good business, working hard but also
enjoying /were enjoying live very much.
Why I am writing, cause I want to help other young mothers / woman to make sure they listen better to their body as I did…since 2nd of may I am noticing, that sth. isn´t working well, but I thought it is the stress, as season started, as an Event & wedding planner may and june are the bussiest month. I was calling my mum while I was walking downstairs to our living room – heavily breathing and she was asking me: what are you doing, exercises?
I would love to tell my story to everybody to awake awareness and attention to this „rare“ illness.
I am afraid on the one hand side as I am fighting for my life, but on the other hand I had good luck
as I ended very quickly in Bad Nauheim. After a general check and echo they kept me in the private clinic in Ibiza, where we live in Intensive care for 4 days. One family member only was allowed to visit me, twice a day for max. 60min. Either my sister in law came or usually my husband, as well he managed and we paid for it to fly to munich in a privat jet by hiring a professional team of rescue doctors from Johanniter. They had a short slot to bring me from the clinic to the airport and landing in munich. I remember the smell of cows, countryside when we landed, sun was shining, what is not very common in Germany end October.
At the clinic Grosshadern, I was again in the hands of Prof. Dr. Behr and now there was no other chance beside a right heart catheraziation to proof which illness I am having. Or let´s say to get closer to the result. My husband arrived very late this night and came straight to the clinic where I was staying in public as no bed left in private station. I noticed the difference very much. Nursery´s friendly as well, but the standard, room, food, everything was less comfortable. Of course ; ).
Next day I had the RHC and the doctors were talking about a cooking class, cook book…laughing…I think it is their way to survive the daily business but also to give the patient a “normal” feeling. I was tumbling a lot, freezing, afraid, but I managed to stay calm, to let it happen. This I was able to do due to the last classes with my pilates prof where we did some meditation, breath exercises, I could focus on my own personal warrior, my inner strength and visualising her with the wolfs dog…upon a hill, taking care of me…praying to god as well on the other side…being awake as I had to do some breath exercises while they were checking my heart and my lungs.
Next day I had the RHC and the doctors were talking about a cooking class, cook book…laughing…I think it is their way to survive the daily business but also to give the patient a “normal” feeling. I was tumbling a lot, freezing, afraid, but I managed to stay calm, to let it happen. This I was able to do due to the last classes with my pilates prof where we did some meditation, breath exercises, I could focus on my own personal warrior, my inner strength and visualising her with the wolfs dog…upon a hill, taking care of me…praying to god as well on the other side…being awake as I had to do some breath exercises while they were checking my heart and my lungs.
How can I help others and also what can I do to „move“ the medical research, finding new or improve the technics in operations
/ interventions like the BPA (had my first 11the dec)?