I haven't written on here for a while whilst i have been having tests and awaiting results etc.. But do read topics on here most days. I found out a few weeks ago i do not have a hole in the heart, which was a huge relief but, also raised questions over what is causing the shortness of breath i have been experiencing every day for the last 11 months?
I just wondered if anyone has been through an experience like i am going through currently. I saw the consultant this week and he said he only has one more test that he can do and believes i have something wrong with the way the blood vessels are linked to the lungs (or may be mistakenly bypassing the lungs) or it may be a lack of maturity of the lungs but really he does not know and cannot therefore treat it. He did say he has only had two other people in the last 15 years who had the same test results/symptoms. They happened to both be physically fit women in their late 40's like me.
I am a bit stunned and it is still sinking in. The last test is i believe the ventilation/perfusion scan. But he spoke to me as though he was sure of the situation. I have loads of questions for my next appt, like will it deteriorate, is it linked to my 'strange, difficult to control' asthma? How do i describe the condition for work/insurance situations?
He has increased my symbicort dosage and put me on uniphyllin in the meantime and has asked me to think about a daily dosage of steroid tablets, he said, 'one to one and half tablets a day.' So, I am assuming he meant 5mg tablets. He has also asked me to work on my physical fitness, which i know will be a challenge when i get out of breath after 10 - 15 min snail-pace walking, but i am going to get my fitness back!!
I would just like to hear of anyone else's knowledge on any of this please?
Thanks Jac xx