Hi - I've posted here before and got lots of useful advice. For those who have read my posts, you will know I've had a very confusing time with lots of docs not being sure what's causing my rapid heart beat at rest and SOB on mild exertion.
I saw a very qualified specialist today and had a ton of tests, and the short version of what he said is that I have some symptoms that suggest I might have pulmonary hypertension, but a few others that don't! The way my breathing has deteriorated so dramatically in just over a month is one of the things that is confusing him. He confirmed I definitely do not have COPD but cannot say for sure what I do have.
Basically, I've got to have a catherisation on Tuesday to both sides of my heart. He said it's the only way to accurately measure the pressure on the right side of my heart that showed up on the echocardiogram.
I asked about sarcoidosis but he says that, even though I've had something weird going on with my lymphocytes and t-cells for a few years, I would have visible granulomas that would have shown up on my V/Q or CTPA scan. I assume that also rules out any scarring I might have got from inhaling vomit when I woke up choking a couple of months ago.
He thinks that if I do have PH, it could be idiopathic. I am really not happy with that suggestion. Couldn't it just as easily NOT be PH but because they can't pin down the cause, they might stick this label on it? I thought IPH was rare?
He said that my cough has nothing to do with my possible PH and suggested that I try to persevere with the reflux medicine to see if that helps. Because of the coughing/gagging at night, I thought I had gerd. A reduction in the amount of caffeine I drink has helped. Looking up the symptoms of silent reflux ticks an awful lot of the boxes for my symptoms. They suggest untreated LPR can sometimes affect lungs or breathing.
Has anyone been in a similar situation or has experience of something similar?