Living On Oxygen for Life
I am not going to lie to you. I am so relieved. Today, I had a doctor appointment to see one of my doctors (not a PH doctor). This doctor called my pulmonary hypertension doctor to report that I wasn’t breathing well. Those two doctors talked and then a bit of phone tag started and finally, my PH doctor told me to stop taking Tyvaso. I’m trying to get in to see my PH doctor sometime next week. The problem with that is the PH doctor doesn’t have office visits on the one day my husband has off from work (dentist appointment) and can take me (after said dentist appointment). I think they forget (because they have so many other patients) that I live pretty far away from the hospital. My husband does NOT want me to drive there on my own.
I started taking Tyvaso last Friday (one week ago). I started on 3 inhalations, 4 times a day. I did that dose on Friday, Saturday & Sunday. By Monday I was really suffering with serious shortness of breath, my lungs, esophagus, and bronchial tubes hurt. It hurt to take a deep breath… so I didn’t dare cough, sneeze, or yawn. So, I emailed the doctor on Monday morning and they responded with reducing the dose to 2 inhalations, 4 times a day for one week. I still had the same bad side effects today, even while taking the reduced dose from Monday through today.
The PH doctor said there are a few patients that have this similar reaction with Tyvaso. It’s not often that people react this way though. The doctor may suggest restarting Tyvaso at 1 inhalation, 4 times a day but I just don’t think that I can do it. I’ve had these side effects from the very first dose of Tyvaso. It’s not something that gradually started happening over time as I took this medicine. I do not want to have to put myself through this again.
I’m looking forward to getting back to my happy self again. =o)