NJH Patients

@positivethinking I had a VQ scan at NJH. It was useful and showed how little my right lung was functioning and helped me make the surgery decision. Also to you and @Cathln I recently was told (after right heart cath) that I have mild pulmonary hypertension. Have either of you had meds prescribed? Thanks...

Thank you for sharing. My elevated pulmonary artery pressure was detected with an echocardiogram in 2023 it was mild. Now the same test is showing moderate pressure. Since I just learned about the increase in pressure this week, I have not had the vq test yet. I haven’t even gotten a script yet for it from my local dr. I have not take any meds specifically for this since i have not had the test. I do take meds for hypertension and Arrythmia as well as Lipitor. I am very nervous about the condition of my lungs. Are your doctors just watching you or have they prescribed medication for you?

@positivethinking I went to NJH in 2022 with BE and MAC. They did the V/Q test then for that, not for pulmonary hypertension, and ultimately I had my right lung removed because the test showed it was only operating at 30% of what it should be and my other lung was making up the difference anyway. I still have bronchiectasis in my left lung, but not as bad, and so far, three years later, no MAC. Recently I was diagnosed with the pulmonary hypertension. The echo didn't show it but a right heart catheter did. They have prescribed tadalafil for the PH but I haven't started it yet. I wish you well with your test.

I was in the same boat. I just came back from NJH. I don’t have any symptoms. They do many tests and are very knowledgeable about the disease. They try and find the cause and you receive much information. I was doing my airway clearance all wrong and respiratory therapist showed me the proper way. They also recommended a smart vest for me because I am unable to get a sputum sample. Im working with the smartest company now. If you wait until you are sick you will be less prepared. Unless you have very good knowledgeable local doctors. I don’t. They are my doctors now if and when I need them. I follow up with them in 6 months.

Can you explain how you were doing airway clearance wrong?
I've had no guidance since starting.
Pulmonary clinic just gave me aerobika.
I don't even know if I have on right setting.
I watched a couple of videos.