Dave

Devastating – Unpredictable – Misunderstood – Terminal

Hi Kris: usually a heart catheterization of both left and right sides is a pre requirement for a lung transplant. Alot of times if a stent is required, that will be done during the catherization. I’m thinking once the stent is done, you could proceed with the transplant testing process. Just my opinion.

My total hospital stay including the day of surgery was 10 days. I was then discharged to Gift of Life House in Philadelphia for 2 weeks to be close to hospital if I experienced any issues. Home health nurse visited me there twice a week and PT and OT was ordered, but I didn’t need them as I was getting around quite well on my own. Today I am one…[Read more]

I was diagnosed with Idiopathic Pulmonary Fibrosis disease in August 2021. I had been dealing with shortness of breath and it was progressively getting worse. My original pulmonologist had a wait and see approach. I got a second opinion and immediately I was advised to get on the National Lung transplant list. I started with the testing in January…[Read more]

Thanks Charlene for the welcome to forum. It’s interesting to read about people’s experiences with PF and learn we are not alone in this disease.  Many good ideas to think and enact on. Stay safe and well. Dave

<p style=”text-align: left;”>Hi Steve thanks for the heads up on Omeprazole. I’m already taking Lansoprazole DR capsules 30 mg for GERD.  I think it’s similar to the Omeprazole you mentioned. I may inquire with the doctor about changing. Thanks for your help and stay safe. Dave</p>

Thanks Steve, my secondary diagnosis was Pulmonary Hypertension so it appears I already have it. It was discovered when I had a heart catheterization in July.  The heart catheterization showed no blockage and that is why I followed up with Pulmonary Fibrosis/hypertension doctor. I had been sob since 2018, and CT scan of mild Fibrosis in lungs. My…[Read more]

Hi Steve thanks for the heads up on the NAC supplement. Currently I am taking 600 mg 2 hours after breakfast and 600 mg 2 hours after dinner. I will taper it to 600 mg a day after 2 weeks. What does PAH mean? Thanks for the rest of the tips to ask doctor. I have an interview with Philadelphia Temple University lung transplant center in November. I…[Read more]

Hi Steve: thanks for taking the time to respond to my inquiry about NAC. I have now started taking it 2 times a day. Hopefully this will help me also. I have been reading the PF forum since being diagnosed with Pulmonary Fibrosis. Is there any tips on questions I should ask when I meet with PF doctor next month? I’m thinking asking for a biopsy…[Read more]

hi Charlene: I’m new on here and was recently diagnosed with pulmonary fibrosis with secondary diagnosis of pulmonary hypertension. I’m inquiring if anyone has tried NAC supplement. (N-Acetyl L-Cysteine) to slow the progression of PF? Since diagnosis, I have changed my diet, lost 10 pounds and am waiting for appointment to meet with Pulmonary…[Read more]