[Dave]

Devastating – Unpredictable – Misunderstood – Terminal

 

[Dave]

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 2022, was approved and placed on the list on February 22, 2022. On March 1, 2022 received the call that a lung was available. The Thoracic surgeon following the single left lung transplant said that the lung removed was stiff and had progressed much faster than what was anticipated. I am 70 years old and had the single left lung transplant at the Temple Lung Transplant Center in Philadelphia Pa because they do transplants in older indiduals. I was also on OFEV, started 3 months prior to transplant with few side effects. I am so glad I opted to receive a single left lung transplant. I am 1 month post transplant today and need no oxygen, can do steps, and so far anti rejection meds are on track. I would do it again in a heartbeat. Just my experience! God is Good!

[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>

[Dave]

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 local Pulmonologist “watched” my PFT and CT scans for several years. My symptoms became much worse since receiving the Covid vaccine at end of March. Am now on oxygen at night and portable oxygen prn when active. No problem with sob when resting. Have been eating lung healthy foods, lost 10 pounds so far (goal is 30 pounds); got rid of all the feather pillows and duvet s in the house as I read that “feather duvet lungs” can also contribute to pulmonary fibrosis. Since doing these small changes, have noticed some improvement in my breathing. Hopefully the addition of the NAC will help also. Thanks for letting me vent and keep well and safe. Dave

[Dave]

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 was looking on this website for highly rated Pulmonary Fibrosis doctors and transplant centers in my area, but could not find the list. My area code is 17201. Any suggestions on where to find them on this website would be helpful. Thanks Steve for your help. Grateful Dave

 

[Dave]

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 Fibrosis doctor  at Hershey Medical Center to discuss treatment options and possibly clinical trials. That appointment is in 6 weeks. I have a friend that has been taking NAC for PF  and just wanted to see if anyone had good/bad experience with this supplement. Thanks for any input anyone may have. Dave W

[Dave]

Hi Kris: I didn’t have a cough prior to lung transplant so am unable to respond to your question about cough. My symptoms were extreme sob, fatigue and unable to walk any distance without oxygen.  I was on ofev for 3 months prior to transplant. The transplant surgeon told my wife following the surgery that my lung was stiff and the disease had progressed faster than what they had anticipated. Prior to the transplant, I was advised and opted to accept an “at risk” lung as the chance of getting a lung was greater.  I was only on the National Lung Transplant List for one week before getting the call. I feel God’s perfect timing, the donor’s gift, and the willingness to take an “at risk” lung were key to the short wait time. Keep the faith and wish you the best in your decision. Dave

[Dave]

Hi Kris: I was diagnosed with IPF in August 2021. I’m 70 years old and was fortunate to have a left single lung transplant on March 1 2022. I was hospitalized for 10 days and left the hospital with no oxygen supplement needed and was fortunate to have no complications. My right lung still has IPF and my doctor explained that it will eventually be useless. The good news is that I can be  fully functional with one good lung. The anti rejection meds are manageable and I would opt to have the single lung transplant again in a heartbeat. I am so fortunate to have had an excellent medical team and a great support system. In my opinion, the single lung transplant was my only option. I wish you the best in whatever choice you make. Dave

[Dave]

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.

[Dave]

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 month post transplant and just finished walking around the block with no problems. I will start Pulmonary Rehab once the rest of my Staples are removed.  I am, so far, doing very well. I pray it continues.

[Dave]

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

[Dave]

 

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 to confirm this diagnosis. Any suggestions you could help would be great. Thank you for your time and stay safe and well. Dave