[James Burns]

I had double lung transplant at Duke in April of 2022 and it was fabulous. They continue to follow up and the doctors and staff are great. I can do virtually anything now without oxygen and feel great. The meds are numerous but do not present many side effects so far. Ofev was much more difficult, on that for 4 or so years before I progressed to a condition which qualified for transplant.

Jim

[James Burns]

Thank you all for commenting with suggestions and confirming that it is normal with IPF.  I was diagnosed in 2018 and it has now progressed to the point of full evaluation at Duke in early December to prepare for lung transplant sometime next year.

I find coughing spells every morning are part of my daily life, but not at night.  I am sleeping with oxygen and rarely get a spell at night.  I also induce fits of cough after dropping below 85 on O2, just doing mild things around the house, and then when I recover to around 88-89 I begin a coughing spell.  I also cough if I talk or laugh too much. I tried Tessalon Perles and EGCG, but saw no difference so I quit using them.  I take enough stuff, Ofev included, and figured less is better if I see no change.

I am at 91-92 at rest with no oxygen, but the doctor at Duke said keep staying active because most people with as much damage in their lungs as mine are on O2 at all times.  I am playing golf 3 x a week and bring O2 with me to gas up when I have to climb hills or if I am dropping in O2.  I have a concentrator with tank fill option and can refill my tanks which I put in a backpack and can use 4-5 ml (or more) full O2.  I can walk the dogs with a backpack and O2 and still keep my oxygen above 88.  The little portable units that generate 2 ml pulse don’t give enough oxygen to move actively and stay above 88 for me.  I highly recommend the tank option if you are in a similar predicament. It has been very helpful because I can bring a tank to the gym and get on an elliptical/treadmill and use 6 ml for a half an hour and keep my O2 at 88-90 while exercising.

The transplant process is scary, but I trust the team at Duke and look forward to getting closer to normal in activity.  I get out of breath doing very little activity, swinging a golf club, fixing divots, climbing 1 flight of stairs (very slowly now), etc.  I used to play tennis, run, hike, yardwork etc and that stuff is out for now. I could do without returning to yardwork but my wife probably has another opinion.

Thanks again for your suggestions.

Jim

 

[James Burns]

@marianne

I too was originally diagnosed with GERD because of cough.  When the endoscopy showed only mild signs of irritation they did a chest Xray and and voila, you need to see a pulmonologist and do some further testing.  That was the beginning of the answer which turned out to be IPF (no real answer after all).  I was never a smoker and never worked in harsh conditions etc.  My cough is very productive in the mornings or when I get low on O2 due to exertion without enough O2.  However even when it is productive it takes a lot of effort as in I cough extensively and and many of the coughs do nothing.  I am going to try the Airphysio product mentioned earlier and available on Amazon and see how it goes.

I get up so much mucous each morning it’s ridiculous but if something helps do this more effectively I am all for it.  I was prescribed Symbicort by one doctor but my pulmonary therapist suggested that with IPF being a restrictive disorder and Symbicort is designed for obstructive disorder, she thought I should ask another doctor’s opinion and we decided it was not worth0 the side effects and would not be likely to be beneficial.

I also get coughing spells after talking or laughing.  It is very uncomfortable because you just start coughing and can’t stop even though it is not really productive in most of these cases, plus you are around other people or on the phone.  I will certainly try cough drops as a solution as well.

Thanks for all the comments and suggestions,

Jim

[James Burns]

I think it is Green Tea Extract that can be purchased as capsules.  I think that is what Steve was saying helps his cough, although it claims to be helpful for other issues.  I have not seen it listed as helpful for coughs, but it seems to be relatively safe since it is green tea extract and clearly green tea is universally thought to be beneficial.  I will certainly give it a try because Benzanotate (Tessalon Perles) does not seem to be helping me at all and it clearly has side affects associated with it.

Thanks,

Jim

[James Burns]

Thanks for all the replies.  I guess I am not alone with the morning issues.  I am on benzanotate (Tessalon perles)  but they do not seem to be effective. I will certainly try cough drops as suggested and I guess it is just part of the condition and not indicative of further damage. It is annoying, uncomfortable, and embarrassing in COVID situation. When people see me coughing I am sure they are scared I am contagious. I think I am fortunate I am still able to do many things without oxygen at this point.

Thanks,

Jim