[Terrance Krouth]

Hi blucoyo and Happy Thanksgiving to you.

I 6 months post transplant and have been fighting coughing both before and after transplant. Coughing can be caused by many different things and diagnosing and treating a cough is hard work.

Pre=transplant I developed a bad cough and my PCP prescribed Albuterol, then later we added Flovent inhaler which is fluticasone for your lungs. That helped a little, but still left me with a lot of coughing. After that I had a regular appointment with my pulmonologist and he said we have to stop this cough and we started a very aggressive treatment. He added 50mg/day of prednisone for a month then tapered off over 6 months. He also prescribed Pulmacourt nebulizer. after about 4 months of treatment, the cough slowly improved and later stopped altogether.

<font face=”inherit”>Post transplant the cough came back. This time the high dose prednisone was not an option due to the other meds I’m taking. We added benzonatate 3X per day, Flovent, albuterol nebulizer and later lidocaine nebulizer. This all helped, but I still was coughing quite a bit. My next stop was to visit an ENT that specialized in cough treatment. When I went for the appointment, beside the doctor, there were 2 speech </font>pathologists present. The doctor inserted a scope through may nose and we did swallowing tests and various speech and sound tests.

The results were that the whole area is irritated with lots of inflammation, likely from being intubated and multiple bronchoscopies. They also found some thick areas on my vocal chords. They also told me I am not breathing enough when I speak, the pressure gets too low in my lungs and that causes a cough reflex. I will be doing some speech therapy in the coming months to learn proper breathing techniques. The doctor expects the inflammation to come down over time.

<font face=”inherit”>Besides all that, my lungs still </font>don’t<font face=”inherit”> like it when I take a deep breath or breathe hard which also causes coughing. Coughing problems can be very complex and are often multi factorial. I hope sharing my experience helps some. I hope you have a great Holiday weekend. </font>

Terry

[Terrance Krouth]

Yes

[Terrance Krouth]

Hi Jofac,

 

I took pirfenidone for 3 years.  The side effects were not kind to me.  I am a bike rider and a golfer, so the sun sensitivity was an issue for me.  I covered up a lot and used a lot of sunscreen and was able to manage that.

The problem I had with pirfenidone is headaches.  I felt like I had a perma-hangover.  One day I just said, I’m not doing this anymore.  Interesting side note, my sister was also taking pirfenidone and without even talking with each other about, she stopped too.

I did not take anything for my IPF over 2 years, but the progression returned last year.  I started Ofev in July.  I am having the well known problems with the bowels.  A nurse at Optum call me every few weeks to see how I am doing.  We have worked on different approaches over the last several months and we have made a lot of progress on the tummy problems.

I will stay on Ofev.  I think it is easier for me to take than pirfenidone.  In my experience, people have totally different experience with these drugs.  Sadly, this disease runs in my family, so I have seen how three people besides me have reacted to the drugs.

You are wise to try pirfenidone.  You just may be able to tolerate it.  Be very careful with the sun.  This is a big deal.  Don’t forget SPF lip balm if you are in the sun.

 

Best wishes for your successful treatment.