Ideopathic Pulmonary fibrosis

[Piperman]

I was diagnosed with IPF,a form of COPD, 2 years ago. I am ready to go back to MAYO at JAX b(a great place) for a yearly review next month. I feel great. Play tennis, singles and double 3 hrs a day, ride a bike for 20-30 miles at a 16MPH pace every day. Have even rode The horrible 100 Mile race 6 months ago. Question is: Should I go back?. There is no treatment available for this. Should I wait til I feel bad?. Or is this "head in the sand thinking. I am 67 years old, in good health otherwise.

A side issue is when I am riding with other riders at 26 mile per hour I can NOT get my pulse above 120, while the other guys are at 160?  My norml pulse is around 60.Could this low top rate be the result of using 80Mgs of Diovan for Blood pressure control, or the  20MG of Zocor for cholestherol. Would either of these lower my exertion heart rate? These are the only meds I use.

I have not spoken with anyone else about this. I have found other patients hard to find. Any thoughts would be appreciated.

[National Jewish]

With your amazing exercise capacity it is hard to imagine what the basis for the diagnosis of IPF might have been.  IPF is usually a progressive disease and the absence of shortness of breath with hard exercise should cast doubt about the diagnosis.  You might ask the Mayo physicians if your condition is found to be stable, if evaluations every two years might suffice.  You are right about there not being a good treatment.  Yours is not "head in the sand" thinking.

Diovan is not ordinarily associated with an abnormally slow pulse.  You might want to also ask the Mayo doctors if your heart rate is secondary to heart block.  Evaluation of this might involve an exercise test with cardiac monitoring.

Please read our interstitial lung disease information at http://www.nationaljewish.org/disease-info/diseases/rheum/ild/index.aspx to learn more.

[EROS]

Firstly IPF is not a form of COPD, IPF is a restrictive disease, COPD is obstructive.

I suggest you do attend your meeting as IPF is progressive and CAN be treated if not cured. There are new treatments that you can discuss with your doctors.

I also suggest you google IPF where you will find many support groups where you can discuss this further.

Regarding your pulse rate, I would consider your ability to cycle at 26mph and not have your pulse rate to hit 160 like your peers to be a positive thing. Maybe try to take it up to 36mph and see what happens, is your meter faulty?

You seem well but need to monitor your condition.

Stay well.

Eros.

[Piperman]

Thanks for your response. i will let you know what Mayo says near the end of June!