[Lynn Maxim]

Mary, I cannot thank you enough for your post.  I was diagnosed with IPF on May 10 of this year. It was and has been a shock to myself and my five living siblings.  My younger brother died of IPF 7 years ago after he developed a pulmonary embolism within days of receiving a lung transplant.  My brother was diagnosed at age 54 and died at age 62.  However, none of my siblings, nor myself, even considered that we would develop this dreaded disease.  One of the most difficult things I have ever had to do was to inform my surviving siblings, children and cousins, of my diagnosis.  It left me feeling guilty, although I know that makes no sense.

I turned 70 on July 1 and while I had looked forward to “aging up” on the Peloton side bar and beating my competitors, this disease took the wind out of my sails.  Right now, I am completely symptom free and like my brother, would never have known I had this had I not developed pneumonia in February.

I have always lived my life being grateful for every day.  Now that is even more meaningful.  Your post gave me hope.  As you said, none of us know how quickly we will progress so we need to stay positive and live each moment to the fullest.

 

 

[Lynn Maxim]

Hi David.  Thank you for your reply.  Your information was very helpful and I intend to use that information in the next few weeks when I tell friends and family about my diagnosis.

For anyone who is under the impression that at a certain age (like 70) you would no longer be able to obtain a lung transplant, I have heard otherwise.  My girlfriend has an 83 year old friend who had a lung transplant at Columbia Presbyterian 9 years ago at age 74!  He is still doing great.  We need to remined ourselves that hope runs eternal.

Carpe diem

 

[Lynn Maxim]

Hi Randy, thank you for replying to my post.  It certainly sounds like it was a tortuous process for you to get a diagnosis.  I can see how it will be necessary to plan all of our car trips in advance to provide elevation information, as well as areas where I will be able to obtain oxygen.  I am wondering if you have flown at all since your diagnosis, or has the degree of your IPF made that prohibitive?  My husband has also been diagnosed with an Interstitial Lung Disease and we are waiting for him to have a bronchoscopy, although his breathing problems seem to be much worse than mine right now. Between the two of us, we are a mess.  He was already told that whatever is going on with him, does not look at all like IPF.  It will likely be another few months before we have an answer about him as we are driving north to Rochester, New York to have his bronchoscopy done there.  We live most of the year in Naples, Florida.  All of our relatives live in upstate New York.

Keep me posted about your trip.  And good luck staying healthy.