The story of Joseph
I was diagnosed with IPF in September 2015. I was a swimmer all my life and known for being able to hold my breath underwater for minutes at a time. I was a Red Cross Junior Life Saver by 8th grade and swam & dove on the swimming team in high school. I could ride a bike or cross country ski effortlessly for long distances. My lungs were always a strength of my physical being.
I’ve had my primary physician since 1976. I worked in biomedical electronics at the same hospital in which my doctor completed his residency. There’s not much he doesn’t know about me. He became my wife’s physician and our family physician.
Once I turned 50 years old, I started to go in annually for physicals and check-ups. There is a lot of heart disease on my father’s side of the family and most of my siblings were affected. I am currently 63 years old and the youngest of 6.
I enjoy singing in various choral and choir groups. My lungs have always served me well in that capacity.
Toward the end of summer in 2013, I caught a little “summer cold.” I began to cough here and there. I didn’t pay too much attention to it at first but it just seemed like it was not going away. When we resumed choir practice for the fall season at church, the cough became an annoyance not only to me but the choir members around me. It seemed to be getting worse and definitely interfered with my ability to sing.
My earliest medical record relative to IPF shows that I saw my doctor on October 23, 2013, for this cough. He prescribed a chest X-ray and was alarmed that my heart appeared slightly enlarged, possibly a slight case of congestive heart failure. My eldest brother has been diagnosed with this same heart disease and my doctor knew this as I always expressed my concerns to him about heart issues in my family. Along with the appearance of an enlarged heart, my blood pressure and pulse rate were both high for the first time in my life.
I was referred to a cardiologist in November, 2013. I went through a barrage of cardiology tests over the next year; EKG, echo-cardiogram, gamma scan, stress test, another echo-cardiogram. All the cardiology test results were normal finding only very slight leakage in one of my heart valves but nothing out of the ordinary for someone my age.
Meanwhile, the cough persisted and became increasingly annoying to me.
I was put on blood pressure medication for 90 days and returned to the doctor for a check-up. The medication did have a dry cough as a side effect so my doctor prescribed a different blood pressure medication. The cough persisted. I came back to the doctor 90 days later and found out that the 2nd blood pressure medication also was know to have a dry cough as a side effect in a very small percentage of users. So the prescribed a very expensive blood pressure medication for me that had absolutely no cough side effect. 90 days later, I came back to visit my doctor for a check-up and the cough persisted.
At his point, I thought that maybe I had walking pneumonia or bronchitis. My doctor prescribed a Z-pak of antibiotics but it did not have an affect on my cough which kept getting more frequent and causing me a lot of distress in doing everyday tasks.
Finally, after all else failed, my doctor sent me to a pulmonologist in September 2015. She recognized my condition immediately as pulmonary fibrosis. She prescribed a high resolution CT scan and pulmonary function tests to confirm that I had IPF.
A real tell-tale sign for me was last summer. We have a lake cottage close to home and we spend every weekend at the lake. The first time I dove into the lake in June, 2015, an alarming panic came over me that made me think I was suffocating. I frantically surfaced out of the water and freaked out.
Throughout the rest of the summer, I found myself gasping for air with any activity. In a lot of ways, I was happy to find out why this was happening. But it was also a rude awakening as to what lies before me.
In researching IPF, you come to find out that it goes misdiagnosed or undiagnosed 99% of the time. That was certainly the situation in my case. I am not bitter about this, It is what it is. I’ve been dealt a new hand in life and now I must simply play those cards. When something like this happens to you, all you can do is march, taking whatever next steps need to be taken.
Obviously, my family is overwhelmed. My wife, son & daughter-in-law, as well as my daughter, son-in-law and 8-month old granddaughter are very close. We have a very loving family. I have been undeservedly blessed with God’s graces for such a very long time. I have been giving thanks to God in prayer for these blessings for a vey long time. Where this new road leads I am not sure. But I am willing to just march along the way and do all the things I must do medically.
I feel like I am surrounded by outstanding medical personnel and doctors. I feel completely confident that they have my best interests in mind at every turn as I march though this.
The only cure for IPF is a lung transplant. Age plays a bit of role in potentially becoming a candidate for a transplant.
I was referred to a local lung transplant hospital, went through the interview process with them and, a few weeks later, found out that they would not consider me as a candidate at this time but would possibly re-evaluate my case in 6 moths. I came to find out that his facility was relatively new at performing lung transplants so their screening process for candidates was fairly strict so they could build up a high success rate.
The next nearest lung transplant hospital within the required 2-hour radius, is UWHealth in Madison, WI. I met and interviewed with a pulmonologist there in early January, 2016, and he immediately referred for to the lung transplant team at UWHealth. They have been performing lung transplants for over 20 years and have a long history of success. UWHealth is probably one of the leading lung transplant hospitals in the US.
I have a follow-up appointment with the pulmonologist at UWHealth scheduled soon to re-evaluate my condition. And I have an interview with a lung transplant surgeon scheduled for March 8, 2016.
So … I just keep on marching.