“This is the first blog post in the Caregiver Series which discusses diagnosis.”
There are certain things that become part of your memory when hearing a diagnosis from a medical doctor. Mine happened on Veterans Day in 2018 over the phone telling me that I had a rare form of cancer. I will always remember that it literally took my breath away.
After having an operation to remove the affected organ, I was blessed to not have chemotherapy or radiation. After 3 1/2 years of checks, I am truly blessed to be on the side of no reoccurrence. Fast forward to a moment in time when I became a caregiver.
During 2021, we were in the midst of re-planning a venue wedding for our daughter that had to be moved from 2020 due to the entrance of COVID. About 4 months before the venue wedding, my husband just started having random health issues. He was having pain in his legs and lower back. He was also having pain in his shoulder and a continuous dry cough (wasn’t COVID) that he had for the last 40 years.
The main issue of leg and back pain was targeted as he would be walking our daughter down the aisle. He was diagnosed with degenerative disc disease that was treated with physical therapy. He was able to walk our daughter down the aisle. While he was going to physical therapy, the pain in his shoulder and the cough continued.
I talked him into changing doctors from the ones that he had for years. He went to the new doctor and they ordered an X-Ray which showed a shadow on his lungs. The X-Ray turned into a CT Scan which showed decalcification in his rotator cuff and fluid/scarring in his lungs. From here, we concentrated on the lungs and transferring to a pulmonologist.
Unfortunately, the visit to the pulmonologist was two months away due to the numerous number of cases of post COVID patients. In the meantime, we had a 40th anniversary trip planned to the Northeast. We took off on our trip and the leg and back pain worked itself out with the previous physical therapy.
After we got back from the trip in October, it was time for the pulmonologist’s visit. While sitting in the doctor’s office while he reviewed the previous CT Scan, the doctor disclosed that there was no fluid on the lungs however there was significant scarring in the lungs which was the result of the dry cough. After numerous questions about environmental factors and medical history, it was determined that it was genetic.
His diagnosis was Idiopathic Pulmonary Fibrosis (IPF) which is scarring in the lungs which causes difficulty breathing. Eventually patients go on oxygen and medication to slow it down however there is no cure. I remember that the room became so quiet that you could hear a pin 📌 drop. With that, the roles just reversed and I became the caregiver.
So sorry you have to go through this! As someone who is preparing through something similar, I am looking forward to this series
P.S. I am glad your husband got to walk your daughter down the aisle. .
Thank you! I am hoping the series will help others. I am sorry you are having to go through something similar. Thank you for the comment!!
Wow! I have never given such a diagnosis over the phone. Not only as a physician, but as a human being, you should know the type of diagnosis that are a better fit for an over the phone call and what is not. Thanks for sharing that experience with us and I hope you both the best.
I agree. Thanks for the comment and the well wishes!!