Living with Pulmonary Fibrosis

My husband Bill is in the late stages of pulmonary fibrosis, a lung disease with no known cure. This is our story of our journey through the disease and how it has affected one family's life.

Thursday, June 28, 2012

For Julie in response to your comment

Julie, thanks for your comment. I am so sorry to hear about your father. Bill died at home peacefully in his sleep. He was never hospitalized for his pulmonary fibrosis. He was diagnosed six years before his death, but looking back, he had symptoms at least a couple years before that. His general practitioner didn't take him seriously when he said he had a lung problem until he was adamant that he wanted a chest xray. For years his illness was managed with medication. It sounds as if that may not be an option for your father.

Depending on where you live and how the medical community works, your dad may be able to come home with hospice care. He will require someone to be with him constantly, however, once hypoxia sets in. The lack of oxygen to the brain creates hallucinations, and that, in some people, creates fear as well as confusion.

My prayers are with you and your family.

Wednesday, April 20, 2011

Thanks to those of you who continue to follow this blog and who have found the information helpful as you confront your family's issues. One thing I learned through the process is that you must be your own advocate. Study, research, learn and stand up for your spouse/parent/sibling/yourself as you deal with the myriad of doctors and other professionals who are now part of your life. To them, you are the same as the person they saw 10 minutes before and the one they will see in an hour. Ask questions; push for answers and if you don't feel you are being heard, say so. Your loved one deserves the best care possible during this difficult time.

If I can encourage or help in any way, please feel free to contact me.

Saturday, August 08, 2009

It will soon be three years since Bill's passing. I am doing well and have added yet another job to my activities. Now, depending on the time of year and day of the week, you might find me planning or managing an event, doing web site maintenance and business research for a state agency, or preparing taxes.

I have had the opportunity to travel, which Bill and I did until he became too ill. Last year my oldest granddaughter and I went to Alaska and the Yukon for two weeks. My youngest son and family just moved to Scotland, so #2 granddaughter and I will take a special trip there in a couple of years.

Our family also increased with the birth last December of my third granddaughter. Unfortunately, she won't have the opportunity to know her grandpa or how much he would have loved her. Overall, God has richly blessed us.


Friday, August 24, 2007

Thanks to all who have contacted me about the posts in this blog. Hopefully, others can be helped by our journey. I am doing well and adjusting to living alone with just the cat. One of the hardest things is making decisions since they affect no one but me. When another person is involved, there is often a stronger leaning in one direction. When it is just me, it sometimes doesn't really matter what I do.

I invited a college student to spend the summer here and that was a good arrangement. His family lives in a small farming community about 2 hours away. He goes to college in another state. He secured a summer internship at our art musuem and needed a place to stay.

For the funeral we made a video of photos through the years. Then, out of the kindness of his heart and without our knowledge, the videographer came to the funeral and filmed it. He provided copies of the entire service for me and each of my children. I watch it from time to time and remember the immense kindness of so many people.


Friday, January 05, 2007

Pulmonary fibrosis has taken yet another family member. Bill's much younger brother passed away on December 31, 2006 from a combination of pulmonary fibrosis, diabetes, and congestive heart failure.


Sunday, October 29, 2006

It is now almost 2 months since Bill's passing and nothing has been settled as far as his Social Security or military payments, including a monthly survivor benefit annuity payment that I am supposed to be receiving. Initially, Social Security was quick and easy to deal with, but someone somewhere in their regional office seems to delight in making life miserable for the newly bereaved. First, they sent a letter stating the benefits that they will pay. That was great. Then they sent a letter saying that they were canceling all payments because I had moved and not notified them. I have lived at the same address for over 30 years! Now, they say that they will reinstate payments, but they will not pay for the month in which Bill died. So, I have filed a second appeal.

In the meantime, the military does nothing. They finally sent several forms a month after Bill's death and our last name was spelled wrong, so I had to send them back. It is now over 3 weeks later and I have heard nothing.

I finally contacted my senator and his office is investigating. Perhaps someone will listen to them. We thought we had everything planned and were well prepared, but it seems that every public agency out there is a mess. It concerns me that those who experience a sudden death and are reeling under the shock are also being treated in such a cavilier manner.

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Thursday, September 28, 2006

Working my way through the myriad of agencies that need to be contacted has been a challenge and at times frustrating, and we were pretty organized. I knew everything about our financial affairs, retirement benefits, etc. and the things I am learning still amaze me.

Social Security was a breeze to deal with. The military is another matter. Though they have a casualty office, it is unstaffed, so I have had to try to find out just which agencies to contact and hope that I have found them all. The other company from which Bill drew a pension has been slow, but they seem to be efficient. However, they told me they were cancelling my insurance as of the end of the month when I found out today they actually are supposed to pay the cost of COBRA benefits for 6 months while I transition to another company, in this case Tricare through the military.

A word of caution to anyone in a similar situation - keep good records and don't be afraid to call anyone and everyone and ask what you need to know. One person told me yesterday that Visa and Mastercard sometimes carry insurance on card holders. Mine doesn't but I checked. Some mortgage companies also carry mortgage insurance, which will pay off the balance on a home. I am learning enough to write a book!

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