[William E. Shotts]

Hello to all:

I was diagnosed with IPF in October of 2020. The diagnoses followed a brief hospitalization and lung biopsy. My pulmonologist at National Jewish in Denver Colorado recommended that I consider either of the two oral medications currently available. I chose OFEV, 150 mg twice a day. The side effects are significant but I have been able to deal with them. To date my PFT’s have been near normal and my regular CT scans showing no progression of the IPF.

When I ask my pulmonologist for a prognosis he simply said “there is no way to predict how rapidly your IPF may or may not progress. The best things you can do are: follow the recommendations of your medical professionals, eat healthy, stay hydrated, exercise, keep a positive attitude, and don’t dwell on predictions of 3 to 5 years from diagnosis as a prognosis. The data behind that estimate is outdated. Every case is different”. I have found that advice helpful in my journey with IPF.

I am a person of faith and believe God is in control. I am comforted by that and am at peace with His timing. God Bless every one of you! I pray for our IPF family daily.

[William E. Shotts]

I agree with the numerous comments urging caution when considering a lung biopsy. I received a diagnosis of IPF in October of 2020. My pulmonologist and I began the discussion of treatment. One of my concerns at that time was “are you sure of the diagnosis” to which my pulmonologist replied “the only way to be absolutely sure is to have a lung biopsy”. After discussions with family and my primary care physician I decided to have the biopsy using the VATS procedure. The procedure went well but I did have significant pain and discomfort. I did spend three days in the hospital recovering. Once the drain tube was removed and I was managing the pain I was released to go home for the rest of my recovery. I had no significant or lasting side effect from the procedure.

I don’t want anyone to get the idea that I am recommending the procedure. I am saying that having or not having the procedure should be a personal decision made following research, consolation with family, and in my case “prayer”. God bless any and all of you considering a biopsy.

[William E. Shotts]

Here are my answers concerning my Ofev experience:

1. I started Ofev about 6 months after my October 2020 diagnosis.

2. I was not told at that time about the severely of my IPF. I had a surgical biopsy soon after and learned I did indeed have IPF showing mild to moderate progression.

3. Choosing Ofev was my decision as the Doc indicated either would be indicated for my situation. I chose Ofev because of the twice daily dosage.

4. I have been taking Ofev for 21 months.

5. I have several of the side effect of Ofev. Diarrhea is the most challenging. I also experience stomach pain, stomach cramps, and nausea.

6. My diagnosis after exhaustive testing has been determined to be IPF.

The following is my unsolicited and unsupported opinion as to a possible cause of my IPF:

I am a U.S. Navy Vietnam veterinary with VA verified agent orange exposure. I feel strongly that there is a connection between my exposure and my IPF. Unfortunately the VA has denied the claims I have filed with my assertions.

Bill

[William E. Shotts]

I’m interested. Forward details and time.

[William E. Shotts]

To you my fellow travelers on this uncertain and scary journey we call IPF I say thank you for your stories, they help me to deal with the issues I face.  I am a 73 year old who was diagnosed with IPF in October 2020.  Until then I was very active in my business as well as numerous outside activities.  I live in Colorado at an elevation of 7700′.  I have climbed and hiked numerous mountains over the past several years including some over 14,000′.  I also enjoyed running 5k/10k races as well as playing golf several times a week. Also, I am the main caregiver for my spouse who has late stage Parkinson’s. I am also a Vietnam veteran with documented agent orange exposure.

You can imagine my shock at being told I had IPF after suffering shortness of breath that put me in the hospital for tests.  The physicians at National Jewish in Denver have been great in getting me started on treatment with OFEV. Dealing with the side effects of the medication, while manageable, are challenging.

I am not bitter about my situation however I will admit to asking “why me” regularly. During those times I remind myself that there are those of you that have a much more difficult situation than I.  Many of you like me planned for a comfortable retirement with travel and relaxation.  That has not been the reality for me.  I am reminded by my close personal friends that God has a plan in all things.  I believe that but at the same time I question what could that plan possibly be?

Please keep the posts coming with your personal insights on how you deal with our common situation.  They are of great benefit to me.  I will keep all of you in my prayers and ask that you remember me as well.

God Bless!

[William E. Shotts]

I am very interested in Jerry’s post. I am also a veteran. I receive some care through the VA. However, for my IPF I receive care from National Jewish in Denver Colorado. My VA physicians were not as callous as Jerry’s but they were very supportive in my seeking care elsewhere.  Since I am VA documented agent orange exposed I have pressed the VA for a link between agent orange and IPF. My physicians have been very vague in their answers to my questions. They all seem to say the same thing “there is no definitive link between IPF and agent orange“. I commend Jerry on taking control of his treatment. While we all realize there is no current cure for this insidious disease there is always hope, prayer, and faith in God.

God bless you Jerry in your journey.