4 things you’ll want to know about a pulmonary fibrosis diagnosis
The first challenge I confronted after diagnosis may surprise you
Today is traditionally a day for trick-or-treating, haunted houses, pumpkin patches, hay rides, and of course, pumpkin “chunkin’”. I have always enjoyed Halloween, the scariest day of the year for many.
I mentioned last week that my wife, Susan, and I host a Halloween costume party each year. Costumed partygoers and scary movies set the stage for the year’s scariest night. But the scariest day ever for Susan and me was quite different: It was Jan. 31, 2017, the day I was diagnosed with idiopathic pulmonary fibrosis (IPF).
While doctors had speculated in late 2016 that the cause of my symptoms might be pulmonary fibrosis (PF), they weren’t certain until months later.
The day I learned of my diagnosis wasn’t just another day. I experienced every negative emotion at once. I was angry and in shock and I wanted to scream at the universe. But all of that would have to wait.
I wish I knew at the time that I wasn’t the only person affected by my diagnosis. Before I could be cared for, I first had to be a caregiver. Let me explain: I needed to care for those around me who felt the blow of my diagnosis. A diagnosis isn’t a trivial matter, and all of those around me were collateral damage.
When diagnosed with a chronic, progressive disease for which there is no cure, it can be a challenge to convince others that everything will be OK. That is exactly what I needed to do for those around me.
In the days immediately following my diagnosis, Susan would burst into tears when I entered the room. My children, all adults, asked questions. My brothers were concerned. My mother wanted me to take one of her lungs.
My patient response
One of the first steps I took was to ask those around me to stop scouring the internet for information about IPF. I wanted to direct them to reputable sources, which meant I had to identify them myself. That is how I found resources like the Pulmonary Fibrosis Foundation and the late Kim Fredrickson’s writing, which ultimately led me to Pulmonary Fibrosis News.
The second thing I had to ask them to stop searching for was a cure for IPF. It didn’t exist, and claims to the contrary were false. Claims that fibrosis can be reversed using [insert treatment name] have not been proven to exist. The claims I have seen include herbal supplements and stem cell treatments. Neither are known to be effective, and some may not be safe.
The third thing I had to address was life expectancy. I asked that those around me not focus on the life expectancy provided by my care team but rather on how those numbers can be improved. I wanted their help to do everything within my power to improve those numbers.
Finally, I asked for their support of my decisions on this journey. I wanted them to take an active role in the village Susan would form.
The single greatest decision at the beginning of my journey was whether I would want to undergo a transplant. Spoiler alert: I did receive a bilateral lung transplant on July 10, 2021.
To be clear, addressing these four things did not complete my work. I needed to continue to care for those who care for me. But these four things did allow all of us to move forward together. It also established an open, honest dialogue, which we leverage to this day.
It would have helped me sharpen my approach earlier if I had known some of this information in advance of my diagnosis. If you are a patient with a history of familial PF, there is a chance you might find this column before your diagnosis. If you find this column after being diagnosed, it may be helpful early in your journey. By each of us on this journey committing to help each other, we can make every breath count.
What do you wish you had known when you were diagnosed? Please share in the comments below.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Michelle Michels
Thank you so much for your post, my dad was diagnosed July 2020, at age 88! He currently is in a nursing home on hospice, my mom died a month ago from cancer, and she had been caring for him at home, such a horrible disease, I wish there was a cure, maybe someday? I hope you are doing much better after your transplant. So hard to see your loved one struggle for every breath🥲michelle
Samuel Kirton
Hi Michelle,
Thanks for reading my column and for your comment. This disease is horrible in any form. There is so much research seeking a cure or even a more effective therapy. Having just lost your Mom and now to watch your Dad dealing with PF on hospice must be incredibly stressful and draining emotionally. Prayers for peace, light, and strength for you Michelle.
Sam ...
Gladys
When I was first diagnosed it was a whirlwind of un knowns and a disease I never ever heard about. I thought I was in clear after having had my fight against covid. But a year later I was diagnosed with Pulmonary Fibrosis. I believe patients being newly diagnosed should get some type of brochure or literature that would be helpful from the Pulmonary Doctor before the patient leaves. For it also to maybe provide some type of support number. It was overwhelming at first which everybody was experienced it first hand. And the internet doesn't offer much hope either.
Jesse Watt
I totally agree, Gladys. When my PF was picked up by a radiologist from a routine chest x-ray, my General Practitioner (Dr) referred me to a lung specialist. I had to wait 6 months for an appointment to see him. During that time, I would have appreciated much needed psychological support, especially after searching Dr Google! (My partner's support has been wonderful even though we both felt we were in the wilderness with this disease).
When i finally had my first appointment with the lung specialist, he explained about the disease and gave me pamphlets on the only two medications I could take (diagnosed officially as IPF after HRTC scan). I left his office with a Rx in my hand. There was no suggestion or info offered for further support. I had to research and find support on my own. This is certainly not good enough. Sending hope and best wishes to all.
Samuel Kirton
Hi Gladys,
Thanks for reading my column and for your comments. I do find it interesting that many doctors do not recognize pulmonary fibrosis. I try to remind people every chance I get that finding a reputable source of information on the internet takes work. I may be biased but I have found the science columns and the patient voice columns such as mine here at Pulmonary Fibrosis News offer reliable information. Additionally the resources of the Pulmonary Fibrosis Foundation offer reliable patient/caregiver information.
Sam ...
Daphne Webb
I have Bisinosis from inhaling cotton fibers. I have been monitored for 2 years by a Professor in Brisbane Queensland Australia. He said it is now time for intervention so has prescribed Nintedanib....Often...2 tablets daily My concern is the diet that goes with that medication please. I haven't started medication yet as it is still being approved. Samuel, if you could pass on any info you may know that might help me on this journey I would appreciate access to your experiences. Thank you, Kind Regards Daphne Webb .
Samuel Kirton
Hi Daphne,
Thanks for reading my column and for sharing your journey. I would recommend you review the information from Boehringer Ingelheim on taking ofev. Additionally, I would suggest you join the Forums here on Pulmonary Fibrosis News where you can ask other patients and caregivers for their experience with Ofev. You can search the forums for the word Ofev.
Sam ...
Carol Lee Boyd
I was hoping to get some good information here but was referred to Twitter or Linked In, neither of which I have access to. I need all the help I can get since my doctor is not coming through with much information.
Samuel Kirton
Hi Carol,
Thanks for reading my column and your comments. Can I suggest two good sources of information for you. The science columns and the patient voice columns such as mine here at Pulmonary Fibrosis News offer reliable information. Additionally the resources of the Pulmonary Fibrosis Foundation offer reliable patient/caregiver information.
Sam ...
Kathleen Sprinkle
I was diagnosed on August 16th of this year with Progressive Pulmonary Fibrosis. I get up every morning between 3 and 4 am and struggle to breathe. I have other health problems and I am 66 years old and not a good candidate for a lung transplant. I am using a few different meds in my nebulizer but it is not helping. My health care providers told me if the meds did not help my life expectancy was 12 to 18 months. I refuse to believe that. I pray every day for God to take it away. I need all the prayers I can get. I seem to be getting worst. I need to just vent. I don't have any answers. I am thankful you got your lung implants and hope you are doing well.
Samuel Kirton
Hi Kathleen,
Thanks for reading my column and for sharing a bit about your journey. Refusing to believe the projections of life expectancy reveals a positive attitude and that you are doing everything you can do. I will hold you up in prayer as you continue your journey. Please come back and let me know how you are doing.
Sam ...
Charlene Beck
i dont know if this will post as my sign in never works and have called for help......
I was diagnosed in 2020 and it was about a year later i got on Ofev. I seem to be doing well - I walk 4 miles per day uphilll and have for many many years. I also do breathing exercises when i remember!! I have lost weight w Ofev and didnt need to. I feel frustrated taht people often say to me " you dont look like u have anything wrong w you?" these are the few i have shared w my diagnosis.---- I agree that there are no brochures w initial diagnosis and no support grp suggested. . it is just a vague diagnosis and turned loose. I felt lost and very sad. My family doesnt even ask about me and are not really close or supportive.
does anyone know if i should assign a guardian or POA in future when i could get sick? i am NOT going to do transplant at this time--- I dont know how i could- have no caregiver, have no family willing to help, any ideas??
sorry to ramble. i would like to even speak to someone on zoom or phone if possible. thanks Chyna Beck
Samuel Kirton
Hi Charlene,
Thanks for reading my column and your note.Can I suggest the educational material offered by the Pulmonary Fibrosis Foundation. The material is free and expertly sourced.Hav you considered a virtual support group which most use their cameras during the meeting.
Sam ...
Randall Thornton
Hello Sam, It's me again. How do you find out you have it? The year 2020 was rather interesting for me. It was Jan. or Feb and I had bought tickets to fly to Calif for my dad's funeral. A couple of days before leaving, I was feeling very tiered, sweaty and caughing up a storm. My wife said I couldn't go that way. So, she took me to emergency to have me checked out Well, they jabbed one of those stickes up my nose and said I had Covid. Then they put me a coma. Why,I don't know. When they brought me out a week or so later, They took the machine out to quickly and I died. They put it back in and revived me. After being there for a month, they said I was ready for rehab.What a joke. I was sent to a "rehab" facility. It was a poor excuse for a place and the rehab person was the cook who had me seat up and that was it. They finally decided they couldn't do anything for me. So they sent me to a hospital I had been to before with a heart attach. I was in the obersavtion floor and this Oriental doctor came by and she said, I know what's the mater with you and see you tomorrow in surgery. They had my wife come up and say hi and maybe goodbye. She found my right lung was pretty much gone, so she took it out. I died during that also. Can't take anethesia anymore.
After laying there and the previous places, I had been on my back for almost 4 months.I had lost 50# and couldn't walk or get up. Part of my lung was sent to Rochester for exam and the surgeon keep some for herself to examine.One of the doctors came in after a week and told me I had IPF. All I could say was what is that? When he told me, again, what is that? He then gave me the whole story on IPF and how I may have gotten it and my life exspectency. I couldn't believe it when he said chemicals. I had never worked around chemicals. Then I got to thinking, in 77 I worked for Owens Corning Fiberglass.When I asked how could it stay in my system this long, he said it does.
So,that is how I found out I have IPF.
They had a really good rehab team and with their help, got to walking again., Came home to find a ramp had been built in case I couldn't get up the stairs and had to use a wheelchair. That's my story and I'm sticking to it.
Samuel Kirton
Hi Randy,
As always, thanks for reading my column and your comments. That is quite the journey to a diagnosis.
Sam ...