Research and Development
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Research Study: How IPF Affects Quality of Life
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Research Study: How IPF Affects Quality of Life
Hi Everyone!
Has anyone read this study, which was published in 2005? I have been thinking a lot about how PF can affect not only a patient’s quality of life, but that of their family as well. I was particularly interested in what factors were considered when determining impact on quality of life and did a quick literature review/search on whether this was captured from a patient’s perspective anywhere. That is how I came across this article and I found it really interesting. Here is the link: https://hqlo.biomedcentral.com/articles/10.1186/1477-7525-3-61
In quick summary, patients identified 12 factors that the disease affects in their lives, which were:
1. IPF Symptoms
2. IPF Therapy
3. Sleep
4. Exhaustion
5. Forethought
6. Employment and Finances
7. Dependence
8. Family
9. Sexual Relations
10. Social Participation
11. Mental and Spiritual Well-Being
12. MortalityCould you add any others to this list?
Also, I found this statement particularly resonated with me: “Living with IPF also made patients reflect on their lives and their emotional selves. They were forced to think about things that they didn’t necessarily want to think about (e.g., their own mortality and the effects that would have on loved ones left behind)”
What types of things do you feel like this disease has forced you to think about, that you might not have otherwise if you weren’t diagnosed with IPF/PF? Please share.
Charlene.
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10 Replies
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I would add end of life quality issues such as: the morality of the current ways we administer pain management; what does it mean to be human and why do we view death as a bad or as an unfortunate event… and other similar moral questions.
gil
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Those are really good things to add and consider as well Gil! This is something that has been really hard for me to deal with: facing mortality as a young adult. I really wanted to be able to celebrate the milestone things, like significant birthdays (I did just reach 30 this past December, but also 40, 50, etc) as well as weddings, etc. Initially I was really sad to think that I might not reach them, but I have re-framed my thoughts into hope that I will reach them, and also just try to appreciate each day with as much gratitude as I can.
Quality of Life is such a big consideration for patients with PF/IPF, I completely agree!
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Charlene,
I cannot imagine how difficult that would be, facing mortality/IPF at such a young age, I understand wanting to be there for those milestones, I have some of my own and I’m 70.
You have given me much to think about, in a very real way you have given me more courage and added to my quality of life. I ran across your blog when I was feeling down and when I noticed your age and as I read your past blogs I felt more and more grateful and my negative feelings diminished. I don’t think I will ever feel so depressed about my IPF as I did then. Thanks.
gil
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Gil,
Thank you so much for sharing this with me. I am going to save and print it, then add it to my ‘gratitude box’ which I keep in my room. I fill it with cards, mementos, pictures and words from others that are really special to me and I sometimes pull it out when I am struggling or having a really bad day, week, month, etc. In considering the post above about facing mortality, I also am adding things to this box that will be special for my family to know and remember about me. So, something like this where you have gifted me with the knowledge that my columns helped you, is not only something I cherish and want to remember, but I want my family to know this too. Someday, when I’m gone, I think this will be comforting for them to have it. Thank you for giving me something else to ad!Tell me about some of the milestones you have in mind and/or that are coming up for you? 🙂 I look forward to hearing them! Having milestones that we want to reach is something that has enabled me to hold out for hope.
Charlene.
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Charlene,
You are welcome, as for milestones:
1. Ask for forgiveness; I don’t expect anything in return, I am doing this for me and how others respond isn’t crucial
2. I would love to see my grandson graduate, he is 13 and needs four more years.
3. Find a place to live which is more allergy friendly, it can’t be too hot or too cold or with high humidity
4. Get rid of everything I haven’t used in more than 6 months
5. Be at the Death Valley dunes before sunrise
6. Visit the Vietnam Memorial in Washington DC
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Gil, that list gave me goosebumps…. such great ideas!
I love the asking for forgiveness, and I love even more how you mentioned that others’ responses aren’t crucial. I am going to strive for this too, I can’t imagine the amount of peace that would run through someone when that milestone is achieved. And, when life is too short, especially with a life-threatening disease like IPF: all I want in my life is to feel content, peaceful and happy.
I like to ask anyone know this question, and I feel like it would be a cool response to your milestone about moving. If you could live anywhere in the world (money and allergies set aside, and you could bring your whole family with you…), where would it be?
Getting rid of things is also such a freeing idea. I am not a hoarder by any means, everything in my home has a spot but I do like the idea of letting go of some more materialistic things. Even better if they can be donated or used to help someone in need.
I am going to have to think of my milestones, and instead of just grouping them together (like major birthdays, for example), I will really think about them and put them into sentences like you have done above. Then I’ll share them with you. Thanks for the inspiration!
Charlene
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Charlene,
Thank you for kind words.
My ideal town would be Carpenteria, Ca. Small but not too far from universities and VA hospitals. Best of all, the beaches are nice and the weather is mostly perfect.
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Gil, that sounds like a dream! I live for costal views, the beach and the ocean. My family has a cottage on a great lake here in Ontario (open waters, so there is no other side in sight, so similar to the ocean) which I love spending time at in the summer, but it just doesn’t compare to the ocean. It’s also awesome that it isn’t far from the hospitals. Let me know if that is where you decide to relocate, is it a place you are really considering or a dream destination to reside at? I have lots of those dream destinations, that aren’t ever going to be realities… they include… Hawaii, Italy, Fiji, the Maldvies… haha… wishful thinking 😉
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Charlene,
I am still looking at different places, right now the coastal area I mentioned seems most likely. I haven’t really looked at the housing market or the costs, and I also want to understand the plant life in the area, allergies you know.
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That sounds like a good plan, Gil. Do you know anyone in that area, where you’re looking to relocate? When are you thinking of making a move, regardless of where you go? In the next 6 months, 1 year, etc? Just curious 🙂
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