Family Member Refuses Medications

[Charlene Marshall]

Hi Jason,

Thank you so much for writing and following up with me on this topic. Hearing from other patients always helps! I will definitely look into this approach re: stress management. I think it is something we can always improve/do better with. I will think about what ‘action items’ I can do to help make managing chronic stress a bit easier. Thanks again for sharing…. love the resource, too!
Char.

[Charlene Marshall]

Hi Don,

Thank you again for writing — your experience (though career + age very different) sounds similar to me, and I’d love to change that path, as I can imagine reducing stress is nothing but good for us and our lungs. I’m working on it actively, but always am open to ways for improvement. I’m glad your DLCO improved after you made these choices to change your life, kudos to you. I am going to work harder at this…. though, as a 32 year old I have a lot of ‘working years’ ahead of me, and a need to support myself financially too as I have student debt. There is room for change though, which I can work towards….

 

Thanks again for writing 🙂
Char.

[gil]

Katie Beardsley,

Good luck and I get what you are saying.

Jason,
I am not sure I agree that it is a denial issue. Of course I do understand that in many cases it is.  I was a Hospice volunteer and got to meet many people during the end of life cycle.  Most of these brave  people had opted out of aggressive treatments and from the attitude that life is to be preserved at all costs; it isn’t denial so much as acceptance and opting for the best quality of life.  I know that here we aren’t hospice patients but I think it is ok to  have the attitude your mom expresses especially if she has comorbidities which may not be helped with any of the popular IPF drugs.  I think it may make a difference if one has other health issues but in the end, I don’t know, I too may be in denial.

[Karen Martin]

Hello, Gil. You bring up an interesting point, one that somewhat colors my own thinking about having this disease. I have been ambivalent about transplant for some time and current conditions with COVID-19 still out there have added to my feeling that this is not the right choice for me. You may be in denial, but you may also have hit another perspective that we were not considering. Thanks for your input.

[gil]

Karen,

Thank you for nice words and not easily dismissing my perspective.  I suspect age, having multiple health issues, and the probability of a successful outcome colors our view.  I am 73 years old, if I were younger my perspective would likely be different. If I were 30 or so, I’ve no doubt I would go for any promising treatment even if it were aggressive and painful.  Today, my medical directive explicitly states no extraordinary methods or aggressive treatments.

I love life. I am grateful for so many things  yet I dread my IPF worsening. A couple of  years ago I let my IPF distress me so much I wanted to give up but then I came to this forum and met people like Charlene Marshall  who inspires me to keep on going and I so I do.  Yet, when I let myself think about it, I still dread what IPF is doing and will do to me.  I won’t give  up and I am open to non aggressive treatment options but I try not thinking too much about how IPF is shaping my future.

 

[Charlene Marshall]

Thank you for your kind words @gilg-ca ! You inspire me also, and I’m so grateful to have this platform of support. The people in this community are so kind, generous with their sharing and supportive to one another. Your comment really made my day, thank you.

Char.

[Karen Martin]

@gilg-ca

Gil,

I listened to my parents many years ago discuss what sort of life would be unacceptable to them and the ideas have stuck with me. Yes, we all love life and want as much of it as possible, but only so long as it is worth living. Quality of life becomes more important to me the older I get. I don’t relish the idea of what probably lies ahead, but we never really know what the end will be like for anyone. I was in denial early after my diagnosis, which is why I also think that could be part of what is happening with this lady, but your point also rings true for many people. Just like Charlene, I am also grateful for all of the many perspectives we get here, as well as the opportunity to share our own feelings and thoughts. Stay well.
Karen

[George A Rydberg]

I have been taking Ofev since early in 2016 right after I was diagnosed with IPF. My lung capacity has not gone down since I started Ofev. It’s painless and the patient has nothing to lose. A program helps with the cost and my insurance covers the rest. Get them to start, it is never too soon. A good lung doctor would be pushing the medicine. The disease is fatal, but with the new drugs the time can sure be extended.
George

[Jason]

Great news, George! I wounder if it’s not too much to hope for that treatments will emerge that can, in time, arrest the fibrosis. I mean, that Ofev seems to be really extending time.

[Charlene Marshall]

Hi George,

This is wonderful news, thank you for sharing! I also take Ofev and *knock on wood*, I think it has stabilized my lung function too (aside from when I’m sick). So glad you’ve had a good experience with it, and thanks for sharing how it has been for you.

Char.