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Mental health and living with PF
Let’s talk about mental health and living with PF.
How is your mental health these days? Do you have any strategies for addressing and improving your mental health?
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13 Replies
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My mental health has been truly awesome until very recently. For the last couple months I have been having a much more difficult time.
It seems very sudden to me as I have been dealing with this since 2016. Going really pretty strong. I can honestly say This is the first time I feel like my life may be closer to ending then I have ever felt. It is sad and scary.
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My pulmonologist suggested that anyone with my lung disease CPFE see a therapist to help with the up and down of depression. When I first started researching pulmonary fibrosis with emphysema I became very afraid and depressed. My therapist has been wonderful. I know my lung disease has a poor prognosis. I have my affairs in order now and am taking it one day at a time. I would recommend to anyone dealing with depression seek out help. Ask your primary care for a referral. No person has to handle this alone.
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I rely on my faith. The day we are born we are destined to die. And for the vast majority of us we have little to no control over that. But in the time we have on this earth we do have control over how we live our life. I did not choose to have IPF and Emphzemia, but I did chose to smoke. And I strongly suspect that my smoking is responsible for my illnesses. Now, I have made another choice, that being to spend my remaining days embracing life. Doing what I need to do to make my days productive and meaningful , loving people and encouraging them to do the same.
😀
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We come and we go. The same for all are equal. Now with lives lived we got in to bad habits. I quit
Them all. But to look back I can’t change a thing and wait for my higher power good luck and god
Speed.
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I am a teen suicide survivor. The depression subsided. When I developed lupus soon after I was diagnosed with clinical depression. What sustains me is my faith walk with God, inspirational music, watching sermons on YouTube, taking classes, getting together with friends. Since the diagnosis of PH I’ve been in bed more. Initially I cry but now I learn to adjust. It’s always a roller coaster 🥴
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Update to my post on mental health. Have been seeing a therapist so unstand this is not a death wish. I have made a decision for my own disease progression and it applies to my case only. I have discussed with my pulmonologist, my therapist and my primary care my wish to discontinue all medications, CT’s and care for my CPFE except oxygen. My doctor’s are not in agreement, but there comes a time when nothing else can be done.
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Linda
Your story shows very clearly one of the challenges of this disease. Regardless of the source of the disease, there is nothing that can effectively predict the outcome of any type of PF. Some do well for many years while others seem to follow the prediction of the actuarial.
You have made a decision which many before you have struggled with regarding treatment. I do think it illustrates that the decision belongs to the patient. Your care team likely told you the downside of your decision. Some will second guess your decision. As long as you are at peace with your decision I wish you well.
Please do keep in touch here or in a message to let me know how you are doing.
Sam…
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ah hello.
I have been thinking this (the idea of how long to stay on treatment) – I have RA and PF diagnosed June 2023. no known risks or cause. Lung function has gotten much worse over last three months and I”m new to being on o2 (LTOT). To walk 20 feet I need 6 liters. Insurance is a NIGHTMARE. They have several times refused antfibrotic meds. Hey, we don’t know what it would do, but cold I try??? And maybe its too late now anyway.
I have been thinking: Why do I spend hours on the phone and emails with supply companies, fighting w BCBS AND the company that initiates my plan AND the business that is supposed to sign me up, AND the doctors and nurses AND labs AND medications and pharmacies…… tests and doctors visits. IS THIS LIFE???? DO I want more of this?
When I mentioned that its at least a part time job to have a chronic illness to my PULMONOLOGIST he said, ‘ yeah its tough to get to the doc every few months’ WTF, (!) seriously. I was speechless. This is a daily struggle. When I get up a say OK ‘let the existential dread begin!’ I mean I don’t want it but its there.
SO! I am not letting go of meds and emails and tests and visits yet. … and I will not end my own life deliberately, but I can see what we’ll call “letting go” as you mentioned here. My lungs have really tanked in the last couple months, so I don’t know how long I will have to endure this Mortal Coil anyway.
My doc said I am a good transplant candidate, but that’s no picnic either and there are a lot of risks, …and I have some objections to it that I won’t go into.
WOW, rant and ramble. Right now mental health is not great. Lots of time I am both depressed and tired. Not sure how much of each.
Thanks, glad to have this site where folks get it,
*AND Its frustrating when people say “oh, I understand.” Once a chick at BlueCross BS -when she kept saying “Oh I understand” in broken English- I said “WHAT do you understand?” oh! She did not like that. But she really did NOT understand and kept incorrectly processing my insurance (they cancelled the plan I am paying for and reported I was on an older plan). NIGHTMARE it looked like I had no insurance…..etc!!!!!! and I pay LOT for my plan. It TOOK 6 weeks and HOURS of phone calls and emails. Why??? People just do your job. UGH.
Well, Happy and Blessed Valentines Day my dears,
my name is Monica
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I think i called Sam- steve. sorry. i cant figure out how these messages work ???? Char
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I am the caregiver for my husband. He is on oxygen 24/7 and pretty much no longer has a personal life with all his medical issues with his ipf It has been progressing very fast Today he admitted to me he has been contemplating ending his misery. I understand his feelings, but I don’t know what to do with them. He refuses therapy because he knows his final outcome with this disease. Suggestions?
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Hi Barbara,
This disease comes with big feelings that get bigger as the disease progresses and with isolation. Do either of you belong to a support group? I can tell you that attending a support group, even if you just listen can be very helpful. There are many virtual support groups available for participation. I am not sure where you are located. If you cannot find a support group please reach out to either of the moderators here… myself or @Charlene Marshall. We will help you find some support group opportunities.
Sam…
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I was diagnosed with IPF in April 2020. I will be 78 next month. I am on no meds having tried both Perfinedone and Ofev including lower dosages which still had bad side effects. I know that I don’t have a firewall to slow the spread but have chosen to have a better quality of life than being on the toilet or in bed. This is an individual decision. If I have witnessed one thing from this forum it’s that each persons health and abilities greatly differ. Figure out what you can handle and do what you can to deal with this disease. I am lucky with a loving wife, sons and grandchildren who live close and I see often. I don’t want to leave the party but I’ve decided to stay upright till the end. Good luck and God bless you.
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Living with Pulmonary Fibrosis (PF) was one of the hardest experiences
of my life. The breathlessness, the fatigue, and the fear of the future
weighed on me every single day. I had tried so many treatments and
medications, but nothing seemed to stop the disease from progressing.Out
of both hope and desperation, I came across NaturePath Herbal Clinic.
At first, I was skeptical but something about their natural approach and
the stories I read gave me the courage to try one more time.I began
their herbal treatment program, and within a few weeks, I noticed small
changes easier breathing, more energy, and a clearer mind. Over the
months, those improvements became more and more obvious. Today, I can
truly say my life has changed. My lungs feel stronger, and my quality of
life has returned in ways I didn’t think were possible.This isn’t just a
testimony it’s a heartfelt recommendation to anyone struggling with PF
or other chronic conditions. Don’t give up hope. I’m so grateful I gave
NaturePath Herbal Clinic a chance.Visit their website to learn more: http://www.naturepathherbalclinic.com [email protected]
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