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  • Christie Patient
    Moderator

    I’m so sorry for your loss Charlene. This grief sounds really complicated and painful. I’m so sorry you’re wrestling with the particular complexities of this grief in the public eye… I know that small-town energy can make it really difficult to go through private struggles. People have questions you can’t answer, or they can’t ask but you see it in their faces anyway. I can imagine how that might feel. I would try to think of just what your friend’s mom would say. How would she want you to handle this? If it’s too hard, maybe giving yourself some space and boundaries with people in your community would be a good idea. But you know all this. As always, here to listen if you need a friend.

    C

    Hi Forum Family,

    This week has been a tough one for me, and I’m wondering: have you ever experienced survivor’s guilt when a fellow patient with IPF dies before you but was diagnosed after you?

    I’m in the midst of publishing a column about this, but a friend of mine lost her Mom last week to IPF and the funeral was this past weekend. Her Mom and I corresponded a lot about the challenges of living with a terminal lung condition, as no one in the small town we are both from could relate to our struggles. The funeral hit me hard, and I found myself having to navigate some difficult emotions and questions. For example, many of the people at the funeral knew that I have the same lung disease as my friend’s Mom. When they asked me how I’ve been doing or feeling, I was reluctant to share that I feel lucky because my disease is relatively stable (for now), because their loved one just died from the same illness. The emotions and feelings I had at the funeral really complicated how I felt leading up to the services and throughout the day, and I think will complicate my grief as well. 

    How do you cope with the funeral of a fellow IPF patient, especially if you attend their services in person?

    Do you have any tips to share?

    #31779

    In reply to: Telling your family

    Holly
    Participant

    Hello, everyone. After a year of varying diagnoses and testing, my pulmonologist told me that I did have IPF. He tried to soften the blow by telling me I was an excellent candidate for lung transplant. I immediately began taking the necessary steps to qualify for the transplant list. This led me to talk to both my sister and brother, as I knew I would need their support as caregivers,  post-transplant. One positive result of these talks was a quickly arranged family reunion in Hawaii, which was wonderful. My siblings were ready for whatever was to come. Though my pulmonologist guessed that I’d have two years before needing transplant,  in fact it was only four months. So, be aware that stability only lasts until it doesn’t, and exacerbation can come without warning at any time. My husband was aware of the diagnosis, of course, but he seemed unable to really take it in, which may be a common reaction for spouses. I did not tell my daughter, Christie, moderator of this forum, though she was aware of ongoing lung problems. My decision to leave her temporarily in the dark stemmed from her own struggles with mental health issues at that time. Varying stresses in her life had come together to the point where I felt she might be unable to handle this piece of devastating news. I still believe this was the right course of action at that time, though when events unfolded, she did in fact handle the situation beautifully. She handled the crisis, and became my highly valued caregiver. In general, I agree that family need and deserve to know, and you deserve the support that only family can give. But, there can also be circumstances that might lead you to hold off for awhile. Best of luck to you all, and please consider transplant!

    #31720
    Jeff Taylor-Jackson
    Participant

    Hi all,

    I am a month away from being 62 and I live in Poole South coast of England.

    I was diagnosed with IPF in April 2021. I have spoken to my consultant and a number of people who have had the transplant. I think here, it is pretty much the same as what has already been said, aside from your weight. If you are obese, I dont think anyone here would take you on. One chap I spoke to recently was 67 when he had his and is now 72. He is happily back riding his pedal bike with his mates, he says he struggles to keep up, but I’m sure thaey are not racing.

    As for the single or double, my wife has COPD. She was born with CDH (you might have to google that) and as such only has one fully developed lung. She recently had a lung function test, and the guy told her that despite her single lung, she functioned as well as someone with two.

    Kind regards

    Jeff

     

    #31537
    Christie Patient
    Moderator

    I’m so happy to hear that you are home and feeling energetic! If you’re well enough to care about cleaning up clutter, I have no doubts that you will continue on the upswing and maintain health for a lot longer than 6 weeks, as you mentioned earlier. A little better each day is worth being grateful for!

    Those conversations in the hospital can be very traumatic, and I hope you have support as you process that. You can always reach out if talking about it would be helpful. My mom still struggles when she recalls the “end of life” conversations she had with doctors. In spite of her overall recovery, those were dark days that still haunt her.

    Keep us posted with your healing and keep celebrating the little victories!

Viewing 5 results - 1 through 5 (of 100 total)

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