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June 25, 2018 at 8:11 pm #13179Charlene MarshallKeymaster
Building friendships with others who have the same illness as you can be incredibly rewarding and therapeutic. For me, having friends who truly understand what it is like to live with idiopathic pulmonary fibrosis (IPF) as a young adult has been very beneficial, and I wouldn’t trade it for anything.
While I know that IPF is fatal without a lung transplant, I still want friends who also live with this illness, and I am acutely aware of the pain that might come with losing them to our disease. Despite my knowledge of this, it never seems to hurt less when a friend I’ve grown to know and love dies from this horrid disease. This happened to me yesterday, and I am feeling the heartbreak of losing someone I care about all over again.
Not only do I really feel the heartbreak, but every time that someone I know dies from IPF it re-ignites an internal fear as well. What if I am next? Am I living the best life I can in case something happens to me tomorrow? Do I have everything organized in case something happens to me? These are all questions I ask, although arguably, something could happen to us all at any time.
A close friend of mine who was 18 months post-transplant has been having a tough time, and just recently her doctors told her that due to infection and rejection, her lungs had become resistant to antibiotics that would be used to treat any type of viral or bacterial infection. As an immunocompromised patient, it is inevitable that we will get sick and for my friend, we knew it would happen again and that when it did, the doctors wouldn’t know how to treat her. Sadly, she caught a viral infection and became very sick very fast. Yesterday she died en route to the hospital, and I can only hope that her death was free of pain and suffering. She can now breathe easy and doesn’t have to struggle any longer.
While I say these things, and truly mean them, I feel pretty angry that they need to be said at all. I hate that people die of this disease, and I hate that I have it. And I am doing to miss my friend. Regardless of knowing that those we love with IPF are at an increased risk of losing their life to this disease; it never seems to hurt less when it happens. My heart feels pretty broken today, and I am anxious about attending yet another funeral for someone who has died from the very disease I have.
How do you cope with the overwhelming sadness that comes from losing someone you love with IPF?
Do you feel the fear that also comes from someone you care about dying from the same disease you have? If so, how do you deal with that?
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