30 posts tagged “Idiopathic pulmonary fibrosis”

“You get out of life what you make it”: Member Anna shares her experience living with IPF

Posted 8 months ago by

Meet PatientsLikeMe member Anna, who’s been living with IPF since 2011. Below, see what she shared with us about her diagnosis, how she fills her days with the things she loves, and how she’s learned to tackle daily tasks like shopping and cleaning while living with a chronic condition. She also touched on how PatientsLikeMe helped her learn to better manage her condition and how she found support with the IPF community online.

 

“You get out of life what you make it. I had a lot of hardships but I still bounce back.”

 

A typical day for Anna involves rising early, taking her meds and then meditating. “I play my singing Tibetan bowl and meditate for a while and thank the Lord for another day.” She also loves to crochet: “I do a lot of it and you can never have enough yarn. Needless to say, my house has skeins of yarn lying all over the place.”

Life hacks for managing her everyday

When it comes to managing day-to-day tasks, she makes sure to be smart about how she spends her energy by dividing her cleaning based on the day of the week and on how she’s feeling. “I do one room every other day so as not to overwhelm my lungs and so I don’t get too tired.” She also finds online shopping is useful because it saves her time and it doesn’t require her to carry heavy items to and from her car.

Getting support in-person and online

While Anna has the support of her son, who is her caregiver, she’s found one of the biggest challenges of dealing with her condition is doing so without her husband. “I became a widow in 2013 when my husband passed away from kidney cancer…the most challenging part is traveling this journey without his support.”

She’s also found that being part of the PatientsLikeMe community has helped her manage her condition in a number of ways, from understanding how IPF affects others to reading about new research and discovering what treatments other members are trying. Anna says PatientsLikeMe even helped her figure out what questions to ask her pulmonologist.

 

“On PatientsLikeMe I also found out about supplements that a lot of IPF members were using which helped me in choosing which were best for me.”

 

Finding hope

What would Anna say to anyone who’s recently been diagnosed with IPF? “Don’t give up. I know at first it feels like a death sentence and you go through a grieving process and feel that there is no hope or light at the end of the tunnel. But these are normal reactions, and the key is not to fall into that pit.” She encourages people to be strong and says that it’s okay to ask for help when you need it.

When asked how she’s more than her condition, Anna said: “I don’t let it define me. I enjoy my life, I don’t overindulge, but just because you’re sick it doesn’t mean your life is over…my condition is not me.”

Are you living with IPF or another chronic condition? Join the PatientsLikeMe community to find answers and support.

 

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PF Awareness Month

Posted September 13th, 2017 by

September is Pulmonary Fibrosis Awareness Month, and in honor of that, we’re rounding up what members of the PatientsLikeMe community have shared about pulmonary fibrosis on our blog.

First off, for those who don’t know – what is pulmonary fibrosis (PF)? It’s a chronic, progressive scarring or thickening of the lungs, which makes it difficult for oxygen to transfer from your lungs into your bloodstream. It may be caused by certain medications, environmental exposures or underlying diseases of the autoimmune system (such as rheumatoid arthritislupus or scleroderma). Idiopathic pulmonary fibrosis (IPF), the cause of which is still unknown, is the type of PF most people might’ve heard of, but there are many other forms of PF, such as sarcoidosis and cryptogenic organizing pneumonia.

Now let’s take a look back at some blog posts about PF.

  • In 2013, member Ian shared about his journey from having “stiff lungs” and getting diagnosed with IPF to undergoing a lung transplant. “I was bloody determined to have a transplant,” he said. Read more here.
  • In 2014, member John_R discussed his adjustment to his “new normal” of living with IPF and using supplemental oxygen. “My oxygen use was quickly accepted at work,” he said. “There were a couple of double takes when people who did not know I was going on O2 saw me for the first time. A quick smile from me was returned and all was back to normal.” Check out more of his story.
  • Also in 2014, member Barbara opened up about her IPF diagnosis story and being her own healthcare advocate. “I know that the road to diagnosis is often long and complex with not all the piece of information presenting at the same time – seldom with one test or series of tests taken at one point in time,” she said. Hear more about Barbara’s experiences.
  • In September 2014, we shared a video to raise awareness of PF featuring member Bryan. He was an inaugural member of our Team of Advisors who believed in the importance of sharing about his experiences with IPF. Sadly, Bryan died in 2014. His memory and data live on.
  • Last year, member Glenda joined the 2016-2017 Team of Advisors and shared about the uncertainty of living with IPF and what she has gained from the community: “PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know.” Meet Glenda here.

Explore all our past blog posts about PF. Are you living with pulmonary fibrosis? Join the community today to meet other patients like you.

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