Charlene
Forum Replies Created
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Hi Sandra,
Thank you so much for creating this topic and for sharing your experiences of when you were first diagnosed vs. living with IPF now. What an excellent topic!
I also remember my first year of being diagnosed, it was terrifying and I spent a lot of time debating how and whether or not to tell my friends and extended family. Of course, my immediately family knew but I didn’t know how to tell others I had a life-threatening illness, and one that they likely knew nothing about. When I did tell people, it was after I processed it (as much I could at that time, anyway…) and it felt like I just spit it out to others with no emotion, almost as if it was a narrative that was happening to someone else and not me. I still don’t know why I even questioned whether or not to share with friends and family who love me, as they have been some of my biggest supporters. Did you know anyone with IPF when you were diagnosed, or did you know of the disease?
I will keep my fingers crossed that you can remain on 2litres of O2 for a long time yet and that your FVC remains stable. Where a bouts do you reside Sandra?
Thanks again for writing and I look forward to getting to know you more 🙂
Charlene
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Hi Nancy,
Thank you so much for joining the PF forums and for creating this topic for all post-transplant recipients. I am so grateful that you’re willing to share your experience with those who may be nervous or apprehensive about the transplant process – you’re living proof that it is possible (although, I am sure you had some hardships along the way). Congratulations on being 6 years post-transplant, that is amazing!
For people who are considering transplant, do you have any advice for them that they can carry through the process of pre-transplant evaluation and then post-transplant advice, as well? We’d love to hear from you!
Charlene
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Hi Michelle,
Thank you so much for taking the time to introduce yourself on this forum. I’m really glad you’re here!
I am sorry to hear of your Mother’s diagnosis, and understandably it was a shock to everyone in your family. Had any of you heard of IPF before she was diagnosed (likely with you being an RN…) ? Have her Doctors been able to give you an idea about the disease progression, whether it has been stable for awhile or slowly or rapidly progressing? I also hope OFEV helps your Mother and that the side effects aren’t too bad. Thankfully, of the anti-fibrotic medications, OFEV (in my experience anyway) has been the lesser of the medications with side effects.Please know that your family members are also welcome here, and we anticipate this forum to grow as more people become aware that it has been launched. In saying that, I hope more people who join here can share with you their experience of being a caregiver to a loved one with PF. Caregivers really are our heroes!
Take care and please feel free to connect anytime.
Sincerely,
Charlene -
Hi Gil,
Thank you so much for providing us with this feedback! Since the forums are so new we’re still working out some technical kinks, but I believe we have corrected the issue now. Are you able to see all the forums? There should be 9 forums available for to you view and/or join. There are 5 posts in the 50+ group, and I believe we have corrected the error you are seeing. Please let me know, and thanks for joining us!
Charlene
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Hi Timothy,
Welcome and thank you so much for joining the forums! You raise a really good point about the forum grouping options, and I should look at creating one for individuals who fall outside of the age ranges of the under 40 and 50+ forum. I will do this tomorrow (Tues) for sure, and send you a link on how to join. In the meantime, if you’d like to join either of the existing groups, please do feel free. We’re glad you’re here and hope you find the forums helpful. Please feel free to connect any time!
Sincerely,
Charlene -
Hi Alex,
This is a really great topic, and I look forward to hearing from others about their ideas as well!
Before my diagnosis in early 2016, I was a very active young adult. I used to play hockey, volunteer, run, work full-time and work on advancing my education through graduate programs. When all of this started to become really difficult for me, due to excessive periods of shortness of breath during the most simple tasks (like climbing stairs) and extreme fatigue, I knew something was wrong. It took me about 13 months to be diagnosed because I kept thinking I just had a cold that wouldn’t clear, and after multiple rounds of puffers, antibiotics, inhaled steroids and prescription medication, I finally went into an ER where my sats were read, and it was determined that my heart was working way too hard. After about 5 months of intense testing (because I was “too young” to have a lung disease), I was diagnosed with IPF. My world crashed because all the things I loved to do, that defined me, I couldn’t do any more. For awhile after my diagnosis, I could continue to participate in some of the things listed above but as my lungs continued to decline and rarely cooperate, I had to give up most of my favourite activities.
Fast forward to now, when my lungs don’t cooperate most of the time ;-), I have had to learn new hobbies and activities that bring me joy. Here are some of my favourites:
- I have become really interested in healthy cooking! I usually hook up my concentrator and putter around the kitchen dragging my O2 hose around and as long as I’m careful, I am able to cook, which brings me a lot of joy and to those around me too.
- I re-ignited a passion for crafting in the past couple of years. I like to make little gifts for people like knitted hats, scarves and mitts. I like to do this in front of a movie, simply so there is background noise but my focus is definitely on what my hands are doing.
- I no longer run or play hockey, but I still crave time outdoors. As a result, I’ll take my dog for a walk if I can that day, depending on how my lungs are. If I can’t do that, I throw a ball (using a ‘chuck-it’ toy) in the back yard so I can be stationary and when she brings the ball back I can throw it without using up much energy
- I have also begun writing and love this! This is such a therapeutic outlet for me, being able to write for PF News and connect with others through platforms such as this has been such a gift. Maybe someday I’ll write a book…
- I try not to give myself too much “unproductive” screen time, but I have also learned to love some games on my iPad. I try to make them mind games, like ‘words with friends’ or other challenging games (even some trivia) that make me think.
I’m curious to hear what hobbies others have started, or continue to do with their PF? Please share your thoughts with us!
Charlene.
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Hi Lauree,
Thank you so much for joining the PF forums, and welcome! I am so glad you took the time to join and share your question. Since the forum was just launched today, we’re hoping to continue to grow membership in the coming weeks (please share with your networks as you see fit). That being said, I’d love to talk with you more about this. When you refer to needing tricks to reduce shortness of breath or increasing your ability to breathe, do you mean in general, or while you’re trying to exercise and be active? I think the techniques you could try could be very different depending on whether you’re sitting stationary or while you are trying to exercise. Do you use any type of inhaler? Are you on oxygen right now? Please share with me some more information and I can definitely share with you some tips on what my physiotherapist and respirologist have suggested for me to try and reduce my shortness of breath. It may not work for you of course, as it was a program tailored to me, but worth a try right? I look very forward to hearing back from you and welcome again.
Sincerely,
Charlene -
Hi Gil,
Thank you again for joining the forums and for sharing a bit more about yourself. I hope you find this forum helpful and while you are welcome, you might actually find some of the other forums more helpful as they are for patients regardless of where they live. Feel free to join those forums too (link to all the forums can be found here: https://pulmonaryfibrosisnews.com/forums/) as you can certainly be in more than one.
I am very envious of you in sunny California right now. Does the heat bother your lungs? It is about -15 C in Canada right now and the cold/wind really takes my breath away when I step outside so I am always curious to hear how weather impacts other patients with PF/IPF.
I look forward to getting to know more about you and welcome again to the forum pages. Please feel free to post regularly, we hope this platform is a place where everyone feels welcome and free to share however they need to.
Sincerely,
Charlene