Charlene Marshall
Forum Replies Created
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Gil,
Thank you so much for sharing this with me. I am going to save and print it, then add it to my ‘gratitude box’ which I keep in my room. I fill it with cards, mementos, pictures and words from others that are really special to me and I sometimes pull it out when I am struggling or having a really bad day, week, month, etc. In considering the post above about facing mortality, I also am adding things to this box that will be special for my family to know and remember about me. So, something like this where you have gifted me with the knowledge that my columns helped you, is not only something I cherish and want to remember, but I want my family to know this too. Someday, when I’m gone, I think this will be comforting for them to have it. Thank you for giving me something else to ad!Tell me about some of the milestones you have in mind and/or that are coming up for you? 🙂 I look forward to hearing them! Having milestones that we want to reach is something that has enabled me to hold out for hope.
Charlene.
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Hi Sandra and Gil,
I really appreciate the dialogue we’re having here and am very thankful that you both are willing to share your experiences. It is so hard to know that something isn’t right, especially when you no longer can participate in all of the things you could before because of being short of breath. It is even harder, and more frustrating when it seems like there are no answers for why you feel so short of breath. I remember thinking this for about 9 months, “am I just imagining this? why can’t I breathe doing such simple tasks?”. These were questions I asked constantly before my diagnosis, and because I didn’t have an answer (at the time) I chalked it up to any reason I could, such as, “maybe I’m just getting sick”, or “the air quality must not be very good”. It was really hard, and in a way, when I did receive my diagnosis, although I didn’t want it to be IPF, I felt kind of relieved that we had an answer. Did either of you ever feel that way, even a little bit, when you were diagnosed?
Gil, I remember also feeling similar to you, especially when others continued on doing the things I once loved, but without me. I was never angry at them for this, or resentful, as I wanted them to fully enjoy their lives, but I sure felt sad and think I might have even fallen into a little bit of depression. A sports team I used to play on travelled to Australia for a National championship and I couldn’t go (although I have been to Australia before) and that was devastating for me. What tricks did you use to reframe that depression to the gratitude you said you feel in the second paragraph of your post? I am so very grateful to know that my columns found you during a time of sadness, when you were seeking answers about how others coped with IPF. I recently wrote a column about this, but I never in my wildest dreams imagined I would be writing for a publishing company on life-threatening illnesses (mainly because 1. I hated English in school and 2. I never thought I would be diagnosed with IPF), but in a way I am really grateful that I have been. It has enabled me to connect with more people than I thought possible, and establish unique friendships. I still hate having fibrosis too, but as you mentioned it is so important to be grateful. Thank you both for your posts and I look forward to continuing to chat more 🙂
Charlene
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Those are really good things to add and consider as well Gil! This is something that has been really hard for me to deal with: facing mortality as a young adult. I really wanted to be able to celebrate the milestone things, like significant birthdays (I did just reach 30 this past December, but also 40, 50, etc) as well as weddings, etc. Initially I was really sad to think that I might not reach them, but I have re-framed my thoughts into hope that I will reach them, and also just try to appreciate each day with as much gratitude as I can.
Quality of Life is such a big consideration for patients with PF/IPF, I completely agree!
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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 -
This is such good advice Sandra, thank you so much for sharing. I also was guilty of turning to the internet for information, and the prognosis / lifespan expectancy of 3-5 years was terrifying for me. It would be so amazing if folks who have been living with PF/IPF well beyond the 3-5 years (I know there are lots out there, I’ve “run into” many of them via Facebook conversations) posted here. I think it would reassure people newly diagnosed that the life expectancy is merely just a number. The exercises you refer to, are those pulmonary rehab exercises prescribed by your pulmnologist? I have some exercises from a transplant physiotherapist that I do, but I also try to incorporate other exercises that I can tolerate, although they haven’t been approved by my team. It just feels good to be active and as you say, keeping your body strong is so important. Thank you for sharing!
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Hi Gil,
I’m going to take a look at what the Sierras are, I’ve never heard of them before. I’m also going to check out Yosemite and Sequoia. Since your last post, I actually connected with my friend Lindsay who lives in northern Canada in the Yukon Territory and asked her if I should share some of her stunning photos with you. I love these images, and can only imagine how amazing it was to see this in person. Aren’t they beautiful? I really have to get out to visit her at some point so I can see this myself too!
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Gil, that list gave me goosebumps…. such great ideas!
I love the asking for forgiveness, and I love even more how you mentioned that others’ responses aren’t crucial. I am going to strive for this too, I can’t imagine the amount of peace that would run through someone when that milestone is achieved. And, when life is too short, especially with a life-threatening disease like IPF: all I want in my life is to feel content, peaceful and happy.
I like to ask anyone know this question, and I feel like it would be a cool response to your milestone about moving. If you could live anywhere in the world (money and allergies set aside, and you could bring your whole family with you…), where would it be?
Getting rid of things is also such a freeing idea. I am not a hoarder by any means, everything in my home has a spot but I do like the idea of letting go of some more materialistic things. Even better if they can be donated or used to help someone in need.
I am going to have to think of my milestones, and instead of just grouping them together (like major birthdays, for example), I will really think about them and put them into sentences like you have done above. Then I’ll share them with you. Thanks for the inspiration!
Charlene
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Hi Gil,
How is your day going so far? Canada, well at least Ontario is being hit with another major snow storm this weekend so I am barricaded inside. That is okay though, I’m happy to be indoors where it is warm as opposed to being out in the snow.
Interesting to hear that one of your Doctors recommended two flu shots this year. I was actually just reading an article about a little boy who was at the epitome of his health and he caught the flu, then it turned to bacterial pneumonia and he passed away. Absolutely terrifying, so when I read more to try and understand why that happened, it was stated that the flu shot is immune to this year’s strain of the flu, so it sounds like your Doctor was smart in suggesting two for different viruses. I still got mine of course just to be safe.
Considering those two options for moving, which one would be your ideal location to reside: the desert or the coast? Mine would hands-down be the cost, I live for the ocean and want to be near it at all times. Sadly in southern Ontario, I am no where near the ocean but in my upcoming travel plans (Vancouver in April and the UK in September) I’ll get my ocean fix in. I actually always wondered about whether the sea air would be good for people living with IPF. I’d be interested to see if there was a study ever done about that. In theory I think that makes sense, but I’m certainly no Doc.
Where in California are you again Gil? I’d love to look it up on google maps in relation to big cities like LA or San Fran, just to have a visual. It’s nice to “know” people from all over through the use of this forum.
Have a great day!
Charlene -
Hi Sandra,
Thanks for your reply. No need to feel bad about what you did or didn’t do when you were starting to feel different, as my transplant coordinator always tells me: “thinking back to what if/could have/should have steals your joy from today”. I used to roll my eyes at her when she’d tell me this but it has stuck in my head and has been applicable to many different situations that I’ve encountered since I was diagnosed. Plus, the symptoms of PF are so easy to chalk up to something else, I completely agree with you. It’s interesting because I was only 28 and when diagnosed and I knew something was wrong but never imagined I had a lung disease since I was supposed to be in my prime years of optimal health! I really admire your commitment to positivity, and it is so interesting to hear you say that you are glad it is you than someone else in your family. I’ve said this so many times too! My friends don’t seem to understand, because they see me suffering with it, but I truly am glad it is me instead of someone else. I don’t think I could be as strong as they are if I had to watch them live with PF. Sometimes, I actually think being the caregiver of someone with PF would be harder than being the patient. I love my friends and family so fiercely that I would take this all on again to prevent them from ever getting it.
Since we touched a little bit on how we felt when we were diagnosed in this post, I wonder if you could help me with a new forum topic I have started? In the Diagnosis Information and General Questions forum, I just started a topic about advice you’d share for those newly diagnosed. The link is here: https://pulmonaryfibrosisnews.com/forums/forums/topic/advice-for-newly-diagnosed-patients/ and I was wondering if you’d share your advice? I’m so glad you’re part of the forums Sandra!
Have a wonderful day,
Charlene -
Hi Gil,
Yes it sure is cold! So cold that some days I can’t be outside due to not being able to breathe, and we’ve even had businesses where their pipes burst due to freezing. I have lots of friends who enjoy winter due to the snow-filled activities they participate in, but I am not one of those people. I would take the beach, sun and warmth over the cold any day! With regards to the humidity, do you have anything that is particularly helpful in assisting you to manage the impact of the humidity on your lungs? I am always looking for things to try when managing the onset of weather-related difficulties for my lungs.
It is so interesting to think of the link between your diagnosis and suddenly having allergies. I wonder if there are any studies out there linking the two, or any cause and effect-type literature? Something I’ll have to look for in future. Have you heard of anything? I can imagine the pollen is really bothersome. I have family members who have those allergies and certain seasons are terrible for them.
I also found your comment about flus and colds interesting as well. I feel the same in that I never really had significant colds or flus before my diagnosis. I don’t think I did anyways, or perhaps I just ‘brushed them off’ as being insignificant because I knew they likely weren’t going to escalate and cause something life-threatening for me (like an exacerbation). Now, I pay so much attention to any sniffle or fever that I get and I wear a mask as often as possible. Oh, here is a question for you that I just thought of: did your Doctor recommend getting your flu shot this year, and did you end up getting it? I’m always curious about patients thoughts on this.
Chat soon,
Charlene -
Hi Sandra,
Thank you so much for your reply! I totally agree with you, I didn’t know anyone with IPF either before I was diagnosed, it was really scary to read everything online. Were your initial symptoms shortness of breath, dry cough, etc? On average, they say it takes about 16 months for people to be diagnosed with this disease. I was lucky, they suspected it after about 9 months and I was officially diagnosed 13 months after my first set of symptoms. Are you considering, or will you ever consider lung transplantation to ‘cure’ your IPF?
I also am so thankful for the groups online, including Facebook, PF News, etc. It gives me a chance to connect with others who truly understand what it is like to live with a lung disease. I’m also so honoured to be moderating this forum, as I think it has a really great potential to connect others in one platform that has multiple uses. If you know anyone else who is looking to connect with other patients, please share this forum link with them (https://pulmonaryfibrosisnews.com/forums) 🙂
Please feel free to connect any time Sandra. We’re so glad you’re here!
Charlene
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Hi Gil,
WOW!!! These are incredible! I have never seen anything like this in our Canadian skies. This summer, as long as my lungs can tolerate it, I do hope to go camping in Northern Ontario for just one night, and it is my hope that the skies will be as clear as this. You sure have talent with the camera. Have you ever seen anything like the northern lights? My friend lives in the Yukon and she takes the most beautiful photos of the northern lights! I don’t know if this is something that can be seen from where you are, or if there is anything similar? I’m just thinking about how amazing it would be to photograph them similar to these photos.
Do you have any family members or friends who share this photography passion with you?
Looking forward to hearing from you.
Charlene. -
Thanks so much for your reply, Gil. It is so interesting how different weather elements can impact our lungs. Summer used to be my favourite season, but the intense heat of Canadian summers (even though, I know we don’t have it comparable to some countries heat) have really bothered my lungs. The humidity exacerbates my dry cough, and makes taking deep breaths really hard. This winter, with -20 degree temperatures, I’m also having a hard time breathing as the cold makes me short of breath.
Are the allergens you mention airborne things like pollen or dust? Do you use a puffer to alleviate these allergens? Thanks so much for sharing your experiences!
Charlene
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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