[Charlene]

Thank you so much for your contributions to this topic so far everyone! I really hope patients who are newly diagnosed come across it and find comfort in everything you’ve shared 🙂

[Charlene]

This is an excellent question Alex, and I’ve passed it onto our team to try and find out from you. I also noticed Gil, that occasionally I’ll see the ‘edit’ button as an option but not always. Thanks for catching that both of you 🙂

[Charlene]

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.

[Charlene]

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

[Charlene]

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!

[Charlene]

I also am a coffee lover Alex, and I think this is what gets me out of bed in the morning too! It is definitely a guilty pleasure 🙂

Have you ever been told by your Doctor about whether or not caffeine impacts this disease in any way? I don’t drink any soda, haven’t really ever, so the only type of caffeine I really get is in my coffee and usually I just have 1 per day, but sometimes I’ll have two.

Another thing that a patient I know from the treatment facility where my medical team is, has said that increasing her water intake has actually helped her feel less tired too. She said it not only helps with her physical fatigue (especially keeping her joints from feeling stiff and sore), but she said it also helps with her mental clarity, so she doesn’t feel as ‘foggy’ or fatigued mentally with an increase in water intake. Something easy enough to try, so I think I’m going to see if this helps.

Cheers,
Charlene

[Charlene]

Hi Dick,

Thanks so much for sharing and joining us in this discussion topic! I hear many people still find the best remedy for fatigue is napping, and I do think I need to work harder in building this in whenever I can (ie. on weekends when I am not working).  Do you find doing your exercises easier first thing in the morning or at night, before bed, or do you have a preference? I try to walk on my treadmill as often as I can and try to watch an episode of my favourite show while walking. I just haven’t figured out when in my day is the most optimal in terms of not being too tired to want to do this, it is a work in progress for me 🙂

[Charlene]

Hi Gil,

Oh that is one way to increase my level of comfort following a massage – to have my RMT come to me. That is a great idea! She is lovely and I am confident she would do this. I agree, I dislike getting up and dressed, and going in the cold to go home after a massage. I do find massages so relaxing that I often fall asleep on the table and as I mentioned, definitely sleep better at night where I wake up the next morning feeling much less fatigued.

Thanks for sharing your experience of your road trip from watching the Lunar Eclipse as well, as this is one of my biggest fears: taking such a long time to recover from a trip. I used to bounce from one thing to the next so quickly, and now I find I need time in between to rest and recoup. I’m currently planning a trip to the UK in the fall and don’t want to build in ‘rest time’ as there will be so much to see in only two weeks but I am thinking that it is inevitable that I’ll have to do this.

What is C0Q10? Is it a supplement? I have been incorporating a lot of juicing into my diet as I got a juicer for Christmas and I find fresh orange, pineapple, mango or any citrus juice really helps get me going in the morning. I’ve never heard of prickly pear juice! Sounds like something you’d find on the Disney movie The Jungle Book 🙂 … would like to try that sometime.

Thanks, as always for sharing Gil!

[Charlene]

Hi Michelle,

Thank you so much for sharing about your Mom’s experience thus far with OFEV. I will continue to keep my fingers crossed that she doesn’t experience any nasty side effects. If I may ask, how long did your Mom have PF before being put on OFEV?

Charlene

[Charlene]

Hi Nanzy,

Thank you so much for sharing your advice and joining in on this topic with us!

Although I am awfully sorry to hear about your Mom, especially the treatment of COPD instead of the PF, it gave me goosebumps to read about how you feel that your Mom saved your life by being aware of the disease for an early diagnosis for you. Have they linked the disease as hereditary for you then, calling it familial PF? I’m trying to learn more about that, because it was so rare for me to get it (there is no history of any type of lung disease in my family) and I want to try and see if there is a link out of fear that others in my family could get it. I’m not sure of the criteria that would quality PF to be considered familial, whether it is on one side (ie. paternal or maternal) or whether there needs to be a certain number of family members, generations diagnosed. I’m hoping to learn more about this at some point.

I am also so glad to read that you insisted on the referral to a pulmonologist, I think advocating for our own health needs is so important. That is probably one of the pieces of advice I’d add to the list for those newly diagnosed: don’t be afraid to advocate for your needs if you feel like you’re not being heard. This is hard to do in the medical world, but it is also so important.

I pray that the OFEV continues to work for you as well, and that transplantation surgery is still a ways out for you too. Thanks again for writing Nanzy!

Charlene

[Charlene]

Hi Everyone,

Hi Gil,

I really like how you mentioned that taking care of all the legal paperwork isn’t an indication of one ‘giving up’ or giving up hope, and instead, it is more a matter of practicality because as you say, anyone’s life could abruptly end unfortunately. I really should look into doing this. A friend of mine who is now widowed mentioned that her and I should do a will together, since she doesn’t have one done up either. This is a daunting task for me, being only 30 but I agree with you in the sense that I really don’t want my family to have to deal with all of this. And, death is inevitable, we are all eventually going to die (PF or not) so as difficult as it is to talk about, this is important.

I’m also so glad that you shared that it has been 7 years since your diagnosis because it really highlights that the 3-5 year life expectancy really is just a number and an average for people, but does not apply to everyone. If you are comfortable, can you tell me (the forum) a bit more about the rapid decline you referenced? What did that look like for you, was it more frequent periods of shortness of breath or physical lung function decline? I hope it is okay that I asked you, it is something I’d also like to know.

Thanks,
Charlene

[Charlene]

Hi Alex,

Thanks so much for joining and creating the hobbies chat. It has helped me learn so much about Gil, and now a bit more about yourself. What kind of photography have you done in the past or are looking into doing again in the future: nature/scenery shots? animals? portraits? There is so much to do with photography, it is a bit overwhelming for me thinking of getting into it (although, I am very crafty with images other people create as I like to scrapbook and preserve images) but it is something I’d like to try someday!

Did you see the images above Alex, of my friend Lindsay’s photos? She now lives in the Yukon here in Canada she takes the most beautiful pictures of the skies and northern lights up there.

Thanks again for sharing a bit more about yourself Alex. What other hobbies do you enjoy?

Charlene

[Charlene]

Thanks Gil, I will pass that onto Lindsay. She would love to hear this! The picture of what-looks-like 3 wolves is actually her three huskies! Isn’t that neat? She used to be such a city girl, never any pets and always had her hair and make-up finely done and since she moved to the Yukon, where she is the recreation director of lodging, she is definitely one with nature. It is so awesome to see this side of her! She takes her 3 dogs and goes hiking and camping (yes, in sometimes -40 degree weather…. apparently there is special equipment for winter camping, although I’d never do this Lol) for days. It is so cool to see the pictures she shoots after one of those amazing trips!

Wow, thank you so much for the link of the Sierras, so beautiful! I absolutely love the images of the streams running through the valley with the mountains in the background! How refreshing, thanks for sharing!

[Charlene]

Thanks Gil, I also find deep breathing and mindfulness exercises helpful. Do you still attend the mindfulness classes? Are they offered through your treatment center?

The other thing that often helps alleviate my fatigue is massage therapy. It sounds strange, because getting a massage makes me even more tired but when I go to sleep after a massage, I actually wake up feeling more rested and alert. Therefore, I can only get a massage at the end of the day or on a weekend where I can just crawl into bed after, but for some reason I do sleep a lot better after a massage and feel less fatigued when I awake in the morning. Have you ever considered massage therapy for rest and relaxation, Gil?

Charlene.

[Charlene]

Ah, strange, sorry Gil. Thanks for letting us know!

The forum and the topic of ‘Advice for Newly Diagnosed Patients’ is still active, but maybe I didn’t put the link to it in properly. Try this: https://pulmonaryfibrosisnews.com/forums/forums/topic/advice-for-newly-diagnosed-patients/

Did this work? If not, just go to the pain forums page and click on the forum titled “Diagnosis Information and General Questions”, then the topic of ‘Advice for Newly Diagnosed Patients” should be there. Would love to hear your advice 🙂

Advice for Newly Diagnosed Patients

[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!

[Charlene]

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! 

[Charlene]

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

[Charlene]

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

[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

[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

 

 

 

 

[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

Pulmonary Fibrosis News Forums

[Charlene]

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.

[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