Charlene Marshall
Forum Replies Created
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Hi Rick,
Thanks so much for sharing! Did you have any suspicion that it was your lungs, or did you feel more strongly that it might be your heart? I never really connected the symptom of shortness of breath to my heart (although I don’t know why I didn’t, looking back in hindsight I should have) so I felt a bit frustrated that they were initially focusing so much on my heart at first. What was the biopsy like for you? I know this is one of the most invasive, but concrete methods of diagnosing IPF but I have heard lots of people talk about not wanting to go that route out of fear that it would make their breathing troubles worse.
Good for you for joining the fitness/rehab clinic, is it one at a local gym or is it a program through a hospital/treatment center? Always curious from those who do pulmonary rehab programs, as I really felt like mine made a difference for not only my ability to breathe better but for my overall body strength. I’m hoping to do another program in the spring actually.
Goodluck with your upcoming appointment!
Charlene. -
Hey Gil,
Strange, I wonder why that is. Are you typing your response right in this text box, or are you copying it from a different program on your computer, ie. Word? Sometimes word can be finicky and a bunch of jargon ends up in the forum topic, instead of words but I’m not sure why that is. If you are using Word, try using a simpler text program on your computer like Notepad or Pages (for Mac) or something similar for Windows users. See if this helps any?
I am subscribed to this topic and have set my preference to receive an email when you respond to this thread so I receive the body of your text in my email I think… did it say this: “Charlene,
If I do move to the area I like, it will be about 500 k from my current hospital but as long as there are universities nearby, there will be a good hospital nearby. If I do move it will be during the summer.
Soaking in the hot springs sounds like something I want to try. I have ran across a few spots but I have never tried it, if I get another opportunity I will jump in for sure.
As for winter, sometimes we rent a cabin or stay at a lodge during the cold months. The average cold temperature in Yosemite, where I have experienced the coldest weather, is 41.2 F or 5.1 Celsius and that is cold but I suspect this is rather on the warm side for you.
I hope you enjoy your vacation to Vancouver. Please send photos.”…. if it did, I will absolutely send photos of Vancouver. I am going in April so it won’t be perfect weather, but it will be sure nicer (and milder) than here. Yes, I often have a bit of a laugh as in the spring months for us, like March and April, if the weather is 5 degrees celsius, we often are outside without a coat on as it feels ‘warm’ after the winter ends. However, in the fall, after the summer months, that temperature feels very chilly. It’s funny how the body adapts to certain temperatures, and how it just seems to adjust to things in general. Living with IPF, for the most part, sure is a prime example of that.
Let me know how you make out with trying to paste your comments in future here…
Charlene -
That sounds like a good plan, Gil. Do you know anyone in that area, where you’re looking to relocate? When are you thinking of making a move, regardless of where you go? In the next 6 months, 1 year, etc? Just curious 🙂
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Hi Alex,
I looked into this for you with our production team. There was a limit on the managing end of the forum that eliminated the option to edit a post after 5 minutes. Not sure why this was the default but I’ve changed it going forward. We still have to put a time limit on it, but I’ve changed it to 90 minutes, that way members have over an hour to make edits to a post they share in the discussions. Thanks for highlighting this for us and giving us the chance to fix it for future members! 🙂
Cheers,
Charlene -
Hi Walter,
Thank you so much for joining us! What a treat it is to have pulmonary specialist be part of our forums, although I am sorry to hear you’re also living with IPF. I posted a reply to your comment about stem cells in the Research group, which can be found here: https://pulmonaryfibrosisnews.com/forums/groups/research-and-development/forum/topic/stem-cell-therapy-in-ipf/
Would be curious to hear if you’ve come across this study yet, or what your thoughts are on it? I haven’t read it in full, so I’m not sure about the credibility of it. Just thought I’d pass it on as someone shared it with me recently…
Welcome again!
Cheers,
Charlene -
Hi Walter,
Thank you so much for joining our forums and for introducing your interest in research pertaining to stem cell therapy for IPF patients. This is a very interesting and “hot” topic right now among patients, and several comments have been released following columns published on http://www.pulmonaryfibrosisnews.com about this topic. Do you have any data or research to share that has been conducted on this topic yet? I would be curious to learn about it as well. This is one that someone shared recently on a comment on the PF News site, not sure if you wanted to have a read through it? I haven’t read it yet so I don’t know its credibility, just passing on the link:
If you find more information please share, and thanks again for joining the PF forums!
Cheers,
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 🙂
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Amazing, thanks Gil! Let us know if you have any more troubles…. we’re still working out some technicalities with the forums.
How is your day going? Remember how I mentioned we were getting so much snow yesterday? Today it is freezing raining so it’s just made a mess of ice everywhere. Its really bad weather, and very damp like chilling cold. That is one thing I really struggle with since my diagnosis, my extremities (particularly fingers and toes) are always cold. Do you experience this too?
Charlene
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Hi Gil,
This is super strange. I’ll get the ‘brains’ behind the development of this forum to check it out for us! Sorry this keeps happening… we’re on it, and as soon as I have a solution I’ll repost here for you.
In terms of deleting a post, just above the text box where you write your reply, you should see an option to ‘trash’ what you’ve written. Let me know if you don’t see it (I can, but my settings may be a bit different than yours) and if you don’t, I’ll find out why as well. 🙂
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Hi Alex,
Thank you so much for sharing this with us! Was there any confirmation or suspicion from your Doctor (my guess would be yes…) that the PF contributed to the development of PH? I am regularly being sent for echo’s which of course checks the pressure throughout your arteries and heart, and I’m always told this is just for “precaution”, but I suspect they are checking for PH as well. I’m glad your PH is mild though!
That makes sense re: it being hard to tell if the medication for the study is helping. If I were participating in it, think I would be so mindful of it, that it would be easy for my mind to play tricks on me too, as you mentioned.
Wow, that is so interesting! I’m glad you (and your Doctor) explained that because I guess I wold have thought that sending oxygenated blood to damaged areas of the lung would help “repair” the damage in a way (for a visual, I thought it might be similar to letting air at a laceration, which helps dry it up and heal) . However, I suppose if the damage is irreversible (as in the case of scarring in the lungs from PF) then sending blood to that area would be counterproductive, as you say. So, if you opt to go on the long-term study, the one that is 2 years, your progress will of course be measured by physicians but will you get to know whether it is making a difference for you throughout the study, or will you have to wait until the end? Again, sorry for all the questions, I just love research!
Have a nice day,
Charlene, -
Hi Rick,
Thanks so much for sharing a bit about your journey and diagnosis with IPF. Did it take you awhile to get diagnosed? I’ve read both in literature and heard from many other patients, that a final diagnosis of PF takes an average of 16 months even when symptoms are regularly present and a patient suspects something is wrong. Mine took about 13 months, but that was from my very first episode of shortness of breath all the way up to needing oxygen during my 6 minute-walk-test. All in all, I think I’m pretty lucky to have had it only take that long because IPF was not on the radar of any physician I saw, since I was so young (28) at the time of my diagnosis.
Your questions are always welcome here! In terms of Esbriet, I was on it for awhile and I didn’t have major side effects but there were some unpleasant ones, like GI-type stuff and just a really sour stomach that nothing seemed to resolve. I could eat and drink, it wasn’t anything like that, but I just had a constantly upset stomach that was unpleasant, particularly if I was out somewhere public or at work. Do you have a choice between Esbriet and OFEV? Just curious…
Charlene
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Wow Gil, thank you so much for sharing. I am glad you’re lucky in the sense that you haven’t declined as rapidly as the Doctor predicted. Did they say this decline would just happen suddenly, or at random? Or did they say it would be triggered by something, like a cold or flu? I am pretty terrified of catching the flu at the moment, just out of fear that it will cause an exacerbation and then a significant drop in my lung function. I am hyper-vigilent about washing my hands on a regular basis, and I pay particularly close attention if I feel even anything coming on, because I always understood that a cold or flu could cause a rapid decline in those with IPF. I wonder if this is similar to what your Doctor was referencing, or something totally different?
Talk with you soon,
Charlene -
Hi Rick,
Welcome to the forums, and thank you so much for contributing to this topic! I do something similar as you, in that I turn up my oxygen usage (sometimes I wonder if I shouldn’t be turning it up so high…) and ensure I am sitting down comfortably. Have you found any sitting positions help you more than others? Just in recent months, I deliberately sit at a 90 degree angle when I can’t breathe well, with my feet on the floor, head straight up and I try to push my shoulders back, almost as if this posture is opening up my airway a bit better. I don’t actually know if this is helpful physiologically, but it seems to help calm my mind a bit and makes me feel like it helps.
Thanks again for sharing,
Charlene. -
Hi Nanzy,
Thank you so much for sharing – this is such an interesting topic for me. So, did your Doctor totally rule out that there could be a genetic component to your IPF? I guess they must if they have diagnosed your PF as idiopathic. I’m really glad that your siblings are aware of it though, and that they are being proactive with insisting x-rays etc. How many siblings do you have? 🙂
I think your theory makes a lot of sense. As you said, who knows what was in the air during the war days unfortunately. When I was visiting the 9/11 memorial museum in NYC this past fall, I was in the documentary room and one video was talking about the mental, emotional and physical impact of the many first responders that responded to the collapsing towers that day. Unfortunately, they mentioned how many of them now have chronic lung diseases, PF being one of them, most likely due to all the toxic fumes, dust and debris that was inhaled in the initial rescues. I thought that was interesting, very sad of course but never even thought about that type of an impact, and I think the same thing would be similar (or I would imagine it would be) during times of war.
When you have the response to the plant mulch, of coughing and irritation, does anything in particular help you? Do you use a puffer?
Thanks again for sharing, and chat soon.
Charlene -
Hey Gil,
Even if you are in the center of the universe as you say, I am very envious of you that where you live doesn’t get as cold as it does here. The snow really is a beautiful sight to see, especially in the beginning of the season or at Christmas time but it does become ‘old’ and overwhelming quickly. As an example, we’re stuck inside this weekend because the snow has just piled up in the driveway and it will need to be cleared before our car can get out.
If you moved to some of your favourite coastal areas, would you be far from your family and/or the hospitals where you are treated at?
I’ll let you know how Vancouver is, I’m really looking forward to that trip. Sometimes it is nice to travel domestically and see different parts of Canada. I think we are going to take a ferry over to the island of Tofino, which will be beautiful! I would also like to take a soak in the hot springs that come off the glaciers, I think that would be so good for my muscles and see the rockies as well. I’ll have to fit a lot in during my 5 days there in April…. I am up for the challenge!
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Gil, that sounds like a dream! I live for costal views, the beach and the ocean. My family has a cottage on a great lake here in Ontario (open waters, so there is no other side in sight, so similar to the ocean) which I love spending time at in the summer, but it just doesn’t compare to the ocean. It’s also awesome that it isn’t far from the hospitals. Let me know if that is where you decide to relocate, is it a place you are really considering or a dream destination to reside at? I have lots of those dream destinations, that aren’t ever going to be realities… they include… Hawaii, Italy, Fiji, the Maldvies… haha… wishful thinking 😉
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Hi Alex,
Thank you for sharing…this is really fascinating to me! Were you diagnosed with PF at the same time as being diagnosed with PF, or did it come awhile later? I know sometimes it can come on after living with PF for awhile due to the pressure on the heart that poor lung function can cause. I’m assuming you’re still in the first phase of the study? How long have you been on the inhaled drug? Do you think it is making a difference (ie. do you suspect it is the drug or a placebo)? How long is the length of the long-term study? Sorry for all the questions, I’m just really interested, and agree with you completely about wanting to help Doctors add to their knowledge base when it comes to treating this disease.
So, just curious then: would dilating the blood vessels in the lungs improve oxygenation, keeping your ability to breathe more stable? I don’t imagine it would do anything or address the issue of fibrosis development in the lungs but even to be able to breathe more freely would be such a benefit. This sounds like a really promising study. Thank you so much for sharing!
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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 -
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 🙂
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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!
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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
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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
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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 -
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