Charlene
Forum Replies Created
-
Hi SurferGirl,
Thanks so much for joining the PF forums and contributing to this topic! I agree with you that more research needs to be done, and I do hope the researchers who published this article continue their work. I’ll read more about the research you mentioned above, I’m glad you shared that link. Are they looking at the genetics within family links that might cause Telomere shortening? I’ll definitely have a read on the link you shared, I just haven’t yet so I apologize if my question is explained in the article above.
Are you aware of any research being conducted on Telomeres for patients with IPF? I would find it really interesting to examine the genetic and environmental factors of those who have IPF to see if there is any commonalities that might be responsible for Telomere shortening. I know an idiopathic diagnosis is used when there are no known factors to cause the disease, I just have a hard time believing / accepting that this disease “just happens”. With all the wonderful researchers and physicians out there, I know some day we will understand more about the causes of PF/IPF.
Thanks for sharing!Charlene
-
Hi Luke,
Thanks so much for joining the PF forums and for contributing to this topic! I find the concept of familial PF so interesting, and as you say there isn’t much research out there to link PF solely to genetic factors because it is rare. Although, I am hearing of more and more people sharing their stories through social media platforms where several people in their family all have had PF. Some have shared that their Doctors say there is a genetic link, but they aren’t sure what it is or why it occurred, and other people say that their Doctors don’t believe there is a genetic link. I wish there was some type of algorithm or criteria that clearly helped us (and Physicians) identify familial PF. I guess I am so interested in this because I have IPF and to our knowledge, there is no genetic link because no one in my immediate or extended family has any type of lung disease, and I fear that I’ve started one. I know there is nothing I can do about it, and I know that there is no known environmental or genetic factor to the development of my disease, but I’d love to learn more about it for the future generations in my family to be aware of, just in case. I am so glad to hear about the research occurring in Australia, where is it being conducted? I love Australia and have visited 3 times in the past 18 months.
Thank you for sharing the details of your family, although I am so sorry to hear of so many losses from IPF. That must have made your diagnosis even more difficult. Was it something you were watching for/aware of the symptoms that might indicate IPF? I was talking to a wonderful woman on the forums recently who said due to her Mom’s experience with PF, she was diagnosed early due to awareness and her disease if being managed very well. Also I wanted to note that the family members of yours who have been around for 15+ year with this diagnosis gives me so much hope and I hope others read that part of your post as well! Thank you for sharing.
Cheers,
Charlene -
Hi Lisa,
Thanks so much for joining the forums and for your contribution to this topic! I also am having a hard time sleeping at night, and this is new for me. It really just started in the last 4 months or so, and is mostly difficulty with falling asleep but I seem to stay asleep ok. Is your disrupted sleep more about staying asleep or getting to sleep? Just curious if we share in this same experience. My Rheumatologist actually gave me a medication that was to help settle the pain endings on my nerves, as she felt my body was responding physiologically to numerous stressful experiences I’ve had in the past few months. She said this medication was a sleeping pill, nor was it any type of anti-anxiety or depression meds, but she did say it would likely help me fall asleep and rest better, but unfortunately that isn’t happening. I’m going to talk to him about this on Feb 28.
I am glad you’re open to the idea of massage! See if you can find an RMT who will travel to your home, and then you will be able to just get up and crawl into bed. As Gil mentioned, that is such a wonderful feeling. I notice such a difference in my body’s ability to rest after a massage, so definitely worth a try. Have you ever had a massage before? I was just thinking that if you haven’t, it is probably a good idea to have the RMT and someone else there with you when you stand up after just in case you have the sensation you mentioned above. Since massage can have so many benefits systemically, especially if they are infrequent for you, your body could respond with the sensation you reference but if someone is there to help you after then hopefully it will be a very relaxing experience for you. If you’re comfortable in sharing, was the steroid use that caused this from Prednisone? I just want to be aware of this if so as I am on high doses of Prednisone.
I am so glad you’re doing better though and they don’t happen as frequent, they must have been really scary at first! Thanks again for joining us and I look forward to continuing to get to know you Lisa.
Take care,
Charlene -
Hi Bill,
Welcome to the PF forums, and thank you so much for sharing your experience with Ofev in this forum topic. I know readers will find it very helpful!
If this isn’t too personal of a question, was your cough a dry cough or was it productive? I often wonder this as people can differ significantly in hour their symptoms appear for PF.
On the note about familial IPF, I also wonder (and actually, just wrote about this on the forum…) what criteria it takes for PF to be considered ‘familial”. I wondered if it was the number of family members diagnosed, or if it was a certain type of family chain (ie. all females on the maternal side, as an example)… I’d really like to learn more about familial PF, as I worry about future generations in my family now. Maybe I will post this question to the Research and Development group to see if anyone there knows.
I really appreciate your sharing, and I thought maybe physicians started approving Ofev for patients due to the convenience, ie. less pills. I’m so glad to hear that your 6 and 12 month check-up went well without any progression as well. I hope this continues for you!
Cheers,
Charlene -
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 🙂
-
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:Â 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 -
Hi Shaw,
Thank you so much for sharing and for joining in on the discussion. We’re glad to have you!
You’re absolutely right, every patient on this site does have something in common so please feel welcome to contribute or post a new topic any time. Very cool that you’re from Nevada, I’ve never been. Do you typically get seasons similar to Canada, or are you one of the luckier states where it doesn’t get too cold in the winter months?
Shaw, when you said you went in for a CT expecting to see some kidney stones, were you going in for specific symptoms? If so, do you mind sharing what some of them were? If you were anticipating kidney stones, did you have any suspicion that you had a lung disease? I see as I read your post further that you have some mild shortness of breath, but not many other symptoms? Sorry for all the questions…everyone’s journey with this disease really is just so different!
I remember the feelings so well that you described following your diagnosis: shock, denial, depression, etc. I’d add anger to my list, because I was so mad that suddenly I had a disease that would ultimately change the course of my life and yet somehow, I had never even heard of it. I was only 28 at the time of my diagnosis, and I became pretty angry, even more so that they couldn’t determine the cause which is of course why I received the IPF diagnosis. I am so pleased to hear though that you found a local support group, and that you’re starting on Esbriet (keep an eye on the Esbriet forum and topic discussions I just created) … optimism and hope can be such powerful things when dealing with this disease! Is the support group out of your local hospital?
Please feel free to post your Esbriet questions or concerns with starting the drug in the Esbriet forum and hopefully someone can answer for you 🙂
I look forward to continuing to get to know you!
Cheers,
Charlene -
Hi Gil,
Thanks for your reply. How was your day?
I’m glad that so far you are able to just stop what you’re doing and rest to reduce your symptom of I presume to be shortness of breath? I think the typical measurement of requiring oxygen is when completing the 6 minute-walk test, if your oxygen saturations drop below 90. I think, but I could be wrong, however it is definitely worth a conversation with your Doctor, especially if supplemental oxygen (even periodically) would help you achieve the tasks you enjoy. It might help as you say, especially with higher altitudes. I flew to visit friends in December and had to use my oxygen the whole flight, even though of course the cabins are pressurized. It was still quite uncomfortable for me flying, even with my oxygen…
What is your FVC Gil, if you don’t mind my asking? It sounds like you are doing really well for someone who has such more lungs. Kudos to you – very admirable!
I think a journal is such a wonderful idea, and a really brave step. It’s hard to do these sorts of things, especially when doing so might highlight that our disease is progressing but it might be interesting to note trends and changes. This could help both yourself and your Doctor. I actually did this during the 9 months that we were trying to figure out what was wrong with my lungs. I noted every time I was short of breath doing stairs, how many coughing “fits” I had, what types of things bothered me (ie. cold vs. hot air) and I also noted emotional changes I felt, like frustration, fatigue and excessive crying (which I did often when I didn’t know what was wrong with me) and this helped my Doctor see just how much I was bothered by my lungs not working properly. Please let me know if I can help in any way re: the journal. It is hard to see though, especially if changes can be noticed throughout the journal, so be gentle with yourself.
Charlene
-
Hi Gil,
I wasn’t able to watch their gold metal performance live, but I have since gone online to watch it and they are so incredibly talented, aren’t they? Obviously any athlete participating in the Olympics are talented beyond measure, but I particularly think that ice-skaters are very talented. Having a best friend who is a professional skater, I know how much discipline, physique and dedication it takes to perform so well on the ice!
Canada’s “mild” temperatures are far too cold for my preferences too. This morning when I was going to work, I put down almost a whole bag of salt on my driveway because there is so much ice everywhere. The temperature in my car read -19 this morning, so of course, I had a hard time breathing and was doing a lot of coughing so now I am at my desk and my chest is feeling pretty sore.
Hmm, that is so interesting about the cream that you mentioned. I wonder if it helps stimulate the muscles, and therefore warm them up a bit? Today my fingers seem to be ok, but my toes are really cold and numb so I guess each day is different. I may try adding some heating pockets to my boots because having my feet be so chilled is terrible.
With regards to the driving, I agree with you there. I still tire out really quickly if I am in the car for too long and I also get very sore from sitting still for long periods of time. Do you usually wear your oxygen in the car? I forget whether you mentioned if you use oxygen 24/7 or just upon exertion, so if you are on it all the time then I know the answer to my question. Has anyone given you any ‘flack’ for driving with oxygen? Even though I am permitted to drive still, I get nervous whenever I pass a police/law enforcement officer, because I’m afraid they will pull me over and question my ability to be driving….
Charlene
-
Hi Gil,
Oh thanks for the reminder about the olympics! I knew they started Friday but haven’t been able to watch them all weekend due to other things going on. I love the olympics normally so I’ll have to catch up and old acquaintances (more like friends of one of my best friends) are Scott and Tessa the ice-skaters. We’re definitely cheering for them back at home! I usually like the summer olympics more than winter, but I need to tune in nonetheless.
Thanks for sharing about your extremities, although I wish we didn’t endure this. Yes, oftentimes I am so cold that I can’t use my fine motor skills very well, like typing, grasping or writing. Usually some gentle stretches helps to restore blood flow, but usually about 90% of the time, my fingers and toes are uncomfortably cold. Does anything in particular help reduce this feeling for you?
I just finished a tea actually, great minds think alike 🙂 It will be interesting getting the car out tomorrow morning to see how slippery it is outside and how much ice has stayed around. We have more “mild” temperatures coming our way this week, more like -5 instead of -20. Speaking of the car, do you still drive on your own and are you nervous to drive using supplemental 02? Always curious to hear from others about this topic….
Charlene
-
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
-
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. 🙂
-
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, Â 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
-
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!
-
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 😉
-
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!