Networking with other Canadian patients

[gil]

Charlene,

Thank you for welcome, I am from California and live near San Francisco.  I use the Palo Alto VA system which is staffed  with many doctors from Stanford University.  In fact, the doctors treating me at the VA are Stanford doctors.

I am not getting treatment, my biopsy shows that no current available treatment for me.  I was diagnosed in late 2010 and in 2011.  Last year I started experiencing shortness of breath and fatigue doing things I used to easily due; a biopsy confirmed the IPF diagnosis.

So while I am not Canadian, I hope you all are ok having a Californian participate.

 

 

[Charlene Marshall]

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

Pulmonary Fibrosis News Forums

[gil]

Charlene,

Thank you.  The California heat doesn’t bother my lungs but the summer desert heat does. Also the high altitudes increase the shortness of breath but the cold does not seem to bother me.  Allergies is what most bothers my lungs.   I’ve lived here all my life and it is only in the last three years that I started having  allergies. I don’t know if my fibrosis led to allergies or perhaps it is simply an age thing, I am 70 years old.   Whatever the reason, the allergies seem to be getting worse. I am considering moving to another city just to avoid the allergies.

 

[Charlene Marshall]

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

[gil]

Charlene,

That is cold!  Our weather has been around 23 degree C… this last week we broke heat records for the area… our winters are getting shorter, today feels like spring.  I suspect the cold weather you experience would be uncomfortable….  Humidity is a problem for me too.

Yes, allergens include pollen, grasses, many of the local trees such as birch, mullberry, oak, elm, etc…   Ironic in that I love oak trees, I had a home with an oak tree estimated to be over 200 years…. the good thing is I am not allergic to Pine and that is what is mostly found in the high sierra and forests along the coast.  I didn’t have allergies until about the time I was given the diagnosis for fibrosis.  I am also allergic to rabbits, guinea pig and animals like that.  Thus far I have not used a puffer but I am scheduled to begin taking shots for allergies, that should help but I am still thinking of moving. This valley is mostly agricultural and we also grow many fruits and the pollen gets bad and we have many native trees that trigger my allergies.  This is all new to me, I think I mentioned I never had allergies until a few years ago.  Until recently, I rarely had colds or the flu, so I suspect a link to IPF.

 

[Charlene Marshall]

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

 

 

 

 

[gil]

Charlene,

Yes, both my private doctor and the VA doctors/nurses recommend the flu shot, one even recommended two, something about different virus.  Also, I do volunteer work, less now, for an organization that requires we get the flu shot.  Two of my doctors recommend i move to the desert but to go elswhere during the height of the heat season.  The allergy doctor recommends somewhere not far from the coast, he thinks the salty air will be good for my ipf and I will be away from many of the things that trigger allergies and breathing problems.

 

 

[Charlene Marshall]

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

[gil]

Charlene,

No question, the coast rather than the desert.  The challenge is finding the best coastal area given that I have both allergies and IPF.  The Ventura – Santa Barbara area has perfect temperature and the humidity isn’t bad. My favorite coastal areas are around Monterey and San Francisco but both may be a little to humid.

As for Vancouver, visiting there is on my bucket list but not as a priority item. I would like to have salmon in Victoria then drive to Vancouver.  And then from there, take one of the scenic tours such as the train ride through the Canadian Rockies and glaciers.

You live in an area that gets much colder than anything I have experienced. I think I would like the experience of living in a place like that, perhaps a few months and even a year.

I live in Stockton, Ca which is about 90 miles from San Francisco, 350 miles from Los Angeles;  a 2 hour drive to the beaches, 2.5 hours from Yosemite and and about 3200 km from Ontario. In short, I am at the center of the universe, as Chief Black Elk used to say.

 

[Charlene Marshall]

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]

For some reason I can not paste my response….

 

[Charlene Marshall]

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

[gil]

Charlene,

Same problem happens with a text file, I also had a link and maybe that is what creates the problem.

How do we delete a post?

 

[Charlene Marshall]

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. 🙂

 

[gil]

Charlene,

Thank you for information.

The easiest solution is to simply avoid using Word copy and paste, I can do that.

 

[Charlene Marshall]

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

[gil]

Charlene,

Today I’m mostly watching the Olympics, Canadians are winning medals, my favorite was last night dancing, the Canadian couple looked real good.

Yes, I  have the same problem, particularly my fingers and that sometimes interferes with my photo shooting.

Sorry to hear about your freezing weather, hot tea always helps me.  Hot chocolate is also soothing. Our weather has turned colder, maybe it is northern winds.

 

[Charlene Marshall]

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

[gil]

Charlene,

They won gold! They  were the best out there and the Americans were second. LOL, your mild temperature is way to cold for me.

“Does anything in particular help reduce this feeling for you?”

Mostly, getting warm and time and drinking something warm seems to help. Someone I know who has arthritis swears that a cream made from marijuana reduces the discomfort and gives him flexibility; unfortunately he didn’t offer any so I haven’t tried it. If it works for arthritis perhaps it will help with IPF, I don’t know but I’ll look into it.

I still drive to the store and take my grandson to soccer practice and games.  For long drives, my brother in law or someone else drives and we take frequent breaks; drives longer than a couple of hours do tire me and if I  stop the denial, trips longer than an hour are becoming fewer and fewer.

 

[Charlene Marshall]

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

[gil]

Charlene,

I am lucky, currently I am not using oxygen therapy, I just stop what I am doing and rest.  I am wondering  if oxygen will help me in places like Tioga Passs, the altitude is about 2.8 kilometers. That area is great for shooting the planets and Milky Way…. Last time I was there I was unable to do an easy walk, I’ll talk to my doctor about using oxygen at high altitudes.

My lungs are pretty shot and what doctors tell me is that I am not showing the symptoms normally found with people who have my condition. I do get tired easy and the high altitude is uncomfortable but I love the high Sierra.

I think I will start a journal and document health changes that may be due to IPF.  Until recently, I was doing quite a bit of denial but hopefully I’ll be honest with myself and be more accepting of what is going on.

 

 

[Charlene Marshall]

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

 

[Shaw Jennings]

Hi All,

I just found this site and registered.  I live in Nevada, but I suppose it doesn’t matter where I am as we all have at least one thing in common.

To respond to the diagnosis thread – this past October,  I went to the lab for a CT scan expecting to see a few kidney stones.  The scan caught the lower lobes of my lungs identifying Subpleural Reticulations and possible NSIP.  I then had two more scans (CT and HRCT) of my chest, which confirmed that I had UIP or IPF.  I went to UCLA for a second opinion, which cofirmed with 95% certainty of IPF.  UCLA does not recommend a lung biopsy for somenone my age.

I guess I am lucky to get a fairly quick (3 mos.) diagnosis as I have been told I don’t seem to have any symptoms other than mild shortness of breath.  I was also told that the scarring may have started as early as two or three years back, but it was only a guess.

Since my initial NSIP and possible UIP diagnosis back in October, I have struggled with the shock of hearing I might have a terminal disease that I never heard of until I got my diagnosis.  There’s been denial, depression and now optimism as I have joined a local support group and tomorrow I should receive my first prescription of Esbriet, which I am hopeful will slow my progression.

I am now concerned that I won’t be able to tolerate the meds, but I won’t know until I try.  Does anyone have experience with Esbriet and, if so, do you have any tips on how to take it with food?  I have been told that I must take it with a full meal (breakfast, lunch and dinner), but that is about all I know.

Shaw (first name)

 

 

[Charlene Marshall]

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

 

 

[Shaw Jennings]

Hi Charlene,

My wife and I are in southern Nevada on the far west side of Las Vegas, 15 miles from the strip.  The elevation is about 2,000′ so we get only a light dusting of snow every year or so – pretty mild winters.

I’ve had a problem with kidney stones for many years.  Early on they would start with extreme nausea, then vomiting immediately followed by intense debilitating pain, which felt like a hot searing ball bearing working its way along the right side of my torso.  After many episodes, I no longer get sick and the pain is more like an uncomfortable pressure that starts in my upper back then moves to my front right side towards my bladder. The pain or pressure sometimes is over quickly or sometimes can last for days or even weeks.  I no longer go to the hospital when I feel one coming on, so my Urologist keeps an eye on my stones by periodically sending me to the radiologist based on how uncomfortable I get.  My CT scan report, that identified my IPF, did state I had “multiple stones” that immediately became insignificant as the focus moved to my lungs.  Before the CT scan, I had no idea I had a breathing problem or a possible lung disease.

I was stunned by your admission that you were diagnosed at 28.  What devastating news to get at such a young age, I am so sorry.  I can understand your anger, yet you seem to be gracefully accepting your fate.  Do you mind telling me what medication you are taking and, if so, how long have you been taking it?  Also, has your disease progression noticeably slowed or possibly stopped at any time?

I will attend my second support group session tomorrow.  It is associated with one of our local Las Vegas hospitals (UMC – University Medical Center).  I am  assuming, since IPF is such a rare disease, there are only two others with IPF that currently attend the support group. The local Esbriet rep will make a presentation today.

I’ll make a post to the new Esbriet page later today.

Shaw

[Charlene Marshall]

Hi Shaw,

Thank you so much for your reply. I am very envious of you having only mild winters… that would be wonderful! Although, I know lots of people who appreciate Canadian winters and the snow activities they can participate in, but certainly those are not my personal favourite. I live for the beach and time at the ocean! With an elevation of 2000′ do you notice a difference in your ability to breathe vs. other places you’ve been to? Do you have any thing that has a significantly different elevation to compare it to?

Wow, it really sounds like your IPF was discovered by fluke, although I wish it was never discovered for you (meaning you didn’t have this disease…) I am glad that it was detected early, as we all know the earlier the diagnosis the better. I remember before my birthday last year I was sent for an ultrasound of my abdomen to rule out kidney stones and/or an inflamed gallbladder and the tech was so nice she showed me the scan while she was doing. Thankfully it didn’t show anything, however at the same time, it was a tad frustrating to still not have an answer to my back pain I was experiencing. I’ve now learned that with declining lungs, back pain is a common symptom because the muscles are working so hard. It sounds like you didn’t have any symptoms of a lung disease when you were diagnosed, do you now?

I really appreciate your kind words around my diagnosis. I was very angry at first, especially because everyone’s actions were reflecting a really serious diagnosis (ie. appointments /scans were being booked really quickly, which I knew wasn’t standard) and I still had no idea what IPF even was. Then the anger grew due to it being idiopathic, and I had nothing to blame the disease development on. This was really hard to cope with. Absolutely, I don’t mind sharing at all. When I was first diagnosed, via a HRCT scan, PFTs and physician examination I was to be monitored every 6 months, and then went I went back to the specialist the first time after those 6 months were up, there was a significant progression in the disease, where the classic ‘crackling’ was heard (this wasn’t heard in my lungs at first). After that I was monitored more frequently, and my disease continued to progress so I started Ofev. I wasn’t given the choice between Esbriet and Ofev, and in hindsight I would have liked to ask my Doctor why he chose Ofev over Esbriet, I just didn’t think about it at the time. Starting an anti-fibrotic medication was really emotional for me (I started it in December 2016) because it made the disease “real”. Shortly after that I started using supplemental O2. My disease has continued to progress unfortunately, although at a much lesser rate since starting Ofev. Does this help at all? Please feel free to ask questions any time.

I hope your support group went well today, and I look forward to hearing how starting Esbriet goes for you.
Take care,
Charlene

[Shaw Jennings]

Marlene,

I haven’t traveled much since my first diagnosis last October, so I don’t know if or what altitude might cause me breathing difficulties.  Hopefully, going forward, 2,000′ won’t pose a problem.

I know I said I didn’t have any symptoms at the time my IPF was first identified, but actually that is not 100% accurate.  My doctor characterized my condition as not having systems, but I did have mild crackling, my FVC was 69% (just below low normal), and I did have mild breathing difficulties, which I thought prior to the test, was due to age.   As of present, my symptoms don’t seem to have changed; however, I soon may know different as I have an appointment on the 22nd where I will be retested to set a baseline for my Esbriet treatment.

Can you tell me what your oxygen levels were when you first started supplemental oxygen?  My levels average around 93/94.  They sometime briefly drop below 90 and are as high as 97.

So OFEV is working for you, but there is still progression.  Hopefully it has and will continue to make a difference.

Since my diagnosis, I have talked to very few people about about my disease or what I am dealing with.  Your support group has changed that, thanks for being there.

Shaw

 

[Charlene Marshall]

Hi Shaw,

Thanks for your reply, and I hope you’re having a nice day so far!

Do you have a passion or interest in travel? When I was diagnosed, I admit this was one of my biggest fears: that I would no longer be able to travel or fly anywhere using supplemental oxygen. In recent years, even before my diagnosis, I discovered a strong passion for travel and I still have so much of the world that I want to see. This fear still eats away at me sometimes, but I am trying to make the best of it as right now, even using supplemental oxygen, I have still been permitted to fly and travel, although it is harder. I went to New York City to celebrate my birthday last fall, and even though I had been to NYC before so I knew what to expect in terms of all the walking, it was so much harder than I had anticipated it would be. NYC doesn’t have accessibility laws and therefore, escalators and elevators being fixed weren’t a priority so there was a lot of stairs I had to take and that tired me out and caused a burning in my lungs like I’d never felt before. Thankfully I had people with me who were incredibly helpful and supportive. I didn’t really notice a difference in altitude (ie. while flying) but I know some people notice a difference so I do hope, as you say, that an altitude of 2000′ doesn’t cause you breathing difficulties in future.

I am glad you don’t have significant symptoms, like intense episode of shortness of breath. Those are really scary, but am sorry you have even the mild crackling. Did you notice the crackling, or was it something the Doctor heard when he/she examined you? Sometimes when I take a deep breath in, I can feel or hear (or I think I can anyways….) what sounds like a gurgle or crackle, but I’m not sure if this is possible to the human ear without a scope.

Sure, I’m happy to share those details! For about 9 months (March – December) of the year before I was diagnosed, my medical team and I thought I just had a cold that had deeply settled in my lungs because nothing conclusive was showing up on my x-rays, etc. I wasn’t sent for a HRCT scan right away due to my age, but was given antibiotics, puffers, steroids, etc. to try and rid whatever it was that I had and it worked for a few weeks at a time, but then my shortness of breath and dry cough returned. It was actually in an urgent care clinic where I was sent to hospital via an emergency run because of my oxygen sats. They were 91. Now my average reading is anywhere between 90/94. Ofev seems to be working to at least slow the progression, and if it can’t stop it, then I will take at least slowing! Do your sats typically drop with exertion then?

I’m so glad to hear that these forums have been helpful for you. It is really hard to talk about your diagnosis with people, I found that too. Either a) people had never heard of IPF so in their minds “the disease couldn’t be that bad” or b) I felt like a burden talking about a terminal illness to the people who loved me. It is important to get it out though, and the best way I had found to do that (before these forums) was writing columns through PF. Please don’t hesitate to connect about anything in future, I’m really glad you found these forums too!

Charlene

[Charlene Marshall]

Wow, that was a really long reply on my end Shaw! Sorry for the novel…. 🙂

[gil]

Hi Shaw and welcome,

You expressed similar symptoms that I’ve experienced and you sound like a private person and so am I, this forum is the first place/time that I have opened up about my ipf.

BTW, I was just in your neck of the woods, I have family in Henderson, NV. We went to the “B” and saw the lunar eclipse from there. I also shot a few shots of the strip.   The high altitude of the Sierra does does bother me, seems the breathing issue is particularly worse above 5000 feet.

Charlene,

I will look up the the numbers for you, I tend to forget them or perhaps I stopped looking at them last spring after my biopsy.  I noticed that in early 2017 the oxygen level had dropped to 94-95, it used to be 98-99, probably a lot less now. I see the pulmonary people next month for a follow up c scan.

 

 

[Charlene Marshall]

Hi Gil and Shaw,

I think that is so cool that you are within close proximity to one another? How far would you say you both are from one another when you’re at home, based on what you’ve shared? Interesting to note your experience of having breathing issues greater than 5000 ft. Gil, thanks for sharing!

Let us know how your sats are next month when you go to the appointment Gil, I’d be curious. Mostly because if you think they  “are probably a lot less now”, it is important to advocate for supplemental oxygen, as difficult as this might be to accept. I’ve read that organ damage can occur if sats are lower than 89 consistently so I do hope they are still within the 90s for you, and high 90s at that.

Remember how I shared how cold and snowy the weather was in Canada last week? Sometimes the evening temperatures dropped to -20, well today it is very mild, wet and foggy here with a temperature of +5. It is such strange weather, and you’d think that milder temperatures would be good for me but I am really struggling to breathe today. I’m guessing this is because of such a sudden change in temperature, or perhaps due to how damp it is? I’m not sure, but it is a strange feeling for me and kind of scary too as I worry more and more that my lungs are less tolerate of all / any weather conditions. How is your day going?

Charlene

[Shaw Jennings]

Hi Charlene,

I think our traveling days are over.  In recent years my wife has developed severe food allergies so dining out is always a challenge.  Eating food in a foreign country would definitely be even more difficult.  Fortunately we were able to travel when we were younger.

The crackling was one of my first symptoms along with the scarring in my lower lobes.  Funny that you say you can hear crackling.  In December both my wife and I caught the flu and bronchitus.  An odd symptom that I never experienced before was a noticeable sound of crackling from my mouth when I exhaled.  I too questioned whether it was resonating through my body or was an audible sound.  My wife confirmed that it was an audible sound.  It has since stopped once I got over my bronchitus.

Good to hear that you are getting some benefit from OFEV.   Do you ever wonder if you might do better with Esbriet?  Too bad there isn’t some medical process that would allow one to try both in an attempt to find out what works best.

Yes, when I climb our stairs my oximeter indicates a measurable drop.  To as low as 88, but it quickly recovers to 94 and if I breath deeply and slowly I can get it up to 97 even 98.  I suppose my next 6 minute walk test on the 22nd will confirm if I should start on oxygen.  I am hoping not.

As you probably know, I received many responses to my request for tips on how to take Esbriet.  They were very helpful.  I have now taken 3 pills and no problems.  Of course, that could change once I am taking two or even three at a time.  I’ll keep you posted on my progress.

Shaw

 

 

 

[Charlene Marshall]

Hi Shaw,

Thanks so much for your posts and sharing your experience with the forum.

Where were some of your favourite destinations that you and your wife traveled to? Traveling is such a passion of mine and I’m planning two trips this year. I always like to hear the experiences of others, as traveling is so personal to people too, depending on what they want to see while they are on vacation. For me, it is anywhere with beautiful coastal views!

Thanks for sharing your experience of hearing an audible crackle as well. I wonder if maybe I am getting sick, or have a bit of fluid or something in my lower lobes? I should ask the Doctor about that next time I see him because I still can hear a bit of the crackle, and my cough is now productive vs. dry. Hopefully if this is something, it can be treated and then this will go away. December sounds rough for both you and your wife! Did you have any implication of the bronchitis on your lungs, ie. a drop in function, increased scarring etc? That is my biggest fear, that getting sick I’ll take a “nose dive” in my lung function.

I have wondered on occasion if Esbriet would be better for me. Thankfully, this doesn’t happen often and when it does, I’m usually having one of my “tougher” days in terms of being able to cope. I also wish there was a criterion or algorithm that could be created which would determine who would be better suited for Esbriet vs. Ofev. I know this is unrealistic because everyone is so different and treatment is individualized, but it surely would help with the wondering for me when it does happen…

I will keep my fingers crossed for you that you don’t need supplemental oxygen following your next 6-minute walk test. It is hard to accept, but from someone who uses it, it does kind of become a feeling of comfort and safety; knowing it is there when you need it vs. not having it if you did need it. I always sleep with it on, even when I feel like I have “good days”. It just makes me lungs not work as hard and therefore, it gives my heart a bit of a break too.

I am so glad the responses from people were helpful for you re: your Esbriet use. Let us know how you continue to manage over the next few days (if you’re comfortable doing so of course). Goodluck!

Charlene

[gil]

Hi Charlene and Shaw,

First, I am about 500 miles from Las Vegas so it isn’t that close or that far.

Shaw, this is one of my favorite photos of Red Rock, I felt like it was a little oasis in the middle of the desert.

Charlene, my day is going good, best day in two weeks or so.  I’m sorry the weather is causing breathing difficulties, our illness is not a compassionate companion. I suspect March – May will be bad for me, it is pollen time and I know I will have breathing issues.

Yes, I will update you after my visit to the IPF doctors.  BYW The photo is near Shaw’s home.

 

 

[gil]

I could not post photo from my computer drive so here is a link to the Red Rock photo, the place is near Las Vegas. My favorite place in that area is Valley of Fire, I love going there and camping under clear skies makes you feel connected to the universe.

https://photos.app.goo.gl/46i2oScCW20ON7By1

 

 

[Charlene Marshall]

Oh my gosh Gil, what incredible photos! I can only imagine what it would feel like standing within the landscapes of those images…wow! Did you wear a mask when you were there Gil, with the potential blowing sand? I was just thinking about how my lungs would fare in a place like that. It looks incredible though. Shaw, do you know where this is then?

Thanks for the kind words Gil re: the weather – I couldn’t agree more, our disease is definitely not a compassionate (or considerate) companion. I hope March – May isn’t too bad for you, and that the breathing issues remain within control. Have you had a dry season this year, where they anticipate the pollen might be worse than other years? I hope not for your sake.

Goodluck with your upcoming appointment. I just received confirmation that I go back to the Pulmonologist and Rheumatologist on February 28th. That will be a long day for me to see both specialists, but I suppose it’ll be good to have it over with.

Stay tuned Gil, I’m about to update the ‘Hobbies’ forum with some amazing photos for you!
Cheers,
Charlene

[gil]

Charlene,

I did not wear a mask, it wasn’t windy where I was, but it was very windy not far from me, I could see the dust storm but it did not affect me. It was spring so it wasn’t hot either, Death Valley can get very hot during the summer and sometimes the wind is so bad the sand may actually damage your car’s paint, I don’t get out of the car when that happens.  Also, on windy days one can leave the valley and go to higher ground and avoid the sand storms.  I usually like visiting the desert in the spring and sometimes I am lucky and the desert is blooming with flowers and that is a treat.

 

[Charlene Marshall]

Hi Gil,

Thanks for sharing, I’m glad the sand didn’t seem to bother you. I wonder if it would me? I think I’d be scared to find out, and I am feeling a bit worried about being on the beach at my cottage this summer, especially on windy days. Last year it didn’t really impact me (although the really hot, humid days did) so hopefully I’ll be okay as this spot is truly my ‘safe haven’, and I love being on the beach. Unfortunately it is a great lake, and although the water is pretty clean, there are occasions where ‘do not swim’ signs are posted due to E.coli exposure. I want to remember to ask my Doctor about that this year, as I wouldn’t knowingly swim in something that has a warning sign on it, but in the event that I/officials didn’t know it was in the water after I swam in it, I’d be curious to understand more about how this could impact me.

That would be a treat I agree, it would be beautiful sight to see the desert filled with flowers! I can’t imagine wind that would be so strong it would cause sand particles to damage paint. Wow! Your weather sounds so different than ours.

I forgot to ask you Gil, what is your absolute favourite season? I would assume, based on what I know about you so far, that you would like spring but maybe not due to allergies? Looking forward to hearing. 🙂

Charlene

[gil]

Charlene,

“although the water is pretty clean, there are occasions where ‘do not swim’ signs are posted due to E.coli exposure”

I am sorry to hear that, so far I have not seen such signs, I hope people stop polluting our waters.  As for the sandstorms, they do occur but not where I live, I live hours away from the desert so the sand doesn’t bother me.  You guessed correctly, my favorite time is spring, as my condition worsens winter may become my favorite season.  I really like this time of the year because Orion is visible and since childhood I have loved looking at it, especially with my telescope. It has been over a year since I stopped taking my telescope,  I can still carry the weight but it is too tiring so I leave the telescope at home. I should sell it as I am unlikely to take advantage of it..

PS,   how do you post an image, I tried the image button but it didn’t work for me when I used my computer drive as the “source” – must the image be online?

 

[Charlene Marshall]

Hi Gil,

Thanks so much for your response. Yes, it is sad because Ontario does have some beautiful great lakes and my cottage is on one of them. The water usually is pretty clean, but yes, probably about 2-3 times each summer there is an e.coli warning posted, discouraging beach-goers to swim in the water. I also hope people stop polluting our waters!

I’ve never been to a desert, although it is somewhere I want to go if I can ensure the sand won’t bother my lungs. I did most of the east coast of Australia from south to north and someone suggested I go back down through the middle to see the most breathtaking deserts. I wanted to do this but didn’t get the chance. Maybe someday.

I can’t imagine looking at the sky (based on the photos you sent me) through a telescope, I bet that would be amazing! I’m sorry to hear about the difficulty in carrying the telescope though, that is a hard thing to accept. I was going to make a post about how people manage to carry the things they need during the day, with their IPF. For me, when I go to work, I need my lunchbox, my purse, my portable 02 concentrator (which has a separate trolley with wheels) and usually something for work, like a briefcase. I’m really struggling to carry all of this in now, and even if I get a little cart to carry it all around it, I still have to move it from my car to the cart. This is getting really tough for me…

With regards to adding photos, yes it can be a bit tricky. Click on the image that looks like a photo above and then insert the URL where the photo is saved from. I haven’t been able to figure out how to upload an image from my computer into the link, unless it is already online somewhere. Once you copy and paste the web URL into the link , the photo should upload into the conversation where it is being added. Hope this helps?

I hope you’re having a nice weekend. It is a long weekend here in Canada, we have tomorrow off so I’m looking forward to a nice, quiet day at home.

Charlene

[gil]

Charlene,

“For me, when I go to work, I need my lunchbox, my purse, my portable 02 concentrator (which has a separate trolley with wheels) and usually something for work, like a briefcase. I’m really struggling to carry all of this in now, and even if I get a little cart to carry it all around it, I still have to move it from my car to the cart. This is getting really tough for me..”

That is tough indeed, I think it is a good idea to make a post of this and I also think this would make a great column and a photo would be great; this can be part of the promotional video you are making.

[Charlene Marshall]

Hi Gil,

Thanks so much for your comments and ideas! I like the idea of writing a column about this, and will definitely make a forum post about it tomorrow (Tuesday) to obtain others’ thoughts on how they manage with all the things they need to carry during the day. Surely I am not the only one who struggles with this. Great idea, thank you!