[Kate E]

I know this is an older thread, but I’ve started to experience the constantly runny nose due to using oxygen 24/7. It’s really, really annoying and embarrassing, too. Just wondering if anyone ever tries things the OTC Claritin or Zyrtec to dry things up, even if it isn’t due to allergies??

 

[Kate E]

Oh, I confess that this just makes me want to crawl into the back of a closet somewhere. 🙁

Sorry, but the thought of being even more confined is REALLY discouraging.

[Kate E]

Thanks, @steve-dragoo. I’ll email Andy with my questions.

 

[Kate E]

@steve-dragoo I have one other question for now. I’d like a better understanding of what the chart for programmable lasers is recommending for a protocol before I start calling places around here to see if anyone will do this for me. If one was using that chart, would they be using all of those settings that are listed, from ‘capillary to difficult healing’? Each for 25 seconds? You’d mentioned that your practitioner had used the wrong timing for your first 3 sessions. Thanks for any clarification you can give.

 

[Kate E]

Thanks to Steve and Charlene and Dr Hall and John for responding! Much appreciated. @drandyhall this is what I can tell you. When you go to the protocol on your summit website, it directs you to ‘download and print’ down at the bottom. When I did that, it converted it to a pdf, and there’s info missing on the protocol page in the pdf. The chart is missing that refers to the settings for a programmable laser, but it also removes several other lines. I would suggest that you have your son correct that, if he can. I can print the protocol correctly if I just print from the webpage without downloading it first, so I’ll do that for now. Just thought you’d want to know.

 

[Kate E]

Thanks, Charlene!

 

[Kate E]

Hello, all. I’m finally considering pursuing laser therapy. My pulmonologist has said that he would read Andy’s protocol, and last night I downloaded it. Question, though: when you look at the protocol online, you get a chart for programmable lasers and some other info under the protocol section, but when you download it as a pdf, that chart doesn’t show up on the download. If I’m giving the protocol to someone with a K-laser, do they need all of that info or just what shows up on the pdf? Thanks for any help you can give. @drandyhall

[Kate E]

Hi, Charlene,

First of all, I’m very sorry to hear that you’ve developed PAH as a result of IPF. From my own experience, I find that it’s emotionally pretty challenging to hear yet another diagnosis on top of the first one. Each time that happens for me, I have to find my way through on so many levels, and it’s not easy.

I, too, have developed PH, though mine is secondary to fibrotic chronic hypersensitivity pneumonitis, one of the ILDs. I’ve been having annual echos since 2015, and unfortunately the PH is progressing as the cHP progresses. As of yesterday, it’s been recommended by the team at my pulmonary clinic that I would have a right-heart catheterization to get a more accurate read of the pressures in my heart, as the pressures from the echo are only estimates. I’m not sure whether I will choose to have that procedure or not. To be honest, I am reaching a point where I am getting really worn out with procedures and all that comes with them: concerns about risks from the procedure itself and then the need for more appts and more evaluations to decide what the response should be to the results that are found during the procedure! After 7 years of managing this illness, it does all get a bit wearing.
I did want to mention that, just a few days ago, I watched a half hour FB Live presentation from National Jewish Health that was originally titled something like ‘SOB and Pulmonary Hypertension’. If you go to their FB page and scroll down to May 8, you should still be able to watch it. You might find it helpful, tho’ they didn’t talk much about SOB. Here’s a link to the page: https://www.facebook.com/NJHealth/

Wishing you all the best,

Kate

[Kate E]

@johnstyles  @drandyhall

John, you referred to acupuncture points being in an Egyptian study. Can you tell me how to get to that?

thanks,

Kate

[Kate E]

Charlene, thank you so much for raising this issue. I’ve been bothered by the ‘fight’ and ‘warrior’ and ‘battle’ language for as long as I’ve been on the various online support groups. I do understand that it works for other people, but it doesn’t work for me at all. I think that I HAVE been fighting my illness for far too long, and in many ways all it has done is to add to the exhaustion and the stress. And I find that there doesn’t seem to be much of a middle ground that’s acknowledged (in general) between ‘fighting’ and ‘throwing in the towel’. For myself, I’m aiming for that middle ground. I’m not at all ready to give up doing my best to be as healthy and happy as possible, but I also want to negotiate the whitewater rapids that come with as much clarity and discernment as I can muster. That means choosing some medical interventions and declining others, choosing some alternative treatments and not others, allowing myself to have days where I do ‘throw in the towel’ for the day or the evening, allowing myself to have a full range of emotions in response to the difficult times, and challenging myself to get better and better at finding support and asking for help without giving up that place in me that cherishes my independence.

Thank you also for responding to Lucky Keith about the ways in which it can be harder to have PF than to have cancer. I also feel that I don’t want to say that in public because people really don’t understand. I just wish that those of us with ‘rare’ diseases had more visible support.

Kate

[Kate E]

Thanks, Robin!

[Kate E]

Robin,

Could I ask about how many things were tested for in the HP screening blood test that you had at JH?

thanks,

Kate

[Kate E]

Hi, Lynn,

I was diagnosed with fibrotic chronic HP in 2012 based on the results from a lung biopsy done here in Madison, WI, and then the sample was sent to Mayo for confirmation. I had some blood work done to identify an antigen, but it was all ‘unrevealing’. With hindsight, what I would have done differently at the time was to actually go to Mayo for their opinion about treatment plans, and I would have had my house tested thoroughly for mold(s).

He has since retired, but back in 2014 I was able to have a consult with a pulmonologist here who was considered to be a regional expert on HP. His feeling was that this may have started for me when I was a teen (I’m now in my 60’s) when my brother raised pigeons in our garage. What Dr. Meyer said was that, if you have the genetics for this, it can take very little to get it started, and then it can ‘simmer’ for years until it becomes more full-blown. Also, other exposures can add to the problem.

So, for me, I feel that the pigeons may have flipped the genetic switch, but then years of remodeling old houses added to it significantly with exposures to moldy basements and also all the fumes (esp. paint) that come with remodeling. I painted a LOT of interiors and this was well before paints got at least a little better.

I don’t mean to make this such a long story, but I guess the point I’m trying to make is that I don’t think it’s always just one thing, and when your lungs and immune system have gotten reactive in this way, I think you have to be particularly careful of what might set it off/ make it worse. On one of the other online support groups for HP, 55 people responded to a survey question about ‘Do you know your trigger/antigen?’ I realize that is a very small sample, but  41% said no. Almost 30% said birds, about 18% said mold, a few said dust, and about 7% just marked ‘other’. Unfortunately, the survey didn’t allow folks to mark more than one option.

In one clinical review article that I have, though, from 2012, there is an extensive list of causative agents that ranges from moldy shower curtains to hot tub mists, tho’ everything listed falls into 3 categories: fungal and bacterial, animal proteins, and insect proteins. And like you, I also looked up Naproxen Sodium/Aleve and was very surprised to see that it can affect the lungs. Yes, so much to be aware of, and it can be both daunting and overwhelming.

I would be very carefully about remodeling, both in terms of exposure to molds if they’re there and also exposure to fumes and off-gassing from the products installed. Folks seem to do better if they move out while that is happening, but that isn’t always possible.

Sorry for being so lengthy, and I hope there’s something here that’s helpful. I would get as much testing/info as you can, both in terms of blood work and also with your home.

All the best,

Kate

 

 

[Kate E]

Mary, I’m very curious about your reference to Aleve. Did your doc think the Aleve had been a player in your PF? I haven’t heard of that before.

Charlene, I don’t know if getting rid of the down items has helped or not. Not that I can tell in any discernible way, but exposure to birds and feathers is the most commonly identified cause of HP, so it only makes sense to take that precaution. One of the commonly used names for HP is ‘pigeon breeder’s disease’, tho’ there are many other possible antigens, and many people never know what got their HP started. (forgive me if I’m writing things that you already know)

with care,

Kate

[Kate E]

I’m just getting caught up on this discussion. Thanks to everyone who’s part of it so far, and especially thanks to Robin for sharing your report and experience with having your house tested. Just a few comments for now…

Ellen, I think it’s interesting that your pulmonologist would have recommended moving to new construction. My lungs react incredibly badly to the kind of off-gassing that comes with new construction, and that would never be an option for me. I had also used so many down-filled things for decades (jackets, vests, comforters, pillows, etc), and it wasn’t until I got to my 2nd lung doc that I understood that I really needed to get rid of everything with feathers.

I do live in an older home with a basement, and over time I’ve thought that moving to a condo that would be at least on the 3rd floor above ground might have been a smart thing to do, but there’s so much that goes into the decisions as to where and how we live. And it seems that so many folks on other online support groups (for HP) have moved, and it hasn’t seemed to help. For me there just haven’t been simple answers to some of the questions that arise with HP, esp. with unknown antigens.

Wishing you all the best in this new year.

[Kate E]

Robin, I would also really appreciate seeing the report from the industrial engineer if you’d also be comfortable emailing it to me. I was diagnosed with HP with fibrosis in 2012, and it has slowly progressed. I’ve never had my house tested, tho’ I’ve considered moving more than once. It simply hasn’t worked out to do that. I wonder how you found the engineer that you hired? Thank you for anything that you’re comfortable sharing. I really appreciate having happened upon this thread this morning. My email is: [email protected]

Thanks again,

Kate (in Wisconsin)

[Kate E]

Thank you very much for this discussion, and thanks for all of the links. All are much appreciated, and I’ll hope to look into them more this weekend.

[Kate E]

Thank you, Jimbo. I have used a neti pot in the past, and I will try it again. Thanks so much for responding.

 

 

[Kate E]

Judy, thank you so much for responding. I spoke with a pharmacist today about this problem, and that’s exactly what he recommended. I really appreciate hearing from you that it works for you. I will get it prescribed soon and hope that it does the trick.

[Kate E]

@johnstyles

Thank you for the link to the Egyptian study!

Kate