PPFE

Hi Tamjam,

Thanks. Looks like the FB PPFE Group was created in January of 2018.  I’ll send a request to join also.  Joe

 

Me too-thanks for information!

Va

Hi,

Has anyone had success in joining this PPFE Facebook page?  

Cheryl

I haven’t. The administrator must be inactive. I guess we’ll have to start our own group. 

Thanks for your reply.  Facebook is having a bad time right now. I guess they will come out of it okay.  Our PPFE group has been kind of quiet for a bit.  I’m sure folks are busy.  Hoping everyone is doing well.  

Best regards. 

Hi all,

I have been busy at work and a few other things. I'm still hanging in there and I hope you all are doing well. Looking forward to warmer weather just hope it arrives soon.

Hello, 

I am very glad that you are participating and sharing ideas and things that help you personally.  In regards to your item #2:  I too can briskly walk great distances on flat ground, but give me a big hill or a bike to ride, and I quickly become winded. PPFE can progress so slowly at times that I can’t determine if some of my symptoms are due to aging or due to the chronic condition. 

Thanks very much for sharing your thoughts. I greatly appreciate it and find this very helpful. 

Best regards, 

Cheryl

Hello,

Thanks for your information on PPFE-would you be willing to share with us how you arrived at your diagnosis?  Tests, dates and how long you’ve been diagnosed.  Also how your Drs. treat  this disease and transplant possibilities.  

Thank you so much!  Va

Hi Andersbelgium,

Great tips, thanks for sharing.

I am in the Atlanta GA. area and have experienced that slightly cooler less humid weather works better for me. Hot and humid not so good.

During allergy season, when pollen count is high, I avoid being outside for more than 2 minutes, enough time to go in and out of my car. In addition, I always turn on my AC and have it blow directly on my face, it helps me breathe deep and increase my oxygen intake (I am on 2L-3L oxygen 24/7).

When I have a dry cough, my throat is usually dry, so cough drops help it stay moist, and I use lozenges by TheraBreath, helps produce more saliva, works great, and yes it is very minty 😁.

I avoid crowded and dusty places, anywhere where theres strong odors, smoke, pollution, construction etc.

I sense ot pretty strong in my lungs.

Hope this helps

Z

Hi Anders, I love Belgium- particularly Ghent!  I have found that eucalyptus essential oil and peppermint  can be very helpful when inhaled in steam. I know that steam vaporizers can be problematic for harboring bacteria, but I don't really understand why since steam is known to kill bacteria, Anyway, when I have nights when PPFE makes my breathing almost impossible, I put 5 or 6 drops of eucalyptus oil into the special diffusing compartment of my vaporizer and breathe the steam, and it really helps me to be able to breathe more deeply. Also, you can do it in a pan of water on the stovetop, if you keep an eye on it. I hope this helps.  Lucretia

Thanks for sharing your personal experiences with PPFE. It helps to know I'm not the only one out here and others are having the same experiences!

Thanks, Tamjam for the update. I too recently received a message back from Claire. I think that she is doing a wonderful thing in carrying on the work that Mash started. I hope to figure out how FB works and be part of the both the private and public groups.  Hearing their reminds me of Joni Mitchell’s song, “Both Sides Now.”  Such inspired and poetic lyrics: I’ve seen clouds, love, and life from both sides now.  I’ve often spend hours and sometimes all day listening to music on You Tube.  It really helps the whole healing process.  Does Music help you? Anybody else?

Peace,

Joe 

3 May 18, 4:32pm

 

Correction: Hearing their story reminds me of Joni Mitchell’s song, “Both Sides Now.”

Joe

Hi Joe! I love music and I really like to sing along too but I don’t have enough air. I squeak out a word here and there. Has anybody else notice Trouble singing? I’m in pulmonary rehab now and doing well with that but then I still get really short of breath doing regular activities of daily living. I have noticed I have better leg strength to go up steps and that is wonderful! My pulmonologist has been speaking with Dr. Southern and he recommended I be evaluated and established with a transplant program so they are working on that. They feel the 2 local ones will reject me because of my GI disease and feel due to the GI transplant program in Cleveland I may have a better chance there. We’ll see. Hope everyone is doing well! I was excited to see a patient condition page for PPFE on Royal Brompton webpage that Claire shared on the FB group page. I was so Wow about it! It is definitely needed. 

Hi,  Enjoyed the conversation about music/singing. Agree with Tamjam, I get a little breathless when singing. Later today, I am going to check out the Royal Brompton Web page on PPFE.  Hope everyone is doing well. Cheryl

Hey Joe, Music helped me deal with things all my life until I got PPFE. I was a singer and now I have a hard time listening to lyrics but instrumental music still does wonders. Joni Mitchell is possibly the best lyricist who ever lived, though(my opinion) I was fortunate im 2016 to be able to perform at the National Folk Festival and some others in the southeast. My last performance was in France, so it all ended well. I think the gift of this disease is that it does force us to think a lot and weigh options and attitudes and perspectives. It isn't something I could have planned for, but it is proving to be a grand lesson in "winging it"! 

Hi Tamjam. I answered Joe's post above about singing, but I don't see it. I was a singer and was just beginning to have some successes when I found out I have PPFE. I can't sing anymore because of the lack of breath. I believe if I hadn't sung and practiced so often, my condition would have gotten much worse, much more quickly... so sing and squeak while you can!

 Hi Tammy, Lucretia and Cheryl,

Tamjam, it’s great that you will be evaluated by Dr. Southern and the C.C.  I enjoy listening to music, but as far as creating it, I didn’t mean to imply that I could really sing, not even when my lungs were much more healthy would I have said that I could sing — I can’t quit seem to reach the notes. Twenty-five years ago I only made it through my seminary choir experience because everyone else pulled me along. I can hear music in my head, but it never comes out the same way.  The listening/hearing side of the equation works well enough, the breakdown comes on the singing side.  To be honest, even 13 months after transplant, singing uses up lots of energy and air; I run out of steam before the end of a song.  Listening to music really helps emotionally. I guess the key here is to let the loss of ability help transform your consciousness instead of going down the path of resentment and excessive self pity for what is being lost. Let the facts of your current medical condition wash over you like waves upon the shore and allow the shoreline to evolve and change our options, attitudes and perspectives (as Lucretia put so well) without being swept out to sea by the undertow.  It’s so wonderful that you were/are a singer, Lucretia. Maybe you could hum instead of sing.  My wife and I saw Judy Collins perform on 3/27/18.  At 78 years of age her voice is still so beautiful. I hadn’t known much about her or of her connection to Leonard Cohen, but when she sang, “Suzanne,” I just melted. Since then, I’ve been listening to Leonard Cohen on You Tube.  Life puts in front of us, according to Eckhart Tolle, the very thing that is needed for our consciousness to evolve. Mysterious paradox.

Ring the bells that still can ring

Forget your perfect offering 

There is a crack in everything

That’s how the light gets in

from Anthem by Leonard Cohen.

I’m off to Pulmonary Rehab now. I just want to  say that the explanation of PPFE on Brompton Hospital’s website is excellent.

Peace,

Joe

5 May 2018, 2:04pm Pennsylvania time 

Hi Cheryl,

Maybe you can help me figure out how to get on the Facebook PPFE support group page and the Royal Brompton Web page on PPFE. I am not good with computers and I am not able to access either. I hope you are doing well. I tried to answer something you had written a couple of months ago, but I guess I did something wrong,

Lucretia, I sent you a private message with the Brompton Hospital PPFE Page Link.  I’m putting it here for everyone’s convenience:

http://www.rbht.nhs.uk/patients/condition/pleuroparenchymal-fibroelastosis/

I guess that I didn’t know what day it was earlier today when I dated my post as May 5th instead of May 4th. 

Joe

Hi,

i like the Brompton PPFE Web page. Everything about the condition summarized in one place. UK folks are fortunate in my opinion. About a year ago, I contacted the U.S. Pulmonary Fibrosis Foundation, and they had nothing specifically pertaining to PPFE. I need to check back with them. 

Kind regards,

Cheryl

Thank you Cheryl,

I hope you have been doing well.

Funny you mention it Joe, humming is a good exercise for the lungs, someone introduced me to it a while ago. It's a type of yoga for breathing and lung cleansing. (Bhramari = type of Indian bee; pranayama = breathing technique) The exhalation in this pranayama resembles the typical humming sound of a bee,

As for music and singing, I've always wanted to learn an instrument, never happened, but now thinking of harmonica, music therapy lung patients is known to improve their breathing, It turns out that playing the harmonica can be a great therapy for COPD patients. The repeated pattern of breathing in and out through the instrument can help patients to become aware of their breathing patterns. There is time for everything

Z

I howl with my dog now, daily. It is extremely therapeutic and satisfies the same primal need as singing did. My Bodie has Cushing's disease and he struggles with his breathing too. Howling brings us comfort and joy.

Hi Joe, I forever struggle to stay in sync with this site! I never can seem to be in the current month. Anyway, I just came on to check on your progress, and I hope you are continuing to improve! You are an inspiration and you represent hope in dealing with this devil disease. Have a nice day!

Hi Lucretia, 

I’ve chased my tail many times trying to find posts on this site, better yet, thinking that I had posted a response only to learn much later that it didn’t actually post at all. I’ve also responded in the wrong places.  And I wish that the site date stamped everyone’s entry instead of giving you how long ago something was written. Here are some things that I’ve discovered:

1.    Select anybody’s name anywhere that is highlighted in blue and you will go to their public profile page. From the Profile Page you can see all of their activity and select any one of their posts. This is where, when you are signed in, you can create a narrative on your profile and post a picture if you want to. 

2.    At the very top of the main page just above the first post from Cheryl (a year ago, from when she started the discussion), Select “23 Users”. You will get an alphabetical List of all participants.  Select a name and it will take you to their profile.

3.    At the top of the main page just under the advertisement, there are two scroll-down boxes where you can order the discussion from oldest or latest post first or jump to specific pages (1-15 at present).

4.    I know what you mean by not knowing what month of the discussion you are in.  It took me a long time to figure it out. In fact, I’m learning as I’m writing.  If you order the pages with latest first, and select page number 1 in the other pull down menu, wouldn’t you think that you would see what you sent to me just a couple of hours ago? Instead you see Claire’s post from a month ago. Follow the replies under Claire’s post and you will see a blue line on the left-hand side of the page. The blue line extends until there are no further replies to Claire’s post. I see that you were the last to reply to Claire. This I believe is called a string or chain. You will see that the blue line stops also with your reply. the next newest string was started by Tamjam (about two months ago).  You have a most recent post to me (joe) at the end of this second string also.  So the discussion is ordered by string, either oldest or latest first; however, replies within a given string (blue line) are always ordered as they are posted in real time: oldest to more recent. It appears very illogical and confusing until figure this out and learn what the blue line does. It separates strings within a given discussion. 

5.    To start a new string, you would reply to Cheryl’s initial post.  The newest string would be positioned ahead of the one at the top, which is currently Clair’s.  So before you post a reply decide whether you want to start a new string, respond to the end of a string or respond to someone in the middle of a string. I wish that I had figured this out a year ago.  

Your question to me helped me further understand how the discussion works because it inspired me to explain it in writing.  You have helped me by asking. And I hope that I have helped you. 

Joe 

Correction: The Users List is organized by order of most recent user post and not by  alphabetical order as I had said. I’ve also noted that the my profile picture shows up on the main page  users’ link after I post an entry, then it is replaced as others post subsequent entries. A little useless info. I suspect there is a help page somewhere on how to navigate this site. 

Joe

This is so useful!  Thanks very much. Cheryl

Hi Jo, thanks for this. I have copied and pasted it in case I never find it again! LOL. Maybe you could tell me how to send someone a message privately. I gather this is possible but can't see how. Thank you in anticipation. Julie

Hi Jo, Apologies I have jsut found how to do this by going to person's profile and there is the meassage opportunity.

Thank you Julie