Hi Charrlene ,

i remember having this talk with you many months ago . Since October 2019 I’ve worn a mask nothing exotic just plain surgical mask  ( all different colors ) but wear them just the same . I have never once noticed nor can I say I can care less what others think of me . My life , not theirs , my comfort not their . I believe… Read more

Yes , started out at 300 , now 200

Hi Charlene , how’s your day going so far ? Over the lag , or are you dealing with it .

charlene I’m on Facebook messenger just type in my name and we will be in touch

And a happy thanksgiving to you young lady ,

so good to hear that your holiday was what you wanted and needed it to be .

thankfullness where do you start and where does it end ? For me it starts with God , with out him I would not have the attitude I do .

of course family and friends , if you knew my family you would realize why we need to… Read more

Hi Charlene.

Have you notice any difference in breathing salt air ?

Have a great time Charlene !

You friend , Chuck

Hi Charlene ,

hope your have a great time   😎❤️

Youll have to let me know how sea air is working for you ,

as always your friend ,

Chuck

Hi Mark ,,

i also suffer from heart disease , rumatoid arthris ( hips shoulders and knees ) and its active , diabetes . The list is long , what do I do , I use to forms of morophin , pill and liquid , so that’s what I deal daily .

i would love to see Hawaii through your eyes !

Be safe my friend

Chuck

Hi. My friend ,

cramps cramps cramps , oh I’m so sick of them I can’t stand them . My hands but it’s my calf muscles that torture me ! They get so bad esp, my left calf muscle to the point it affect my Achilles . Well more 02 I thought the same thing and to be honest it did help at first , but about a week later it stopped no more relief… Read more

Hi Charlene ,

always happy to read your blog . How have you been ?

Lim not to bad . As far as changing cannulas , about a year ago I came across a super deal on super soft cannulas ( 150) in a case on eBay , very soft ! As far a changing them , when the cannula starts to feel stiff that’s when I change it . When I first started the Vna that… Read more

Howdy , I live in Conewango Valley, it’s way in the southern tier of New York , this is the closest blog that I know of ,mean across it by accident ,, my nearest hospital is 20 miles away

Hi Charlene

Kindness , I believe random acts of kindness is necessary for the soul ! My wife and I raised our children on ” random acts ) of kindness not only helps others believe that no matter how bad you feel or how bad the world seems there still much good left ! It also is good for your soul especially if you are disabled and can do… Read more

Hi Charlene it,has been a long trail I’ve been for these months. In this time I found out ( not surprised ) that I do not qualify for a lung transplant . Also found out that my immune  system terribly compromised ! So n these past months I have fought off several infections one almost landed me in the hospital , but I managed to (power through… Read more

@rayna-meryl

I have an ingogen 3 continuous flow concentrator I use 24/7 it goes to 5 hope it helps

Hi my friend ,

i want you to know that I’m still with you ! It has been a long time hasn’t it ? So let me try and catch you up , I was and still am very sick , things went from good to bad , bad to good to where  I am right now first of all I can tell you that I do not like hospitals one bit ! Lousy food ( lol) . I have developed new things (… Read more

Well hello Charlene ,

It has been a really long time ! But I’m hear , alive and back to my base line ! The winter had taken its toll on my health in not so healthy of a way . But that being said hardly a day  went by that I missed reading the blog 😎 . While being treated for a upper respitory  infection my doctor had me start a med called… Read more

I have never had a full ” 6 minute test” , while going from his office to the treadmill I dropped to 77-78 he said he’d seen enough ( lol ) and the 02 was ordered  24/7 , 2 litres but I’m up to 3-4 . From april2016 till now ! Catscans ensued and IPF Diagnosis in short fashion .

Your friend as always

chuck

Hi Charlene ,

been a bit of time on my end . Lung transplant , I mentioned that I’ve had many surgeries , it’s not about the surgery it’s self , it’s the after care that concerns me . I know there are many people that have gone thru the transplant and are now in  recovery mode.

My concern is the recovery , the traveling involved ( many miles… Read more

Hi Charlene ,

there is plenty for me to respond on within the forum , but it will have to wait some . Right now at this moment fatigue is hampering my joining many of the topics . I’m very tired , not feeling my happy self , and I feel like I’m losing ground . Love going back and forth with you , but for now I’m over and out !

Your… Read more

I’m going to take my time on this one 😎 , I have many questions , a ton of concerns , and some serious soul searching to do .

ive been thru many surgeries , even quad bypass , and as of right now I’m uncomfortable with it .

give me a day or so ,

your very good friend,

chuck

Hi Charlene ,

you know me , I’m in !

So let me give you a slight update of progress , last week I had my 3 month appointment with my pulmonologist , and catscan , the results are that my IPF has stayed the same , no movement . 😎 . So what I’m dealing with mostly is the side effects of this disease .

ive decided at the suggestion of the… Read more

I have held off with my answer ,to be honest I’ve chosen during this trial in my life to be as polite as my nature will allow me . Let me explain, at one point in my life I could be a smart ass , in fact I was very good at it , kinda like a don rickles . Um you could say you never knew what was going to come out of my mouth at any… Read more

Hi to all in this discussion ,
Why I fight , well for one I’m not going to stand by cover up and wait for my passing . There are times I just can’t get out of bed , but there are more times that I force myself to get up !
That’s the fight , is it exhauting at times but that is when I fight ( or as I mentioned to Charlene ) I power through… Read more

Charlene ,
As always nice to hear from you , always glad to hear your doing the best you can !
We are having about six people over for a lasagna dinner , I told my wife that I hoping all goes well .
Example I have not been able to crawl out of bed till almost noon at times .
I hope. Your dog heals well ,
Listen as you can see I’m typing… Read more

Well Christmas was good , guiet , very quiet . , as far as New Years I haven’t celebrated that for what seems a million years ( lol) .
January 6th all the kids and grandchildren will be here , that will run me down somewhat . But it will be fun .
So do me a big favor , if you go out new yrs , please be careful !
So these past weekS I have been… Read more

I prefer the phrase ” fight ” why ? Because , if I have to live with a terminal illness , well I’m going to fight it for as long as I can . It’s my nature , it’s just me !

Hi Charlene ,
Well as we discussed about rebellion , you hit all my triggers for this act .
Foods ( chicken wings , chips , and an assortment of others.
Medications , I take so many day and night , that it just seems like a chore day in and day out , so there are times that I skip .
Appointment , I’ll cancel in a heartbeat , these are times… Read more

Wow ! 😎 Vacation ! Very nice I wish you a great time on your escape from it all , and stay healthy please !
I’m sure there are those out there that because of different circumstances ” rebel” you have the same reasons I have when that happens to myself .
How do you put that out there so I ( we ) can let others know their not the only ones… Read more

Hi David ,
Tried your suggestion , I’m usually at 3-4 , so I went up to 5 for a day or so , the down side at this time didn’t work for me , the up side is this may be something I could try again down the road .
Thanks for the info
Chuck

Hi Charlene , and a hap , hap , happy birthday to ou 🎉🍰
Topicals ! Yes I did mention that I use them . Now where I live is in the middle of Amish country ( catturaugus county NY ) anyways they make a cream or paste I guess you would call it , it’s a mix with cayan pepper in it , the more pepper the more heat . It does help , I just took a… Read more

It does Charlene , for example this morning my doctors nurse called , all I could manage were yes or no answers ,that’s not me , but ipf it seems has stolen the show ( for now )
Your friend ,
Chuck

Hi Charlene , for joint pain I just use aspercream it helps !? My doctor recently started me on morphine ( not a big fan ) I don’t use it a a lot . Tell me what do you know about cbd oil , I ask because you seem to have your finger on the pulse of different things . Yea/nay ? .
Charlene I do have to tell you I’m not a down hearted person… Read more

Hi Charlene , Chuck Harrison here,
What you are describing has been with me for a more than a month now ! It’s ,madding , I feel I have no control over these side effects whatsoever . I try powering thru them but to no success . It is hard and exhausting just to write . I nap , and nap , then sleep all night .the pain in my joints is driving… Read more

Wow , I did not know that , very interesting to say the least ! Me I do have ipf .but I find your testimony very interesting

Hi Charlene , just wanted you to know I’m still here 😎. Things aren’t going to bad for me right now I’ve had a few anxious moments . But like I said I’m still here . I’ll write later when time permits and give you the details .
Missed. You and the forum .
Chuck

Hi Charlene , Chuck Harrison here how do I find this site on facebook

Hi Charlene ,
Yes I do get the flu shot and it is recommended by my pc . I want to pick your brain here for a minute , I’m pretty concerned about being in stores during this season also , what I was think is going to a mask when out , you know those whit masks , what’s your thoughts , me I’m don’t really care what people would think or how I… Read more

Yes it is Hungarian lavender , I works , yes we are all different in mind and body . I do try different ways of doing things , I get a lot off the blog and tried several things , I also try different oils especially when I’m feeling anxious, some work others not so much 😌 There are times when a cool wash cloth over my eyes and quiet just as… Read more

Hi Charlene , to be honest with I’m just a ham and egger , I really don’t get what your saying I guess . But one of the things I do is think of things that have to be done before winter , so my mind is always in gear so to speak . With that being said what I do a lot to relax is use lavender , I rub on my temples , under my nose , and even… Read more

Yes I have a pic at home I use , it has a twenty five foot leash on it and I’m able to get around pretty good . At night I transfer over to a fifty foot line up the 02 and I’m good . We work it so I get out on the porch .
I have missed being on the forum , I’ve been struggling for a hit , but I’ll be ok .

Because of my insurance I get to carry around the “E “tanks . I have a choice I can have one of the small concentraters but go without large one I have at home , for overnight and stuff they will not cover both . I’m at 4.5 liters so when you come down to it the ” E ” tanks  are the better choice . But they do get heavy and are cumbersome.

Ill keep this short as I’m not doing great at this moment .all I can say about your post Charlene , I can relate to almost all of that. Have the best day possible 😎

Chuck

I’m very happy to hear of the support you receive! It kinda makes me feel more comfortable to know of one who struggles has a system of checks and balances. I’m sure you know what I mean . I have an appointment this Wednesday with my pulmonologist.

Stay as spirited as possible !