chuck-harrison
Forum Replies Created
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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 now with this virus people should start wearing them . I expect designer masks will be out soon .
miss you much , and think of you often
Chuck
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Yes , started out at 300 , now 200
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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 be studied !
Im still that happy man yo met awhile ago on this forum , I still my best to power through these stages of ipf .
But I do have to say I’m thankful every day I wake up , your friendship !
I still have one question how do we let everybody know when things are getting bad for all in our community ?
Charlene glad to have you home , your friend Chuck
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Hi Charlene.
Have you notice any difference in breathing salt air ?
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Have a great time Charlene !
You friend , Chuck
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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
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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 .
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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 .tried creams some were so so . Now where we live we are smack dab in the middle of Amish country , we are only one of three ( English ) on our road . We are good friends with many families . We got on the subject of muscle cramps and I referred to myself . They no about my plight , and are very understanding and try to do as much as they can for Rose and I . Any way she had me try two different things , one was called burdock leaves they are a weed that grows along the side of the road . You pick these let the dry and when you go to use them you rehydrate the leaves and put them on the area of pain ! IT WORKS ! It’s not a total cure all but takes a lot of the pain . Now sha also has a rub , I have no idea what it’s called but it is loaded with cyan pepper ( spelling ) and the heat on your ( my calf muscle )is incredible ! I use it a lot . Now I’ll try and get the name of it , and it has an acquired smell . I know that these aren’t on the market but maybe you can do something with this info . Oh btw I finally got my scooter , I’m free !
As always your friend
I hope this writing finds you well
have fun in Hawaii
chuck
Oh
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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 used to supply them were very stiff ( I thought that was the norm ) and I was miserable! My nose would break out in sores behind my ears were getting sore and that is what made start hunting around for a different cannula , to be honest I forget the cost . But on average 3-4 weeks .
wishing well ,
chuck
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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
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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 this makes you feel so good knowing you have just demonstrated just because your disabled you can still make a difference in someone else’s life . You never know that act may lead that person to act randomly and so on and so on.
by the way have missed being in contact with my friend
Chuck
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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 ( I have to stop here for a moment ) to get this far has taken me about 15 mins ! It seems I have developed something called essential tremors started lightly but now they are full blown , that’s why it’s taking so long to type , I tried voice but , it misspells almost everything I say lol , it’s really funny . I want you first to know I’ve missed you ! Though I was tracking the blog pretty good I lost track . I finally got my portable concentrater and that my friend does add freedom , along with that I know have a quad cane ! Like I said allot has changed but you know what I’m a happy man , two or so weeks ago I couldn’t do this ?. I have a developed a sort of dizziness thus the cane , tired of kissing the floor and have given up driving ( great decsion ) more meds but I refuse some because I want to be aware of me , does that make sense ? So now for the big question and what’s been on my heart , how are you ? Travel , puppy , job all that stuff I want to catch up !
Well going to stop here ,
your friend always
chuck
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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 tesalon pearls , within two days my caught was just about gone ? At this writing I’m kinda not all here , but dealing , it was a struggle there for a bit and a fight . I hope this writing finds you doing well . I’m making this short because what I’ve got in mind is to lump all my opinions in one post to cover all the blogs that I’ve read . I will be writing soon , missed your correspondence much .
Your friend
chuck
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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
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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 ) one way , the amount of traveling , and my strength . Concern what happens after awhile my body rejects , and then having to go thru the same thing over again ! Medications , just the whole thing bothers me . It sounds silly but the concern is real for me . The what ifs , I have never been a what if person , now ? For some reason I am . Something just doesn’t feel right to me ! Hope that we can kinda work thru this , it’s not a simple yeah let’s go , get it donE.
Your friend as alaways
chuck
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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 friend
Chuck ,
hope all is well
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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
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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 Doctor have contacted the Cleveland clinic . They called a few days ago and had my first interview over the phone. But I’m not sold on a transplant , reason ? Well when I first inquired about this I was told I was not eligible . So I’m going to go thru the process of test and such and make a decision from there . I’ve had a lot of surgeries since 2010 and recovery has taken longer with each surgery .
soooo , we shall see !
Your friend
chuck
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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 situation .
that being written , that is not me anymore , a while back before ipf I didn’t want to be chuck anymore so I changed , it was hard because there are those out there that need a good tongue lashing . To be sure I have comments thrown at me , sighs , throat clearing , and the all intimidating looks lol , I laugh because I’m very hard to intimidate . So I politely say sorry , excuse me , do you mind , am I holding you up , or I see you have more than me go ahead please . You have a choice with me , and I will make that choice for you . I don’t feel the need to let them know what’s wrong with me . If the 02 tank and scooter is not a big enough hint I have a health problem , then the real problem comes down to the other person . So I’ll continue to be courtiess , and take my time and not be rushed , besides we have other worries , don’t we ?
As always Charlene your very good friend ,
Chuck ,
Ps , trying to load another profile picture , but can’t remember how lol , also I have messenger
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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 those times .
This is the second day of a new year ( happy new year ) and I had to literally at 7am force myself to get up , by the time i got down stairs the fight was over , um I guess I’m saying one battle at a time , how happy I was to do it .
Well had coffee , sat and talked a bit , asked to get help to prepare a tank for me , bundle up and went out a did some target shooting , ? . And tomorrow night I will be at the Sabres game ( this will be a great challenge .
Now as you can tell I am an IPF fighter , I also fight diabetes , heart disease , tremors of a origin they can pin down ( dent institute ) dizziness haven’t figured that one out either , they called these two things sign and symptoms of an unknown origin . For me to fight is what I do ! I am a very happy man , but being human I do dispar at times , I am Chuck and this who I am !
Thank you Charlene I have learned much from you and others on this blog , as is my nature I wish well and love ,
Chuck
Whew now that’s some rambling -
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
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i would love to see Hawaii through your eyes !
Be safe my friend
Chuck
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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 ) these set backs for now . I did get an ingogen 3 concentrator continuous flow and a portable pulse concentrator . It is 5.6 lbs and it has freed me up from the e tanks . The fight now is with insurance for a scooter so I can get around and it is such a battle , it s very maddening ! I have had many falls and my esntial tremors have gotten very bad , to the point I no longer drive , some what disheartening b but now I get to look at all the senerie ? So in reality I’m still that happy guy .
but enough of me . What about you, traveling , still working ? Are you still at your baseline ? Miss you girl
as always your friend
Chuck
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@rayna-meryl
I have an ingogen 3 continuous flow concentrator I use 24/7 it goes to 5 hope it helps