Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 I have had a trach tube for nearly 14 yrs (+2 months in 1983) and I have learned to live with it, because for me there are no choices. My larynx is very narrow and it can´t (ever?) be operated. Besides my bronchus is floppy. With a PEF-meter I usually get a reading 100+-20. I can´t run, swim/dive (or go to a hot Finnish sauna, even >210 F) and I (should) avoid dust and very cold air. It gives many less positives things and I would take it off at once, if possible, but for some of us it´s a necessity. I don´t wan´t to blame or shoot anyone, but could we all try to avoid expressions like " Thank´s God I don´t have it " or " It´s the most terrible thing I could imagine... " , e.g. when talking about a trach tube. I´m quite used to it, but for those, who have to take it some day, it makes additional fear and stress. My biggest problems are respitory inflammations and mucus, but I don´t know, what´s the role of the trach tube, because I have bronchiectasy (sp?) too. And I know I could improve my hygiene, I touch the tube anytime with " dirty " hands. Most people, who have a trach tube, have had cancer, their larynx has been operated and they can hardly speak. They are not the right reference. Ystävällisin terveisin, Arto Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 Arto Toikka wrote: > > I have had a trach tube for nearly 14 yrs (+2 months in 1983) and I have > learned to live with it, because for me there are no choices. My larynx is very > narrow and it can´t (ever?) be operated. Besides my bronchus is floppy. > With a PEF-meter I usually get a reading 100+-20. > I can´t run, swim/dive (or go to a hot Finnish sauna, even >210 F) and I > (should) avoid dust and very cold air. > It gives many less positives things and I would take it off at once, if > possible, but for some of us it´s a necessity. > I don´t wan´t to blame or shoot anyone, but could we all try to avoid > expressions like " Thank´s God I don´t have it " or " It´s the most terrible thing > I could imagine... " , e.g. when talking about a trach tube. > I´m quite used to it, but for those, who have to take it some day, it makes > additional fear and stress. > My biggest problems are respitory inflammations and mucus, but I don´t know, > what´s the role of the trach tube, because I have bronchiectasy (sp?) too. And I > know I could improve my hygiene, I touch the tube anytime with " dirty " hands. > Most people, who have a trach tube, have had cancer, their larynx has been > operated and they can hardly speak. They are not the right reference. > > Ystävällisin terveisin, > Arto > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > http://click./1/936/1/_/32049/_/954884135/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't dear arto i so apologise if i was insensitive about the trachea tube-and to anyone else who has this-i had a really hard time giving birth to my son-at which time i had tubes in everyplace possible for along time-since then im scared of any invasive mechanism-please forgive me if i caused you any discomfort-my cousins husband has a trach from cancer-he cannot eat,drink or swallow and now cannot speak-perhaps others are as ignorant as i as to the ramifications of having one-i guess i should dig out an anatomy book-im truly sorry if i said anything hurtful-april Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 Hello Arto, from Texas here, I feel the same way you do about the trach and having to have stents put in. Believe me if i could change the way i am today and go back to my normal life 3 years ago i would. But i cant and so if have to live with what i have and make the best of it. Because for now, i have to live with a trach and have a permanent stent. I feel good. There is nothing like being able to breath or walk up stairs with out gasping for air when it's all around you. No offense to any one. I love the support that this group gives. But I laid up in ICU for two weeks, put to sleep with morphine and other medications and for the first week the only outlook for me was death. Without this stent i would be dead. If you dont need one then pray to God and thank him. When i was coming to from all of the medications I didn't know what was going on. All i knew was my whole family was around my bed praying that I wouldn't die. I cried the first time i looked in the mirror and saw this big long ugly scar on my neck and a big long tube sticking out of my neck. I couldnt talk for 1 month. I had no motor skills. I was so weak. I went through 1 1/2 months of rehabilation ( occupational, physical therapy for 3 hrs a day). This is the scariest most frightning experience that i have ever experienced. So I think it was April a new RP member asking question about stents and trachs and might have to have one. All medication and different machines are different for everyone. Everybodys body is different. Just because one RP patient responds well to a treatment doesnt mean It's going to be the same for the next. You have to get you some good specialists, ask them questions about alternatives thearpy. Decide whats best for you, not whats best for somebody else. Because last year my only alternative was death. I'm not trying too shoot anyone either. I love this group, I am so glad i got back on the computer and started looking for more information on this disease because before every time i read something I would just cry and would just leave the computer. Thanks to Roy for responding back to me so quickly and making me feel comfortable, and making me feel that he really cared and understood my feeling. Now I can talk about this disease with out hurting and feeling sorry for myself. This experience has made me a much stronger person. Thank you all for listening, This group is the best Love you all in Texas Re: trachea Arto Toikka wrote:> > I have had a trach tube for nearly 14 yrs (+2 months in 1983) and I have> learned to live with it, because for me there are no choices. My larynx is very> narrow and it can´t (ever?) be operated. Besides my bronchus is floppy.> With a PEF-meter I usually get a reading 100+-20.> I can´t run, swim/dive (or go to a hot Finnish sauna, even >210 F) and I> (should) avoid dust and very cold air.> It gives many less positives things and I would take it off at once, if> possible, but for some of us it´s a necessity.> I don´t wan´t to blame or shoot anyone, but could we all try to avoid> expressions like "Thank´s God I don´t have it" or "It´s the most terrible thing> I could imagine...", e.g. when talking about a trach tube.> I´m quite used to it, but for those, who have to take it some day, it makes> additional fear and stress.> My biggest problems are respitory inflammations and mucus, but I don´t know,> what´s the role of the trach tube, because I have bronchiectasy (sp?) too. And I> know I could improve my hygiene, I touch the tube anytime with "dirty" hands.> Most people, who have a trach tube, have had cancer, their larynx has been> operated and they can hardly speak. They are not the right reference.> > Ystävällisin terveisin,> Arto> > ------------------------------------------------------------------------> GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%> Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!> http://click./1/936/1/_/32049/_/954884135/> ------------------------------------------------------------------------> > hi and welcome. maybe we can come up with answers that our doctors can'tdear artoi so apologise if i was insensitive about the trachea tube-and to anyoneelse who has this-i had a really hard time giving birth to my son-atwhich time i had tubes in everyplace possible for along time-since thenim scared of any invasive mechanism-please forgive me if i caused youany discomfort-my cousins husband has a trach from cancer-he cannoteat,drink or swallow and now cannot speak-perhaps others are as ignorantas i as to the ramifications of having one-i guess i should dig out ananatomy book-im truly sorry if i said anything hurtful-april hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Dear Arto, I to have had a trach for almost a year. got itout last christmas. I cannot syai was not greatful to getit out. bt now it seems that i might have t getit again i really am ok withthis Once i got usd to it, the worst thig was hat it made things tasts funny. I ould talk effectively with it. when wke up twithit in th hospital, i did noteven knowthat i ould eat with it. iwas so greatful when the doctor said i could aeat anything i wanted. my hospital room looked wlike a commisary. even the nurse laughed. i was rying to find a food that tasted good and had a lot f calories--the nurse told me if i did noteat she would put me back on an ng tube I als dd not follow hygiene as god as i could. although i had a Passe-Muir attahment to the trach that alowed me to talk, itmae it harder for me to breathe, so when i wanted t talk i just coered my blow hole. Iknow hat was not he most sanitarything. I never got an infetion when i was n it. I SAVED MY LIFE. and f that what it takes again. so be it. love denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Harvey wrote: > > Hello Arto, from Texas here, I feel the same way you do > about the trach and having to have stents put in. Believe me if i > could change the way i am today and go back to my normal life 3 years > ago i would. But i cant and so if have to live with what i have and > make the best of it. Because for now, i have to live with a trach and > have a permanent stent. I feel good. There is nothing like being > able to breath or walk up stairs with out gasping for air when it's > all around you. > > No offense to any one. I love the support that this group gives. > But I laid up in ICU for two weeks, put to sleep with morphine and > other medications and for the first week the only outlook for me was > death. Without this stent i would be dead. If you dont need one then > pray to God and thank him. When i was coming to from all of the > medications I didn't know what was going on. All i knew was my whole > family was around my bed praying that I wouldn't die. > > I cried the first time i looked in the mirror and saw this big long > ugly scar on my neck and a big long tube sticking out of my neck. I > couldnt talk for 1 month. I had no motor skills. I was so weak. I > went through 1 1/2 months of rehabilation ( occupational, physical > therapy for 3 hrs a day). This is the scariest most frightning > experience that i have ever experienced. > > So I think it was April a new RP member asking question about stents > and trachs and might have to have one. All medication and different > machines are different for everyone. Everybodys body is different. > Just because one RP patient responds well to a treatment doesnt mean > It's going to be the same for the next. You have to get you some good > specialists, ask them questions about alternatives thearpy. Decide > whats best for you, not whats best for somebody else. Because last > year my only alternative was death. > I'm not trying too shoot anyone either. > I love this group, I am so glad i got back on the computer and > started looking for more information on this disease because before > every time i read something I would just cry and would just leave the > computer. Thanks to Roy for responding back to me so quickly and > making me feel comfortable, and making me feel that he really cared > and understood my feeling. Now I can talk about this disease with out > hurting and feeling sorry for myself. This experience has made me a > much stronger person. > > Thank you all for listening, This group is the best > Love you all > in Texas > > Re: trachea > > Arto Toikka wrote: > > > > I have had a trach tube for nearly 14 yrs (+2 months in > 1983) and I have > > learned to live with it, because for me there are no > choices. My larynx is very > > narrow and it can´t (ever?) be operated. Besides my > bronchus is floppy. > > With a PEF-meter I usually get a reading 100+-20. > > I can´t run, swim/dive (or go to a hot Finnish sauna, even > >210 F) and I > > (should) avoid dust and very cold air. > > It gives many less positives things and I would take it > off at once, if > > possible, but for some of us it´s a necessity. > > I don´t wan´t to blame or shoot anyone, but could we all > try to avoid > > expressions like " Thank´s God I don´t have it " or " It´s > the most terrible thing > > I could imagine... " , e.g. when talking about a trach tube. > > I´m quite used to it, but for those, who have to take it > some day, it makes > > additional fear and stress. > > My biggest problems are respitory inflammations and mucus, > but I don´t know, > > what´s the role of the trach tube, because I have > bronchiectasy (sp?) too. And I > > know I could improve my hygiene, I touch the tube anytime > with " dirty " hands. > > Most people, who have a trach tube, have had cancer, their > larynx has been > > operated and they can hardly speak. They are not the right > reference. > > > > Ystävällisin terveisin, > > Arto > > > > > ------------------------------------------------------------------------ > > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as > 2.9% > > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > > http://click./1/936/1/_/32049/_/954884135/ > > > ------------------------------------------------------------------------ > > > > hi and welcome. maybe we can come up with answers that our > doctors can't > dear arto > i so apologise if i was insensitive about the trachea > tube-and to anyone > else who has this-i had a really hard time giving birth to > my son-at > which time i had tubes in everyplace possible for along > time-since then > im scared of any invasive mechanism-please forgive me if i > caused you > any discomfort-my cousins husband has a trach from cancer-he > cannot > eat,drink or swallow and now cannot speak-perhaps others are > as ignorant > as i as to the ramifications of having one-i guess i should > dig out an > anatomy book-im truly sorry if i said anything hurtful-april > > ------------------------------------------------------------ > [Where you set the price!] > ------------------------------------------------------------ > hi and welcome. maybe we can come up with answers that our > doctors can't > > ---------------------------------------------------------------------- > > ---------------------------------------------------------------------- > hi and welcome. maybe we can come up with answers that our doctors > can't hi veronica im april-not a new member-just havent posted in awhile-thankyou for your story-you sound like a real trooper and are pretty inspiring-i am wondering what sort of breathing problems others have had-what the symptoms were and what lead up to needing machines or other assistance required to breathe-ive had dry cough periodically and felt like shallow breaths were all i could take-last week i woke up in middle of night and couldnt get air in or out-but didnt last too long-im wondering if this is how it starts or are other symptoms more typical-and how long did breathing problems persist before aid was needed-my neck has been sensitive to touch for years-i feel faint when dr touches throat-is that typical?-thanks-april Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Hey Arto, here, I have a plastic "cuffless fenestrated tracheostomy tube" - it's a size 6 cfn- whatever it means. But my respratory therapist in the hospital showed me how to clean my trach. (1) always wash hands first with a antibacterial soap, i use dial. I have Trach cleaning kits to. I soak the inner canula in peroxide/ half water first. I have a plastic cup that i only use for this. I know they told me i needed to make sure that i kept my trach area clean and wash my hands before touching it, because of infection. And with me being on immune suppressant medications my body is not able to fight germs as well. Having a trach is not so bad. If anyone has to get one, It's not the end of the world. I thought it was, i thought people would think i was gross. (I'm young thats where the immature thinking comes in at). Or that i had a infectous disease. But i always get the opposite reaction. I have people telling me they know someone with one. People will hear me cough and immediately get me water to drink. The always ask me if i'm okay. They also think i've had throat cancer. It does seems time consuming to go through the process of keeping the trach cleaned throughout the day. Sometimes i want to take it out and clean it w/out washing my hands too. Re: trachea Dear April,Don´t feel guilty, I haven´t "bookmarked" you or anyone else and no message triggeredme. I just got a feeling, that many of us are afraid of a trach tube or getting it.My larynx became narrow when looking for the dx, because my doc wasn´t willing to giveme Prednison before the dx, and it is narrow and inflammated all the time and willbe??? So it can´t be operated and the trach tube is a must for me.Do/did you have silver or pastic tube? I use pure silver tube now, before it a silvercoated, but the coating begins to loosen quite soon.My speaking valve is of silver, too and it´s not totally proof, but I have tried aplastic one, similar to Passey-Muir, and I think they are too good. There is noleakage and it´s much harder to breath out. When thinking only speaking, the plasticcap is better.I use to remove mucus by taking the inner cannula off and using a tampon (in this casea stick with cotton on the top) to "dig" the mucus off. That´s not very hygienic, butsaves me from coughing. You just can´t make this operation anywhere.I tried a plastic tube last week, but with a plastic cap it was too proof, and mytrachea became painful, probably when coughing there´s only my narrow larynx for airpressure (compared to a metal cap with some leakage). So I returned to silver.I boil the inner cannula 10 min. twice a day and change it totally once a week. Thismay be too often, but for a plastic tube the desinfection is not so easy at home.I´m almost awake now, hopefully my text is readable.Hyvää yötä - Good night!Arto hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
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