Guest guest Posted June 23, 2012 Report Share Posted June 23, 2012 You could try emailing dr bach about it. He probably would have some really good suggestions. Maybe you are getting pneumonia from all this mucus? :-( sorry to hear things are so hard, doug. Love, N On 6/23/12 4:35 PM, " " <doug696@...> wrote: > I have had two serious bouts of pneumonia since Feb, my last most of June and > May. Docs say I'm aspirating and have failed 3 swallow studies. I thought I > was doing everything right pureeing all my food, using Thickit etc. I never > cough or choke while eating. I just cant give up one of the few pleasures > left to me in life. My last stay in the hospital I was badgered and coerced > into getting a trach. Worse decision I've ever made! I'm in constant pain, > can't leave the house because of copious amounts of foamy saliva I produce all > day...I can fill a 20oz cup easy. I also have an unquenchable thirst I obsess > all day. Last but not least it took what little swallowing capability away. > BTW its a metal. Are there any options barring complete removal? Doug > > > > ------------------------------------ > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2012 Report Share Posted June 23, 2012 Doug, So sorry to hear all your problems. I aspirated about a month ago and needed antibiotics which made me so weak I couldn't pick u p my arm to do any thing. I am finally getting my strength back. I'm glad to be back on the computer. Wish I could help you that trac sounds terrable. Are you still living alone? My loving best wishes to you. Love, Pamela ---- <doug696@...> wrote: > I have had two serious bouts of pneumonia since Feb, my last most of June and May. Docs say I'm aspirating and have failed 3 swallow studies. I thought I was doing everything right pureeing all my food, using Thickit etc. I never cough or choke while eating. I just cant give up one of the few pleasures left to me in life. My last stay in the hospital I was badgered and coerced into getting a trach. Worse decision I've ever made! I'm in constant pain, can't leave the house because of copious amounts of foamy saliva I produce all day...I can fill a 20oz cup easy. I also have an unquenchable thirst I obsess all day. Last but not least it took what little swallowing capability away. BTW its a metal. Are there any options barring complete removal? Doug > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2012 Report Share Posted June 23, 2012 I had a lot of secretions too when I first had my trach. Started with a Shiley and then had a . I hated my trach too for a long time but in the long run, it has saved my life many times. I only used my trach for suctioning when I was ill. My husband had the idea to make a trach button as the market options were bleak. Since having my custom button, my infection rate is incredibly low. I posted pictures on the SMAFriends site (2/2007). Now when I need to suction, I put the catheter directly into the trach opening with no problems. To make one you'd need measurements and a local machine shop. My guy did it for free when he realized what it was for. Hope this helps. I am wishing you the best.  Lori ________________________________ From: <doug696@...> Sent: Saturday, June 23, 2012 4:28 PM Subject: Pneumonia Woes  I have had two serious bouts of pneumonia since Feb, my last most of June and May. Docs say I'm aspirating and have failed 3 swallow studies. I thought I was doing everything right pureeing all my food, using Thickit etc. I never cough or choke while eating. I just cant give up one of the few pleasures left to me in life. My last stay in the hospital I was badgered and coerced into getting a trach. Worse decision I've ever made! I'm in constant pain, can't leave the house because of copious amounts of foamy saliva I produce all day...I can fill a 20oz cup easy. I also have an unquenchable thirst I obsess all day. Last but not least it took what little swallowing capability away. BTW its a metal. Are there any options barring complete removal? Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2012 Report Share Posted June 23, 2012 One more thing, I tend to aspirate at night so I have to turn my head as much to the left as possible and must lay flat without a pillow with a roll of under my neck.  Lori ________________________________ From: Lori G <lorig713@...> " " < > Sent: Saturday, June 23, 2012 5:24 PM Subject: Re: Pneumonia Woes  I had a lot of secretions too when I first had my trach. Started with a Shiley and then had a . I hated my trach too for a long time but in the long run, it has saved my life many times. I only used my trach for suctioning when I was ill. My husband had the idea to make a trach button as the market options were bleak. Since having my custom button, my infection rate is incredibly low. I posted pictures on the SMAFriends site (2/2007). Now when I need to suction, I put the catheter directly into the trach opening with no problems. To make one you'd need measurements and a local machine shop. My guy did it for free when he realized what it was for. Hope this helps. I am wishing you the best.  Lori ________________________________ From: <doug696@...> Sent: Saturday, June 23, 2012 4:28 PM Subject: Pneumonia Woes  I have had two serious bouts of pneumonia since Feb, my last most of June and May. Docs say I'm aspirating and have failed 3 swallow studies. I thought I was doing everything right pureeing all my food, using Thickit etc. I never cough or choke while eating. I just cant give up one of the few pleasures left to me in life. My last stay in the hospital I was badgered and coerced into getting a trach. Worse decision I've ever made! I'm in constant pain, can't leave the house because of copious amounts of foamy saliva I produce all day...I can fill a 20oz cup easy. I also have an unquenchable thirst I obsess all day. Last but not least it took what little swallowing capability away. BTW its a metal. Are there any options barring complete removal? Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2012 Report Share Posted June 23, 2012 I'm really sorry to hear how tough the transition to a trach has been. When I got mine I was 6 years old (I'm almost 35) but I remember how much mucous flowed out around it during the first few months of getting it. I have always used a Shiley brand trach so I can't speak of using the metal brand. I am able to drink and eat with my trach, is the reason you don't by choice due to aspiration? Have you considered putting IV pre-cut gauzes around the stoma to " seal " it so mucous won't flow out? I put one underneath the " wings " of the trach at night to prevent airflow leak while I'm ventilated. As for the thirst quench--would filling your mouth with some liquid while holding a suction catheter to immediately suction it back out to empty your mouth help? I don't know, just an idea? ~a From: <doug696@...> Subject: Pneumonia Woes Date: Saturday, June 23, 2012, 5:28 PM Â I have had two serious bouts of pneumonia since Feb, my last most of June and May. Docs say I'm aspirating and have failed 3 swallow studies. I thought I was doing everything right pureeing all my food, using Thickit etc. I never cough or choke while eating. I just cant give up one of the few pleasures left to me in life. My last stay in the hospital I was badgered and coerced into getting a trach. Worse decision I've ever made! I'm in constant pain, can't leave the house because of copious amounts of foamy saliva I produce all day...I can fill a 20oz cup easy. I also have an unquenchable thirst I obsess all day. Last but not least it took what little swallowing capability away. BTW its a metal. Are there any options barring complete removal? Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2012 Report Share Posted June 24, 2012 Does the inner cannula always have to be in my airway? If I removed it might my swallow be more normal? Thanks for the answers so new to me and I hate it, Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2012 Report Share Posted June 24, 2012 Doug* Did you just get a trach? I only use my inner canula when I'm hooking up to the vent.otherwise i just cap my trach off. If ur using a Passey muir speaking valve then you need the i/c. I have had my trach for 20 years so if you need any advice or have a question, just write my name in subject line as I don't read every single email in my box!  Jodi & Juni Digital Scrapbook Artist & Service Dog  From: Doug <doug696@...> Sent: Sunday, June 24, 2012 4:37 PM Subject: Re: Pneumonia Woes  Does the inner cannula always have to be in my airway? If I removed it might my swallow be more normal? Thanks for the answers so new to me and I hate it, Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2012 Report Share Posted June 24, 2012 I don't have a cannula--maybe someone else on this list has one? ~a From: Doug <doug696@...> Subject: Re: Pneumonia Woes Date: Sunday, June 24, 2012, 5:37 PM Â Does the inner cannula always have to be in my airway? If I removed it might my swallow be more normal? Thanks for the answers so new to me and I hate it, Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2012 Report Share Posted June 25, 2012 I got my trach 4 years ago during a bad case of pneumonia. What I've learned that if the trach hurts and you get a lot of saliva/mucus, something is wrong. Part of it might be because your trach is so new, but you could still get it checked out. I also cleaned the trach hole a lot more in the beginning, when the skin was still healing. Have you considered just chewing to get the taste and then spitting out the food? - Venla R SMA II 24.6.2012 0:28, kirjoitti: > > I have had two serious bouts of pneumonia since Feb, my last most of > June and May. Docs say I'm aspirating and have failed 3 swallow > studies. I thought I was doing everything right pureeing all my food, > using Thickit etc. I never cough or choke while eating. I just cant > give up one of the few pleasures left to me in life. My last stay in > the hospital I was badgered and coerced into getting a trach. Worse > decision I've ever made! I'm in constant pain, can't leave the house > because of copious amounts of foamy saliva I produce all day...I can > fill a 20oz cup easy. I also have an unquenchable thirst I obsess all > day. Last but not least it took what little swallowing capability > away. BTW its a metal. Are there any options barring complete > removal? Doug > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2012 Report Share Posted June 26, 2012 Hi Doug - was wondering where you'd been! Sorry things have been tough. Carla Quote Link to comment Share on other sites More sharing options...
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