My Trache – progress report
Question:
It’s now two weeks since my operation and I owe the newsgroup an update on how things are going. This has been a difficult week. I left hospital with a developing infection in my lungs which rapidly became much worse. After seeing my GP last Sunday (poor man had had a very busy day in the surgery) I took a course of strong antibiotics. These overcame the infection but left me with some nausea and dizziness. My sleep started last week as poor, but improved slightly despite the antibiotics. Coughing has been the main problem. If coughing was an Olympic sport I’d have an automatic entry into the British team! Gentle coughing coats the inner surface of the inner cannula with mucus which, after a period of time, starts to run back into the trachea and starts a coughing fit. The length of that period of time determines how long you sleep before the coughing fit wakes you up. In hospital I managed 1-2 hours before waking. Over the last week at home this has improved to 4-5 hours, giving a better sleep pattern. One night I managed 7 hours of uninterrupted sleep and had two dreams, one pleasant and one a full-blown nightmare. This involved the people I worked with before I lost my job, and who were extremely unkind about my illness. I hope the wound will heal in time, but for the moment I despise some of my colleagues for what they did. Last Friday, due to a misunderstanding, I forgot to take my morning dose of Serzone (200mg) but thought I *had* taken it. During the day I rapidly descended into a deep and very severe depression with thoughts of suicide. This was relieved when I took my evening dose of Serzone and I felt much better on Saturday. On the bright side, the *quality* of my sleep seems to have improved. I’m not tempted to use the CPAP (I probably couldn’t anyway) but force of habit has made Jan offer to fill my humidifier bottle and made me look for my Conjo headgear! I find getting off to sleep difficult because of anxiety about the next coughing fit, but once I’m asleep I seem to sleep reasonably well. The infection has cleared up and healing of the skin around the stoma (the hole through my neck) has started again, in fact it’s nearly fully healed. It presumably needs to be completely healed before the permanent Montgomery trache tube is installed, so the delay in obtaining the Montgomery item is not yet critical. I still have some difficulty speaking, but I know that this is down to the temporary Shiley tube. I expect things will change dramatically for the better when the Montgomery tube is fitted. So far, I feel I’ve had all the downside and niggling problems of a trache without seeing too many of the benefits. Yet I’m optimistic, sure in the knowledge that a Montgomery tube (which is based on different principles to the highly invasive Shiley) will make a big difference. I expect it will be fitted within the next two weeks. Will those people who have emailed me in the last few days please note that my ISP’s mail service has crashed and I have not been able to read my mail for nearly a week. I’ll get to read all the messages eventually, but my ISP’s estimates of when this might happen seem to retreat one day every day! Thanks once again for your support. — Tony Polson, North Yorkshire, UK
Response:
Tony, Thanks so much for the progress report, and for honestly describing what your recovery has been like so far. Sorry to hear of the difficulties, and I hope they’ll soon resolve. I know the others on the group have said the Montgomery is like a night and day difference from the Shiley, so hang on….help is on the way! I wanted to ask you about the pain aspect of your surgery. It sounds like coughing and the lung infection have been the worst aspect for you, but how would you describe the pain from the surgery. I’m assuming you had prescription pain medicine. How long did you need to take it? You mentioned some difficulty speaking. Is it painful to speak, or is it that your voice has changed in some way? And, if I might ask, what type of maintenance is required during this initial post-surgery time? Suctioning? Humidification? Thanks again for the post–I was wondering how you were, and I’m sure many others were as well. Best wishes for continued healing and improvement in sleep. Tim W.
Response:
Hi Tony, Since your email is down for the moment I will try to suggest a few things in regards to coughing. Sorry Tony I won the coughing trophy–7 months of it. I just hung in there and as you know I am glad that I did. Check all this out with your ENT before trying any of it. I assume you are capping off during the day. I tried that and found the same thing you did the secretions start up the inner cannula then run back down then coughing. You might ask if you can try keeping it uncapped for a time to see if the secretions are easier to manage. Normally I would not suggest this but since you are changing tubes in a few weeks it might not make any difference. When you feel the secretions going up the inner cannula try to cough around the trach so it comes up to your mouth. I apologize to those who think this is gross. If all else fails uncap it and cough through the tube. I always use 4 X 4 4 ply gauze instead of Kleenex. Anything you put at your trach should be as much lint free as possible. I know all this is annoying but hang in there. Now for meds that might help. Humibid LA. or Humibid DM–generic name Guaifenesin this makes the secretions thinner and easier to move. Guaifenesin is the main ingredient in cough syrup–Robitussin makes one that has just Guaifenesin. You also might ask about Benadryl. My ENT suggested that not as a nightly med but just when I was worn out from not sleeping in order to get a good nights sleep. Hang in there. If I can help let me know. Carolyn – Hide quoted text — Show quoted text -Tony Polson wrote: > Coughing has been the main problem. If coughing was an > Olympic sport I’d have an automatic entry into the British team! > Gentle coughing coats the inner surface of the inner cannula with mucus > which, after a period of time, starts to run back into the trachea and > starts a coughing fit. The length of that period of time determines how > long you sleep before the coughing fit wakes you up.
Response:
Tony, Thanks for that progress report. You are in my thoughts and prayers daily. I am so sorry about all that mucous but I understand it does clear up when your body gets adjusted to the foreign object. Just hang in there. You have been doing that well for a long time, so keep it up. Best wishes. Em
Response:
Hi Tony, Just to let you know, Steph and I are wishing you a speedy recovery. Looking on the positive side, I have snipped you posting. Things are looking up, I know you will overcome the problems! In article <3748fd64.126…@news.freeserve.co.uk>, Tony Polson <n…@scalby.freeserve.co.uk> writes [...] – Hide quoted text — Show quoted text ->My sleep started last week as poor, but improved slightly [...] >In hospital I managed 1-2 hours before waking. Over the last week at >home this has improved to 4-5 hours, giving a better sleep pattern. One >night I managed 7 hours of uninterrupted sleep [...] [...] >and I felt much better on Saturday. >On the bright side, the *quality* of my sleep seems to have improved. [...] >The infection has cleared up and healing of the skin around the stoma >(the hole through my neck) has started again, in fact it’s nearly fully >healed. [...] >things will change dramatically for >the better when the Montgomery tube is fitted. [...] >I’m optimistic, >sure in the knowledge that a Montgomery tube (which is based on >different principles to the highly invasive Shiley) will make a big >difference.
The other Montgomery users have confirmed this too. Lets hope you get fitted with it soon. All the best, Paul — Paul Kemp anti – spam/UCE measures follow:- :@: E mail :@: Home Page: http://www.kemp.demon.co.uk/ :@: :@: paul@kemp. :@: ICQ Pager: http://wwp.mirabilis.com/1914266 :@: :@: demon.co.uk :@: This is *NOT* my Email address: ab…@demon.net :@:
Response:
Thanks for the report and god speed on your recovery. Hopefully it is downhill from here and soon you will be telling how great it is to sleep and how good you feel especially since cpap did not work for you. – Hide quoted text — Show quoted text -Tony Polson wrote: > It’s now two weeks since my operation and I owe the newsgroup an update > on how things are going. > This has been a difficult week. I left hospital with a developing > infection in my lungs which rapidly became much worse. After seeing my > GP last Sunday (poor man had had a very busy day in the surgery) I took > a course of strong antibiotics. These overcame the infection but left > me with some nausea and dizziness. > My sleep started last week as poor, but improved slightly despite the > antibiotics. Coughing has been the main problem. If coughing was an > Olympic sport I’d have an automatic entry into the British team! > Gentle coughing coats the inner surface of the inner cannula with mucus > which, after a period of time, starts to run back into the trachea and > starts a coughing fit. The length of that period of time determines how > long you sleep before the coughing fit wakes you up. > In hospital I managed 1-2 hours before waking. Over the last week at > home this has improved to 4-5 hours, giving a better sleep pattern. One > night I managed 7 hours of uninterrupted sleep and had two dreams, one > pleasant and one a full-blown nightmare. This involved the people I > worked with before I lost my job, and who were extremely unkind about my > illness. I hope the wound will heal in time, but for the moment I > despise some of my colleagues for what they did. > Last Friday, due to a misunderstanding, I forgot to take my morning dose > of Serzone (200mg) but thought I *had* taken it. During the day I > rapidly descended into a deep and very severe depression with thoughts > of suicide. This was relieved when I took my evening dose of Serzone > and I felt much better on Saturday. > On the bright side, the *quality* of my sleep seems to have improved. > I’m not tempted to use the CPAP (I probably couldn’t anyway) but force > of habit has made Jan offer to fill my humidifier bottle and made me > look for my Conjo headgear! I find getting off to sleep difficult > because of anxiety about the next coughing fit, but once I’m asleep I > seem to sleep reasonably well. > The infection has cleared up and healing of the skin around the stoma > (the hole through my neck) has started again, in fact it’s nearly fully > healed. It presumably needs to be completely healed before the > permanent Montgomery trache tube is installed, so the delay in obtaining > the Montgomery item is not yet critical. > I still have some difficulty speaking, but I know that this is down to > the temporary Shiley tube. I expect things will change dramatically for > the better when the Montgomery tube is fitted. > So far, I feel I’ve had all the downside and niggling problems of a > trache without seeing too many of the benefits. Yet I’m optimistic, > sure in the knowledge that a Montgomery tube (which is based on > different principles to the highly invasive Shiley) will make a big > difference. I expect it will be fitted within the next two weeks. > Will those people who have emailed me in the last few days please note > that my ISP’s mail service has crashed and I have not been able to read > my mail for nearly a week. I’ll get to read all the messages > eventually, but my ISP’s estimates of when this might happen seem to > retreat one day every day! > Thanks once again for your support. > — > Tony Polson, North Yorkshire, UK
Response:
Tony, it will take a few months for the coughing to gradually subside and talking to become stronger. It takes this long for your body to cease reacting to the tube as a foreign body. Breathing through a humidifier helped control the coughing during the night. I also had intermittent infection problems for six months after surgery. Take it from me Tony, it gets better. However, it will take some time before you will feel at one with your trache tube. Best regards, Ron M.
Response:
On Mon, 24 May 1999 07:32:50 -0600, in alt.support.sleep-disorder "Tim W." <t…@NOSPAM.com> wrote: >Thanks so much for the progress report, and for honestly describing what >your recovery has been like so far. Sorry to hear of the difficulties, and >I hope they’ll soon resolve. I know the others on the group have said the >Montgomery is like a night and day difference from the Shiley, so hang >on….help is on the way!
Thank you Tim, your good wishes are much appreciated. Please see my posting under the subject "My Trache – progress report 2" for an update. >I wanted to ask you about the pain aspect of your surgery. It sounds like >coughing and the lung infection have been the worst aspect for you, but how >would you describe the pain from the surgery. I’m assuming you had >prescription pain medicine. How long did you need to take it?
The pain from the surgery was minimal. On the afternoon following the operation, which took place in mid-morning, I was still under the influence of the opiates that were given intravenously during the operation and recovery. Since then I have used over-the-counter painkillers which contain 500mg paracetamol and 8mg codeine. At first I took 8 per day (2 pills every 4 hours, max 8 per day) but now I take 2 in the morning and two at night. >You mentioned some difficulty speaking. Is it painful to speak, or is it >that your voice has changed in some way?
The initial tube was a Shiley size 10 which completely blocked the airway between the site of the trache and the larynx. I was completely unable to speak as I could not get air to pass up through my larynx. This was changed for a Shiley size 8 which still partially blocks my airway above the site of the trache. The only way air can get to my larynx is through the fenestration in the Shiley tube, and this lies partly against the rear wall of my trachea, so air flow is restricted. The Montgomery tube should avoid this problem completely, because it only extends into the trachea by the thickness of its inner flange. It is merely a lining to the stoma with a flange at each end. It does not protrude into the airway by any greater distance than the flange thickness. >And, if I might ask, what type of maintenance is required during this >initial post-surgery time? Suctioning? Humidification?
Suction in hospital for 2-3 days. Humidification? I’m using a special "bib" which is made of absorbent fabric and covers the end of the tube. It’s about 8 inches (20cm) square and ties around the neck like a child’s bib. When you exhale, it collects some of the moisture on the fabric. When you inhale the theory is that it takes the moisture back in. It seems to work as I cough much, much less with the ‘bib’ on. >Thanks again for the post–I was wondering how you were, and I’m sure many >others were as well. Best wishes for continued healing and improvement in >sleep.
You too, my friend. We are all journeying towards the same destination, some at different speeds, others by different routes. But the goal of good, refreshing sleep is something we all share. Kind regards, — Tony Polson, North Yorkshire, UK
