Alex123
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Decision about tracheostomy
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Alex123
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Diane,
Thanks a lot for all the information you provided me in your three posts. Sorry for having taken too long to respond.
I will look into it and I may have some questions for you later.
Thanks again,
Alex
Thanks a lot for all the information you provided me in your three posts. Sorry for having taken too long to respond.
I will look into it and I may have some questions for you later.
Thanks again,
Alex
texastc
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Alex, I will try to help you from my perspective. My wife Tracy faced this decision last summer. She originally didn't want one but when the time came and it gets hard to breathe, there was no choice but to get it.
First, she was sleeping all nite with the BiPap, only except while we were fighting the masks. She also tried the nose thingy, but not happy with it either. She visited in depth with Diane...who in our opinion, knows more than most doctors about all the issues.
First question...like I read above...yes, you can die...general anesthesia yada...yada...yada. Most likely, you will be fine. The procedure itself, is quite routine. It is done many times daily at most every hospital, however usually in emergency situations. Most will have a doctor who is their choice...who puts in most of their required trachs. He/she and their team do it in a matter of minutes. The stay however will be more difficult. The ALS complicates it in the fact that it will be very difficult for you to communicate to us. In our case, the immobility, more complication yet because every move required several people. There had to be a set of eyes on her most of the time because she couldn't call for help.
The hospital staff will train your caregiver or givers...how to physically take care of it for you before they let you out. The care is minimal and easy, especially after the wound heals. Yes, you are more apt to inhale something that can hurt you...if you don't take the proper precautions and use the filter/covers you will have that fit over it, use gloves while cleaning and handling it because it is a direct opening into your lungs...sterility is required.
The trach does not mean that you will now be on the bi-pap 24/7. In fact you will likely find that it is easier to breathe with the trach than thru your nasal piping...less restriction and distance you have to move the air.
The requirement you have been prepped for requiring 24/7 care is because someone has to be available to help you should the trach become clogged or dislodged...and mucus will still be an issue. They will give you medicines to help with the mucus...take it religiously, even when you think you are getting better and could do with less.
It got to where I could leave for a little while as long as I was within range of the call device we used. Now Alex, Tracy was totally incapacitated when we got to this point...much different than you, it sounds like to me. That played into how much time I had to spend with her.
Next...they are going to cut a hole in your throat/windpipe and stick a tube into it. Your body is not going to like it...and will try desperately to get rid of it. The body combats that by making mucus, hoping the disturbance will leave as the body expels the mucus. You won't be able to expel it...therefore the need for suctioning. No one will commit to a length of time it will take for that to ease, as each individual is different. I will tell you from my experience...it will be like a broken bone...in a couple of weeks the worst part will begin to ease, but it will likely be 6 weeks before the wound is totally healed and your body has adjusted to the intruder in its windpipe. Tracy told me...the suctioning doesn't hurt, but it is uncomfortable as the suction machine will remove most air from your lungs for a moment or two. By the six week time, you will have learned to brace yourself for it...and it will become a non issue. Your caregiver/s will be trained and proficient at this before they let you leave after the procedure also.
Durable and non durable equipment. You will have the Bi-Pap/humidifier, with new fittings and hosing...and sanitation with it now becomes critical as well. Our supplies provided new hoses and fittings weekly. A positive here...you will not have to mess with that dang mask anymore...however, you may have to sleep on your back so the hose can hookup and not tug and pull...Tracy was a side sleeper, and this was a difficult transition. You will also have a suction machine...and a good idea to have a backup. I used the backup in the van, plugged into an inverter that was plugged into the cigarette lighter....just like you have to have a backup for the Bi-Pap. Ours had an internal battery backup, good for several hours. The home health care supplier will also provide all of the inner cannualas...catheters(suction lingo hahaha) and help if you need it. I don't know if you have such a supplier, but the hospital will/should hook you up with all these supplies and suppliers before you leave.
Alex, Tracy didn't die from the trach...or the procedure. When we first went in for it, she could still move a little bit...arms especially. It took 11 days, all spent in SICU, to get us to where we were ready to deal with it at home. During that time, she was really incapacitated in the hospital bed. When we got home, she couldn't move anything any more. Her body, took a little longer than most...3-4 weeks, for the need for near constant suctioning to get better. She was very tired by then from the battle. Then a damn bladder infection came...bathroom every few minutes but really only the urge, not needing to go. By then I was slinging/lifting her on all moves/transfers and it was a fierce battle, that eventually required re-hospitalization to get the infection under control. Our PCP suggested the palliative care unit as way to get the help she needed and give me a little breather. Alex, I was wore smooth ass out. When we checked in, she told them/us all that she was done...she was trapped in there and was ready to die. Thanks to an eye-gaze computer, she was able to tell the doctors exactly what she wanted. Hardest place I've ever gone to Alex...but I thank the good lord that she was able to make her own health care decisions for herself, all the way to the end. I would have and desperately wanted to care for her forever, and would have had she let me. At her command, we stopped the peg feedings I had been giving near a year. They gave meds to make her comfortable and I held her til she got there, just as I told her I would.
Alex, I am not a doctor by any means. However, it does not sound to me like you are anywhere near the end. Don't wait too long...the fight is difficult. What they don't say...Don't wait so long that you don't have enough fight left to get thru it. I wish you strength for your battle. Ask me anything friend, I will do my best to help.
tc
First, she was sleeping all nite with the BiPap, only except while we were fighting the masks. She also tried the nose thingy, but not happy with it either. She visited in depth with Diane...who in our opinion, knows more than most doctors about all the issues.
First question...like I read above...yes, you can die...general anesthesia yada...yada...yada. Most likely, you will be fine. The procedure itself, is quite routine. It is done many times daily at most every hospital, however usually in emergency situations. Most will have a doctor who is their choice...who puts in most of their required trachs. He/she and their team do it in a matter of minutes. The stay however will be more difficult. The ALS complicates it in the fact that it will be very difficult for you to communicate to us. In our case, the immobility, more complication yet because every move required several people. There had to be a set of eyes on her most of the time because she couldn't call for help.
The hospital staff will train your caregiver or givers...how to physically take care of it for you before they let you out. The care is minimal and easy, especially after the wound heals. Yes, you are more apt to inhale something that can hurt you...if you don't take the proper precautions and use the filter/covers you will have that fit over it, use gloves while cleaning and handling it because it is a direct opening into your lungs...sterility is required.
The trach does not mean that you will now be on the bi-pap 24/7. In fact you will likely find that it is easier to breathe with the trach than thru your nasal piping...less restriction and distance you have to move the air.
The requirement you have been prepped for requiring 24/7 care is because someone has to be available to help you should the trach become clogged or dislodged...and mucus will still be an issue. They will give you medicines to help with the mucus...take it religiously, even when you think you are getting better and could do with less.
It got to where I could leave for a little while as long as I was within range of the call device we used. Now Alex, Tracy was totally incapacitated when we got to this point...much different than you, it sounds like to me. That played into how much time I had to spend with her.
Next...they are going to cut a hole in your throat/windpipe and stick a tube into it. Your body is not going to like it...and will try desperately to get rid of it. The body combats that by making mucus, hoping the disturbance will leave as the body expels the mucus. You won't be able to expel it...therefore the need for suctioning. No one will commit to a length of time it will take for that to ease, as each individual is different. I will tell you from my experience...it will be like a broken bone...in a couple of weeks the worst part will begin to ease, but it will likely be 6 weeks before the wound is totally healed and your body has adjusted to the intruder in its windpipe. Tracy told me...the suctioning doesn't hurt, but it is uncomfortable as the suction machine will remove most air from your lungs for a moment or two. By the six week time, you will have learned to brace yourself for it...and it will become a non issue. Your caregiver/s will be trained and proficient at this before they let you leave after the procedure also.
Durable and non durable equipment. You will have the Bi-Pap/humidifier, with new fittings and hosing...and sanitation with it now becomes critical as well. Our supplies provided new hoses and fittings weekly. A positive here...you will not have to mess with that dang mask anymore...however, you may have to sleep on your back so the hose can hookup and not tug and pull...Tracy was a side sleeper, and this was a difficult transition. You will also have a suction machine...and a good idea to have a backup. I used the backup in the van, plugged into an inverter that was plugged into the cigarette lighter....just like you have to have a backup for the Bi-Pap. Ours had an internal battery backup, good for several hours. The home health care supplier will also provide all of the inner cannualas...catheters(suction lingo hahaha) and help if you need it. I don't know if you have such a supplier, but the hospital will/should hook you up with all these supplies and suppliers before you leave.
Alex, Tracy didn't die from the trach...or the procedure. When we first went in for it, she could still move a little bit...arms especially. It took 11 days, all spent in SICU, to get us to where we were ready to deal with it at home. During that time, she was really incapacitated in the hospital bed. When we got home, she couldn't move anything any more. Her body, took a little longer than most...3-4 weeks, for the need for near constant suctioning to get better. She was very tired by then from the battle. Then a damn bladder infection came...bathroom every few minutes but really only the urge, not needing to go. By then I was slinging/lifting her on all moves/transfers and it was a fierce battle, that eventually required re-hospitalization to get the infection under control. Our PCP suggested the palliative care unit as way to get the help she needed and give me a little breather. Alex, I was wore smooth ass out. When we checked in, she told them/us all that she was done...she was trapped in there and was ready to die. Thanks to an eye-gaze computer, she was able to tell the doctors exactly what she wanted. Hardest place I've ever gone to Alex...but I thank the good lord that she was able to make her own health care decisions for herself, all the way to the end. I would have and desperately wanted to care for her forever, and would have had she let me. At her command, we stopped the peg feedings I had been giving near a year. They gave meds to make her comfortable and I held her til she got there, just as I told her I would.
Alex, I am not a doctor by any means. However, it does not sound to me like you are anywhere near the end. Don't wait too long...the fight is difficult. What they don't say...Don't wait so long that you don't have enough fight left to get thru it. I wish you strength for your battle. Ask me anything friend, I will do my best to help.
tc
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Alex123
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Hi tc, thanks a lot for sharing your experience and sorry that Tracy and you has to go through such ordeal. Thanks also for your advice. I have a few questions for you.
1) You said "They will give you medicines to help with the mucus.." Were you thinking about mucus from the lungs or from the sinuses or throat? Do you remember the name of the medicine for the mucus that Tracy took?
2) Did Tracy have limb onset ALS? How long did the did she live after the first symptoms appeared?
3) Did she have thick secretions accumulating in the back of her throat? (before the trach).
I may have more questions later...
Thanks a lot again,
Alex
1) You said "They will give you medicines to help with the mucus.." Were you thinking about mucus from the lungs or from the sinuses or throat? Do you remember the name of the medicine for the mucus that Tracy took?
2) Did Tracy have limb onset ALS? How long did the did she live after the first symptoms appeared?
3) Did she have thick secretions accumulating in the back of her throat? (before the trach).
I may have more questions later...
Thanks a lot again,
Alex
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I sit amazed at the length you took to help us with a difficult decision.....after living through it with your wife. You belong in the CALS Hall of Fame.
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texastc
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Alex
1. So sorry, but at the moment, I do not remember the name of the stuff to dry you up...it is a commonly used thing for that purpose. I will confirm once someone on here chimes in with the name. I am talking about saliva in your mouth as well as the mucus that your windpipe and lungs will produce. It will have to be suctioned out. It will cause a rattling sound in your chest as you inhale. If you could still hock one up...that's what you're after...hahahah!
2. Tracy's very first symptoms...at the time we didn't know that's what it was...appeared as a thing where she could think what she wanted to say...but sometimes couldn't spit it out...word things. It came in 'spells', we learned to call them. Then, they kinda eased...maybe or maybe not because of some meds the neurologist put her on, mistakenly thinking it was some kind of seizure...and the next manifestation was weakness in her hand/s and muscle loss in yes, limbs. The spells began during the 2012-2013 school year(she taught 2nd grade). Preliminary diagnosis in summer of 2013. 2nd opinion from ALS clinic 9/2013. She continued to teach(peg tube installed Thanksgiving 2014), retiring in December 2014. By then she was in the power chair and talking mostly with IPAD, touch and speak type of software.
3. By the summer of 2015, her swallowing ability had deteriorated to the point she was scared she was going to choke to death/drown on the spit and thick secretions in the back of the throat that you speak of. That ultimately played into the decision to go ahead with the trach. She passed away in October. Somewhere in the 3 yrs range. She also had a maternal grandmother who passed away from it in 1973.
Hope that helps a little more. Don't be bashful...I will answer what I can.
tc
1. So sorry, but at the moment, I do not remember the name of the stuff to dry you up...it is a commonly used thing for that purpose. I will confirm once someone on here chimes in with the name. I am talking about saliva in your mouth as well as the mucus that your windpipe and lungs will produce. It will have to be suctioned out. It will cause a rattling sound in your chest as you inhale. If you could still hock one up...that's what you're after...hahahah!
2. Tracy's very first symptoms...at the time we didn't know that's what it was...appeared as a thing where she could think what she wanted to say...but sometimes couldn't spit it out...word things. It came in 'spells', we learned to call them. Then, they kinda eased...maybe or maybe not because of some meds the neurologist put her on, mistakenly thinking it was some kind of seizure...and the next manifestation was weakness in her hand/s and muscle loss in yes, limbs. The spells began during the 2012-2013 school year(she taught 2nd grade). Preliminary diagnosis in summer of 2013. 2nd opinion from ALS clinic 9/2013. She continued to teach(peg tube installed Thanksgiving 2014), retiring in December 2014. By then she was in the power chair and talking mostly with IPAD, touch and speak type of software.
3. By the summer of 2015, her swallowing ability had deteriorated to the point she was scared she was going to choke to death/drown on the spit and thick secretions in the back of the throat that you speak of. That ultimately played into the decision to go ahead with the trach. She passed away in October. Somewhere in the 3 yrs range. She also had a maternal grandmother who passed away from it in 1973.
Hope that helps a little more. Don't be bashful...I will answer what I can.
tc
texastc
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Kim
Thank you for the kind words. It means a bunch to me. It feels good to possibly help someone prepare a little better. I know how hard the decision is, I witnessed it firsthand. You can never know too much I don't think. As a CALS, I know how helpless I felt...most all the time. I know that I wasn't really helpless, because I was...helping...but then, at that time, you don't see it that way...that you are helping. You wish you could help...make it stop. But you can't, and it just goes on and on...
Like I said, it feels good to possibly help.
But its hard too.
tc
Thank you for the kind words. It means a bunch to me. It feels good to possibly help someone prepare a little better. I know how hard the decision is, I witnessed it firsthand. You can never know too much I don't think. As a CALS, I know how helpless I felt...most all the time. I know that I wasn't really helpless, because I was...helping...but then, at that time, you don't see it that way...that you are helping. You wish you could help...make it stop. But you can't, and it just goes on and on...
Like I said, it feels good to possibly help.
But its hard too.
tc
GilWest
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I do not mean to be blunt, but DON'T. So many annoying infections and caregiving. I hope I do not sound harsh as it seems to be an impossible situation. You do not need a $30 and hour nurse for the vent. You can find someone for under $10/hr in many cases. The vent is actually the least aggravating thing we deal with here. We are at nearly 2 years of bedridden ventilation with no quality of life at all.
patoyeah
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Gil, thank u... u and all these cals are super helpful..... if u r comfortable, could explain a little more?
sorry for what you are going through. thank u for your honesty.
thank u,
pat
sorry for what you are going through. thank u for your honesty.
thank u,
pat
GilWest
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At this point, all I am doing is keeping her breathing for breathing's sake. There is zero quality to her life, and she cannot communicate. She would not use any communication devices I got for her earlier on, and there were many tried. So all I do is keep her clean, dry, and comfortable. All we have done is prolong the inevitable and place an UNBELIEVABLE burden on my own family. My wife deserves a monument with all she has put up with since I had to move in with my mom nearly 2 years ago. I have been told that I am running a true intensive care bed out off my house.
texastc
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Gil
My heart goes out to you too. I know where you are. I provided that same care but for a much shorter time and Tracy was never really bedridden, per se. We transferred from bed to chair, but mobility was near gone. At the clinic we went to, I saw those with a lot more mobility, on vent and trach, doing relatively well...but again, the mobility...had a lot to do with it. Prayers for you.
tc
My heart goes out to you too. I know where you are. I provided that same care but for a much shorter time and Tracy was never really bedridden, per se. We transferred from bed to chair, but mobility was near gone. At the clinic we went to, I saw those with a lot more mobility, on vent and trach, doing relatively well...but again, the mobility...had a lot to do with it. Prayers for you.
tc
patoyeah
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Both of your pals are lucky to have u guys.... not being able to communicate is tough, i was not able to communicate for nine months; till a few months ago, when i got this device... i wish i could help Gil, maybe ask a church for volunteers to help? thank you guys for your honesty.. sorry u have to go through this..... as a pals, for me, everything is appreciated. a sip of coffee, rubbing my skin, itching my ear are moments of paradise now.. . i am like a stray puppy, that likes a little coffee
Alex123
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Thanks TC for your response to my questions and sorry for having taken this long to respond to your post. But I am not feeling good these days.
1. The glycopyrrolate I tried some months ago but while it reduced secretions, it made them thicker and harder to remove. At that time it did not work. I may try again some time and see what happens.
2. With respect to secretions from the mouth/nose/throat, I can imagine that they may not go down the esophagus and would leak through the vocal cords all the way to where the trach enters. So if they are above the trach, you can't suction them through the trach. How is it done?
2. Tracy's first symptoms were strange. It doesn't seem bulbar because the problem was finding the words and not moving the tongue right?
3. I am having the same concerns about choking on my thick secretions. I have already passed the 3-year mark from first symptoms. Given the rate of progression, I don't think I'll make to the end of the year without a trach. But given all the negative implications I am leaning now more towards not having it done.
4. So Tracy's ALS appears to be familial. Did she have any genetic testing done?
1. The glycopyrrolate I tried some months ago but while it reduced secretions, it made them thicker and harder to remove. At that time it did not work. I may try again some time and see what happens.
2. With respect to secretions from the mouth/nose/throat, I can imagine that they may not go down the esophagus and would leak through the vocal cords all the way to where the trach enters. So if they are above the trach, you can't suction them through the trach. How is it done?
2. Tracy's first symptoms were strange. It doesn't seem bulbar because the problem was finding the words and not moving the tongue right?
3. I am having the same concerns about choking on my thick secretions. I have already passed the 3-year mark from first symptoms. Given the rate of progression, I don't think I'll make to the end of the year without a trach. But given all the negative implications I am leaning now more towards not having it done.
4. So Tracy's ALS appears to be familial. Did she have any genetic testing done?
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