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Now stay at home dad

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Oct 7, 2015
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33
Reason
PALS
Diagnosis
09/2015
Country
US
State
CA
City
Coarsegold
Hello
I'm trying to get a general idea from those who have gone through the tracheostomy process. What was your recovery time like and pain? How does it feel when breathing afterwards? Is it something you have to get used to? Is it better than what you were experiencing as far as breathing on your own before? For me it is easy to breathe head elevated and to the side. When I am looking straight ahead it is really hard to breathe. Lying flat on my back and breathing is not possible.

lastly, does it effect your ability to swallow saliva?

thank you for all comments. I apologize if some of these things are difficult to talk about. I'm just trying to figure out what will give me better quality of life because I get different responses from different doctors.
 
I don't recall any pain from the tracheostomy, probably because I had a feeding tube put in the next day and that really did hurt for a couple of weeks.

Recovery from the trach surgery was more mental than physical -- and that was mainly in learning that suctioning didn't hurt and that any movement of the trach tube from moving the vent hose made me cough for a minute or so. I quickly learned that popping off the vent when being moved was better -- and that I could be off the vent for quite a while, especially if I was kept occupied by the TV or computer.

The length of time you can be off comfortably decreases as your respiratory muscles weaken further. Trusting the nurses to answer my call light was scary in the times a family member or friend wasn't with me.

Wondering if I had made the right decision was emotional for about a week but I felt so much better that was over soon. Breathing was immediately effortless and I have taken it for granted and been unaware of it ever since, just as I had before ALS. It doesn't feel any different from normal breathing unless I consciously think about it. It was so much better than breathing had been, even with BiPAP, and everyone mentioned how much pinker I was when they first saw me.

The congestion that caused episodes of frightening inability to breathe are prevented/relieved immediately by suctioning. I am now able to breathe well in any position even though my neck muscles are weak, but if my head falls way back or forwards it can be more difficult and set off the vent alarm.

The trach does not affect swallowing and if you could still talk before the surgery you should be able to talk after if you have a cuffed trach to deflate along with a vent volume high enough to keep you from being short of breath.

Greg has already posted the link to my ALS from Both Sides website and taking time to read it will prepare you for the procedure, recovery, and home care needs and routines. With my extremely slow progression and 14 years with a trach and vent, I have learned so much that I want to share with you. Doctors are not big on ALS patients being trached and vented and, especially when progression is slow, underestimate what your quality of life can be.
 
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As a CALS, I can say that when Brian was first trached, he was scared. It took him a couple of weeks to truly adjust to the vent. Once that was past, he admitted he had not realized how bad his breathing had gotten until,he was getting good air again.

For the first several years of being vented, he spoke and ate with the trach. When things got too bad with weakening muscles, he lost both abilities. It had now been 8 years and his condition is such that he is in bed 24/7 with just the ability to move his eyes side to side. He uses an eyegaze to communicate.

When asked, he says he would do it all over again.

All that being said, you do need to have a caregiver available, within ear shot, 24/7. If you choose to go that path, do your homework and make sure you can have that care. In most states you cannot get Hospice while on a vent. And here where I live you cannot get Home Health either, but you can get private duty nursing for a price, not inexpensive.

Bria got his feeding tube placed at the same time to avoid a second procedure and was glad he did, even though reluctant at first.

Best to you as you make your decision.
 
For fairness, we did have a member who couldn't adjust. He was truly miserable, and elected to discontinue.

I'm ashamed to admit that I cannot recall his name :-(

Please don't think this is discouragement, as I too intend to go this route.
I fully believe in informed decisions.
 
Greg,

In terms of members on trachs who elected to discontinue, Joel C. and Greybeard are two who come to mind. I know of others via their CALS -- Santa Joe and GilWest would be examples, whose PALS did not achieve the quality of life sought at the time.

All,

If you look for threads on this, make sure to look for vent, trach and trache as each has been used to describe the same scenario. And you can also search on user names such as those above.
 
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My husband was trached in March (I think--time runs together now for me). He was miserable initially, and very frightened. He was still breathing on his own--it was a case of do it now while it's safe or risk an emergency surgery and he knew he wanted it at that point (he changed his mind several times).

He was back in the hospital every two to three weeks with one infection or another, and we are meticulous with his care.

More than once he said he'd made a mistake, but then things got better and he was glad to still be here (and he wouldn't be without it).

Honestly, I don't think you can predict how things will go. Some people have a much harder time than others. I've heard the first three to six months can be rough, but then if the body settles down and gets used to it, you can be comfortable. Some people stay very active, depending on other issues, such as pain, mental state, support, etc.

If you otherwise feel that life is worth living, you give it a shot. If you decide it's not working for you, you can be given medication to stop the air hunger, and you can be taken off the ventilator. From what I've seen and read, everything else moves at it's own pace. The trach itself is manageable. My guy has a lousy immune system. He would never have not tried, and as long as he has any quality of life at all, he's a fighter and will stick it out.

Diane's site has great info on living with the trach. She is, in my estimation, on of the great success stories. If your ALS is fast moving, you might get less time out of it. I have no doubt that every day we have now is due to the trach, and I'm as prepared as one can be for the fact that this will be a much shorter ride. That's ok.

Down side? We do a lot of suctioning, and that's not pleasant, but we're past the point where he can swallow safely.

Keep asking questions, and read some past posts. This place is a wealth of information, and your experiences and questions will only make it better.

I just reread your question. Matt turned down every offer to hear details about life on a vent. He later said he was not prepared, and I reminded him that that was his choice. We had been using the cough assist and trilogy for several years, so that part was not too difficult for him to adjust to. The coughing and suctioning--that was tougher. I hope our PALS can give you even more details about how it feels, but it looks like you have a good start here.

About Joel, it seems to me that he enjoyed life for several years and even championed life on a vent before finally deciding that his time was over. I call that a success. Others never left the hospital and were miserable until the end. I wish we had a crystal ball. Big hugs.
 
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I was trached last January. Before my trach I would stop breathing when I was asleep. I didn't wait for an emergency to have it done. My recovery was about 10 days. No regrets.
Patrick
 
Thanks again I am very happy with mine. The mistake I made was waiting until I was on bipap and mask 24 / 7.

My blood oxygen is better, I don't have to wear that damn mask. Yes I have to have someone else with me all the time, but I required that anyway. I wish I had done it six months before I did. The maintenance is very simple and common sense.

The only problem I had is that providence hospital in Portland wanted me to go into a " rehabilitation center" for two months after I had spent two weeks in the hospital recovering from the surgery. I was like " what the hell do I have to rehab? I can't eat, drink or talk". Seriously though, it got nasty, we had to threaten legal action and to leave AMA to get them to discharge me. Other than that, oh and I had one nurse who was a royal b####, it was a pleasant experience.
 
Can someone explain the cost issue? Insurance won't cover a home nurse for it? What if you want to go on a vent but can't afford it, will they really just let you die?
 
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