Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and swallowing are most frequently affected.

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What does it feel like to be intubated?

Just wondering if you are awake, sedated, or otherwise.
I admit that a breathing crisis is something I fear.
"They" say it is rare, but I know it happens.
My pulmo. dr. said I was middle of the road with my
diaphragm weakness. The mesty seems to help a bit, but
I'm not doing any other treatment...for now.

Still trying to make sure it's for sure MG before I take the leap with
bigger meds. They are doing more muscles tests and sending me to
a teaching hospital for an evaluation.

Hoping for the best, but sometimes I fear my breathing getting worse.
Carly

Replies

Cabbage7
Cabbage7

I had a crisis in May and had to be incubated, but I was not aware until I woke up in intensive care with the tube down my throat and it was very uncomfortable. I have also been awake when I was Incubated, I gage a little but it wasn't that bad. I pray that you don't go into a crisis. God bless you. Cabbage 7
Cabbage7
Cabbage7

Excuse my spelling of intubated.Cabbage7
snowbeltfolkie
snowbeltfolkie

Hi Carly,
Many here - have been intubated, as you will see (myself included).
I hope we can help you.

First: your doctor is right. Don't be overly concerned about intubation. It is not a routine thing, that happens with all MG patients, sooner or later.

Intubation is generally a last-resort treatment, literally saving your life, when you cannot breathe on your own.

For us, this often means: extreme difficulty in exhaling, as opposed to inhaling.
It is often - not your blood-oxygen level that is the primary concern, but rather your blood-carbon-dioxide level.

I can only give you my personal experience.
To begin with: I was so far gone, with my diaphragm unable to exhale at all, that I was not aware of the intubation at all, when it occurred.
Also: in order to keep you sedated and calm, while intubated - you are given several meds - to keep you - sedated and calm. This also dulls your sense of what is happening.
(Sometimes? These sedatives can be more of a problem to MG patients, than anything to do with intubation. But that's another whole story.)

As I began to regain my ability to breathe on my own, the biggest frustration I had - was that the respirator was always 2 or 3 beats away, from my natural breathing rhythm.
Tired of this, after quite a few days, even though heavily sedated?
I just pulled the breathing tube out.
I highly recommend - NOT - doing this.

With heat-waves and high humidity hitting the nation everywhere? And also air-quality alerts everywhere?

I can't recommend highly enough: that you stay in air-conditioned areas, if you can. And avoid being outdoors, for any longer than is absolutely necessary. And avoid even any mildly strenuous physical activity, for the time being.

Keep us posted right here, on how you are doing.
We're hear to help, we're here to learn.
Best wishes - Ross
ericavt
ericavt

Ross, thanks for that! In my profession I intubate people all day long... of course I only do an "awake" intubation probably 5 times per year on average. Awake intubations are done when someone's airway exam suggests they may be a "difficult intubation", but there are so many tools at our disposal that most people can be sleeping. In a controlled situation (either in the operating room or if we have time), we give anesthetic medications so that you are not conscious. When anesthesia is paged to a floor to help, often times the patient that needs our help is in the situation you describe. They have been working so hard, often having carbon dioxide build up so much that they are not aware of the procedure. In those cases medication is not necessarily needed. Don't worry; there are ways to check for consciousness that do not require a patient to cooperate (speaking, opening eyes, etc).

After the breathing tube is in place, most of the time sedation medication is given as needed so that you are comfortable. When we need to be intubated, our nurses and doctors will need to be very careful with medication selection and amount. I am planning on getting a medic alert bracelet sooner than later. If we have a label on our bodies that says "Myasthenia Gravis" I would hope that if we are found needing emergency airway help out-of-hospital, that the person saving us would have another set of hands to call their support person in the ED to ask what the heck it means. Remember, though, securing the airway trumps all other needs. Sometimes the tube will go in and ventilation will be established, then people will find out what our condition is after. It's just the reality.

If we are at the point of needing intubation, perhaps it will be a great relief to have the tube. I have had cases where I have been paged "double stat" to intubate on a nursing floor or in the ICU, and the patient is awake and struggling. In rare cases when I cannot give sedation for some reason, I have told the patient calmly what I'm about to do, and that they will have help breathing and will feel better. Usually I get a nod without hesitation and eyes asking me for help.

When I was an inpatient and unable to speek clearly/swallow, I had respiratory therapists coming in every 4 hours to do pulmonary function tests. They were trending measurements to make sure I wasn't going downhill. I was nervous, too, not about the intubation procedure, but about not being able to talk with a breathing tube in. I am a chatty person (can you tell by the length of this message??) and I am afraid of people leaving me in the quiet. I have told all my friends and coworkers to please come and talk to me! I also am nervous because I want my "wipey board" sooner than later. We give patients dry erase boards to keep with them all the time if they are intubated and not sedated.

Ross, that feeling of fighting against the ventilator can be very distressing. The respiratory therapists and other people can work with your breathing if that is the case. When a person first is hooked up to a ventilator, they often times are set up with a respiratory rate to be given by the machine. As a patient starts spontaneously breathing (triggering their own breaths outside of the set rate pattern), we can change the ventilator to time breathing support with your own. As ventilators are being "weaned" off, we change from set breath patterns, to "pressure support" (generating positive pressure help when you take a breath), to CPAP, for instance. It sounds like help to change your ventilator settings didn't get to you in time. If you pull out your own breathing tube, you are sure to have a wicked sore throat. When the tube is inserted, a cuff is inflated below your vocal cords to keep the tube in the correct place. If you pull it out your own self (as did my grandfather when he had bacterial meningitis), the inflated cuff can do some damage to soft tissue on its way out. Russ, again thank you so much! Information like that is just priceless. Carly, thanks so much for this awesome thread. I'm sure we all worry about the same things!!!!
newmugg
newmugg

I was hospitalized for 2 weeks with severe bulbar symptoms before being intubated. In the early morning hours of New Year's Day I got up to use the rest room and when I got back in bed, I had a strange sensation of not being able to breathe well. Right at that moment, they happened to be making the rounds to check my vitals. They took one look at me and called for the respiratory therapist who happened to be standing at the nurse's desk who then immediately called for ICU. Within 15 min, I was fully intubated. (All of these people who "happened" to walk in at the right time and were just standing around? It was definitely God's hand in all of this)

They must have sedated me for intubation but then I was very alert. I asked for a pad a paper so I could communicate while intubated. I have 8 notebooks full of notes--not my best handwriting as I couldn't open my eyes. At first in was very scary but as Ross stated, you are given drugs to keep you calm. During most of those 11 days, I could only move my hands as my weakness was then from the waist up. I think I could move my legs. By day 10 (with the help of daily plasmapheresis) I could move my arms and neck so was extubated on day 11. That is another miracle---they were going to put in a trach on day 12.

All that being said, it is scary and difficult but we can get through it...MG makes us tough and we all have a strong resolve to get better.

The need to be intubated can happen so quickly when you are going down hill. As you have read many times on this site, it is imperative to get to a hospital when you have breathing issues...Better safe than sorry.

Sorry for the long reply but this is the first time I have written about it so I thank you for asking. Maybe I am ready to make a long journal post about my crisis.

-sherry
PS...I was intubated again for 2 days the following month due to a bleeding ulcer. The 2nd time was much easier as I knew what to expect.
bweeds
bweeds

Cabbage,
If you have your autocorrect on, we are all "incubated" rather than "intubated." As unwelcome as the need for intubation, with our heat intolerance, incubation would be worse. :-) .

to all: Be sure to carry the emergency pamphlet with you. You can print out a copy from myasthenia.org or reach that site from the links group under things to take with you to the hospital, etc. I have these in the car, purse, travel bag, etc. and hope never to have to use them (along with the longer print outs). Regarding MG, our best protection is a knowledgeable advocate. b.
TibetianTiger
TibetianTiger

What a nightmare...Erica, you are a very compassionate person...kudo's!

I wish I could wave a magic wand and cure all of you...it's a scary thought about breathing...very scary....but it's fortunate that choking at this severity happens infrequently.

I will say that Propofol and Versed are wonderful agents....had both...feels great going into freefall.
mgadvocate
mgadvocate

Carly,

MG respiratory failure does normally require intubation. However, in some cases noninvasive respiratory support is often used via BiPAP.

Last year I my only case of respiratory failure. I was already in the hospital and felt the dome of pending respiratory failure. My team of physicians had just come in to check on me when I passed out. I woke up being bagged (manual ventilation) with the team talking about intubation.

I was lucky enough that I still had strength to talk and breathe on my own. I already knew about BiPAP and asked the team to consider the noninvasive ventilator support. They did my blood gases and complete evaluation and decided BiPAP and ICU admission would work. I spent six days in ICU and did extremely well with BiPAP.

Heading off complete MG respiratory failure with aggressive treatment and BiPAP can sometimes avoid intubation.

Listed below are two medical articles mentioning BiPAP treatment for MG Crisis.

http://www.readcube.com/articles/10.1038/ncpneuro0793?locale=en

http://www.neurology.org/cgi/content/meeting_abstract/80/1_MeetingAbstracts/P02.197

Wishing you the best.

Bruce
ericavt
ericavt

Bruce, good for you being an awesome self-advocate as well as an educated "consumer". Yes, BIPAP can be a great alternative!!
B, I just let out a peel of laughter at your incubation joke! I got a couple funny looks as I'm in the hospital getting IVIG right now. Not that I ever care when people think I'm strange! :)
vieve
vieve

The thought of being intubated makes me squirm! But I've been intubated for MG three times, and it's always less terrible than I expect. It's true, when I reach the point that I'm having so much trouble breathing and I genuinely believe that I'm dying, my expectation for comfort changes. I start making deals with god that if (s)he lets me live, I'll never again complain about something as relatively benign as the nurse sticking a plastic tube into the back of my throat to suction out the mucus and spit. Plus, the drugs help. The nurses tell me that I take less sedative than most patients; I don't really like the feeling of being high and out of it. Even on a small amount of sedative, I just lie there like a lump staring at the ceiling, not even wanting to be spoken to or to watch TV. Each time for me, I was partially sedated for the first 24 hours, then they weaned me off so that I was mostly alert and able to stay awake (though very calm! Because of the remnants of the sedative? Or other anti-anxiety meds they give me? Not sure). They tie my hands down at first but untie them as soon as they seem that I am calm and I promise to not pull out the tube (don't pull out the tube!! Ow!) It seemed like they wanted to extubate me usually after two days, but it seems like I usually need three days. (Because the sedatives they give me paralyze me also and I have to wait for them to wear off completely? Or because that's how long it takes the plex to kick in? Not sure.) At day 3, I usually am experiencing some discomfort in the throat from tube, my ears hurt from being stopped up, etc. Other weird or unpleasant things are, yes, when the nurse brushes my teeth and then switches the tube to the other side of my mouth, suctions the spit out of my throat. And since I can't cough, moisture accumulates in my lungs and the nurse suctions it out in a way that feels difficult but always makes me feel better. It was a bit weird to have the nurse insert the feeding tube and the bladder catheter when I was awake; I can't imagine being awake during the actual intubation!

The worst part of the whole thing was, the second time I was intubated, I for some reason couldn't figure out how to tell the nurse that I was having trouble breathing, so I just laid on my bed and waited to die. Seriously, I was in the ICU of one the best hospitals in southern PA, and I really just thought it was time for me to die. I was wrong; after I fell asleep from too much CO2 in my blood, my alarm went off and they came and rescued me.

Each time, they weaned me off of the support gradually and tested my lungs to see how strong they were. Still, the second time I was extubated, I wasn't really ready and had to be on the bipap for about 12 hours afterwards--this was my first experience with the bipap! If I had learned of it's existence previously, I might not have struggled so much before being intubated.

I'm afraid that nothing I've said here is going to make you feel better. (Not that you asked for us to make you feel better, but I don't want to scare you.) Really, it's not so bad. Each time, I always felt relief at being alive, gratitude for all the smart doctors and nurses and taking care of me, and relieved to be able to just lie in bed and think about stuff after struggling for so many days. And then, as the sedatives wore and I became more awake, I alternated between being read aloud by my dad from a book about food in NYC, and watching the food network for hours, fantasizing about all the amazing food I was going to eat when the plex had kicked in in full.
newmugg
newmugg

You are right B. a knowledgable advocate is invaluable for the patient and family/friends. The day before my crisis, I must have had a premonition that I was about to be in trouble. (We had tried everything for 2 weeks trying to head off a crisis--plasmapheresis, IVIG, prednisone, IV prednisone, rituxin). I texted Cathi (catnap) and asked her to be my medical advocate for me and for my family if something should. She agreed-- I'm sure not thinking she would actually need to be an advocate and surely not so soon.

Cathi (along with Annette) was a godsend to me and my family. My family had no idea what to expect with MG crisis and it was a frightening time. Cathi patiently and clearly answered all of their questions and even copied off information. It put my mind at ease that my husband had an experienced and educated MGer by his side to help make decisions.

After my crisis, Cathi made us a notebook that includes phone numbers of possible advocates (I want someone who has MG) and info of what to do and what to expect with MG crisis and intubation...very helpful to family and friends. Priceless gift!
DebbieF777
DebbieF777

My bipap came with me to the hospital and as soon as I knew what was happening, that puppy was strapped on and O2 ran through full tilt (I normally use it with room air) They had to get a different one, as they are not allowed to adjust personal machine settings, and the pulmonologist ordered higher settings, but I avoided intubation during a crisis! Before plasma, I was moving hardly any air at all, but the high oxygen and bipap assist was enough to get me through and by the completion my lung function was about 35%! After each PLEX, I got better. So even with crisis, intubation may not be necessary, so don't worry too much about it.
GreenMarie
GreenMarie

Carly,

The thing to remember is if you are having trouble breathing and need help by being entubated knowing what to expect helps a great deal.

For one thing when the tube is in place you will not be able to talk but you will be able to communicate via tablet and paper or nodding yes to questions from the nursing staff or pointing to pictures of what you need or feel.

They do try to make you as comfortable as possible like others here have mentioned by giving some meds that help you relax. There are also settings on the machine that can help it get in sync with our respitations better and that also can help. By the time you need help with breathing you also need the time out to rest and the meds and machines let this happen.

Think of it as a time of healing. The machine breathes for you and you don't have to expend the effort. You are hooked up to tubes that will let you eat without expending energy. You are being taken care of with monitors and people watching diligently over you while you rest and get to the point of being able to gradually take over your own breathing again.

The tube itself has a balloon of air around it to fit against the sides of your trachea so there are no leaks. You never want to self extubate as the tube will be up so this would be very uncomfortable! When it is time they will sit you up somewhat and deflate the balloon and take the tube out and help you cough.
They will gradually wean you off the machine so that when the tube is withdrawn you will be ready to breathe on our own.

The main thing to remember is once you are on the machine that is breathing for you if you have any concerns write them down. The staff will work with you to make you more comfortable.

For those of us who need help sometimes with breathing and have BIPAP it is a wonderful thing. When I tired too much or the two times while hospitilized I had serious increase in work of breathing it was my BIPAP and extra oxygen that helped me get to the point my pyridostigmine was working.

I recently had to have a back up rate added to my BIPAP. I will need to talk to my doctors about what this may mean in terms of changes in my muscle weakness...or possible need for changes in medications. It certainly has helped make my sleep more restful as for me as I was not getting good consistent sleep.

Some of the latest papers shows a higher rate of sleep disturbances in MG patients. Sleep is restorative and I would urge anyone with sleep problems to talk to their doctor about it.

As far as entubation is concerned I would urge you to understand the necessity of it and what it means as far as getting through a crises and understand the mechanism so you know what it will be like. I have assisted in entubating patients and taken care of them on venilators over the years before I retired and have also been entubated several times although not for muscle weakness. I had full faith in my doctors and I have high praise for ICU nurses. IF I could say one thing about it that would be, be not afraid. Marie
newmugg
newmugg

Seriously Russ? NOT funny
snowbeltfolkie
snowbeltfolkie

Huh? Yikes, Russ.
I was floored, to open this forum, and find your comment.
I've never heard of a comment like that, on the MG pages of DS.
- Ross