Russ, I googled that movie title to find what it was. Humor is a way to lighten the mood, but that is totally inappropriate. Perhaps you should run an idea like that past your spouse or something before posting on a public forum. I sure hope you know Carly well enough to pull that kind if comment out.

I have to say, I have never been so offended on this forum. Russ, to say your comment was inappropriate is to make a massive understatement. That is all I will say here.

Having experienced crisis and intubation from the observation side, it is a difficult thing to go through but necessary to sustain life. What I observed with our dear friend Newmugg was difficult but she is a warrior. It was also a learning experience. I am prepared now if it ever happens to me. And I know I would want Sherry and Annette at my side and helping my family.

If anyone is interested in the MG preparation notebook, message me and I will do my best to send you links or a file that you can print out. DS isn't notifying me but I will try to check my messages more often.

Cathi

I had a crisis in Nov '11 where I had to be lifeflighted to a larger hospital. I remember being in the ER trying to take my sweatshirt off because I was running a high temp and next I knew I was on a stretcher being loaded onto the helicopter, intubated and I remember hearing one of the nurses comment "she's still awake???" I was in intubated for 3 days, only 1 day did they knock me out completely. I used a clipboard to communicate. I remember thinking how stupid the doctors where in the beginning because since I was awake they kept asking me question. I had a tube down my throat! How on earth was I suppose to answer them??? Geeshhh. Then they gave me a clipboard (wow, my handwriting was horrible!) I did ok through the whole thing, but being suctioned gave me my first panic attack. You just can't prepare yourself for this experience. I hope it doesn't happen again, but with MG you never know.....

Thank you so much for sharing your experiences with me.
I guess I fear having the tube, being awake, and unable to express a need. (like pain, RR needs etc.) It sounds like they "cath" you anyway.
Having my mouth ajar and unable to speak for my recent root canal work was hard on me. They had to keep suctioning drool. I hated not being able to communicate. (What if I had the urgent need for the RR?!) That's really the only experience I can think to imagine it could compare to. I agree it's not something you could probably ever just prepare for, but hearing your stories helps.
Thanks again!!
God bless you,
Carly

Oh yes, I forgot to add about the constant drooling, and subsequent self-suctioning of the drool. The first time I was intubated I was so weak I couldn't even lift my hand to my face, but as soon as I could, I was relieved to be able to take care of that. I had a bladder catheter the first two times I was intubated but not the third time; I was in the same hospital for all of them and I think they realized that since I was good at communicating and being aware of what was happening with me, that I could ask for the bedpan. My notebook stayed right next to my bed, and the nurses became pretty good at reading my blurry, drunken writing. And I became good at using hand motions to ask for things such as the bedpan or to be suctioned. As someone else said, most patients who are intubated are more sedated than we are, and I think the nurses were glad that I was more alert and able to communicate, so that I could tell them how I was feeling so they could better help me. And they were always glad to help with whatever I asked for, whether it was drugs for anxiety or nausea or pain, and turning down my tube feed when I said I felt too full.

I agree, the main things are to not worry, and to be communicative about what you're feeling and what you need. Really, if you do reach the point where you need to be intubated, you most likely will first feel relief that you're getting oxygen again, and the drugs will make you feel very calm.

When first intubated and before I got my notepad, I was signing and finger spelling. My speech path daughter was the only one who could understand what I was communicating but thank goodness she could!

Hi Carly. I have been intubated and ventilated four times for longish stretches. The first one was before my diagnosis although now it seems sure to have been as a result of my MG. Not knowing I had it though meant that the critical care doctors did all the wrong things. They gave me high doses of a paralysing agent called pavulon which is contraindictaed in MG. The result, I suffered multiple organ failure and very nearly lost my life. I also had terrible hallucinations from all the drugs in my system. The other 3 times were after diagnosis and were totally different to the first. I was intubated whilst awake for 2 of them but for all three was alert during treatment except for the nights when I was allowed some sedation to help me rest. My experiences were much like the others, communication boards and all. For me the worst part was the suctioning and also when they moved me the tube moved in my throat which was quite painful. All of these intubations were for crises associated with septic shock so I was systemically very ill on top of the weakness. I have severe respiratory muscle weakness and at my best my Vital Capacity is 1 litre. I have also had countless crises with severe respiratory failure even causing my oxygen sats to drop into the 70's and despite this I have managed to pull through on 24 hour BIPAP. I have an amazing new machine which targets alveolar ventilation and has been an absolute lifesaver for me. My point is just that in my experience BIPAP has been able to save me from invasive ventilation on numerous occasions and from the complications associated with it. I would strongly advise all of you to discuss this option as a possible alternative to invasive ventilation during crisis. It's obviously not always possible especially when you lose consciousness and are unable to protect your airway but when it works it is certainly the less traumatic option. "To be intubated or not to be intubated?" Like Angie said when you need it badly it is actually a relief to get help. Having said that I certainly hope for less and less crises and no further intubations for us all!! Hugs to all!
Ange

There is much that goes on in our sleep we don't realize influences our days. The first article talks about sleep and MG. People here have talked about BIPAP being used in place of entubation and there is one article I found about that. Sometimes more mestinon is enough to settle a breathing problem but often more is needed. The last article talks about metinon's effecrts on breathing as well as plasma exchange. Thought this thread might be a good place to insert these as they are all kind of inter-related. Marie

The first article is about MG and sleep. Many
The 2nd adresses the use of BIPAP to avoid re-entubation this from a Pakistani Medical Journal.
The third is about comparing the effects of plasma exchange and pyridostigmine on resp. muscle strength and breathing in MG. It explains why if meds like mestinon are not enough to counter breathing distress often plasma exchange is used.

http://www.ncbi.nlm.nih.gov/pubmed/11383390
http://www.jpma.org.pk/full_article_text.php?article_id=2655
http://www.ncbi.nlm.nih.gov/pubmed/7491557

Obviously my attempt at humor didn't work. Sorry folks. Having lived in the era of the movie--with a vast amount of jokes prevalent in those days (1970s) surrounding it, my age is showing I guess.

Having been intubated several times for various reasons (not MG), I find it quite unpleasant, especially if you have to have the tube in more than just temporarily. My own living will specifically states no intubation other than for a temporary procedure.

Anyway, in the future I will not be so graphic with my comparisions, Sorry I offended you.

all I know is that I couldn't take mestinon so you need to figure out how to get mestinon in you ...because I only got worse.
Research iv mestinon or maybe they can get liquid in you somehow.
A white board helped me. I could write on that to communicate.

Ann,
Neostigmine IV can be given in place of oral mestinon. It helps to have a letter from your neurologist with equivalent dosage already given. Mine did that for me before a hospitilization. Marie

Thanks for posting this thread and thanks everyone for all the answers! I have been fearing this same thing and it is so helpful to hear from those of you who have experienced this. Every time I go on here, I learn so much!

Cathi, I would love it if you would be able to send me that link. For some reason, I am having trouble messaging you, but I will try to figure it out.


-Thanks, Gina

Hi guys. I am working on a post in the links group with all the pages for the MG notebook. It may take me some time and it may happen today, lol.
So sorry I am no good at checking and returning messages lately. It's been crazy at my house.
Cathi

Cathi, this is so awesome!
(She put mine in a big red binder that is easily seen)