just for a moment

[t34gib]

I have these times when just for a moment, I am in full acceptance of my condition and am actually able to tell myself, no problem, I can live with this. Then out of nowhere a mucous plug blocks my breathing tube and I go into a full panic trying to clear it to breathe. Then I am knocked right back to the reality of this disease and where it is going. Everytime it happens I wonder if this is the time that I will not be able to clear it and I will pass out. Of course it gets cleared and here I am again. I think it is so very cruel to have to have this disease in the first place, but to have it and wonder 5 times a day if this is the moment of my death is unbearably cruel. Just wanted to vent and move on.
NancyS

 

[BarryG]

Nancy, Wow! I have exactly the same thought every time I have to rush to the bathroom and suction. I tell myself to relax and not panic but it is so hard to do and there is unbelievable relief when the suction wand latches onto a goo ball and I can breathe again.

It really affects what I can do and where I can go. Can I go to the mall? Forget about what the weather is like or if there is wheelchair accessibility, can I go out without having a choking episode?

 

[joelc]

That is one advantage of a trache. You don't have to worry about those goo balls bothering your breathing. If you have secretions, in your lungs, that are bothering your breathing they are easily suctioned. The ones in your throat don't bother anything so you can take your time getting them. I well remember the days you speak of and don't miss them one little bit!

 

[t34gib]

Barry, do you have a portable suction machine? I do and it runs on battery. I have to take it with me everywhere now, no matter where I am going, it is in the car. Sometimes I can leave it in the car if I know I can get to it in a small amount of time, but othere than that it goes with me. I am about to take a plane trip north and I know I will have to have it with me. I have never had to really use it in public where there are people around and now probably will. I will take a towel with me to help hide the suctioning so as not to make others uncomfortable. It really is a challenge every day, isn't it. Knowing that it will continue to be a bigger challenge all the way to the end. But it does help to know others are right there with you.
Joel, I understand you don't have this problem at the moment, but i have read your daily procedure and realize you have a great many more problems to deal with and admire how well you do with it. Thanks for the words.
NancyS

 

[irismarie]

nancy, have you see Barry'amazing poem about just this on hi More Midnight Ramblings thread?

 

[BarryG]

Nancy, I do have a battery powered suction machine that I can take with me when we go out in the van. It is still pretty large to carry around when we leave the van though. What make and model do you have? Mine is a DeVilbliss Suction Unit. I agree with you, I am beginning to not really care what other people think. If I have to use it in public I will but I would prefer to be at home or at least inside the van.

Joel, I agree with Nancy. Your list of procedures is impressive and I sure wish none of us had to have things like suction machines or procedure lists but such is life, we just get on with it. Thanks!

 

[t34gib]

Barry, I have the devilbiss also. I still work a few afternoons a week at our local Health Department. I work on the second floor and have to take the machine and my computer for speech with me. i have a cart I put them on but it is really getting to be a hassle. I do have to take it with me in the car everywhere i go because you never know when it will hit you.
I went to the mall this morning and looked around Macy's for about 15 minutes and could feel myself getting all stuffed up so I hurried out to the car and by then I was so tired, I just went home.
My energy level is really low these days. I am going home to the Chicago area next week and don't look forward to the travel day. My daughter is going to fly with me so she will put me in a wheel chair to try and reserve energy, but it will be a long day and i will have to have my suction machine with me at all times. such is life.
I think I may be nearing the time of needing a Bi-pap as I get winded very easily. One more thing.

 

[t34gib]

Iris Marie, no I have not seen it but will go look for it.
Thanks
NancyS
how are you feeling?