clinic yesterday--shocker

[AHands]

i went to clinic yesterday and came away depressed. they want to install peg and trach asap. i wasn't ready to hear that. i still walk short distances. i eat & swallow fine and still weigh over 180lbs and still look healthy. they want to put them in now because my fvc has dropped to 42%, and they'd rather do surgery only when fvc is at least 50%.

anyway, peg & trach...have you got 'em? whatsit like? what can you still do, and what can you not do now? do you still breathe through your nose at all? my nose is always clogged--always was a problem, but now i lack sufficient lung capacity to blow it, which is a real b**ch. breathing troubles have been a real source of misery for me, especially when lying down. maybe the trach will make things better?

 

[BethU]

Hi, Adrian ... From what I understand, both the feeding tube and the trach will improve your quality of life a great deal. I am hassling with my insurance company about getting on BiPap so I can have the tube implanted soon. My fvc is 49%.

There is a long, very informative thread on this forum about the trache. The board may be a little slow because of Christmas, but there's a lot of good info here. Use the "search" function and you'll find it.

Have a good holiday ...

 

[kylisa]

I cannot comment on the trach.....my mother will not even attempt to use the bi-pap.
However, the peg has been wonderful. She fought having it put in but my father finally forced the issue. Thank God he did because within a month after it was installed, she was no longer able to eat or drink anything by mouth. My understanding is that the peg is something that is best inserted long before you need it. You say you weigh 180lbs now, so go ahead and get it so that, if you begin having eating problems, the supplementation can begin and you won't have the added issue of dramtic weight loss.
After dealing with my hard headed mother, I advise you take any and all help you can get. She has always had a high threshold to whatever would send the average person running to the doctor. A lot of the issues she is facing now is due to her fighting everything. Please utilize whatever is available.

Happy Holidays!
Lisa

 

[Jeannie]

I just wanted to tell you that I am thinking of you. My mil got her PEG tube 3 months ago and I am happy that she did. She can still eat a LITTLE but without the peg tube she was loosing a tremendous amount of weight.
Her lung capasity is only 32% and she was hospitilized this week because of difficulty breathing due to an infection. The dr. told her he would like her to have a trach asap but she has to think about it.
I wish you the best of luck. They are tough decisions to make
In friendship
Jeannie

 

[Al]

Sorry about this turn of events Adrian. Look for threads by joelC and quadbliss. They both have vents and swear they live better now. Quadbliss has a webpage at www.quadbliss.com

AL.

 

[Tall John]

Wow - sorry to hear

I've heard the Peg is not major, but with the trach you need 24 hr care. Keep me posted

 

[Al]

You don't need 24 hour care, really. Someone does have to be within hearing distance of the alarms. If the hose pops off you might need someone to reconnect it but you don't need nurses there 24/7. You need someone in the house at all times in case something goes wrong but family can be trained quite easily. Just ask joelc or quadbliss.

AL.

 

[Tall John]

Thanks Al

I didn't know

 

[Tall John]

Ahands-one more thing

I've asked all the questions at UCSF and they are not as set in stone on the 50% FVC, especially when it comes to the trach. Maybe do a bit of your own detective work first. That's a big one !

 

[Tall John]

Thought of one more

What was that thing Augie Nieto had placed around his diaphragh ? It helped him a bunch when he was lying down.

 

[CindyM]

Hi Adrian - nice to hear from you again, though I am sorry things are progressing in this fashion. Good luck with your decision. Let us know what you decide and how it works out, OK? Cordially, Cindy

 

[sharonca]

I had my peg in 12/10 and my FVC was 43. At the start of surgery they gave me "twilight" sedation and my O2 levels plummeted. They stopped the twilight and everyone started yelling at me to breathe through my nose. The continued with the surgery - very quickly- without the aide of anethestic. Quite the excitement. The doctor later told me that they had to do that because if they had continued the twilight I would have ended up on emergency trache and vent or if they had stopped the surgery I would not have been able to get the peg.

So that is my story. I thought I was getting the peg early - but I was late. My FVC sitting is 69, on my back 43.

Sharonca

 

[joelc]

Al is absolutely right, you don't need nurses, just someone within ear shot in case you need help. Anyone can be trained to perform all the care that is necessary. It is easy! We have walkie-talkies that we use when my wife wants to do something that takes her out of hearing range. The PEG is something you should get while your breathing is still good, it can be an exciting experience once your breathing deteriorates. Everyone is different, I got my PEG when my FVC was 35% and it took less than 5 minutes. They did it with me sitting up. Getting a PEG, then a Tracheostomy and Vent has given me my life back! They don't keep from doing anything, as a matter of fact I can do things now I could not do before getting them! God Bless!

 

[joelc]

Al is absolutely right, you don't need nurses, just someone within ear shot in case you need help. Anyone can be trained to perform all the care that is necessary. It is easy! We have walkie-talkies that we use when my wife wants to do something that takes her out of hearing range. The PEG is something you should get while your breathing is still good, it can be an exciting experience once your breathing deteriorates. Everyone is different, I got my PEG when my FVC was 35% and it took less than 5 minutes. They did it with me sitting up. Getting a PEG, then a Tracheostomy and Vent has given me my life back! They don't keep from doing anything, as a matter of fact I can do things now I could not do before getting them! God Bless!

 

[AHands]

Thank you!

Thanks all!

I realized afterward that the title on this thread might stop a lot of folks from reading. I shoulda said "clinic yesterday--shock to me". I was pretty shook up. better now. thank you.
I supposed i had hoped i could fight this off, or an effective treatment could be found before i need peg or trache.

the whole thing SEEMED to be triggered by me saying to the ra, "i know at some point i'm supposed to choose to vent or not, and based on what i know now, i see little reason to not vent, but i've not seen the videos yet..." (theyd previously told me they had videos on the choice re vent, when that time comes) forgive me--i'm not makinng a strong distinction between trach & vent--i don't know enough yet. arm onset--typing is difficult.

when the lead neuro came in, the story became, "glad you decided, now you need peg and trach asap, because even though (1) your swallowing is fine, and (2) your weight is fine, your fvc (3) is now below 50%, complicating surgery"

prior to this, i was not technically 100% positively diagnosed. it was, "its looking more & more like als".
so i had to ask. this time the answer was, "we only know for sure after an autopsy. right now, short of an autopsy, everything says als."

they never did show me the videos...maybe not necessary if i choose to trache/vent. they didn't have me talk to the psych guy either this time...maybe ran out of time?

so i was shook up...okay now...trying to figure out what cool party tricks i can do with peg & trache (e.g. hold my head underwater for an hour, etc...)