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Thread: I dont have an SCI, but wasnt sure where i should introduce myself

  1. #1

    I dont have an SCI, but wasnt sure where i should introduce myself

    i guess moderators could put this where they think it should go? my name is shmuel.. currentlyhospitalized andrecently got a trach.

    just tryingto talkto someone elsewho has one. having some issues adjusting

    i dont have an SCI, i actually have a mitochondrial disorder called MNGIE which has caused a lot of muscle wasting and nerve damage all over my body. been using a powerchair about 8 years,currently use a power chair. havent been in it because i have a wound onmy bottom, and am on a wound vac,cant sit down. also dealing with respiratry failure because i guess my brain isnt telling my bodyto breathe

    so got the trach,was on bipap for a llittle while,justfeels likethings are progressing kind of fast not too many forums for MNGIE but just hopigto connect with peoplwwho use vents

    i've got a wife and 2 boys, one is brand new, 2 months,other one is 6 years old. my mother and my wife do a lot of my care. a little nervous about going home on a vent. they both claim they are going to carefor me,but i'm a little worried that they are biting off more thenthey can chew, but i also want to be there for my kids.

  2. #2
    Senior Member
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    Geeze! I don't have any advice, but I wish you the best of luck!

  3. #3
    There may be forums that are more specifically targeted to your situation:
    http://www.mitoaction.org/http://www...al-diseasesYou may find other support groups if you search the internet for "mitochondrial disorder."

    All the best,
    GJ

  4. #4
    We have a few members who are on ventilators and/or have trachs. I am going to move this to a different forum though, since you are not newly spinal cord injured.

    You might also want to check out this group:

    http://www.ventusers.org/index.html

    http://www.makoa.org/vent/

    and

    http://www.makoa.org/quadlist.htm

    Also, here are few more:

    http://www.ventworld.com/resources/is_listservs.asp

    This one is for non-invasive respiratory support:

    https://breathebb.com/index.php?sid=...3d4d4bc3aae678

    (KLD)

  5. #5
    thanks...idid actually look at some of those sites just didnt find anything that was active. i didnt join the listserves but figured they would probably be as active in 2016 as USENET

  6. #6
    With your permission, I can change the title of your thread here to something like "Seeking others with trachs or using vents". This may get your thread selected more for comments by those you seek to connect with than the title it has now.

    (KLD)

  7. #7
    Senior Member zagam's Avatar
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    Western Australia - Hammer wielding daemon
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    Usenet

    Quote Originally Posted by Shmueley View Post
    USENET
    What's wrong with USENET?

    Use the Google Group interface now as my ISP killed their news server.

    I have pleural effusion and use CPAP at night on the nose for sleep apnoea. Huff'n'puff by day. Possibly the effect of asbestos exposure or untreated haemothorax.

    Exploded electrical resistors in electronics, heaters in chemistry and demolished building that turned out to be asbestos.

    Also got smashed in MVA.

    The pleural effusion is reduced when I bike distances in a manual wheelchair.

    Paraplegic with a damaged chest.

  8. #8
    Once you are stabilized and planning for home care, are you able to get any additional care, if needed, besides your family?
    I was on a trach and vent a few years ago, then bi-pap, and now vent with a mask (no trach now) for overnight and naps. Polio weakness has had effect on my muscles for breathing. I use portable oxygen for daytime. All of this was a big adjustment for me and my husband. He's in a wheelchair too, we're both paralyzed and made everything work by trying to keep ahead of our needs.
    The ventilator provider comes once a month to check things out. The only care we have now is housekeeping services bi-weekly, but we stay aware of various options. We both have hospital beds to make transfers easier.
    Glad you checked out this site. Try not to let others tell you what you need. Discuss, think through what you want, and come up with a plan with your family.
    Best to you!

  9. #9
    Senior Member
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    I have a progressive neuro-muscular disease and a paralyzed diaphragm. I have a trach and I use a ventilator at night and sometimes during the day. I've had a trach and vent for about three years. A nurse comes once a month and checks out the vent. I change the trach tube once a month myself. I prefer to change it myself because I can have it fit my schedule. I also feel that it is less likely to cause an infection. Also, by doing it myself I think that I am better able to handle an emergency.

    Suctioning is important for secretion clearance. You might be able to get a cough assist machine to help. You might also consider getting a pneumonia vaccine.

    I have had it long enough so that it's not a big deal.

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