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    • #21164
      Sonsu
      Participant

      <p style=”text-align: left;”>Anyone on the forum has done the surgery or is contemplating of doing it. If anyone has what is life after surgery</p>

    • #21178
      Mike Leist
      Participant

      I had a tracheostomy, and went on a ventilator in March of 2020. I don’t regret doing it, because I wasn’t ready to die, and it pretty much eliminates the risk of respiratory failure.  Life with a trach requires 24×7 care be nearby, mainly for two reasons. First, if the vent becomes disconnected, someone has to reattach it. Second, clearing mucus or phlegm out of your lungs has to be done multiple times per day, with either a cough assist machine or via chest suction. Sometimes you’ll have to do this more than once an hour, sometimes you’ll go several hours without needing to do it. I would say I’m generally sleeping through the night without needing this done 5-6 nights per week, but it was more frequent at first. There’s maintenance required on the trach daily, but that’s pretty simple, and only takes about 10 minutes. You’ll want to leave the hospital post-surgery with a care plan in place that involves skilled nursing and home health aids, so that your spouse / family gets a break. Your hospital case worker will negotiate with your insurance company to put a plan of care in place for you.

      • #21267
        Sonsu
        Participant

        Thank you Mike. What is monthly cost of nursing care you get and how much of it is covered by your insurance.

        Are you based in US.

        • #21275
          Mike Leist
          Participant

          I’m on a Medicare Advantage plan, and am in the U.S. I have 25 hours of skilled nursing per week, and 30 hours per week of a home health assistant. I pay zero out of pocket for this.

    • #21190
      Fran Finney
      Participant

      I commend you checking into whether to have a tracheostomy. It is a big decision, and you will find many PALs who have chosen to have the procedure have different experiences. Some are very happy with the choice, some regret it.

      My husband had a tracheostomy. The trach extended his life with ALS for several years. I cherish the extra time I had with him.

      I know many other PALS who have also made that choice. The life of a PALS who has had a tracheostomy can vary a lot depending on many things: Where they will live (At home? In a subacute hospital?) If at home, what will be their caregiving situation? (Family members only? Nurses/professional caregivers part time? Nurses/professional caregivers 24/7?)

      Your geographic location can have an impact too. Some areas have much better medical care and support for PALS with tracheostomies than other areas. If you are in the USA, I recommend you contact your local ALS Association for information about local support for PALS with trachs.

      • This reply was modified 7 months, 1 week ago by Fran Finney.
    • #21239
      Jim Cowgill
      Participant

      For me, life after the tracheostomy is so much better than right before. Sit down and discuss with your partner because it will be more work for them which they will probably gladly take on. I am fortunate to have a day and night nurse, but my wife covers weekend days and a couple hours weekdays. The first several days post surgery aren’t pleasant and you’ll probably have some anxiety. After that, you’ll appreciate what a full breath feels like again. I was 49 and felt like I had more to offer. I don’t have any regrets except I wish I got it sooner. And most days my wife feels the same.:)

      betterlivingwithals.com

      • #21268
        Sonsu
        Participant

        <p style=”text-align: left;”>Thank you Jim. What is the monthly cost of nursing care you get and how much of it is covered by insurance.</p>

        • #21273
          Jim Cowgill
          Participant

          Hi Sonsu. I pay $18 an hour for a CNA. Both of my nurses and wife had no prior ventilator experience. I am fortunate to have a robust long term disability policy through my former employer. Health insurance didn’t pay for nursing.

          When I was discharged from the hospital, I went on hospice at my house. It was helpful to train my nurses and they covered supplies, medicine, respiratory therapist, bath aides, and doctors. After two years, they discharged me. No big deal now because my nurses have seen everything.

    • #21262
      Sonsu
      Participant

      Thanks for sharing your experiences.  Post surgery is feeding is completely through tube? Also is there 100% loss of speech? Are you still having mobility or on wheel chair.

       

       

      • #21274
        Jim Cowgill
        Participant

        I was bulbar onset, so I already had a feeding tube and was unable to speak. Prior to surgery, I could walk with great difficulty with a rollator. When I was in the hospital, I got an infection and was bedridden for several days. I was unable to walk after that.

    • #21373
      Kathy stitz
      Participant

      Do all pALS need to make the decision at some point of whether or not to have this done?

      • #21375
        Fran Finney
        Participant

        Kathy – If you don’t make a decision and you are hospitalized for some emergency that requires a tracheostomy to keep you alive, the doctors are required by law to do the tracheostomy – unless you are able let them know that you don’t want one. That is why PALS are advised to make that decision ahead of time- and put their decision in writing.

    • #21376
      Kathy stitz
      Participant

      Thanks so much, Fran.

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