Tracheotomy

[Community Member]

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.

[Community Member]

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.

[Community Member]

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.

[Community Member]

Mike,

I was not aware that Medicare paid for home help. Is this a feature of Medicare Advantage?

 

 

[Community Member]

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.

[Community Member]

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

[Community Member]

<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>

[Community Member]

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.

[Community Member]

Jim:

I go in for a laryngectomy in a week and really appreciate your comments.

I had not heard of using hospice this way. I will be calling our contact ASAP. We have been dreading getting the nurses set up.

That CNA rate seems so inexpensive. In Sarasota with the first home care agency I checked, aides were $38 and nurses were $50.

Do you negotiate these rates, not get them through an agency, or what was your secret?

I would appreciate any tips you can provide.

Thanks

Doug

[Community Member]

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.

 

 

[Community Member]

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.

[Community Member]

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

[Community Member]

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.

[Community Member]

Thanks so much, Fran.

[Community Member]

I appreciate very much your comments. I have bulbar ALS and I know at any moment of my life I will need trach

Thanks

[Community Member]

I will not have a tracheostomy. I am a retired old guy, so I know that affects my choices. Although my caregiver and wife is not retired, I don’t think in good conscience I would want to saddle her with the round the clock care demanded. ALS has been a part our family for generations. I have come to peace with it.

We have medical directives in place. Once I convinced my doctor that I was not insane he helped me get them posted in the system. I also have copies that are to travel with me if I need to go to the hospital. You have to be vigilant. My brother had such a directive that doctors chose to ignore when they put him on a ventilator, his wife and my other brother fought with the hospital to remove it as the patient requested.