Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Will someone with a trach & respirator or ventilator PLEASE respond. How is it working? Are there problems associated with these things? My husband is on a bi pap at night & more frequently during the day - when is it time to make the move? Thank you so much. Mustang1
Posted in:
Mustang 1
I am not sure if you are getting this message twice - my computer acted up and not sure it sent or deleted my first message to you.
My husband, Harry has been on a vent since Oct. 2006 - Trach was put in in may 2006. We have had no problems. Vent people came to the hospital to discuss our decision, than did a training program with us 3 days before he left the hospital. They removed hospital vent and put him on the portable vent. He stayed in the hospital 2 more days to make sure we were comfortable with everything. My daughter went thru the training program with me (they suggested two people go thru it). We have since trained family members and friends on it. I find no problems with the vent - there is daily and weekly maintaince of it. With the trach, you will be suctioning secretions and need to clean it daily. The vent people actually rode in the ambulance with my husband and one was here at the house too when he got home. They came out once a week to check it and make sure I was comfortable. They are on call 24 hr. a day and I can call anytime with questions or problems. You are given a backup vent in case something was to happen to the one you are using. They also come out about once a month now just to check in and check the vent. since Harry was put on the vent, he has not been back in the hospital at all. Some people are able to talk using a special valve with the vent. For some reason, Harry had problems with that so he went to a dynavox instead. He has 3 finger hand movement on his right hand and controls the dynavox using an infra red sensor.
The vent is portable - if you are going out for less than an hour the small vent has a shoulder strap to use if you are going out longer than that you need to carry a battery that works up to 12 hours. Harry's wheelchair was fitted with a special box in the back for the vent and battery.
I am not sure what you are looking for in information. Please feel free to write me with any questions you may have.
For us, the decision to vent was an good one and we are happy with it.
Take care
Cheryl
Yes, there are problems that come with a tracheotomy. I have lived on a ventilator since May 2001. Most of the problems that come with a tracheotomy are simply cleaning the trach area, changing ventilator hoses periodically, and communication. None are really difficult. Quality of life is dependent on the individual, his/her family, and friends. If quality of life means dancing, dining out, wild parties, playing basketball/football/golf/tennis etc., you will be disappointed; however, if giving to others, sharing your experiences, doing special projects, and a multitude of other things give you purpose i.e., “quality of life”, you can be more than satisfied. People have posted that only 4% of ALS patients go on a ventilator. That percentage is for patients in the United States only. In Japan, about 40% of ALS patients are on ventilators. To me, this indicates a lack of knowledge in the medical field as well as a breakdown in the family structure here, in the U.S. Just think, 4% of 30,000 patients, about 1200 patients on ventilators. How much experience and knowledge does the medical field get out 1200, vs. 300 million? They have a lot to learn about us, and we need to explain our unique difficulties to them. I would call this process as part of my “quality of life”—learning and teaching!
Be well,
Jim AKA- pigiron308@yahoo.com
http://www.stemcellpals.com/mstory/ms.htm
Do agree with pigiron304 the Quality of Life will depend on you. My husband may not be able to talk without the use of the dynavox but he has set up a program to teach our grandchildren who will start nursery school in Sept. their colors, numbers, shapes, etc. He plays with them anyway he can. We have never been to our grandsons' schools but we also have never missed a concert. Our daughters program our phone number into their cell phones and when the concerts start they call - the concert goes into our answering machine and we get to hear it.
what you make of the situation will determine how your life on a vent or with a trach will go.
As for information regarding a vent, I do agree with pigiron 304 on that also. We have a home care doctor who actually comes to our home. She is very familiar with a vent and told us what we would have to do, etc. We had a great staff of nurses that worked with us when my husband was in the ICU and going on the vent. They prepared us for just about everything. I did have a doctor in the hospital tell me we didn't know what we were getting into and we would be living at the ER. As I stated previously, my husband has had the vent for over a year and we have never been to the hospital in that time. Thank God we had a doctor who had patients at home and knew what it was going to be like.
The words trach and vent are very scary ones but with the right information and training you can live with one.
Take care.
http://tpals.org/vent.htm
Check out this web site.
Don from Tennessee
In error I entered my comments on what I think is my blog. Whatever, I want to say thank you so very much for your comprehensive comments & information. Those of you who responded sound so upbeat and positive. Was the situation as acute as I described? My husband is so weak & uses all energy just to breathe. He is mobile with a walker & the breathing is the primary problem at this time.
We feel so desperate and it's really inspiritational to read your comments - I know there is hope.
What type of Dr does this surgery?
We are hopeful about using the bi pap until we really know what to do however we are getting to a point where it only comes off to eat & talk a little.
If this becomes part of the discussion, I will appreciate your input. Thanks again,
Fortunately you generously provided information so that when my husband collapsed on the bi-pap 052407 I was prepared. He is now home after 5 weeks in hospital & a nightmare "special" hospital for vent patients with a trach & vent. Although he has the "window" type and can talk with the balloon down, the vent makes it too uncomfortable ( he is on Assist/Control). We have a Passey Muir valve but getting our respiratory therapist and speech therapist together has not yet happened. I am thinking of an assistive speech something because I''m having an awful time lip reading & we are both frustrated. Do we get something to type on? What about if the hands are affected soon? Please share your experience/knowledge with me so we can move on. Incidentally, he is extremely weak & says every time he stands up he has trouble breathing & I can see that his heart rate goes up (107-110 ) & he begins to sweat. Is this the norm? Many thanks, .
Hi, Although Cale had no voice by the time he got his trache there are many others that still talk and eat. I can not give you their names but if you would go to -living ith ALS.com or patients like me .com you will get a lot of information, Hugs, Ginny
Harry had no luck speaking using the valve or deflating the cuff. I do know there are a lot of people who can. Harry's problem was with his secretions. Have to agree it's hard to coordinate speech and respiratory to work with you. However, I would not give up right away - keep trying for awhile. We did with Harry and now and than we had some good days with it before it became too much for him to tolerate. Our speech therapist made arrangements for a representative to come out and evaluate Harry for a Dynavox. By the time we decided, the dynavox was the way to go, Harry had lost all movement other than 2 fingers in his right hand. As a result he uses the dynavox with a infra-red wand attached to his wheelchair. He has very little problems using it at the moment.He writes message to me, controls the TV and even corrects our grandchildren when they are misbehaving. We have checked to see what would happen if he lost the movement in his two fingers and they told us they would use a switch that would be controlled by the movement of his eyes. He is also working with the Wadsworth Center in Albany, NY. They are a Research Center, working on a brain wave computer - you would control it using brain signals. He has had some good results with it but it is a research program and it has had a few problems. With this device, right now, you wear a cap similar to a shower cap and there are electrodes attached to it which is attached to a computer. You can type sentences and it will also speak. You are able to email, get on the internet with it, etc. very similar to the dynavox but if Harry was to lose all movement this would be the device that we need. Hope this has helped some for you.
Since Harry, can no longer stand, not sure what is causing the breathing problems. Do know that Harry's heart rate goes up if he is not getting enough oxygen and he will sweat. May have to call to see if you need adjustments to the vent now that he is home and maybe more activate.
Please keep in touch and feel free to email me anytime. I check almost daily to see how you are doing.
You are in my prayers
Cheryl
I just want to say that this discussion and others like it are the reason that I stay so close to this site. I am still affected only in my limbs, but getting exposure to others experiences, and learning all of this information now before I absolutely need it is the greatest education I could ever ask for. I appreciate the fact that as difficult as it is, so many are not afraid to ask their questions, and share their experiences and comments here. I hope that for these reasons many of us continue to support this site and keep this community growing. Thank you ! Jenny Hoff
Has anyone had a trach , no vent, for sleep apena. I am having one on 18.
Harry had a trach in May without the vent but in Oct. started having more breathing problems and elected to have the vent.
There are alot of support forums on Facebook for ALS. There is also a foundation called "Angel Hands for ALS" who specialize in helping PALS and CALS making the step towards a vent.
Add to the discussion