To Vent or Not to Vent
 

I recently went to clinic at UofM and Dr. Feldman told me that in the U.S, only 10% of ALS patients go on a vent, while in Europe, 80% of ALS patients go on a vent. Tell me why the discrepency? Why do people in Europe value their life more?

I don't know why for sure ..but wonder if Europe has a more supportive healthcare system for PALS...Lisa

I can't speak for other European countries but here in the UK only a tiny fraction of PALS manage to get on a vent(far less than 10%) and those that do have to fight to get the trache,vent and appropriate home care.
In some countries like Denmark,I know a lot of PALS are on a vent but I can't see it being 80% across Europe.

Why I vented
 

My children were around 3&4yo the year I became vent dependent. The past 13+yrs have not been like a stroll in the park but the good times by far out weigh the bad. I think my kids appreciate having me around all these years despite the help they've given me. I've been here to love them, advise them, watch them in sports, instruct them, teach them, listen to them, joke with them and help them with anything I possibly can. I'm not boasting but I feel comfortable saying I think they're better people having known me and I'm positive that I'm a better person having known them.

I agree very much with Dave..
Although a PALS decision to vent or not to vent is a personal one I do feel there are very few PALS that regret this decision..
A vent is scary at first and intimidating ,,,geez I remember hearing people talk about changing circuits.. and thinking to myself now do I have to become an electrician?..I'm not intelligent enough for this...well a circuit it turns out is just a plastic hose ..go figure...there are alll these complex terms that in reality are really simple little things..that have intimidating names..
When Gary was first vented..he was given the option to switch from the vent to a bipap and attach it to his trache ...( which is really a vent that can not stack air)..he said no he wanted a superior machine...he was also given the option to come off the vent for hours a day..he does come off for showers..but honestly I feel more comfortable when the vent is on him...no more sleeping with my hand on his stomach worrying he will stop breathing....and in his condition I couldn't leave him alone anyway..infact off the vent I have to watch him closer..
He had numerous complications due to the disease process and paralysis..and it stinks having to go in and out of the hospital frequently..but I'll say this when he is at home..life is sure alot easier than when he is in the hospital..at home I can do whatever I wish and my monitors will let me know what's going on...I don't worry as much either that something is going to go wrong that I can't handle ...what was at first intimidating I trust myself with almost as much as any other person..as I know his normals better than anyone..
As far as dealing with it himself..he gets on the internet mainly for sports and news , listens to his music, watches movies with the kids, talks to the kids, but really does not spend alot of time anymore thinking about the disease..he has grown accustom to being paralyzed...and does not fear the things he used too...he looks at himself more as a quadraplegic...and looks at the main dangers as secondary infections and complications due to that...which most of those are preventable and treatable..it changed the way he felt from being helpless to empowered over his care and his disease..
He is not a slave to the vent..it is a slave to him..he can use it as much or as little as he wants..disconnect if he feels he has endured too much...but for him life is much better right now than it is bad...our family does have to plan ahead make very careful schedules..have back up plans..but we did as well before the vent...Lisa

dpathome,

Similar Dave's history, my son just turned four last month. I intend to go on a vent so I can remain in my son's life as long as I can. I pray I remain in Ethan's life for 13+ years like Dave.

My now ex-wife is a registered nurse who has an addiction for narcotics. She recently was caught stealing narcotics from her once Home Health clients. Due to my diagnoses people i.e.; her old employer (s) and clients feel sorry for her and have chosen not to press charges. There's so much more to this story but I think you can get the gist of why I must remain in my son's life.

Jeff

Geia hara
I agree with Dave and Jeff !
Fotios

Dave and Jeff have raised the best points for venting. I would do it for my family. Right now I am getting by on bi--pap. During the day I can take breathing breaks as often as necessary. Or I can hook it up to my power chair and go anywhere. As long as I can get by doing this, I will.

I ask my wife if it's worth it
 

I very rarely let myself get down but last time I did I ask Deb if my being here is worth all the hassle. She puts me in my power chair M-F around 7am, gives me a tube feeding then heads for work. She comes home for lunch, feeds me and grabs a bite for herself. Gets home around 3:30-4pm and we make it to bed around 10-11p. I ask Deb if it's worth it. She says of course it is because of all the same reasons I listed for the kids. Listening, helping talking etc... Plus I pay all the bills online. She hates writing checks and paying bills. She says she'd be lost without me. In bed at night she always touches my arm or puts my arm around her. Since I can't speak, because of my cuffed trache, I squeeze her three times ever so lightly. Three little squeezes means "I love you" and she squeezes my arm back three times. I can't die yet, my income pays the mortgage and we have 13yrs left on a 15yr mortgage! LoL

Dave,

You are without question an inspiration for all PALS. I was going to send you a private message to inquire how you cope with your limitations. Now that you have shared your home life with us I would like to ask you several questions out where other PALS & CALS can also benefit from your past experiences.

1.) What has been your greatest challenge raising your children?
a.) I see my son being thrown up in the air or hugged by my friends and I think to myself, that should be me. How have you over come this scenario?

2.) How do you communicate with your wife and children?
a.) When you are out of your home how do you communicate?

3.) I fear being an embarrassment to my son once he enters Junior High School & H.S. where there are more children and parents who do not know about my illness. Perhaps this fear is my own shallow immaturity showing through. However, a valid concern nevertheless. Did you experience this hurdle?

4.) When Deb leaves for work do you have an emergency protocol if you require immediate help? Life line or similar?
a.) What happens if your vent were to fail while you are alone?

I admire your choice to remain with your family and in their lives. I hope you do not find my questions to personal. I haven't seen many PALS post their home life challenges. I would like to thank you for expressing your feelings.

Sincerely,

Jeff

Hi Dave..
I noticed in your reply you said you can't talk in bed...it's just an idea,,if your speech computer is portable...you could get one of those hospital type bedside tables inexpensively ..
I keep Gary's speech on all the time and keep it on the bedside table...the only time he has no speech is in hospitals or while he is in the shower..he sleeps in a hospital bed airmattress but I roll over half the time and sleep with my head on his chest...the table doesn't get in the way......our beds are combined as one of the guard rails are down so it is like one huge king size bed..his side just has a special mattress...Lisa

[Being able to hug or hold them was always tough because I always missed that. Like you said, tossing them into the air and catching them is something a Dad should be able to to do but since I never could I'm thankful that there was always someone around who could and did. We have to learn to accept the physical things that are impossible for us to do.

Deb and the kids can read my lips extremely well so communicating with them isn't really a problem. If I'm away from home my laptop with E Z Keys is velcroed to the computer tray on my power chair so if I'm near an electrical outlet I can use my computer to communicate. If not, Deb or the kids translate.

If you're with your son through all his school and sports activities from the very beginning all his friends, classmates and their parents will be acquainted and comfortable with your situation. That's totally on you. It takes some guts to put yourself out there and risk some embarrassment but it's worth that personal risk for me. Like I said in an earlier post, the kids were like 3&4 or 4&5 when I became vent dependent so it took some courage to go to their first school activities for me and them. It paid off in the long run because by the time they were in Jr High and High School many of their friends had learned to read my lips and some were even brave enough to suction if Deb or the kids was busy with something else.

Oh I'm very seldom totally alone if I'm on the vent. Occasionally Deb will run a short errand to the bank or out to get milk /bread and leave me alone but not often. Sometimes I can talk into taking me off the vent so she can run errands. I feel 100% safer off the vent if I'm alone because I can breathe on my own for an hr or more with no problem. Deb's afraid I will collapse a lung if I'm off long. I'm more comfortable off the vent when alone because if I'm hooked up and the vent malfunctions I'd be dead in 15-20 minutes. I know this from experience but that's a whole other story. LoL

When Deb leaves for work I have someone with me. It makes me so angry when I hear people say it costs $250,000-$300,000 to care for a vent dependent PALS at home. You don't need an RN CNA or any professional help. You can train anyone to help. This isn't rocket science or brain surgery! Luckily we have found carers who will sit with me for $30/day three days a wk and my father-in-law helps the other two days. My carer only suctions me a few time a day when needed and does laundry. I don't need to go to the bathroom or anything during the day. Well, I use condom catheters so urine needs emptied from my leg bag a couple time daily.I don't need nursing even though I'm on the vent 24/7. One girl who worked for us a yr had a 2yo daughter she brought with her. They ate here, done their laundry here and only charged us $75 for five days a wk. We helped her and she helped us. The girl we have now is between jobs and would rather be here helping us than sitting home doing nothing.

Jeff, my life with ALS is an open book. I may still be alive because my purpose in life is to help other PALS who are struggling with things that I might've already overcome. Some people have told my family and I that we make living with ALS look easy. Well, it isn't easy but but I feel the good times by far out weigh the bad!

Jeff...I agree with Dave that is dangerous to be on the vent when no one is there...as Gary can breathe off the vent ...but if only part of the hose becomes unattached it would be like breathing through a garden hose..he'd only have minutes to live..
However, due to the risk of mucous plugs off the vent I never leave him alone.. not that the risk is higher but if I was gone I could hear no alarms or see any distress.. I'll walk out of the room but not the house...a collapsed lung is not an issue however from coming off the vent if one has their own respiratory drive...as collapsed lungs or pneumothoraxes ( partially collapsed lungs) are caused by too much positive pressure or blunt force trauma...atelectasis could be possible however if one stays off the vent too long...but we've had no problems with that as x-rays can detect it..atelectasis has not occured since he has been ventilated even with the time off of the vent .....
His doctors actually considered taking him off the vent to treat a pnuemothorax before putting a chest tiube in..as normal breathing is negative pressure as oppossed to the positive pressure that all ventilators are based on ...but said if he could not breathe for 24 hours ..it could not resolve on its own ..most PALS will never have to have a chest tube...it is only caused if too much positive pressure occurs...if it does occur a chest tube comes out in 3-5 days...
Lisa

Linda Lisa,
I thought you were limiting your computer time more carefully now? You're on as much as I am, or more! LoL

I don't breathe deep enough to fully expand my lung. Thus doc said it could collapse. I don't know all those big fancy words you use but what the dr said makes more sense to me.

Hi Dave..
I think your refering to atelecatsis...a collapsing of tiny air sacs in the lungs ...not a collapsing of a lung itself ...atelectasis and pneumothoraxes are treated oppossitely...atelecatsis is treated with ventilation of positive pressure and an increase of Peep..where as a pnuemothorax or a partially collapsed lung is often treated with the negative pressure of a person breathing on their own ( as all vents, c-paps and bipaps are positive pressure) and by reducing peep..for full time or almost full-time ventilated PALS a chest tube is the only way to resolve a pneumothorax..as they can not breathe long enough to resolve them on their own.....
Of all the problems Gary has had since venting ..although atelectasis was once feared by docs when coming off the vent due to his low tidal volumes .it is easily seen on x-ray and has never been found..so he is still encouraged by his docs based on his last vent bypass parameters and chest x-rays to continue coming off...
Most PALS who are told they can come off a vent safely are given weaning trials ..to see how long they can bypass a vent..their stats are monitored contunously in a hospital setting ...docs typically order chest x-rays to insure atelectasis does not occur..before a recommendation is made for coming off the vent at home....I wouldn't however encourage PALS to come off a vent if your doc does not recommend it...Lisa

Thanks Dave, Lisa & other members for your opinions and experiences regarding the vent. I hope members like myself will go into the vent no vent scenario with greater confidence.

Jeff

Jeff,
Your welcome !!!
I'd just like to make one more quick suggestion to PALS whom are seriously contemplating a vent...
Get in touch with a social worker of a hospital or a case manager to fully explore all of your options..
Many who are low income may have Medicaid coverage as well that they qualify for, in our state there is even a Medicaid waiver that some middle income families may qualify for,also get them to help check into all of your insurances to find out exactly what is covered..as there maybe coverage options you are not aware of..
Planning ahead and being able to utilize all resources available...will greatly benefit many PALS...Lisa

Lisa,

You've brought up a valid point. I have started a new thread addressing Medicaid. I am trying to prepare for the life ahead of me with being placed on a vent. Frankly, it is scary as Hell to plan for. For my life and living arrangements Medicaid is a joke.

From where I stand and looking into the near future, going to a vent is a double edge sword. I want to be in my sons life for as long as I can but, with the Medicaid qualifications I am better off dead. I have my ex-wife (aka... Spawn) receiving my son's monthly Social Security (SS) benefit. If I am dead the Spawn will receive my full $1,793.00 per month until my son turns 18 years of age. Catch-22.

Jeff

Jeff..I know you are frustrated..but please contact a hosptal social worker..and see if they can help...Lisa

[
Quote:
QUOTE=JAH39;27099]Dave,

You are without question an inspiration for all PALS. I was going to send you a private message to inquire how you cope with your limitations. Now that you have shared your home life with us I would like to ask you several questions out where other PALS & CALS can also benefit from your past experiences.

1.) What has been your greatest challenge raising your children?
a.) I see my son being thrown up in the air or hugged by my friends and I think to myself, that should be me. How have you over come this scenario?

Being able to hug or hold them was always tough because I always missed that. Like you said, tossing them into the air and catching them is something a Dad should be able to to do but since I never could I'm thankful that there was always someone around who could and did. We have to learn to accept the physical things that are impossible for us to do.
Dave, I should be looking at what I can offer Ethan rather than thinking of what I cannot do due to my limitations.

Quote:
2.) How do you communicate with your wife and children?
a.) When you are out of your home how do you communicate?

Deb and the kids can read my lips extremely well so communicating with them isn't really a problem. If I'm away from home my laptop with E Z Keys is velcroed to the computer tray on my power chair so if I'm near an electrical outlet I can use my computer to communicate. If not, Deb or the kids translate.
I am researching what I can do for a work table or laptop holding device for my Permobil C300 Wheelchair. Open to suggestions from owners of Permobil.

Quote:
3.) I fear being an embarrassment to my son once he enters Junior High School & H.S. where there are more children and parents who do not know about my illness. Perhaps this fear is my own shallow immaturity showing through. However, a valid concern nevertheless. Did you experience this hurdle?

If you're with your son through all his school and sports activities from the very beginning all his friends, classmates and their parents will be acquainted and comfortable with your situation. That's totally on you. It takes some guts to put yourself out there and risk some embarrassment but it's worth that personal risk for me. Like I said in an earlier post, the kids were like 3&4 or 4&5 when I became vent dependent so it took some courage to go to their first school activities for me and them. It paid off in the long run because by the time they were in Jr High and High School many of their friends had learned to read my lips and some were even brave enough to suction if Deb or the kids was busy with something else.
You are so right with your line of reasoning. Ethan turned 4 last month. So it is hard to look into the future and imagine how Ethan's friends will accept me. Being divorced adds a slight twist to the scenario because Ethan will have friends from my neighborhood and from his moms neighborhood plus from his school. The ex lives in the town west of Wichita so E will attend school there. [

Quote:
4.) When Deb leaves for work do you have an emergency protocol if you require immediate help? Life line or similar?
a.) What happens if your vent were to fail while you are alone?

Oh I'm very seldom totally alone if I'm on the vent. Occasionally Deb will run a short errand to the bank or out to get milk /bread and leave me alone but not often. Sometimes I can talk into taking me off the vent so she can run errands. I feel 100% safer off the vent if I'm alone because I can breathe on my own for an hr or more with no problem. Deb's afraid I will collapse a lung if I'm off long. I'm more comfortable off the vent when alone because if I'm hooked up and the vent malfunctions I'd be dead in 15-20 minutes. I know this from experience but that's a whole other story. LoL

When Deb leaves for work I have someone with me. It makes me so angry when I hear people say it costs $250,000-$300,000 to care for a vent dependent PALS at home. You don't need an RN CNA or any professional help. You can train anyone to help. This isn't rocket science or brain surgery! Luckily we have found carers who will sit with me for $30/day three days a wk and my father-in-law helps the other two days. My carer only suctions me a few time a day when needed and does laundry. I don't need to go to the bathroom or anything during the day. Well, I use condom catheters so urine needs emptied from my leg bag a couple time daily.I don't need nursing even though I'm on the vent 24/7. One girl who worked for us a yr had a 2yo daughter she brought with her. They ate here, done their laundry here and only charged us $75 for five days a wk. We helped her and she helped us. The girl we have now is between jobs and would rather be here helping us than sitting home doing nothing.
I feel I am far from needing a vent but then one never knows what the future holds with ALS.

Quote:
I admire your choice to remain with your family and in their lives. I hope you do not find my questions to personal. I haven't seen many PALS post their home life challenges. I would like to thank you for expressing your feelings.

Sincerely,

Jeff

Jeff, my life with ALS is an open book. I may still be alive because my purpose in life is to help other PALS who are struggling with things that I might've already overcome. Some people have told my family and I that we make living with ALS look easy. Well, it isn't easy but but I feel the good times by far out weigh the bad!

Dave, I hope our discussion is informative to PALS facing challenges that will be facing me in the near future.

I will admit that I was an individual who would look past a person in a wheelchair. I never thought about what challenges they had on a dailey basis. I "never" imagined myself in a wheelchair. I have always been competitive in sports and in my career but Ethan has given me a strength that I never knew I had. I hope and pray other PALS who have children will find the strength and courage that you have demonstrated in your life Dave!

Dave, you have proven your endurance to over come so much in your life. Your endurance has given me a challenge in my life as I hope it has for other PALS who are contemplating the vent.

Respect & love,

Jeff