Ventilator

[tallmelfitz]

My father was diagnosed (confirmed on April 22nd, 2008. His diagnosis was early, having experienced problems with his right hand in late 2007.

He had his 3 month check up at Columbia this past week where they indicated his breathing was now less than 50 percent and was in need of a ventilator. He also now qualifies for hospice care.

Our family is large with my parents having 5 children, all ranging in ages from late 20's to mid 30's. We are a very strong ,supportive family of my 61 year old father but this is just a nightmare. How could a disease take such great people from this earth?

My intent is to 1) introduce myself and 2) ask if anyone has any thoughts on the ventilator. The doctor said my father could increase his life span by 8-12 months and eliminate the poisonous carbon that is not being allowed to escape from his lungs.

We are doubtful he will want this as we've reached that feared turning point of macines helping him live. So any advice is helpful.

Thank you in advance for your response.

 

[joelc]

If you have spent any time reading posts you will have found that I am a promoter of ventilating. It you scroll down to the bottom of this page you will see a few other links where this has been discussed before, you might find it to be interesting reading.

You can live much longer than your doctor said, there are PALS that have lived for decades after being ventilated. I am and live a very rich and full life. I also plan on being around for at least the next 20 years.
Don't believe your doctors about life on a vent - it is GREAT!

 

[BethU]

Hi, Tallmelfitz ... I don't have a vent ... I'm just at the point of getting my feeding tube ... so this is just an uneducated opinion. Having read the enlightening posts on this topic, especially from Joel, it seems to me that if an ALS patient has strong family support and caretaking, as Joel does, then having a vent can indeed provide a longer, comfortable, vibrant life.

From what I can gather, the care required to maintain the vent is not difficult or unpleasant. But it is something that requires some training and a dedicated support team, which is why I think family care is important.

Machines help many of us live ... from pacemakers, to BiPap, kidney dialysis, feeding tubes, etc. Read all of Joel's posts ... they will give you a great overview of what's required and how fully life on a vent can be lived. Also, read posts from QuadBliss.

Blessings to you and your dad and your family ...

 

[Al]

Check the threads on vents at the bottom of the page here. More information there.

AL.

 

[jpsugar123]

Say Yes to the Vent

Bottom line: If dad wants to live, get a vent. Who's to say what will happen after he gets a vent. My mom got one this past summer (June '08) after lots of research on my part. Now that mom has a vent, we don't have to worry about her suffocating to death. I am just thankful that I have another day with my mom. She wanted to live and we wanted her to live no matter what it took. We have nurses 3 mornings a week. My husband does Monday afternoons for 2 hours until I'm home from teaching. My husband does Fridays along with my sister who gets off work at noon. My dad and I do the evenings and weekends. My parents have been living with us for the past 3 months because their basement flooded and they are in the middle of a lawsuit. Before that, we all still took care of her. I am a HUGE advocate of the vent. Some people are freaked out by it and potential infection. Heck, I could get hit by a bus tomorrow. Who's to say what tomorrow will bring? If dad wants to, go for the vent. It will be a LOT less stressful after you get the care for it down pat. It's easy to care for a vent patient I think.

 

[freddiesnetty]

I would have to agree, my freddie is vented, it has not been a smooth transition. I think it is a personal choice. I would of done whatever he wanted to do. And I would have to agree with jpsugar, we all are going to die of something. So if he wants to have a vent then so be it, it is not as hard as everyone thinks...........just a thought......
Talk with joelc, he has had alot of success with his......And he will tell you as I will, alot of it has to do with the will to live........You can do lots of things with the vent still.
netty

 

[joelc]

I am convinced that one of the secrets to an easy transition to a trache and vent is getting it done early - before it becomes an emergency. The healthier you are the quicker the recovery time. I was awake and doing well 30 minutes after the surgery started and was talking 18 hours after and have been ever since. Because of the vent I will be able to live for decades.

 

[grp_believes_in_God]

Hi tallmelfitz
Sorry to hear about your situation. I fully understand what you are going through because I went through the same things 2 years ago. I decided to put my dad on vent. Unfrtunately he was in no condition to intelligently give his feedback on whether he would want to live that way. He was too weak and unable to communicate when we took this decision. When he had couple of respiratory emergencies, we didn't have any good choices. One choice was to rush him to ER, make him stable nough and then bring him back and wait untill the next emergency (painful). Another choice was to not do anything and let nature take its course (painful, but with quick end, hopefully). And of course the last choice was to put him on a vent which was nothing but postponing the inevitable. We choose the later and put him on the vent. On the brighter side it did extend his life by about 1.5 years and we had the pleasure of having his company. We loved him during that period like we never did before. I am sure he appreciated everything that we did. On the down side, as the illnes progress he had to go thru unimaginable pain and suffering. It was really a slow, painful and worst of all silent death because he could not utter any sound due to the tracheostomy or use his hands. He had to bear everything without doing anything about it.
So you have to weeigh your options and may be think about what the people close to you and your dad think and most importantly if your dad can communicte then take his opinion as well. I hope God gives you the strenght to take the right decision.
Good luck and God bless

 

[Twins]

Advice

I am new to the Forum. I have a twin daughter who is only 4 months old. The neonatal doctor told us that she has myopathy. They are not 100% sure until a muscle biopsy is performed. She is unable to breath on her own and getting assitance from a vent. Since she is unable to swallow her secretion, she is being feed to the nose. Her twin sister is fine. All her joints are stiff. She has no mobility at all. She could move her fingers. Is there any doctors available in the US that has knowledge and experience with treating myopathy? The doctor only gave us 2 options...trach with g-tube to prolong her life...other option is let her go peacefully. It's a very difficult decission for my wife and I to make for her. We have never taken her home or heard a word from her not even her cried. Is there anyone you know of in this forum taht had to go through that we are going through now? YOur help is greatly appreciated.

Thanks!

Vincent