Venting at 68 years

[Beach Bum]

Had a meeting with a very respected pulmonologist today.I have had some breathing issues at night and have been sleeping in my recliner for appox six weeks now.VA has a hospital bed due at my house tomorrow at noon.Had the breathing test today and my FVC in june was 87%,today 53%.He will be getting me the Bipap,cough assist and nebulizer devices,plus I have a yeast infection on my tongue.He told my I should be thinking about venting.Joel,everybodys friend,strongly suggested it,to me it was common sense,but at 68 I am not so sure.Has anyone here,or anybody know someone at my age that has had it?-------I love ALS--------Ken

 

[momofsixkids60]

Sorry, Ken can't give you my 2 cents; but will you take a nickel's worth instead. You and Ann and the others helped me through the darkest time of my life!

And I know we as in everybody on earth are a selfish lot. We don't want to see anyone suffer but yet we can't let that person go either.

I pray that those who have had it done, respond favorably. Now its my turn to be selfish, I want to make plans to meet you soon!

 

[tomby]

hi Ken,
you'll get much better rest with the bipap, and i thinkmany people plateau somewhat in lung function after going on bipap. I hope its a long way for you from 53% to having to make this call, time to give it all the thought and prayer you need to be at peace with your decision.
Tom

 

[HelenL]

Ken, I can't advise you at all for the vent, but would say that at age 68, you have a lot more life to live and to contribute. To me, it's only common sense: if you want to breath then go for it! Sending you a hug my friend.

 

[notgivnup]

Aloha Ken, I am not quite that age yet and dont know what I will do either if faced with this decision. But I think Helen said it well, You have more life to live and if you need some help breathing, then go for it. We want you here with us and as comfortable as possible...((HUGS))

 

[TedH5]

I know that even before my surgery going on bipap was helpful to me. I do not personally know anyone on a vent. It is obviously one of the more debated topics by ALS patients. Personally I believe it is a very personal choice. There is no clear cut right answer. It is what is right for you. If it is what you want then your age, at 68 you are still young, should not be a factor in your decision. You do what you think is right my friend.

Stay Strong and keep the faith!

 

[mysticunicorn66]

My sis has opted not to vent. She does not want to be kept alive by a machine doing her breathing for her. She said that the sooner this s.o.b disease is finished with her, the better. Of course, she doesn't consider her life as it is right now, living, either. She gave permission though for the BIPAP. These are her decisions, and I told her I would stick with them, even if the family wants to hold on to her longer. After her discussion with the hospice nurse, she doesn't want a feeding tube at this time either. She told me that she remembers having pleurisy and doesn't want pneumonia because being that she can't endure being in a sitting position for more than 5 minutes due to yelping in pain from her tailbone, that aspiring on feeding tube contents would be a pretty high risk.

 

[joni51]

Remember the football coach that was from pine mountain, ga his family was on extreme home makeovers. Anyway, Bruce's rt that brought out his cough assist, and bipap is also his rt. He is vented, and she says it is something about the size of the bipap maybe a little larger, she says he goes everywhere with his. Ballgame..etc. I personally hope you stick around since you are my friend...

 

[hopingforcure]

I sure want you around, you are a sweet-heart. I know that everyone in your life would want you as long as you want to be around. I lost my mom when she was 68, I miss her everyday, I wound want whatever she would have wanted though.

 

[Alyoop]

Omg. I WISH my government and Doctors could read this and give the right to life for MND sufferes her. It's breaking my heart.

 

[LizT]

Ken- take away the ALS... do you feel 68? Do you think you have lived a long enough life? Have you done what you want and seen what you want to see? Age is a number- a mindset. Just because you may be older than some doesnt mean you dont deserve to live longer if you so choose. You have to decide if 68 years is enough for you.
On a more personal note- I want you here with us. You are one of the folks I really look forward to hearing from and talking with. You are dear to me. But... this is not my decision and of course I will respect whatever you choose.
And, well, you know me... Ive got a "thing" for older guys LOL

 

[abbas child]

Dear Ken,
Once you get your bed set up, begin using the bipap and other helps, and get rid of the thrush...I believe you will know what you want to do. You'll feel a lot younger by clearing out the current miseries, and probably realize you're only 48 after all.
Just guessing!
Ann xoxo

 

[Magpuff]

Well, my husband and I have been active our entire lives with fishing, nature hikes, and world travel.

I am not to the bi-pap or vent stage yet but if I could still enjoy the wildlife and nature in my backyard and not be a burden to my husband, then I would choose to vent. If I were confined to a nursing home....probably not.

By the way.......I'm 71 and my husband is 78.

 

[pmbenb83]

Hi Ken,
Sorry to hear you're not able to rest well at night and having breathing difficulty. My husband is now down below 19% and his BiPap along with oxygen at night give him rest. He is on the BiPap almost 24/7 now. His doctors told him that he could wait until the very last minute and decide he wants to be vented, so I think you have some time to make this decision. I personally wouldn't wait to the last minute though, but wanted to let you know what his doctor said. I'm not as daring as my husband to push the envelope... so to speak.

Take care and good luck with the BiPap!