Respiratory Failure 101

[Duker52]

I don't mean to be morose, but this is something I know only bits and pieces about. Not to offend anyone, but my greatest fear is losing control of my extremities and not being able to move. I want to die of respiratory failure long before that time comes. My respiration three weeks ago was down to 50%. - down from 70% three months prior to that. I still can walk (barely) with the use of a cane and both my arms and hands function, albeit very weak. I am currently using BiPAP a few times a day, but don't sleep with it. I have bulbar onset so can no longer speak or chew. I just got a feeding tube but haven't used it yet.

My questions are: 1) how do you know when to call hospice, 2) I want to die at home so will hospice make home visits?, 3) I have seen references to the use of morphine to ease breathing difficulties and anxiety -- does hospice administer this or does the CALS, 4) I understand there will be a specified amount to administer to help ease distress, but will using a little extra help the PALS cross the bridge? 5) is using the BiPAP helping me avoid respiratory failure? 6) how you know you are actually going into respiratory failure?

Are these normal thoughts? I am so damned tired of this cruel disease, I just want it to end.

Thoughts and comments would be greatly appreciated.

Bill

 

[Nikki J]

I am sorry things are moving quickly for you

Before you call hospice get all the equipment you need- in your case a pwc and eyegaze you already have feeding tube and bipap. In my experience hospice may cover things like a bed or mattress but not a pwc or eyegaze

After you get that- a long process then hospice is likely a good idea- support for you and your spouse

Hospice absolutely comes to the home. It is worth interviewing a few to see what they offer. Pick a non profit one.

Generally the CALS gives the meds. hospice in the home is not a round the clock thing unless you are clearly dying ( I think it is death expected in less than 5 days) then it might be 24 hours. You can medicate for comfort and if comfort requires more than what is " safe" the need for comfort supercedes. It happens in homes, nursing homes and hospitals every day in every state
Is bipap prolonging things? Maybe. Is it worth the discomfort of not using it to speed things? Up to you and your spouse

Yes it is normal to have these thoughts Really think it through though and talk to your other half.

 

[gooseberry]

When I asked about this, my husband was below 30% fvc which is considered respiratory failure. Some people use bipap and stabilize others keep progressing. When Steve hit 30%, they stopped pfts and offered a script for meds.

 

[Atsugi]

Totally normal thoughts, Bill.

I believe there are locked-in people who say they still have quality of life. Maybe one will pipe up.

Here's all I know from experience.

My own PALS died about as well as someone can, I think. She had a very rapidly moving variant from the feet upward. About 9 months after first symptom, she was bedbound, so we called hospice.

Hospice is not a place--it's a concept of care. We had hospice in the home. At first, a nurse visited once a day, and there was a box of meds in the fridge. We signed an agreement that if the patient had a medical problem, we would not go to the ER, we would call hospice.

Soon, hospice changed her status from palliative care to crisis care, and gave us 24/7 nurses. We found they were not familiar with paralysis or ALS, so we decided that my family would do the actual care, and I would teach the nurses to monitor my PALS, and I could get some sleep.

The hospital bed was in our living room so she would be included in all the family activity. The medical machinery was kept out of her sight, so it looked to her like a living room. I put my bed right next to hers.

My PALS/wife was an experienced medical doctor. She made all the decisions very early on. No tubes, no feeding, no IV. She wanted no life-extending stuff. She accepted a catheter so she could pee without making a mess. We kept her comfortable, talked to her, touched her (very important).

When she felt air hunger, we gave her morphine to eliminate that feeling. When it wore off and she had air hunger again, we increased the dose. So during her last week/day/hour, she had no fear, no panic, even though hardly any air was going in, and the CO2 was building up.

I kept her presentable with clean bedding and nice bed clothes. I simply cut the backs off her night shirts and wrapped them around her so she appeared to be well dressed and sitting up.

Anyone can give the morphine. Since the purpose of the morphine is to relieve suffering, you can continue to increase the dose as far as needed to relieve suffering, even when it surpasses the fatal dosage.

One morning, her eyes stopped blinking, stopped moving. There was no longer any way to communicate. I don't know how conscious she was, or if she was totally high instead. That night, her heartbeat faded to nothing as her family stood around her holding her hands.

So that's my experience. It seemed to be comfortable both physically and emotionally.

 

[tripete]

Bill,

I am respiratory onset and my FVC is well below 50%. I use my BiPap at night only, I do not use it during the day as I believe it will prolong things. If I do not use it at night then I feel like I am suffocating (anytime I lye down) and cannot sleep. Like you I can still walk and use my hands. At my last clinic (last Wednesday) they marked my left hand at about 5% of normal functionality as well as my left foot around 7%.

My intention is to get Hospice here when it seems the right time (I do not know how to tell when the right time is I am "playing it by ear"). The advice about getting Medicare to pay for your PWC and other tools is the same I was given by the docs. If you don't get it before Hospice then medicare wont pay for it. I have struggled with this as I don't want their PWc at it does not seem at all practical and I also hope my breathing will end my life prior to being fully paralyzed.

To that end I am trying the Lunasin to try and keep my limbs working. I don't know if any of this helps you. except to say that you and I are thinking alike.

Last week I was in the bathtub and my wife was out in the garden. I slid down because my trunk muscles would not hold me up. My face was above water but due to the bad breathing muscles and the prone position, I could not breath. Eventually she came in and heard me "squeaking" for her. She got me up and on my BiPap machine and I fell asleep for the night. Not a great experience but one that for me made everything even more real than it had been. I thought of Gooseberry's Steve when I was stuck in the tub, as he passed when he was not able to get up either. This disease is terrible to put it mildly.

 

[GregK]

Pete,

I have to raise this...

You don't use bipap during the day, which would make you less exhausted, because you do not want to endure this longer then you have to.

But then you take Lunasin, which is hoped to extend life.

Wtf? I think you're suffering for no good reason.

 

[tripete]

Greg,

The lunasin seems to have reversal possibilities. The BiPap only extension. I am not interested in extension but reversal. And if not reversal, so far from what I have read, the Lunasin seems to help with limbs. I hope that my limbs hold on longer than my respiratory maybe the Lunasin can help with this?

 

[Jhill]

My experience with hospice for my Husband was very similar to Mike's.
We brought them in as soon as Bob decided he did not want a feeding tube or Trach.
Bob was limb onset and very quickly lost all mobility. The lungs were next and he used the trilogy 24/7.
It wasn't until the last 2 weeks that breathing became an anxiety issue. We started the liquid morphine and liquid Ativan every few hours in the beginning of this breathing decline.
After a few days, the morphine was doubled and could be given every hour, if needed.
With the morphine and Ativan, Bob was comfortable and had no anxiety.
The night before he passed away, he slipped into a coma like state. About 15 hours later, he passed away peacefully.
As regards to the amount of morphine and me asking whether I could him more, if I thought it was needed, our hospice nurse said we have no control over what the family chooses to do once we leave.
I hope this helps.


Hugs
Joan

 

[SKlocinski]

My husband was on hospice care for only a very short time. He requested about a month before he died for me to make his funeral arrangements and to get him on hospice so I am sure he knew his time was short. He had bi-pap but would not use it. He also had a feeding tube but could not or would not allow me to feed him enough to sustain life. He was very fatigued but all of his limbs still functioned, although they were weak. The week before he died he began having hallucinations and wanted me in the room with him at all times. Two days before he passed away the hospice nurse came and gave no indication that he was actively dying but I sort of knew because of the hallucinations. He went to sleep in his recliner. I saw him take a couple of deep breaths and he was gone. He did not appear to be agitated or anxious and he was not gasping for air. He went very peacefully.

 

[patoyeah]

When I asked about this, my husband was below 30% fvc which is considered respiratory failure. Some people use bipap and stabilize others keep progressing. When Steve hit 30%, they stopped pfts and offered a script for meds.

May I ask, what r pfts? And I am sorry for your loss.

Bill u raise smart questions, I do not know the answers, but obviously the generous cals here do.

cals u make living with this easier, as well as passing

I do not know how to do it, but i have heard some folks have gone on hospice, stop it, then go get equipment through Medicare, then go backon hospice.

Its more prudent to get all the equipment before hospice, but it seems some know how to work the hospice system

But if somebody wants to go pronto, the equipment may not matter...though from what I have read, I reccomend a feeding tube, it can make the final stage easier.

Take care,

Pat

 

[GregK]

Pat, PFTs are Pulmonary Function Tests. Svc, svc%, etc.

 

[patoyeah]

Thaks Greg. Are we limited on the amount of times we can use the thank u icon per thread? The last few posts, that icon seems unavailable to me.

a smoke up the kilt limit?

 

[GregK]

Not that I'm aware of. And you have a good memory!

 

[lgelb]

Hi, Bill,
(1) You don't have to use them. But if you want them, you'll know when.
(2) Yes, that's the mainstay of what they do, as others have pointed out.
(3) Ask before you sign on how they handle this. Individual staff preferences and/or religious affiliations may play a role. But in most cases, they are not there 24/7...
(4) Near the end, titrating the morphine to comfort will likely speed the end. The more emphasis on comfort, the speedier the end. So this is where you want to have ground rules up front with your CALS.
(5) Delaying, not avoiding. But also making physical activity more possible for longer, generally. When you struggle for breath, your body can't do much else.
(6) When the BiPAP at optimal settings isn't preventing air hunger or discomfort and/or when you can't/don't want to transfer or walk any more.

Bonus round (7):
If you don't want to be held hostage to impending respiratory failure, plan otherwise.

Best,
Laurie

 

[Nikki J]

Daily thanks limit is 5 Pat