beginning of respiratory failure?

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worrieddaughter77

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I can't handle it... My dad has been coughing for about 2 weeks now. He starts at about 7pm and it continues on until about 2am. It's so difficult for him and the rest of us to sleep. And I just don't know what to do!!!

It seems that the reason for his cough is a partial collapse of his left lung, as the recent x ray showed. I haven't heard from his dr about what to do about it, but a quick Google search said that he needs to do what he's doing already: the vest and cough assist.

I don't know how to handle this. I'm clearly sleep deprived from all of this. his cough is so labored and loud. i want to help him so much but i just don't know what to do... he is so weak, sleeping with his bipap for most of the day.

Is this how respiratory failure starts? Is there a way to reverse the lung collapse? Or is it only going to get worse. Is there a way to make it more comfortable for him? All of these questions that i don't have answers for, and a long wait to hear anything from his doctors...

I am looking into hospice options for him, too.
 

KarenNWendyn

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The treatment of a collapsed lung varies according to the extent of collapse, presence of other underlying lung disease and how aggressive you and your dad want to be about all this. A simple partial lung collapse in an otherwise healthy person often resolves spontaneously, sometimes with high-flow oxygen. In more complicated situations, a chest tube may be required to help the lung re-inflate. Since your dad had ALS, the situation is complicated and makes it less likely the lung will re-inflate on its own. I’m hoping your dad is seeing a pulmonary specialist. They can determine what treatment will work best for your dad, depending on how aggressively you want to manage this.

I’m so sorry you’re losing sleep. I’m sending healing thoughts your way.
 

affected

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I'm so sorry - Karen gives sound advice about the extra complication of this episode being in a PALS and the likely recovery differences compared to an otherwise healthy person.

What are your fathers wishes in this situation - is he asking to be kept comfortable or to attempt to treat this? Somewhere in all this it does come down to his decision and maybe if you can get hospice in there immediately they can talk with him about this in a respectful way to help him make some decisions.

It seems a lot is being left for you to try and figure out which is really hard. Being a CALS is tough, OMG is it tough! We understand, and we will support you how we can.

How soon can hospice come and assess the situation?
 

affected

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snipped from the other thread:
My dad's final wishes: This one is a serious problem for me. My dad is from another country and culture. He does not understand the individualism culture of Amerca. He told us that he wishes that we (me, my brother, and my mom) make all of the health related decisions for him, including end of life.
I really think that if you bring hospice in ASAP and have them do an interview with him, with you there of course - talk to them first and fill them right in that he is making you figure it out and that you want to just know his basic wishes. They are trained in talking to people about this.

You don't need him to go into detail of what he would want in every scenario - just his basic wishes so a strategy can be enacted for him.

I bet he is scared out of his wits - what PALS isn't? From his culture he probably feels he has to be brave and strong and just look like a rock. I hope hospice can help him articulate what he wants so that you can advocate for him and honour that.

You don't know my story, but in brief - my husband also had the dementia that often goes with ALS. Fortunately before it really took hold he filled out his wishes so I knew what he wanted. After that he made many decisions I did not agree with, but I honoured every one and advocated his right to do it his way. But when it came to end of life (11 months after diagnosis) he said - no more hospital. He had been through an awful pneumonia and fungal infections after and we had zero breathing equipment. With the help of palliative care (kind of like hospice in the home - I'm in Australia) I was able to give him a very dignified and peaceful end of life.

If they can just help you get a clue to what your father wants, I can tell you that it will give you so much peace afterwards despite the horror of grieving losing them.
 

worrieddaughter77

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things have been very busy with the holidays. Lots of family from my husband's side came over for the holidays. it has been very busy with the baby, my dad and the visitors. On top of that i somehow managed to finish teaching my class, graded all of the 200 students, and we even had a very successful open house presentations with the press covering it and all. This made it so much harder to say goodbye to my 15 course assistants as I'm going on a family sick leave for three next semester. i love my job and I'll miss it.

In the meantime, my dad have had many losses. Last time driving, last time walking without a walker, last time getting outside of his room unless going to the dr.. The good news is that his respiratory function is good enough for the peg tube to be placed on January 15. the bad news is that he is still coughing for about 2 hours on average every night before going to bed. And nobody can solve this puzzle, the drs don't know the reason for cough or how to stop it.

i feel like i got numb somehow. it's all somehow easier. I honestly thought we were losing my dad a month ago, and now it seems like we got him back, so i relaxed and refuse to get sad again. however, today i feel like the realty is creeping in.

It was very sad to come back to the forum and see how many people we lost. I'm sorry for your losses soonerwife and ctollar :'( I'm scared of what's coming.
 

Chincoteaguer

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My wife (PALS) and I have had this awful cold/flu for several days. She actually said she was feeling better. Last night she started coughing again. No sleep until 6 this morning. I guess from reading the above post I should be thinking the cough might be ALS. A Little background: While recently diagnosed (12-20-2017) I suspect ALS has been present for 2 years. Falling, slurred speech, difficulty walking, etc. have been with her since @ least 1-16. Doctors suspected stroke or after affects of chemo but neurologist confirmed ALS 12-20. A related question: should I register her on the national registry for ALS? They ask for much personal information and I'm leary of scams.
 

lgelb

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WD, if your dad is comfy with BiPAP and then starts coughing (when not on it?), the logical conclusion is that he needs it more hours. He may be OK without it for a little while, then the muscles get weak, spasm, etc. with or without debris they are trying to push out. With a nasal mask, he can still eat and talk if those are possible.

VA, the national ALS registry is legit, for research and not a scam.
 

Chincoteaguer

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Thanks again Laurie
 

Herdaughter

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Dear worrieddaughter,
You are amazing. I can’t imagine doing all you do plus caring for your dad. I hope you are able to take a little beak even if it’s a nice hot bath and cup of tea.

Tillie mentioned hospice and I can tell you from personal experience that the hospice folks are like angels. I wish we had them involved much sooner in my mother in law’s journey with breast cancer. They are so respectful, caring and gentle.

My mom (PALS) is meeting with two palliative care people on the 2nd. They are part of the hospice team. She has been unable to tell anyone what she wants for care. She’s still in denial to a certain extent, so I was thrilled when she wanted to meet with these folks as I think (hope) they can help her emotionally as well as physically.

Much love to you and your family.
 

worrieddaughter77

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Hello everyone. Thank you for the nice messages. I wasn't much on the forum lately because everything seemed too much.

I'd like to update you all with everything that happened in the meantime. I hope I'll be able to do that as my little toddler is asleep. She turned 1 recently and giving us a lot of trouble with walking and talking. She is also such a joy for all of us.

Well, my dad's cough is just ALS. Her figured out that cough happens whenever he tries to stain certain muscles in the body, like laughing, swallowing, sometimes walking... Lorazepam helps a lot. We've learned how to control it better now..

My dad is in the wheelchair now, needs help getting to the bathroom, doesn't eat by mouth anymore, still has some strength in both arms and legs but not enough to even shower by himself anymore. My mom dresses him, wheels him to the bathroom, showers him, I help with his feedings by tube.

I never realized that to get hospice you have to essentially sign off your life and promise not to see your specialty dr anymore? That was such an unpleasant surprise.... We are not ready to sign my dad off, he is considering getting a ventilator, so essentially we can never be on hospice...

Fortunately, we were lucky to get a nurse to come to our house from palliative care. She visits weekly and it is covered by insurance. She can write any prescription, any order or referral. i don't know what id do without her! she placed orders for the wheelchair, hospital bed and a hoyer lift. She takes my dad's blood when needed. Gave him pneumonia vaccine! She communicates with his primary dr and the Northwestern team.! She brought the social worker to communicate about my dad's final wishes. All of this without the need for us to go to the clinic!

My dad's peg tube operation thankfully went on OK. We had a scare for a bit, when they said they may not go through with it because of my dads stomach hernia, but then some other team of surgeons handled it!!!

more later... baby awake
 

worrieddaughter77

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My dad's insurance also rejected to cover radicava for him, since his respiratory numbers are below the recommendation. I don't know what to do about this... I'd really appreciate if some of you could advise me on this. My husband and i talked that we could probably afford to buy it without insurance, is it really worth it?

the insurance also will not cover a motorized wheelchair. now I'm looking into places where i could buy a used one. i want my dad to be able to be as independent as he can. It's sad, i still don't know how much it'll cost and where to look for it.

i hate insurance companies btw

I also took a family sick leave from my job, and it was the right decision. Right now between my dad and my 1 year old, my mom and i both have around the clock care duties. I'm scared of how much more there will be to do as my dad becomes even less mobile...

It's all sad but i feel numb. i just keep doing things around the clock... I don't want my dad to leave us but the routine makes me forget about this eventuality. As if it's not going to ever happen....
 

KarenNWendyn

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Dear Worried,

This is just my personal opinion, but given the rapid decline and poor respiratory numbers, I would not recommend Radicava, especially if you have to pay cash out of pocket for it. It would not reverse anything. I think his and your time and money is better spent on maximizing the quality of the time you have left together. I think the power wheel chair is more important so he can get out and about— that’s quality of life. Best of luck to you. It sounds like you’re doing an awesome job in this difficult situation.
 

lgelb

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Worried, I agree with Karen in re Radicava. But I am confused -- what kind of insurance does he have that won't cover a power chair? Is he not on Medicare at least?
 

affected

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I will pile on and say forget the radicava. Maybe however talk here about the PWC as maybe you are able to work on that one - lots of help here!
 

Narrowminded

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Worried, I too will chime in, as I’m not sure yet that Radicava is the answer as others have said, it won’t cure. However, insurance should cover the PWC. That needs to be worked on with them.

Hugs,

Sue
 
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