End-Stage Emphysema

D

dems4me

Guest
Does anyone have any experience in this? If so can you kindly pm me please? I have some questions and am not finding the answers on the internet well at all for some issues that have recently appeared concerning a family member - TIA :huggy:
 
D

dems4me

Guest
So far I'm just seeing what constitutes as end stage. Basically I'm trying to figure out the symptoms of "the end" if that makes sense. Not trying to sound blunt. My mother started shaking uncontrollably for the past few days and is having alot of confusion insisting on and "dipping bannana in salisbury steak gravy" for dinner. The shakes were really bad so much that my father had to lay on her body and legs to keep her from shaking and couldn't do much to help the shaking and he's a big guy.

He called hospice and nurse came over Friday around midnight and she put a pill under her tongue and has been working with her with the nebulizer in between her 24/7 oxygen. She did blood work and her blood work showed acidemia (too high acid and low ph and low oxygen - yet finger oxygen sensor reads oxy is okay) - this is today's finding. The nurse left and recommended my father put her in the hospice home, which he strongly/stubbonly doesn't want to do and according to him today says my mother is against as well as alot of folks in hospice never come back home.

My father called my grandfather who's wife called her doctor, her doctor said with emphasema and having acidemia it's from the organs shutting down, it's all internal at this point. Sorry, wasn't trying to throw any drama into the main boards but kind of need an answer and havn't come up with much luck other than acidemia could be caused from the lungs (as they are an organ) - I'm trying to prepare myself in case this is it, and her organs are really shutting down. My father does feed into drama and we've been through the "now's the time" drill over the phone often. Also, she mostly sleeps at this point and twice now was in a near comma like stage last week when sleeping. :frown:

Anyone familiar with emphasema and shaking and what it means?
 
oldman

oldman

Lobster Land
Dems, this isn't going to be of much help but for what it's worth. Had a close friend succumb to emphasema a few years ago, he had it bad, but to my knowledge didn't have acidemia - but I wasn't with him near the end. Currently myself and two other friends have emphasema in different stages. One has the air hose, inhaler and has been in the hospital a couple of times. The other just uses the inhaler and was told to not be out in the hot sun. I currently am not on anything and just put up with being short of breath when being active - thus I'm not very active. I also continue to smoke which is really frowned upon, but to me the pleasure I get outweighs the risk.
Sending a prayer to you and yours.
 
D

dems4me

Guest
oldman said:
Dems, this isn't going to be of much help but for what it's worth. Had a close friend succumb to emphasema a few years ago, he had it bad, but to my knowledge didn't have acidemia - but I wasn't with him near the end. Currently myself and two other friends have emphasema in different stages. One has the air hose, inhaler and has been in the hospital a couple of times. The other just uses the inhaler and was told to not be out in the hot sun. I currently am not on anything and just put up with being short of breath when being active - thus I'm not very active. I also continue to smoke which is really frowned upon, but to me the pleasure I get outweighs the risk.
Sending a prayer to you and yours.
Click to expand...

Wow... you really should quit, I know you've been told, but from what I've been researching - one case a mother and daughter both diagnosed with emphasema at various time in their lives and mother quit and lived 18 more years after diagnosis. Daughter didn't quit and lived 4 more years. Hey, just thought of something... check your pms :huggy: I couldn't find anything about shaking and acidemia, etc... concerning emphasemia, my mother also has autoimmune diseases so it might be related to that to, she's been on oxygen and almost entirely bedridden for about a year or two now. Just trying to sort through things. Thanks though!! :huggy:
 
Last edited by a moderator:
D

dems4me

Guest
Date Comment - End-Stage Emphysema 08-19-2007 05:04 PM Dont you smoke? U know how hard it is to quit right? To each its own I guess good luck


Thanks, I thought I'd address this here, instead of hiding in unsigned karma. :ohwell: Yes, I do smoke and got a px friday for Chantix :biggrin: FYI, this thread isn't about me or smoking.
 
kwillia

kwillia

n/a
Dems, my grandfather died of from "black lung" which he got from being a coal miner. It was a combination of lung cancer/Emphysema that did him in. Towards the last few weeks of his life, he did very odd things such as try to breath from his shoe and it was explained to us that the odd things he said and did were most likely the result of lower oxygen levels in the brain.

You can't come on here and get a "diagnosis" as to what stage your mother is in. You should be listening to Hospice and if you have questions your questions should be directed at them. IMO, I do believe you know this already and don't like not knowing how long your mother has. The thing is, no one, not even a doctor nor hospice can give you an answer as to how much time she has left. Just take it day by day and you are already preparing yourself for the end, even if you don't realize you are doing it. Hang in there.
 
D

dems4me

Guest
kwillia said:
Dems, my grandfather died of from "black lung" which he got from being a coal miner. It was a combination of lung cancer/Emphysema that did him in. Towards the last few weeks of his life, he did very odd things such as try to breath from his shoe and it was explained to us that the odd things he said and did were most likely the result of lower oxygen levels in the brain.

You can't come on here and get a "diagnosis" as to what stage your mother is in. You should be listening to Hospice and if you have questions your questions should be directed at them. IMO, I do believe you know this already and don't like not knowing how long your mother has. The thing is, no one, not even a doctor nor hospice can give you an answer as to how much time she has left. Just take it day by day and you are already preparing yourself for the end, even if you don't realize you are doing it. Hang in there.
Click to expand...

Thanks :huggy:
 
M

missperky

Guest
dems4me said:
So far I'm just seeing what constitutes as end stage. Basically I'm trying to figure out the symptoms of "the end" if that makes sense. Not trying to sound blunt. My mother started shaking uncontrollably for the past few days and is having alot of confusion insisting on and "dipping bannana in salisbury steak gravy" for dinner. The shakes were really bad so much that my father had to lay on her body and legs to keep her from shaking and couldn't do much to help the shaking and he's a big guy.

He called hospice and nurse came over Friday around midnight and she put a pill under her tongue and has been working with her with the nebulizer in between her 24/7 oxygen. She did blood work and her blood work showed acidemia (too high acid and low ph and low oxygen - yet finger oxygen sensor reads oxy is okay) - this is today's finding. The nurse left and recommended my father put her in the hospice home, which he strongly/stubbonly doesn't want to do and according to him today says my mother is against as well as alot of folks in hospice never come back home.

My father called my grandfather who's wife called her doctor, her doctor said with emphasema and having acidemia it's from the organs shutting down, it's all internal at this point. Sorry, wasn't trying to throw any drama into the main boards but kind of need an answer and havn't come up with much luck other than acidemia could be caused from the lungs (as they are an organ) - I'm trying to prepare myself in case this is it, and her organs are really shutting down. My father does feed into drama and we've been through the "now's the time" drill over the phone often. Also, she mostly sleeps at this point and twice now was in a near comma like stage last week when sleeping. :frown:

Anyone familiar with emphasema and shaking and what it means?
Click to expand...

I'm sorry to hear about this Dems, if you need anything please let me know. I'll keep your mom and your family in my prayers. :huggy:
 
M

missperky

Guest
Dems, have you read up on "End stages of life" instead of end stage emphysema?
 
D

dems4me

Guest
missperky said:
Dems, have you read up on "End stages of life" instead of end stage emphysema?
Click to expand...

No, didn't think of that... but through some nice people that pm'd me, apparently there's a machine that physically takes over the lungs function of breating out that pumps out the Co2, I've been readng about that :huggy:
 
M

missperky

Guest
dems4me said:
No, didn't think of that... but through some nice people that pm'd me, apparently there's a machine that physically takes over the lungs function of breating out that pumps out the Co2, I've been readng about that :huggy:
Click to expand...
Bipap?
 
Pasofever

Pasofever

Does my butt look big?
Dems my mom has COPD and emphasema she has had for years...Never any shaking..could it be a reaction to a medication? I think one day they just can't get a breath and it will be their last.. :huggy: to you..please do try to quit..mom smoked since she was 12...8 yrs ago I had her quit..she was on oxygen when I got her in FLA in 1996..I gave her cigs until she could not remember what she smoked and we faught if she had 10 or 3 packs a day..she was so confused she almost burnt my house down..I took them..the point is she is now off oxygen and Dr said her lungs have healed some..she has been off oxygen for years and no inhailer for 2 yrs..she does take a pill one time a day that helps with breathing..good luck
 
D

dems4me

Guest
Pasofever said:
Dems my mom has COPD and emphasema she has had for years...Never any shaking..could it be a reaction to a medication? I think one day they just can't get a breath and it will be their last.. :huggy: to you..please do try to quit..mom smoked since she was 12...8 yrs ago I had her quit..she was on oxygen when I got her in FLA in 1996..I gave her cigs until she could not remember what she smoked and we faught if she had 10 or 3 packs a day..she was so confused she almost burnt my house down..I took them..the point is she is now off oxygen and Dr said her lungs have healed some..she has been off oxygen for years and no inhailer for 2 yrs..she does take a pill one time a day that helps with breathing..good luck
Click to expand...


No new meds, I was telling my Dad that if her muscle's are all doing that out of control HUGE tremors than, her heart is a muscle too and he needs to watch for heart symptoms. Hopice nurse comes back tomorrow.
 
D

dems4me

Guest
missperky said:
Dad was on that at one time for the same reason. :huggy:
Click to expand...

Thanks, just got off the phone with my Dad informing him of all the research I've done about acidemia and ph and acid levels and how it relates to her lungs, etc... and he said about his newest nurse (not hospice) told her its okay NOT to use Advair or Nebulizer :banghead: :cussing: He and other's have mentioned Bipap thing but my mother is very against it even if it prolongs her life. She apparently doesn't want to prolong her illness and feels she has "nothing to live for". I spoke to my mother tonight and all she talked about was she's in really bad shape and then started talking deliriuos (sp?) and my father grabbed the phone per usual and thats when we talked about acidemia, etc... She has hospice visit 3 days a week, but my father needs more than 3 days because when he doesn't work and get jobs going he doesn't get the money coming in to help pay for this (he's self employed contractor) so he has another company come in that apparently are less experienced in this - and it was that effing ditz that told her to stop her nebulizer and Advair stuff. :cussing: So, I'm hoping we can bring her back out of this damage of CO2 overdose :cussing:
 
M

missperky

Guest
dems4me said:
Thanks, just got off the phone with my Dad informing him of all the research I've done about acidemia and ph and acid levels and how it relates to her lungs, etc... and he said about his newest nurse (not hospice) told her its okay NOT to use Advair or Nebulizer :banghead: :cussing: He and other's have mentioned Bipap thing but my mother is very against it even if it prolongs her life. She apparently doesn't want to prolong her illness and feels she has "nothing to live for". I spoke to my mother tonight and all she talked about was she's in really bad shape and then started talking deliriuos (sp?) and my father grabbed the phone per usual and thats when we talked about acidemia, etc... She has hospice visit 3 days a week, but my father needs more than 3 days because when he doesn't work and get jobs going he doesn't get the money coming in to help pay for this (he's self employed contractor) so he has another company come in that apparently are less experienced in this - and it was that effing ditz that told her to stop her nebulizer and Advair stuff. :cussing: So, I'm hoping we can bring her back out of this damage of CO2 overdose :cussing:
Click to expand...

I'm so sorry Dems, I know it is hard....Why can't Hospice come daily?
 
D

dems4me

Guest
missperky said:
I'm so sorry Dems, I know it is hard....Why can't Hospice come daily?
Click to expand...


Its okay :huggy: Hospice deemed this awhile ago as something that only merits 3 visits M-F awhile ago but would be available in emergencies... my father meanwhile can't stay home with her 24/7 so he hired another company to fill in the blanks. :shrug: It'll be okay, I kind of got a good/peaceful feeling after tonight's talk. It'll be okay, I think it was just the stoppage of nebulizer and her breathing med:smile: :huggy:
 
You must log in or register to reply here.
Top