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Readers Respond: What About the Term End Stage COPD Bothers You Most?

Responses: 37

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Updated May 01, 2014

From the article: End Stage COPD
"End stage COPD" is a term that leaves many people frightened that it might be time to "put their affairs in order." For some, this is a fair statement, but for those who take good care of themselves, nothing could be farther from the truth. What is it about the term "end stage" that bothers or offends you the most?

Doesn't Bother Me

The term end stage doesn't bother me because it gives me a time line to work with and a goal to beat.
—Guest Deborah Janes

What's In a Name?

It's of no matter what label they put on it, it is the end stage. Amen.
—Guest tony

The Term "End"

My mum just passed and her death certificate states "End Stage COPD" as the cause. We have known for many years she has COPD, but didn't really believe how horrible it would be to watch what happens, all those commercials on TV, now are such a reality, they actually are showing the truth, I didn't want to believe it was the end, I kept thinking I'd walk into her hospital room and see her up eating and smiling. She suffered at the end and I'm glad she is at peace now. Never, never smoke. It really will kill you...
—Guest Karen

End Stage COPD?

I was diagnosed with COPD when i was 46. I am now 74 and the disease is progressing. For me, I am at the very severe stage. I have had many exacerbations, lung surgery, surgery for the removal of a bladder cancer. I have found that most important treatment has been walking on the treadmill or around my house. If all I could do at one time was one or two minutes at a time I did that as many times as it would take me to do total 30 minutes. Gradually over time I walk 30 minutes without stopping. Sometimes it has taken me a year or longer to build up to that level. I do arm exercises with very light weights or simply range of motion for the same exercises no weights. Even without this disease, as we age, and we all age differently, we lose our physical capabilities regardless. I am a fighter. I refuse to give in to the debilitating effects of this disease. I have several absorbing hobbies. The most important medicine is attitude. That's everything.
—Guest sandflea681

Don't Let Anyone Tell You...

Don't let anyone tell you how long you have. My daddy's doctor told him he had no more than 5 years to live. That was 13 years ago! My daddy refused to listen. He lived totally on his own for the past 13 years and left his doctor scratching his head... The doctors are NOT God. Only God knows how many days you have left and what you can do with them!!!
—Guest diana

The Word "End"

The thing that bothers me the most is the word "end" without some comparison to other diseases that deprives a person of the quantity of oxygen he/she may need. I have what I believe to be moderate COPD. Without considering such things as pneumonia, is my survival slightly reduce or greatly reduced? Will I have to go through all the stages from mild to very severe? I do use oxygen 24/7 to hold my oxygen saturation level at close to 90 and my only other complaint is arthritis in my back and neck. I also have neuropathy in my feet. If I leave the house I use my cane. I am 78 years old and enjoy life as much as I can and do not wish to have major supportive measures taken if hospitalized. I was under hospice care for two years and came off a year ago.
—Guest Dick A. Wilcox

The End of My Life As I Knew It

I have had COPD for about five or six years. I was a very heavy smoker most of my younger life and only quit when told to by the Dr. A couple of years later I was told I had COPD while in the hospital with pneumonia. I hate it. I can do almost nothing I used to do. Had to sell my boat, sell most of my fishing gear. No more hunting, I cannot mow the lawn or help move furniture. It seems to me the thing I can do is sit in front of the TV with a hose stuck up my nose feeding me 2 1/2 liters of O2 a minute or 3 liters. I am comfortable until I get off the 02 then I suffer. End stage means for me the end of my life as I knew it.
—Guest John

It Bothers Me That It's My Mum

It's not me with COPD, it's my mum who I have moved in with me and look after. She was diagnosed end stage today. It bothers me to watch her suffer - she is more or less bed bound, has panic attacks all the time. If i go anywhere and is 3stone10lbs it's awful. She has given up, but never stopped smoking or exercised. Now she barely eats.
—Guest kelly

Connotates Death

Well, end stage certainly connotates death, which we Americans certainly try to sidestep talking about.
—Guest Patrick

Implies Death Is Near But Not Always

The term is very frightening implying death is near. I have always thought I would live a long and happy life.I took good care of myself with diet and exercise. However I was seduced by the cigarette company's at an early age with free cigarettes. I have struggled with this addiction all my life finally quitting in 2004 in 2010 i had an exacerbation leaving me extremely weak and on oxygen 24/7 in spite of my Pulmonary Doctors advice I started physical therapy and discontinued conventional medication . I started reading more and focusing on this disease from a diet,supplement and exercise checking with my GP for reassurance. The reason I call this a wake up call is that it is easy given the depressing nature to lay back. I was always able to exercise on a casual basis now it's a matter of life or death.
—Guest Richard J.

Stages are Frightening but There is Hope

I'm 64 and spunky, my mind tells me that I can do anything - my body just won't cooperate! LOL. I have COPD and use all of the meds and O2 and monitor my O2/heart rates. I got Pneumonia in 2009 and was hospitalized and have had it several times since. I refuse to just give up and wait to die!! We have plenty of $$ & I will go anywhere if they help me to live a longer life and breathe. We have 5 precious children and 5 treasures of Grandchildren that I adore, and my 2 Pugs!! I am not ready to leave them. I went to Temple Lung Center & all they wanted is for me to do a trial! Hey, I came for the help! I am not going to do any trials! It seems that all they do is give you meds , but don't try to save you. I will find the best COPD Dr. and Hospital and try to go there. I won't give up without a damn good fight!! I understand what all of you are going through, and it is so difficult. I wish they could find a cure. As long as you have a breath there's HOPE!
—Guest Love, Poppyxoxo

End Stage: A Depressing Term

The term "end stage" IS kind of depressing. I prefer STAGE IV but for me it really IS the end. My FEV1 is only 28 and I get so short of breath with the slightest thing I do. And, I'm going through all this alone. I have no one to be here for me. My doctors told me my lungs can't function much longer. And try to imagine living with the terror that if you get an infection in your lungs, even a cold, you could go into respiratory failure and die. I've been in resp failure 3 times and almost didn't make it the last time, they had to intubate me, then my CHF acted up and for 5 days and nights I had to sit up and lean forward because I couldn't breathe lying down. They just let me suffer because my heart didn't seem to cross their minds. So,for me it really IS the end, even though I may not like the term. One consolation -- my passing isn't going to hurt anyone.
—Guest Debbie Williams

What End Stage Means to Me

I'm a 41 y.o male with an FEV1 of 28 and I'm on 02 at 2ml 24/7. I feel the term is pretty accurate in my case as life as I once knew it is ended its stage. I cannot function as someone my age should. I've had to give up all that was dear to me -- my lawn, my long walks with my pet, even walking thru Walmart to do my grocery shopping. Yes to me "END STAGE" does mean my end. My days are filled with breathlessness even with my 02. I'm racked with chest wall pain and my anxiety levels are less than normal. I know I'll never see my granddaughter grow up and it sucks. I pray that my response doesn't mean the same for all of you...but its my life's termination. May god bless you all. Yours in breathlessness. Randall Smith
—Guest Randall_has_severe_copd

Not Knowing if This is My Last

It bothers me most that every time I have an exacerbation episode I don't know if it is the last. I know that in my case if I'm administered Solumedrol thru an IV, I'll probably make it thru again, but how long until the next episode. Seems like they are getting more and more frequent and I can't keep going in to the ER.
—Guest Jo Roche-Kirby

That Everyone Has Given Up On Me

That everyone has given up on me, except me. I am a fighter and will continue to fight. Every problem I have wrong with me the doctors blame it on my COPD. I have to keep pushing and pushing to get to the real issue that has nothing to do with COPD. It stresses me out and that isn't good for COPD, but I continue the fight anyway. I never take to heart what they say I just continue the battle.
—Guest deborah
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