End Stage Emphysema

[kimgreene]

My mom has been diagnosed with end stage emphysema.  Big shock to all of us who knew she had lung disease but didn't know it was this serious.  She is now on oxygen 24/7, set at 2 - 6 depending on acitlvity.  Her doctor said she has 3-6 mos to live.  She is only 69 years old and was very active but unfortunately smoked most of her life.  Now, she can't go anywhere without oxygen and even struggles to walk.  Has anyone been through this, and is it really true that her live expenctancy could be so short.  It's so difficult to see her struggle just to take a breath.

[Sunny602]

Everyone is different as far as "how long" goes...I have seen many ranges as far as expectancy goes (as a nurse and personally) Your mom does sound quite sick though (just an opinion though). My concern for your mom is if she is comfortable...is her doctor keeping on top of her needs, such as extra meds for breathing problems or ordering help for her if she needs it at home, perhaps a hospital bed to keep her head elevated and help her breathe etc..... Has there been talk of hospice? (I ask because the doc has given such a short expectancy for your mom)
I can't imagine how overwhelmed you must feel, even helpless to see your mom struggle. I wish I could be of more help....keeping all of you in my thoughts, Sunny

[kimgreene]

My mom's disease is progressing quickly.  I thought it was end stage emphysema but it's end stage COPD with chronic bronchitis.  She might only have a few week to live.  It's so quick.  When I read about the illness I can tell she's been sick for a long time but my mom was so strong and stubborn she wouldn't let anyone know that.  She does have Hospice so they are making sure she's comfortable.  Swallowing is hard at this stage so all meds are liquid.  She can't get out of bed without being out of breath and the nurse says her lungs are filling with fluid.  Once she signed on with Hospice she agreed not to go to the hospital anymore.......this is hard.  I feel like we are watching her die.  I know Hospice is really wonderful but this is so difficult.  I don't like seeing her struggle.   Thank you Sunny for all your support.  

[Sunny602]

It sounds like your mom is in great hands...I can't imagine how you must feel and how difficult this is. My mom felt very helpless when my grandmother was in her final days of her life...she wanted to take away her pain and struggles but couldn't. I can't praise Hospice enough for what they did for the family as a whole, easing the pain of my grandmother as well as my mom's.
Sending cyber hugs as well as prayers for all of you, Sunny

[MrsPina]

I can understand how you feel. We were told in July 08 that my husband had COPD and he was already at the end of moderate to severe stage. As of yesterday he is now in the end stage. He can't get out of the bed due to being very fatigued. Just to get of the bed he can't catch his breath. He also suffers from non-epiliptic seizures. I don't know what to do, to make comfortable. He's in pain all day. I look for information on the internet. Either the information is out dated or not enough information. You are not alone. I lost my job a month ago. He is unable to work, and SSI is giving him the ru around. The bills need to be paid. I'm hopeful i will find a job, before we are evicted..Keep your head up and leave it in God's hand...

[ever_hopeful_in_NH]

you sound so calm for someone dealing with so many problems.  I admire you and pray for you and your husband.  

[lynnkay]

My heart breaks for you and the others that have posted. I do understand the struggles you all are facing. I will say Hospice is a wonderful organization. My mother passed away in Aug. 2007 with idiopathic pulmonary fibrosis. Hospice was so very good to my momma. Momma thought the world of the ladies from Hospice, that would come to her home. They made sure Momma had everything she needed and they made her comfortable as well. And they had caring hearts as well, which is so very important. My Mother did receive a lung transplant, but the transplant unfortunately failed. She passed away 4 mths. after the lung transplant. My Mother was 69 when she passed away. I will always be eternally grateful from the deepest part of my heart, for the wonderful person, that did donate this lung to my Mother. That person gave the ultimate gift. IPF is a terrible terminal lung disease. My mother ended up being bed ridden for several years. Just to walk to the bathroom, was such a heartbreaking thing to watch. It tore me up, as I wanted to take her suffering away. And there was not one thing I could do except pray. Several months after my Momma passed away, I went to the doctor for something minor. I did tell the doctor I was having breathing problems, coughing, etc. I thought maybe asthma at the very worse. Tests were ran on me. The diagnosis was moderate stage COPD. I then had a second opinion with a pulmonary doctor. The diagnosis did not change. It was COPD once again. I was in total shock, that I too had a lung disease. I had just lost my Momma several months before to lung disease. But, that is not the end of the story. Six months or so before Momma passed away, my only sibling a brother was diagnosed with COPD as well. It shocked me to learn my brother had COPD and greatly concerned me. But, I never imagined I had the lung disease, too. Me and my brother were smokers of years. My Mother never smoked in her life. I cannot and will not predict the end of someone's life. That depends on the person I believe. My mother's brother had end stage COPD with CHF. The doctors gave him 18 mths. to 3 yrs. to live. Mother's brother ended up living over 8 yrs. before his death. As you may notice, lung disease runs heavily in our family. Am I scared to have COPD? I will admit that I am. I am having a number of problems, due to having this lung disease. I though am still trying and attempting to function. But, I do wonder what lies ahead. But, not only for myself but for my family as well. Your alls' stories deeply touched my heart.

[jascharb]

There is no real time frame on dying with COPD that would be accurate.
Since 1995 I was diagnosed with Asthma/Copd/Emphyzema my lung function then was 47% so needless to say I had it for a while.  I had already quit smoking in 97 thank God or who knows how far my function would have been.  A year later I was put on 2 liters of oxygen, breathing treatments for a breathing attack, emergency inhalers, threw the years ihalers of different strength were swapped out. in 2002 I landed up in ICU on a breathing machine for 1 week scared (hell yes) I got a new Doctor closer to home in 2004
which is the Doctor I am with now. This Doctor has done wonders with me finally has me on the best inhalers for me and has really helped my primary doctor with my other medicial problems. when I went to him my lung function was 22% and he inmproved it back in 2008 to 27-30%. Since then I have been diagnosed with Alpha1 a genetic lung disease which if been tested sooner could have slowed down my lung disease years ago. but we are working on that to see if I can still get a few extra yes . (You may want to talk to your Doctor about being tested.  alpha1.org you can read up on it.)  Since then I was diagnosed with lung cancer just finished radiation a week ago now waitting to do another CT Scan in 3 weeks to make sure they were able to get it or not..  Sorry so long but wanted to let you know I am still here and kicking and was moved from 2 liter to 4 liters in 2008 to 6 liters 3 months ago and know my end is near but still trying so I think it depends on you and your doctors. Oh yea I only take steriods when I have an infection I refuse to stay on them until the end. 63 years old ad survived being  diagnoised for 14 years