COPD & Emphysema Support Group

COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...

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At a loss

DifferentLife
DifferentLife

Hi everyone,


I have known that my dad would eventually get worse but I have been in denial for a while. This disease has been such a tiller coaster ride over the past two years with him placed on a ventilator 4 out of 5 hospital stays year before last. He has good and bad days now.Today's doctor visit didn't bring all that great news. He has gone from being in the mid 30s of breathing levels to 23 now. 


He is in great spirits as is my mom. I'm an only child and this is very hard for me because even at 45 years old I am truly a daddy's girl. My children adore him and know that he's all but have no idea where we are in this stage. His doctor told him that he has no time table laid out for his life expectancy but it is very hard for me to deal with this. My son is his shadow and I just don't know how he will get past this. I just feel like I am at such a loss yet I don't want to act like my father is already gone. I am a Christian and I know to pray for strength but this just HURTS to the core of my being. My father is the BEST husband to my mom, father to me and grandfather to my children. How do you mourn someone who's still here but you know won't be to see his 13 year old grandson graduate high school? This just hurts. 


Hospice is coming to speak with us on Saturday. My dad wants me there so that I can see things "aren't as bad as I think" they are. The doctor didn't tell him it was time for hospice but thought they could come talk to us and share information. .....in my mind hospice is hospice. That is for letting a stranger vent.

jarca1
jarca1
I have a friend who is a retired hospice nurse. I love her stories of how many people outlive what dr's "think" once a person gets the extra help & care that they need.
Don't mourn your dad before he is gone, enjoy every minute you have for as long as you have. that is so sad if you lose a minute of time enjoying each other while you can; there is time to mourn after he is gone.
Gosh, that would make me so sad if my kids quit enjoying our time together & bury me before i'm dead.

what do you mean when you say he has gone from the mid 30's to breathing levels of 23. are you talking about a lung function test #?
I have 2 lung diseases & I was given 3 to 5 years to live back in 2012. I'm still here. Still live alone. Still ride my ATV & take care of my 15 acres. I do need 5 to 6 LPM of oxygen when I am doing very active things, but with my oxygen i think i do pretty darn good.
DifferentLife
DifferentLife
Oh wow jarca 1! Thank you for those uplifting words! I will certainly take heed to what you've said. I was just feeling like I lost him already but you are so right....he IS still here! Yes the lung function test was what I was referring to. The doctor hasn't given him a "lifespan" or as his doctor states "I have no expiration date for you." Thank you for clarifying the hospice services. My 91 year old grandmother was referred to hospice 3 years ago but they let her off of the caseload because she was doing well. I know what this disease consists of and though he may not get better.....it is my prayer that he doesn't get worse anytime soon. Thanks again and I will enjoy him and his life right now.....not later. God bless you!!!
silverhawk
silverhawk
i married my wife at 19 she was 16 she has copd i am now 63 she was diagnosed at 56 now 61 in hospital 5/6 times a year this is the worst disease that anyone can get i have held it together all theis years as who do you confide in cant tell the kids , her lung copasity is 20 % i dont know i will make it with out her thanks for listening alan
RjM
RjM
It's scary as hell. All the numbers and stuff. Do a bit of research. Docs have no idea as to longevity. I was dead serious in a previous post that you can live a long life. Limited for sure. Damned thing about this problem is everyone is affected differently. My test we're bottomed out. But my o2 is still at 90 or better. I got the mask and all that good stuff. But still here. Been a rough summer, but still here. It will kill us all eventually. A fact of life. Best I can say is make the most of the time available.
Much love, Bob