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...
Yesterday I finally got to see the transplant team in San Antonio. I easily qualified for a transplant with my health statistics. My lungs are plenty shot enough and all my other organs are in good shape. The deal breaker is that I need to have someone commit to be my one on one caregiver for up to one year after the transplant. I have no family except my estranged husband and he made it clear to the transplant team he couldn't commit to this. He needs to work...even though I offered to give him my SSI money every month he said he couldn't get by on that.
The team of doctors said the average healthy time after a transplant is 5-6 years although some have made it 15 yrs. and some only make it for1. He concluded that without the transplant I most likely will not see 5 years and that my lung function will continue to decline. I am heartbroken. . Right now I live alone and i realize i am without a single friend and tied to a machine to keep my tanks filled. I know this sounds depressing but I honestly wonder what is the point of working so hard to try to stay healthy. I only have 22 months before I would be too old to be considered for a transplant. I so wanted to get my severely disabled daughter out of the deplorable group home I unknowingly placed her in and have her with me for a couple more years. I raised her at home for 24 years and these people have almost killed her since she has been in their care. I report them over and over to DADS but they are always right on the edge of the law with their substandard care except a few instances like when a staff member stole her debit card or when a staff member was caught cussing at her or the time they dropped her from a sling lift. Once last year they even gave her either another resident's medication or too much of her own. Either way she had to be taken to ER but home said she just got sick and never admitted any wrongdoing. It was obvious she was coming down from something shaking and grinding her teeth. She has become very obese and completely bed and wheelchair bound in this group home's care. I sure wanted to resume care of her and try to restore her health. As she is now no other home will even consider taking her. Ive tried over and over for the past 3 years she has been in this home. Now I realize that soon I won't even be able to care for myself.
I did find out that my disease is not completely COPD. It is a mixture of COPD and my lifetime asthma. I've never heard of such a thing but these guys are about as specialist as it gets.
Sorry to piss and moan like this but this is a really big disappointment and I didn't know anyone else I could share this disappointment with who might understand.
Sandy. >^..^<
The team of doctors said the average healthy time after a transplant is 5-6 years although some have made it 15 yrs. and some only make it for1. He concluded that without the transplant I most likely will not see 5 years and that my lung function will continue to decline. I am heartbroken. . Right now I live alone and i realize i am without a single friend and tied to a machine to keep my tanks filled. I know this sounds depressing but I honestly wonder what is the point of working so hard to try to stay healthy. I only have 22 months before I would be too old to be considered for a transplant. I so wanted to get my severely disabled daughter out of the deplorable group home I unknowingly placed her in and have her with me for a couple more years. I raised her at home for 24 years and these people have almost killed her since she has been in their care. I report them over and over to DADS but they are always right on the edge of the law with their substandard care except a few instances like when a staff member stole her debit card or when a staff member was caught cussing at her or the time they dropped her from a sling lift. Once last year they even gave her either another resident's medication or too much of her own. Either way she had to be taken to ER but home said she just got sick and never admitted any wrongdoing. It was obvious she was coming down from something shaking and grinding her teeth. She has become very obese and completely bed and wheelchair bound in this group home's care. I sure wanted to resume care of her and try to restore her health. As she is now no other home will even consider taking her. Ive tried over and over for the past 3 years she has been in this home. Now I realize that soon I won't even be able to care for myself.
I did find out that my disease is not completely COPD. It is a mixture of COPD and my lifetime asthma. I've never heard of such a thing but these guys are about as specialist as it gets.
Sorry to piss and moan like this but this is a really big disappointment and I didn't know anyone else I could share this disappointment with who might understand.
Sandy. >^..^<
I was also diagnosed Chronic Asthmatic and treated as such till it was already too late...My Emphysema has an Asthma Component..This will be evident if your Pulmonary Doctors reads the results of your PFT test.... Pre and Post Testing.with the.. Use of ''Ventolin''. If there is a change then Asthma can be ruled into the diagnosis.
Maybe i will go today, in a week or a few years, there is nothing I can do but accept and carry on with my life..The Majority of us face the same destiny with or without Transplants or other Life Extenders...So I chose to look at the bright side that for now I am still alive.
The sadness of your daughter and what can be done is something I do not have too face...I pray you find the strength and help that is needed out there in your community.
Hugs Peter xxx
Can your husband do anything for your daughter?
I wonder if palliative care can help with that?
I know how it feel not to have help, Its not a good feeling.
I pray there is something to help.
DeeDee
I used to sit in church by myself and just cry and cry "Where are you and what do you want from me.? I was diagnosed with critical depression and no wonder I couldn't see out side my box. Have you shared with your MD what's happening and see if they know how they can help. Perhaps an anti- depressant would help you too. You sound like you have plenty of life stressors to make most anyone stressed out. First though you have got to take care of yourself first. You can't do anything to help your daughter right now. Maybe I should stop talking now . I hope I didn't add to your burden, I only wanted to help.
I know it's a disappointment to you. However, the only person I personally know that had a transplant didn't make it thru the surgery. That is why I never even tried to go that route.
I remember when BJ did the research into it & i thought to myself I don't have anyone that could commit to a year of caring for me....and I have wonderful kids, but a year of giving up their lives to care for me, well, I don't know if they would do it, but i couldn't ask it of them.
The thing is, now that you aren't in that musty ol post office and you are going to physical rehab, my prayers are that you will get stronger & in better health.
Don't give up dear, just getting in shape, perhaps finding new medication that helps your asthma component and using your 02 to keep your organs & muscles as strong as possible may give you better quality life & more time.
(yes, i'm an optimist :) )
It seems that many of us found DS because we were alone and needed the support from others.
I always am surprised how many of us live alone and in rural areas.
So i'm grateful for the internet and the friends I have found here.
BTW; remember how I told you after that last big illness i had when you had yours that I was coughing up a lot of mucus plugs?---well here it is a month later & i've flared up again.
Dr thinks maybe we didn't get all them bugs killed or that my immune system was so worn down that i couldn't fight off this illness getting me.
What i'm trying to say, is slow down, take it easy & don't let this stress you out too much as I wouldn't want you getting sick again. Stress, worry & depression really wear me down & then the weak link (my lungs) flare up on me.
Are you still going to the Pulmonary Rehab?
If not see if your dr will order more for you. It's a great place to not only build up your strength, but also to meet others that are living with this disease too.
I am SO sorry to hear about your daughter. I had tears rolling down my face as I read about her.I am so sorry that in this day and age there are still places that are in business like that.
My prayers are with you and with your daughter also.
(((HUGS))))
San Antonio is one of the best places in the country for a transplant. Hope you find or have found a resolution.