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...
" My pulmo Dr. is very aware of my situation. He said I am an unusual case. He thinks I will be in a nursing home within 6 months. A year ago I was put on o2. I told the Dr. I thought something else might be going on, but he did not agree. It feels to me, like I am near dying. I will be having palliative care in the next few weeks. It's not hospice care. It's a program that brings the Dr. to me, as well as xrays if needed, blood work, etc. All the Dr's will be working together for my benefit. Counselors, massage therapy, physical therapy, etc. to help make the best of my situation. I feel like I am in the late stages of this disease, and going downhill by the month. Any advice would be so very appreciated. Is anyone else as bad as I am. I'm not ready for this, and yet, I better get ready fast!
There are several of us here in the last stages, and this disease works so different on all of us. My last hospital stay, I was told I am living on borrowed time, and the next episode could kill me. My lungs are so bad.....
I think it is a good idea to get palliative care, and I have been considering that myself.
I do wish I could give you some advice to make you feel better, all I can say is never give up. Continue your exercising, taking the prescribed meds, proper diet ( I really mess that one up lol )
This disease can advance like a jet plane, then slow down like a turtle,, and as I said, it is different for all of us. I was stable for almost 2 years, no hospital visits, ect, then wham, out of the blue, it hit me and I had a 16 day stay in the hospital. So I am no longer stable. But I plan on doing what I can to slow it down again.
If you are a religious person, I suggest you pray and talk it over with God, because after all, He is the one who decides when we leave this earth. This is a scary disease, but prayer seems to give me some measure of comfort.
Think positive and work toward the palliative care team being able to help you.
Hugs and prayers for you
BJ
Its based on a true story about a 4 yr old boy and his family living in a western Nebraska town.
God speed...
I have no lung sounds in the bottom lobe of both lungs and the upper lobes aren't something to write home about.I have no advice about what you may do or I would be taking my own advice.:)) But I can tell you that I am coming to terms with the future. It is a very personal journey that each of us must make. It is not an easy journey but life is difficult at best.
What I want from my medical personnel is the help that will make me more comfortable as I move forward. There are drugs that can do that and I do want peace and comfort at the end.
I wish you just peace of mind and send love and understanding your way.
Anna
Echo's of what Anna said. This is a pretty tough row we get to hoe. I wish there were words that I could write that would ease your mind. As BJ wrote, prayer and meditation can help immensely when trying to achieve an amount of internal peace...
Hugs,
Dennis
As already said be at peace with yourself and God and keep on pushing yourself.
If you are looking for additional help, give the University of Michigan a call @ 888-284-LUNG, speak with a counselor and see if they have a 'trials' program that you may be willing to explore. You should be asking your survival team about "trials" also at UofM and don't let them brush off the request.
If you need more help e-mail me at editor@pronlinenews.com.
I'm a former Michigander from New Baltimore and still maintain a relationship with UofM and bunches of people there.
Don't hesitate to be proactive /hank/
And that would be awesome if you could get some help from the University, as Hank suggested, seeing as how your Dr. says you are an unusual case. Maybe you will spark some interest there. I will hope for that for you.
Are you only on the prednisone and the two meds listed on your profile?
I do not know you but please don't give up on hope! I will be saying prayers for you. XX
Thinking about you and happy to hear you have access to palliative care...just remember to never give up as miracles do happen.
Hugs Peter