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...
Hi everyone!
My dad has 37% breathing capacity and I am trying to stay positive but it's really so hard. Within the past 2 years I've seen a very vital and active man go to barely being able to walk a span of 5-10 minutes without giving out of breath. He is in Stage 4 COPD and my mother and I are doing our best to keep his spirits up. I've read so much about this disease and was wondering if ANYONE has been diagnosed with it and been able to live a long time? Realistically I know that he may not make another 10 or 15 years but he's only 72 years old and he still has a desire to drive, go out, pick the kids up from school for me, but he does get tired if he does "too" much. My dad was a heavy smoker for years and worked around a chemical plant. This is just all so frightening and I dread the thought of this disease winning over him. My dad is a fighter because last year he was placed on a ventilator 3 times and has not been back since January 2015! I just need some positive words and vibes right now. I'm not in denial, but my faith keeps me believing for the best.....which is what my DAD is! He is the best to my mom, me and my children. He's a father figure to them since I'm divorced. I haven't told them of his condition but he is their world. I am trying to cope and be positive at the same time. Thanks for any positive input.
My dad has 37% breathing capacity and I am trying to stay positive but it's really so hard. Within the past 2 years I've seen a very vital and active man go to barely being able to walk a span of 5-10 minutes without giving out of breath. He is in Stage 4 COPD and my mother and I are doing our best to keep his spirits up. I've read so much about this disease and was wondering if ANYONE has been diagnosed with it and been able to live a long time? Realistically I know that he may not make another 10 or 15 years but he's only 72 years old and he still has a desire to drive, go out, pick the kids up from school for me, but he does get tired if he does "too" much. My dad was a heavy smoker for years and worked around a chemical plant. This is just all so frightening and I dread the thought of this disease winning over him. My dad is a fighter because last year he was placed on a ventilator 3 times and has not been back since January 2015! I just need some positive words and vibes right now. I'm not in denial, but my faith keeps me believing for the best.....which is what my DAD is! He is the best to my mom, me and my children. He's a father figure to them since I'm divorced. I haven't told them of his condition but he is their world. I am trying to cope and be positive at the same time. Thanks for any positive input.
This year was to be my LAST X'MAS but i feel im going no where soon as predictions are baseless....
Yesterday i had my yearly FULL CHAMBER LFT......My oxygen sats are high at above 97% so i do not need oxygen.
My Stage4 is supposed to be Very Severe at 22% lung capacity....Im on only 1 inhaler (ULTIBRO) n 5mg Prednisalone a day, plus 5-10 mg Zanax/day or as a PRN for Anxiety....plus Vit.D 2000 IU for bone strength......Turmeric suppliment for inflamation. My biggest issue is Chronic Pain from Hyperinflated Lungs, for which i take Tramadol Gummy Bears...and my Ventolin rescue inhaler but i use PLB >>>>Purse Lip Breathing which gets me out of most SOB attacks n i do it naturally now....
I also was intubated for just over 2 weeks for Respiratory Failure n was at the point of getting tubes removed n a breathing hole drilled as a last resort so i could say my goodbyes BUT it was'nt my time and my lungs perked up suddenly and since then i am following my Care Plan, Exercise n TRY not to stress....and PLEASE go n get him to go to Pulmonary Rehab Classes.....He will grow in confidence.
Check under Dad's foot...Is there a Used By Date???? Keep his spirits up cos there is no such thing as knowing how long.....I can still get out n do things which i feel comfortable doing.....I am slow n pace myself and YES..My old freedom has gone......But i look back n i feel blessed i lived a fun life, all in all...
Talk later....Hugs Peter
I was Dx'x at stage 4 back in 2010. This was upped to severe stg 4 about a year ago. I've been on O2 24/7 for years now. After I was first Dx'd I was Rx'd the "bormal" breathing meds for my illness. There was one huge problem for me ..... I kept ending up being hospitalized at least once a month for weeks at a time. About 1-1/2 years ago I stopped all meds, but continued with the O2 24/7. A strange thing occurred ..... I haven't had one exasperation or hospitalization since! That's just my "story" for now. I can't predict how long this will last, but I hope for a long time to come! With proper exercises your father should be able to enjoy his grandkids for many years to come!
Once again, welcome to our family!
BTW: I was a very heavy smoker for years myself, plus, my entire working life was in chemical factories as a welder!
A fev1 of 37% is usually considered "stage 3" and under 30% 'stage 4"---Of course when you can't breath numbers mean nothing!
Many people live a lot of years with COPD if they take care of themselves. I read one study that said most people with copd die of other things, not the COPD.
Qwapo's suggestion of going to Pulmonary Rehab is an excellent one if you have one available in your area. A good Pulmonary Rehab program covers much more than exercising.
Staying active & excersise to keep our muscles from atrophying is important.(don't forget the lung is a muscle) As the saying goes if you don't use it you lose it. Of course when it is hard to breath it is easy to not want to excersise, but that is when I know i need it the most.
Also eating healthy. High protein, low carb is usually what is recommended for COPD (protein for our muscles)
Staying away from people that are sick is a biggy for me. I carry hand sanatizer & wipes whenever I have to go out.
My family understands & stays away if they are sick so they don't expose me.
I also get a flu vaccine every year & pneumonia vaccines as recommended.
It seems that when I get sick it takes me down a notch that I don't get back. So preventing illness is very important for me.
Of course your dad should be advised by his Dr before starting any diet or excersise plan.
I recommend an oximeter. You can find them very reasonably price at most pharmacies, department stores or online. I get a kick when I go to the dr & they always check my 02 when I'm sitting doing nothing.
With many lung diseases, including COPD, our Sp02 stays in the "good" range of over 90%. It is when I get up and move that mine drops like a rock! Just walking to the other room I can drop into mid 80's and lower. So I always suggest that a person buy an oximeter & monitor themselves at home. (just like if you have high BP it is good to monitor yourself at home, not just at the dr office)
is your dad on supplemental 02?
I get tired easy, but if I'm low 02 I get exhausted fast! Low 02 also makes my legs feel weak, I get confused easily, and I feel air starved (shortness of breath "SOB" is not always a sign of low 02, but low 02 can cause me to feel SOB)
Being diagnosed with this disease is scary. I'm sorry you and your father are having to deal with it.
May I suggest you show your father this website and encourage him to join us. He is probably scared also & won't want to worry you. Here he will have others that are going thru it to get support from.
I don't want to "worry" my kids & friends with my disease. Here I can get answers to my questions. Its a place that I can feel free to talk with others and not "worry them". It is a place that I have the support I need as I walk this path.
Of course you are welcome here also, but may i suggest that there are several support groups for the caregivers of loved ones with copd. Having been a caregiver a couple of times in my life (for other illnesses) there may come the time when you need the support from others going thru the same thing and a caregivers support group may give you the support you need. (I wish i knew about support groups when i was a caretaker!)
Sorry for such a long post, but when I was 1st diagnosed I wish someone had told me these things :)
welcome to the board & feel free to ask anything you want. (((HUGS)))
Sounds to me like your father already has the best things going for him .....your mother, you, and those young grandchildren. How wonderful and caring of you to have found this DS group so that you can learn and maybe understand some of the changes that are happening to your father and how it will affect your family.
Any exercise that your father participates in will be helpful.... yes,picking up the kids from school ..pitching in with cooking...whatever activity interests him....The important thing is to Keep Him Interested as long as possible.
With his health issues he will also require some extra training in how to continue "these interests" that's where a formal exercise program comes in. With COPD/Emphysema the program is referred to as Pulmonary Rehab. Please check w/your father's doctor for information regarding the program in your area.
I am a few yrs older than your father, and can tell you that Medicare pays for up to 72 sessions. There is a small copay amount from the patient's end. If there isn't any Pulmo Rehab Program available in your area, you can check on exercise programs at a local YMCA because Medicare will cover "Silver Sneakers" Program at many Exercise Centers.
Once again, I will stress the importance of normal daily activities and I think just being around those youngsters is a special kind of medicine
Welcome and good luck to your family.f
Your dad will need to know his problems and need to understand that the things he use to do alone and with out SOB, are now going to take longer, and that is ok.
He needs to get use to a "new normal" and not consider himself going out of this world yet!! He will go when God calls him, not a second before.
One lady on another copd support group I am on, has been in stage 4, end stage, very severe, what ever you want to call it, for 17 years and she knows she has to stay away from sick people, crowds, smoke, anything that can harm the lungs if inhaled/
I am stage 4, also, been here 6 years and still going.
He has to change some things, and so does his family. Exercise, to what he can tolerate, healthy heart diet, and a positive attitude will go real far in slowing this down.
We can not cure this, but with proper care, we can slow it down slower than a crawl !!
Wishing your dad and the entire family the best as you go down this road. This support group will walk with you and help you all the way.
BJ
Our bodies are so darn complex that a "miracle" for one doesn't mean a "miracle" for another. BUT, there're plenty of discussions so there's lots to evaluate and try. (I just read a post from gwapo who mentioned he doesn't have side effects from meds, but he has a poor appetite. Same for me. What's up with that!) Anyway, keep with us - someone here is just like you...
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sorry we have to meet under these circumstances, but so happy to have you :)
And also other things i directly blame on this disease that others who have, do not appear as suffering from.......Like daily chronic pain that so far No Med can help so im forced to experiment with anything that gives me hope.......Fighting depressive moods daily that is mentally exhaustive while trying to help others while struggling to help myself at times....
I think once I sit back and surrender then, then there is no point in taking part in any support groups and just do what the med. people tell me to do...robotic effect.......my opinion only.....
My dad has had this disease for around 7-10 years or so. So yes I have seen him live through a lot and he is still here and strong. My dad has also done too much and he gets tired. It is important that he not feel like he has to do too much though, so we don't push him to do things that he is too tired to do. We know he wants to so we don't push when he can't. It's hard and I wish he could do everything he wants to as well. But also I know we are very lucky and that he is very strong. And it sounds like your dad is strong as well!
I agree with some above posts, I stay away when I am sick or feel like I'm coming down with something and we all get our flu shots every year. I wear a mask if I think someone at work is sick also just in case. This helps with the anxiety of "what if you get sick with this disease"? So taking control to minimize these things helps with his and our anxiety.
If you have any questions or just want to talk about it, you can message me on here. I know sometimes when you are worried sick it helps to just talk to someone in a similar boat.
HUGS!!!