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, long time lurker, finally joined. I'm 50 years old and have had COPD about 6 years. Had my first PFT last August for clearance for surgery. My FEV1 was 0.96 pre and 1.12 post bronchodilator, putting me at stage III. My DLCO was also only 10.5.
I've quit smoking on and off over the years but have never been able to stick with it, partly due to the fact I could never get my hubby to quit too. Finally talked him into quitting in September and we quit for about a week. Then my son committed suicide and we started smoking again. At this point I don't ever see myself quitting, even though I know I need to desperately.
I was already suffering from depression and since September it has gotten much worse. Having a hard time dealing with it all. The more upset I get, the harder it is to breathe. I sometimes wonder if it is even worth it anymore.
I saw my pulmonologist on Monday with an exacerbation and am now on prednisone again, the third time in five months. I was due to start back to work today after being off since my son died. I work at a hospital and the employee parking lot is large, plus there is a long set of stairs leading up to the employee entrance. I find it extremely difficult to use the stairs, especially in the cold weather (live in Michigan). I asked my pulmo if I could get a disability plaque so I could park elsewhere and not have to take the stairs. He said I didn't need it, I was only 50 and nowhere near qualifying for one. I asked him if he could just write a note for HR so I could at least avoid the stairs for the next couple of weeks while I get over this latest exacerbation and he again said I didn't need it.
I'm wondering if I should try and find a new pulmo or if my COPD really isn't that bad. Having a hard time trusting my judgement anymore. I get very SOB with any exertion at all but am not on oxygen. How do you know when it is time to go on oxygen? My pulse oximetry is usually about 96% when taken in the doctor's office, but all I am doing is sitting there.
So very sorry for the long rambling post. It is 2:30 in the morning and I guess I got carried away. I don't sleep well most nights and it is even worse on the prednisone.
I've quit smoking on and off over the years but have never been able to stick with it, partly due to the fact I could never get my hubby to quit too. Finally talked him into quitting in September and we quit for about a week. Then my son committed suicide and we started smoking again. At this point I don't ever see myself quitting, even though I know I need to desperately.
I was already suffering from depression and since September it has gotten much worse. Having a hard time dealing with it all. The more upset I get, the harder it is to breathe. I sometimes wonder if it is even worth it anymore.
I saw my pulmonologist on Monday with an exacerbation and am now on prednisone again, the third time in five months. I was due to start back to work today after being off since my son died. I work at a hospital and the employee parking lot is large, plus there is a long set of stairs leading up to the employee entrance. I find it extremely difficult to use the stairs, especially in the cold weather (live in Michigan). I asked my pulmo if I could get a disability plaque so I could park elsewhere and not have to take the stairs. He said I didn't need it, I was only 50 and nowhere near qualifying for one. I asked him if he could just write a note for HR so I could at least avoid the stairs for the next couple of weeks while I get over this latest exacerbation and he again said I didn't need it.
I'm wondering if I should try and find a new pulmo or if my COPD really isn't that bad. Having a hard time trusting my judgement anymore. I get very SOB with any exertion at all but am not on oxygen. How do you know when it is time to go on oxygen? My pulse oximetry is usually about 96% when taken in the doctor's office, but all I am doing is sitting there.
So very sorry for the long rambling post. It is 2:30 in the morning and I guess I got carried away. I don't sleep well most nights and it is even worse on the prednisone.
So sorry to hear about your son..that must have been devastating to cope with...
Sounds like you are getting seriously SOB which is very possible even if you have a high oxygen reading. Same as mine at 98%-96% and a Fev.1 at 22% but not on oxygen. Im not sure what the exact reading is supposed to be, to be given O2..... around 88% ???
If you are not happy by all means see another pulmo...not sure why they won't give you a disability parking ticket cos its pretty easy to get in OZ as long as you can get a doc to ok it.....
Anyway take care....Peter
You probably know this already but you have to stop smoking and until you do-at least cut down on the number of cigarettes. This would help improve your SOB right away.
I think you would benefit from pulmonary rehab. It seems you avoid exercise which makes the SOB worse. There are breathing exercises you can do to help you get up the stairs.-You have to keep moving because exercise are very important to help you with your everyday activities.
I would talk with your doctor about the depression and anxiety. This may also influence how bad your SOB is.
Prednisone makes it difficult to sleep-I experienced the same thing when I was on it.
Your pulmonologist doesn't sound very helpful. Would your primary care physician help you out with the parking and stairs?
Hugs.
You need a new doctor.
Welcome.
I do not think you have to be a certain age to qualify for a disability ard or parking license plate. That is just dumb. Little kids are disabled, and tho they can not drive, my point is, there is no age involved.
All you ned is a note from a doctor saying your condition is such he feels you are disabled and need that card or license plate.
I hope your reg doctor cn do this, or kick that other doc to the curb and get a new pulmy.
Your SOB could be for a number of reasons, one is anxiety and even depression over your health and of course the loss of your precious son. Anxiety will make SOB worse. So get your regular doc to check this out and maybe an anxiety med would help.
Is your HR one that would let you slide if necessary, and go ahead and let you avoid the stairs? Is there an easier way to get to your work place, and if so, why is it mandatory to use the stairs?
Your numbers are good, but that really is not an indicator.
I hope you insist on this parking thing and things get better for you real soon
BJ
So sorry to hear of the death of your son. It must be hard to separate your grief from other issues going on for you and your husband. Perhaps a grief counselor is in order. It helps to prioritize things - sounds like anxiety, depression is at the top of your list to be addressed. I know several people have received excellent help from grief counselling.
Today you are in this world so "it is worth it" because you are worth it as living participant.
Do take care and come back soon and let us know your progress.
A lot of your SOB may be because your doctor is a
first class heartless SOB.
I don't think you qualify for a disability plague, not by Pa standards anyway. your numbers are so good and you are not disabled. If you look up the form ,you will see what I mean.
Doing stairs in the cold is a bit tricky, use pursed lip breathing and stop if you get extremely sob. But they are good exercise, and exercise helps with your breathing, in the long run.
Your oxygen seems good but all the sob, the stairs, and your oxygen will improve greatly if you quit smoking now. I quit and my breathing and everything got a bit better , but I waited too long to quit. My numbers are fev of 27 , so much worse than you. It is not easy to do but can be done.
I quit smoking 25 years ago still have developed 3rd stage. But the
main reason I have trouble walking, getting up and especially climbing stairs is that I am way too heavy. Just saying. Another thing to feel guilty about. : (
Yep, I'm overweight too, work 2nd shift, and sit in front of the computer all day. I am not trying to avoid exercise, in fact, my department is much, much closer to the employee entrance than the handicap parking. I am trying to avoid the stairs and especially the cold. Have to stop at the top to catch my breath before I can continue inside. Not bad when it is nice out but difficult when below zero. It is also very embarrassing to be there huffing and puffing when people are passing.
Both my parents smoked. My mom died of COPD at age 62 so I suspect part of it is hereditary.
I'll try quitting again but will wait until after Christmas, it will be hard enough as it is.
Right now, you seem to be using smoking as a crutch, as we all have done, throwing this excuse out there and that excuse out there.
I wore the patch, then if something happened I would take off the patch, go buy my smokes, and consider I deserved it because I was angry or I was upset, or I was nervous, whatever.
The holidays and the loss of your son, would not be a good time to quit. Maybe set your self a goal date of maybe March 1st or something, then gradually work toward that date, cutting out a few cigs along the way.
You do not need our approval, or permission, to keep smoking or not, but you know we care, and most have seen, or are living with the results of continuing to smoke. I am one of those.
I will keep you and your husband in my prayers, and please stress to him that both have to quit, for this to work.
You have great fev numbers, but it won't last as long as you continue to destroy the lung tissue , and not exercise a bit.
I think you need a good heart to heart with your doctor, about smoking, about exercising, what you can tolerate, and get to this disease before it really starts progressing fast.
My fev is 29...
Hug to you and your husband, I am sure this Christmas will be hard for the two of you. Please feel free to get on the computer and talk with anyone on the board here, ask any questions, make any statements.We can keep you company when you get sad, or just want to chat.
I wish you peace and happiness, and acceptance . That would be to change the things you can, accept the things you can not change, and the wisdom to know the difference.
BJ
(((HUGS)))
Michelle