41 replies to this topic

[Bobby]

Thanks Tim;
I will try to answer some of your questions, so you will know where I am at.
My 02 setting prescribed by Dr is at 2. I do turn it up sometimes to 3 but it doesn't seem to make any difference.
My p.rehab tested me and told me I should talk to my Dr about oxygen as sat levels were dropping to 80%. My Dr had a nurse test me after my insistance, and we did a 4 minute walk & I dropped to 82%.
At p. rehab after I was on oxygen I would walk treadmill and would still drop below 88% , and they would tell me to step off & rest a moment till I was above 90%.

I am on Advair 500/50, Spireva, Abuterol both hand held & nebulizer 4 times a day. Also on prednisone 10mg daily.

Yes, I see pulmonologist regular. ( my 5th)

I walk at mall 5 days a week,(M-F) plus I have machine where I do pull downs, butterflly, and push exercises for upper body, which I usually do about 5 days a week including weekends, and hand held weights & streching exercises that I usuall do 7 days a week. I also try to go shoping with wife & I just walk stores while she shops. 3 to 4 days a week.

I donot smoke now, did for 34 years but have been off them for over 19 years.

I am not sure what Fev1 is, but use purse lip breathing all the time.

I admit that I need practic at paceing my self. I get upset at myself for not being able to do things I used to do everyday.

[Tim]

Hi Bobby,

Thanks for replying so fast. Eileen is an R.N. and is a lot better at explaining the
medical stuff then I am. Thank God She's around today....

The problem with SOB and o2 Saturation levels is that there doesn't seem to be any
correlation between the two for a lot of people. What I'm trying to say is that just
because your SOB, it doesn't always mean that your Saturation Levels are low.
But being SOB is a good indication that you need to Pace yourself more and
maybe slow down just a bit.

You take the same medications as many of us and they are some of the best on the
market. They should be working. I don't know how long you have been on them
but they sometimes take a little while for you to feel the full effects.

I'm glad to hear that you see a Pulmonologist regularly. I'm on my 3rd one and
so far, so good.

I wish I could say that I quit smoking 19 years ago. Maybe things would be a lot different
these day, but you never know. Once you have smoked the damage is done.

Your Exercise routine is great and I wish I could do as much as you do. I need
to practice what I preach more and get busy.

Feel free to join us in The Village Gym and share your daily exercise routine with us.

The Fev1 is a reading from the Pulmonary Function Test (PFT). When combined with your BMI (body mass index) and your "functional" dyspnea (shortness of breath) collectively, this is what indicates what "stage" you are in. The standard below is what's been established by GOLD (Global Initiative for Obstructive Lung Disease)

Stages of COPD:

I
Mild
≥ 80% of Predicted

II
Moderate
50-80% of Predicted

III
Severe
30-50% of Predicted

IV
Very Severe
Less than 30% of Predicted or Less than 50% with Chronic Respiratory Failure


The PLB'ing will get you through a lot of your breathing difficulties. It's not a cure all
but when done correctly, it does help to get your breathing under control and settle
you down a little before going on. And Yes, We all need to practice Pacing...

You will hear that here at BBLW all the time...

Keep Posting and sharing with us Bobby, the more we share the more we learn.

Easy Breathing

Tim

[Bobby]

OK, what is "the village gym"?
I googled it & got a gym in Deleware, can't meet you there?
Appricate the feed back!

[Tim]

Hi Bobby,

The Village Gym is a forum right here at Breathing Better, Living Well.
On the front page when you sign in, just scroll a little further down and
look for Village Gym on the left hand side. We run a weekly thread there
and share our daily exercise routine. There is a lot of good information
in there.

Give it a look and join in if you like...

Tim

[mic3502]

Hi everyone....Merry Christmas and Happy New Year to all.....I have recently been diagnosed with COPD and am coping with it. My doctor has put me on Speriva and it seems to be helping alot. I see there is alot of support here and was wondering if there are any other support groups that a person can go and sit and talk face to face with others with COPD.
My main concern is that my husband is in denial that there is anything seriously wrong. As soon as I start to have problems breathing he thinks that just me taking an inhaler will make it go away. He is refusing to read any of the information that my doctor has provided me with to get a better understanding as to what to expect in the future.

When my doctor first diagnosed me he told me and my husband that I had pulmary fibrosis and to get prepared for a lung transplant as that was going to be my only survival. He gave me max of 6 months then after a CT Scan he came to me with COPD. He is pretty sure it is strictly bronchial. But told me that a lung transplant would still be a better option for me.
He put a very big scare into both of us and right after that my husband became totally disbelieving and in total denial.
What I am asking for if anyone has any advice they can give me as to how to help my husband to understand what is happening and what is or can happen in the future. As I have been told survival can be anywhere from a very short time to 30 + years.

I have not yet been to see a specialist that deals with this as I am still waiting to hear back from my doctor as to who and when I can get into see one. I live in a rural area in Alberta Canada so its getting into Edmonton doctors seems to be a bit harder to find.

thank you for listening and if anyone can help me out with any insight it would be appreciated.

Mic3502

[peg]

Hi MIC3502 - you have come to the right place and will find a lot of answers and support here. Unfortunately, we cannot sit down with you face to face as most of us will never actually "meet" each other face-to-face. We are spread out all across the country and now into other countries as well!

The first thing I would recommend to you is to see if there is a Pulmonary Rehab program anywhere near you. The programs are usually connected with a Medical Center or hospital and your Dr. or Pulmonary Specialist should have information about any programs in your area.

COPD is a blanket term covering many types of lung diseases and combinations of issues. One thing is certain - your inhaler may help keep you more open and able to breathe a bit better - but it will not make COPD "go away". Believe me, we ALL wish there were such a cure!

This web site has much to offer you in the way of articles, answers to your questions and information on how our lungs work for you to explore and try to become familiar with. I think your husband needs time to accept the seriousness of what you are facing, as do you. The diagnosis is frightening and a lot to absorb all at once, and even though COPD cannot be cured it definitely can be managed. We now have several new Respiratory Therapists checking in to answer medical questions, and Craig, who has been with us for awhile now, and Eileen, who is a nurse, and others of us dealing with our COPD who are willing to help in any way we can.

Check out the front page, read the stories and articles or just post in with whatever questions you have. We will all try to get back to you as quickly as possible and answer what we can. Give yourself and your husband time to accept and stay in touch.

I hope you have a good relationship with your Dr and that he is open to answering your questions, also. You might even have a "Better Breathers" group in your area.

Welcome aboard. We are pleased to have you with us and looking forward to hearing from you.

Smiles
Peg

[mic3502]

peg, on Dec 30 2009, 10:30 PM, said:

Hi MIC3502 - you have come to the right place and will find a lot of answers and support here. Unfortunately, we cannot sit down with you face to face as most of us will never actually "meet" each other face-to-face. We are spread out all across the country and now into other countries as well!

The first thing I would recommend to you is to see if there is a Pulmonary Rehab program anywhere near you. The programs are usually connected with a Medical Center or hospital and your Dr. or Pulmonary Specialist should have information about any programs in your area.

COPD is a blanket term covering many types of lung diseases and combinations of issues. One thing is certain - your inhaler may help keep you more open and able to breathe a bit better - but it will not make COPD "go away". Believe me, we ALL wish there were such a cure!

This web site has much to offer you in the way of articles, answers to your questions and information on how our lungs work for you to explore and try to become familiar with. I think your husband needs time to accept the seriousness of what you are facing, as do you. The diagnosis is frightening and a lot to absorb all at once, and even though COPD cannot be cured it definitely can be managed. We now have several new Respiratory Therapists checking in to answer medical questions, and Craig, who has been with us for awhile now, and Eileen, who is a nurse, and others of us dealing with our COPD who are willing to help in any way we can.

Check out the front page, read the stories and articles or just post in with whatever questions you have. We will all try to get back to you as quickly as possible and answer what we can. Give yourself and your husband time to accept and stay in touch.

I hope you have a good relationship with your Dr and that he is open to answering your questions, also. You might even have a "Better Breathers" group in your area.

Welcome aboard. We are pleased to have you with us and looking forward to hearing from you.

Smiles
Peg

Thank you very much Peg......it is much appreciated.

[Darrell]

MIC 3502,
There are much worse things than COPD. I'm a 20+ year survivor and just had a good checkup yesterday with my doc. With the right information and support there is an opportunity to live a full and rich life despite diagnosis of this disease but believe me it requires changes and new priorities for you and those around you to make it work best. Please feel free to ask all those questions that you must have and you'll find there is a massive wealth of knowledge, experience and strength among us individually and throughout this website.

Bring in the New Year on a positive note and resolve that you are going to go to battle against this disease and do all that you can to fight it.

Darrell

[Bobby]

Tim, on Jun 19 2008, 01:00 PM, said:

Hi Bobby,

Thanks for replying so fast. Eileen is an R.N. and is a lot better at explaining the
medical stuff then I am. Thank God She's around today....

The problem with SOB and o2 Saturation levels is that there doesn't seem to be any
correlation between the two for a lot of people. What I'm trying to say is that just
because your SOB, it doesn't always mean that your Saturation Levels are low.
But being SOB is a good indication that you need to Pace yourself more and
maybe slow down just a bit.

You take the same medications as many of us and they are some of the best on the
market. They should be working. I don't know how long you have been on them
but they sometimes take a little while for you to feel the full effects.

I'm glad to hear that you see a Pulmonologist regularly. I'm on my 3rd one and
so far, so good.

I wish I could say that I quit smoking 19 years ago. Maybe things would be a lot different
these day, but you never know. Once you have smoked the damage is done.

Your Exercise routine is great and I wish I could do as much as you do. I need
to practice what I preach more and get busy.

Feel free to join us in The Village Gym and share your daily exercise routine with us.

The Fev1 is a reading from the Pulmonary Function Test (PFT). When combined with your BMI (body mass index) and your "functional" dyspnea (shortness of breath) collectively, this is what indicates what "stage" you are in. The standard below is what's been established by GOLD (Global Initiative for Obstructive Lung Disease)

Stages of COPD:

I
Mild
≥ 80% of Predicted

II
Moderate
50-80% of Predicted

III
Severe
30-50% of Predicted

IV
Very Severe
Less than 30% of Predicted or Less than 50% with Chronic Respiratory Failure


The PLB'ing will get you through a lot of your breathing difficulties. It's not a cure all
but when done correctly, it does help to get your breathing under control and settle
you down a little before going on. And Yes, We all need to practice Pacing...

You will hear that here at BBLW all the time...

Keep Posting and sharing with us Bobby, the more we share the more we learn.

Easy Breathing

Tim

[Bobby]

Thanks for giving the different stages of copd. I have advanced from a stage 2 to a stage 5 repidly. My Dr says I have about 18 % lung function now. I am running 3 leders of Oxygen & 4 when trying to exercise. Have not been able to exercise as I would like . I have had 2 more heart attacks this year, one in Feburary, another in October. That has knocked me down so I have to fight for every breath if moving.,
I had a lot of trouyble replying to this, as site would not except my pass word. It works is some places and doesn't in others. After reading this coment on the difrferent stages, I hit the reply tab and it would not recognize my pass word, even after you set me another one. I am trying to work out at my rehab facility, it is a new great gym setting and top of line equiptment. But having trouble doing 1.5 mph on treadmill. Very disapointing.
Bobby

[peg]

Hi Bobby,
The important thing is to keep doing. Whatever rate you do is OK as long as you keep going as long as you can. Some days I can only do 10 min at 1.2 on the T/M and other days I can easily (???) do 15 at 1.8 and not feel too winded. Each day is a new day with different breathing reactions. So much can affect our breathing and it changes on a daily (hourly??) basis. At PR at least we are monitored and you can ask there how far to push yourself and at what oxygen rate. That is the beauty (one of them) of being involved in a good PR program. The staff of experts keep watch and guide you as you work to build stamina and endurance to enable you to have better health.

My lung function is about 20% or less, some days not functioning so well, and others doing a more comfortable rate.. I work for endurance and stamina, and it helps. I can really tell a difference when I don't go, because I am too lazy to exercise at home. I have the equipment, but not the "push". I am ashamed of myself for that, and keep trying to do more, but that is why it is important for me not to miss PR. Like Tim, I need to practice what I preach and develop more consistency.

Others here are so dedicated to daily exercise, and I am trying to get there...simply because I just DO so much better when I exercise. We all do. The stronger our muscles are the less of our oxygen they need to work, leaving more for our "other parts".

Sorry you are having so much difficulty posting. Keep trying and if necessary send an email to the betterbreathinglivingwell email address and one of us will respond and try to help. That should not be happening and we need to know if it is happening for others, also. We want to hear from all of you and correct any problems the site may be having.

Happy New Year, and please stay in touch.

Smiles
Peg