Intro....Terrilee

[Deleted]

out there,

My husband has just been diagnosed with copd Mod-Severe, we are kinda bouncing around right now getting all the tests completed for the specialist and trying to find the right meds for Paul....what a difficult situation we find ourselves in until all is settled down...Paul has had 3 infections so far and he is short of breath, we are trying to learn what we need to know to continue on and would apprciate any feedback that anyone has to share....thankyou so much
Paul and Terri

[Blossom/Jackie W.]

Hi Terri;

I moved your post here so that folks would see it better. Welcome!
My name's Jackie (aka Blossom) and I think you'll find the folks here very warm, caring and full of "learned/living" knowledge and info.

When you're first diagnosed it can kinda blow you away.... we remember. But; you're NOT alone and we have people here who've been living with COPD for well over 20 years.

I'm not sure what you mean by "mod/severe" maybe you could share his FEV 1 number if you know it?

So; what meds is Paul on? And; you said "infections" .... can you elaborate a bit?

Regardless of e'thing..... Terri; we're here to help and support as best we can. So... jump in anywhere; ask anything you want; though for the 1st while you might get more questions as we try to understand where you guys are right now.

One step at a time!

[John]

[barbara41]

Hi Terrilee,

Your introduction reminded me of when my husband was diagnosed with COPD. I had to do a lot of ' self talk ' to come to terms with the fact that our lives would be altered - especially our retirement plans. I credit his positive attitude and the fact that he learned as much as he could about his disease and followed treatment plans, with the active and productive years that followed. Rehab was also a big factor in his coping - both medically and emotionally.
I don't know if you consider yourself a ' caregiver ' yet but if ever you need that kind of support I am here .
Take care ...

Barbara41

[mary57]

Welcome Terri I see that you are overwhelmed by all this right now, but remember to take things one step at a time and be there for each other. There is a lot to learn about LIVING with COPD, and a lot of people here that are doing just that. I know that whatever your questions may be someone here will either have answers or know how to find them.

[Deleted]

Oh Thankyou so much We really appreciate the fact that someone even responded to us.....I am not sure what his FEV 1 is as we didnt know it was important to have.......Paul has struggled a little bit with SOB for probably a year now and just put it down to age (66).....We were in Mexico on Vacation for 2 weeks in November and he started to feel SOB, so we took it easier thought maybe it was too hot for him......shortly after we were home Paul developed a infection, coughing up green mucus, so doctor put him on Avelox 400mg for 7 days.......he has had 3 episodes of this same infection since Nov and is currently having the same problem with infection....we have been to see the specialist once already whom has sent a letter to our family doctor saying Paul has mod-severe COPD...Paul has had a heart test which has turned out good no problems there....now he needs to go for a cat scan on his lungs to makesure the xray he had didnt miss anything......these appointments are not taking place until March 23rd then we have an appt again with the specialist 10 days after the test is in which then brings us to April 5th..........we are kinda in limbo right now and of coarse worried....I have done some research on COPD and have found a support group near where we live at a Hospital, so back to the doctor to get a referal for this group. Paul is taking Spiriva in the morning only and has a blue puffer SALBUTAMOL to use 2 puffs four times daily as needed. Right now it is hard to get our heads around it and wonder what the future holds........We understand that there is a way to manage COPD but haven't found out what really works well for Paul as yet...........Thanks so very much for listening
Paul and Terri

[annabob]

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Well Terrilee you have come to the right place. There is usually always someone here to answer any questions you may have. If they dont they will find it for you.

[bobbioh]

jump in anywhere bobbi

[Blossom/Jackie W.]

Wellllll Terri;

Just from the little bit of info you've supplied I do bel;ieve that "Paul" can have, and llive a pretty decent /normal, long life if he looks after himself.

If he is mod/sever..... I still don't know what that is though; it surprises me he's not on Advair or Symbicort. That's unusual; unless there's another med he's taking beyond the blue puffer?

Did he ever have a breathing test?

As for infection ongoing..... sometimes it can take more than one round of antibiotics to clear something up. Have they suggested (maybe you could ask?) for a sputum test.

Just keep asking questions Terri of e'one; clinicians included. Seek answers.

On a plus side.... his heart is great! A BIG bonus wouldn't you say?

[Deleted]

Hi Blossom,
Thankyou for the encouraging words I too am very grateful Paul has a GOOD HEART ....about your comment...it suprises you he is not on Advair or Symbicort......not sure what those are and do you think they may work better for him? Do most copd people with Mod-severe go on this medication? We are going to the doctors tomorrow to get a referral signed for rehab if doctor will sign it..........What would be the appropriate questions to ask the doctor at this stage.....anyone have any suggestions?....Would Oxygen be a good start? not sure please help..

[Deleted]

Hi Barbara,
I have had a little time to try and evaluate the situation we find our life to be in, and I can say that yes I will be a caregiver in the future....right now I work full time as a Quality assurance Manager and have been off work for this past week to support Paul....You said your husband had copd as well....may I ask what stage was he when diagnosed and could you just share with me a little bit about your husband living with COPD and how you coped with it.....only if you want to share, if not I will truly understand...your friend Terrilee and Paul

[mary57]

Terri, Symbicort and Advair are two other inhailers that one or the other are often prescribed to work with Spiriva.

[barbara41]

Hi Terrilee,

I'm happy to share anything about our life with COPD. John was diagnosed about 12 years ago after being admitted to hospital with pneumonia. I honestly don't remember anyone saying what stage he was at and I couldn't tell you what his FEV numbers were - after the initial shock he was very keen to learn everything about the disease and I think I coped by not learning very much. He attended an excellent program at a Hamilton hospital where he learned so much about living with and managing COPD - that set him up for about 11 years of active living. He used Oxygen for about 2 years before he died last July.
I became an informed caregiver as his needs increased and was lucky to find the caregiver support group associated with this network. There was very little in the community for COPD support. Unfortunately the online caregiver group is no more but I am happy to share whatever I can.
I will send you a personal message with a little more info.

Barbara

[Deleted]

Thanks so much for sharing with me Barbara.
I am so sorry to hear of your husbands passing.......I understand why you coped better by not learning more, as the more I read the harder it is to keep strong, but it seems that Paul is too upset to read on it so I find myself explaining to him many things even though everyone is so different with flare ups etc.....I am thankful that you have responded and I look forward to sharing with you if it isnt too painful for you.......I am new to this site and trying to find my way around so if you send me a personal; message where would I look to get it? Can you just answer i question for me...At what point does the doctor put you on Oxygen....is it a blood test that they read or???..
Thankyou Barbara..look forward to hearing back from you..

[barbara41]

Hi Terrilee,

I't's not at all painful - it actually helps to give back. John started using oxygen when his Oxygen saturation levels in his blood dropped too low- but this was a decision made by his respirologist - I'm hoping your husband is being referred to a specialist and you are not trying to find all the medical answers on your own. There is a blood test that measures arterial blood gases but generally a finger oximeter was used and John did have his own so that he could check his oxygen sats when he felt short of breath. There is a Respiratory Therapist on this site who can answer a lot of your questions - look for him on the Home page - it's called ' ask the Respiratory Therapist questions ' I think. It would also be so beneficial if there was some COPD rehab program that your husband could go to - maybe at your hospital ??
I'll try to explain the message thing - I am mostly computer stupid - and if anyone can be more helpful please jump in. When you log in you should see a note at the top of the screen that says you have messages. Just click on that and you should be able to open it. And to send a message I click on the name of the person and their bio will pop up and give you a chance to send a message. Have I confused you completely??

Barbara

[Blossom/Jackie W.]

Terri/Barb... you two are doing just fine it seems and Barb... nope you gave Terri the right info on personal messages.

Terri.... I'd like to comment a bit more, hopefully in the morning but.......to help you with some questions.... (though I think you went "today" to the Dr) If so.... how'd you make out?

Here's page 1..... copdcanada.ca/initial_visit.htm and page 2 .... copdcanada.ca/follow_up_visit.htm

[Deleted]

Barb and Blossom,

Thanks for sharing Barb I am feeling much better for it..........Thanks Blossom for the information...I will print it out and take it with us to the specialist.

We went to the family doc today and he was able to give Paul some results of tests done such as blood tests which relieved our minds but could not sign a referal for rehab or say if Paul should go on Oxygen or not as he said the Specialist will decide that so we will have to wait...The good news is.. ;D Paul is feeling much better as he has taken the last of his antibiotics and it has helped a great deal......sometimes the antibiotics are hard to take.....but they work and thats the main thing....My heart goes out to all of you who are struggling.....Praying for everyone.