Welcome to aran

[peter]

Welcome Aran, My name is Peter and on behave of copd in Canada. I want to extend to you a warm welcome . You will find a lot of information here. So look around and when your ready please join us @ the fence .

[susanny]

Aran! So nice to see you and hope you find what information you are looking for here. We offer good company, too, with people facing the same things you are. Join us at the fence and get to know us. We look forward to meeting you, too.

Sue

[John]

[sandy07]

Welcome to COPD Canada. Great bunch of folks all willing to help. Don't be afraid to ask questions.

[Aran]

;D
Thank you for the unexpected welcomes it was a very nice surprise...

I'll introduce myself a little here and I'm sure someone will point me in the right direction.
I'm 59, English and moved here to Canada in 2003. I was 'fairly healthy' in 2003, by 2007 I was going downhill fast..

In 2007 I was diagnosed with Fibromyalgia, had a silent heart attack (very minor), diagnosed with fatty liver disease, arthritis and 'mild' COPD. Nothing was ever done about the COPD, the doc was concentrating on my weight and the fatty liver more than anything.
Then 2 years ago I became diabetic and she's been focused on that. I'm now on long lasting insulin which is helping.

2 days before New years Eve last week I started coughing, couldn't stop coughing, my temp was shooting up and I was getting chest pains. We sent for an ambulance and I was admitted with influenza and pneumonia. Put on 100% oxygen, antibiotic drips, Tamiflu, and fast acting insulin cos my sugar were sky high by that time.
The oxygen was fantastic, it made me realise that I've been suffering with a concrete coat of armour for the past couple of years.

I was sent home 4 days later because they're desperate for beds cos of the flu epidemic, those nurses are marvelous. I was told that my mild COPD is now Chronic COPD... When I asked how bad the doc said very VERY bad and that he'd be very surprised if I wasn't on oxygen very soon, very seemed his favourite word...

I've been sent home with a Salbutamol inhaler, and Symbicort (sp?) inhaler as well as my Amitriptyline, Atenolol and Aspirin.
I'll be seeing my GP on Monday afternoon where I get the dubious pleasure of talking her into sending me to a specialist or somewhere that they know what they're doing..

I know I need oxygen, how do we get it? Who prescribes or orders it for us? Do we pay?
How do I find out the things I need or the questions to ask or even WHO to ask?

Thanks for listening..

Aran

[Blossom/Jackie W.]

Hi Aran; and Welcome!
I'm just popping in to say g'night to e'one and I saw your post......
If you don't mind it's jammie/bed time for me so .... I look forward to reading it again in the morning!

[susanny]

Hi Aran. Boy, you sure have been through the mill over the past few years, and especially recently, haven't you?!! I am so sorry we have to meet like this but it is really nice to be able to point you in the right direction. BTW, I like your name. It's really pretty.

I live in the US, so some of the terms and ways to go about things are different. I was diagnosed in 2006 with moderate COPD but quickly went downhill to severe by 2008. That's because I didn't quit smoking so it was my own fault. Before diagnosed with COPD I was diagnosed with asthma by my PCP. Then he sent me to a specialist, called a pulmonologist here in the US and I believe is called a Respirologist in Canada. There I was given a Pulmonary Function Test that told us that I did, indeed, have COPD and what the severity of it is. Then he sent me to the hospital to have a walking test which tests if you need O2. At first I only needed it at night when I sleep but now I need it day and night. It's a hassle and I hate it but sure do like breathing so am accepting it! My insurance pays for most of the cost for it. I have a concentrator that is a machine that converts the house air to cleaner and higher O2 air , and then for going out of the house, or if the electric goes out, I have tanks of O2. Small ones for going out and larger for electric outages. You can also purchase a portable concentrator but they are pretty expensive. My insurance co. paid for me to try one out and I didn't like it for my specific O2 needs. For someone on lower O2 needs a POC would be excellent. A couple of people on our Forum have them.

The inhalers you are on are good for C0PD. I would ask about Spiriva, which is a med inhaler that is the only med made specifically for COPD patients. For me it works great and if I forget to use it I really do notice it later in the day. You would take it once a day every day in addition to your other inhalers.

I am the same age as you are. Are you still working? I had to take an early retirement on disability in Oct. 2008. It was really hard to say goodby to a life I loved but I just couldn't do it any longer. I am married and have 2 grown children. My daughter lives in Pittsburgh PA, about 4 hrs from here, and my son lives nearby us. No grandchildren, but we do have grand dogs, . Each of my kids has a dog and they are the replacements for g.kids, .

I am sure somebody from your country will come in and let you know how things run in CA. I am looking forward to getting to know you better, too. Take care and try not to worry too much. There's a lot you can still do and if you really need the O2 you will be able to do so much more, too.

Here's a big hug for you to get you through the rough times: It'll be ok, you'll see. I am glad you are better already from that flu and pneumonia that you had. Must have been a scary time for you.

Sue

[Blossom/Jackie W.]

Hi Aran;

Welcome to the flock! ;D

I agree with Sue; you've been through the mill lately that's for sure.

You've also got a lot questions that can't be addressed all in one sitting. Part of that is because of the process and the course of things and steps a person has to go through first.

So..... I'm sure your province is the same as mine in that you have to be "referred" to a specialist. In this case you'll be wanting a Respirologist and it's your GP that would refer you. You'll also be needing a full PFT (pumonary Function Test); not just a spirometry which it sounds like you may have had at some point? Hopefully your Dr is not just "winging it" when he's making the assumptions about the severity of your disease and/or oxygen need)

Oxygen..... let's talk about that just a bit. There's a standard test they do known as the 6 min walk test. It will measure how your oxygen level is during that walk test. (There's also I think now what's known as the Shuffle test but most are the aforementioned) If your oxygen drops below a certain level, it may very well indicate that you perhaps s/b on long term oxygen therapy.

Sometimes it's a temporary measure, other times it's long term. You're just coming off a very bad bout so it's possible you may not need it once you've recovered.

You're on a beta blocker and also an antidepressant which is oft times used for chronic pain. That makes sense because of the fibromyalgia.

I'm surprised as Sue mentioned that you aren't on Spiriva.

Anyway; first things first..... ask for a full PFT and ask to see a specialist. Doing the what if's or maybe's isn't gonna help you until you've gotten a handle (idea) of where you are in this disease. BTW; When you do have the test ; ask for a copy for your own files. You have a right to it.

And, may I suggest, go to our main site and look for info in the left hand sidebar if you haven't already. It'll help .... especially before you see the specialist and it'll also explain the PFT test ....


copdcanada.ca/

Anyway Aran; I'm glad to see you here! And I know you're going to have a lot of questions; heck we all do that's why it's nice to come here and ask Q's, share info and compare notes.

Let us know how you make out with your Dr on Monday!

[barb7330]

Hi Aran,
I'm in Ontario and on oxygen. First you have to go to a respirologist for the 6 minute walk test and he will order oxygen for you at no cost to you. If you need anymore info just message me.

[Aran]

Thanks for the info guys, it gives me a place to start. If I was still in England I'd know how to do things, I cared for my dad for 15 years while he was dealing with Emphysema... So I know what's ahead of me.. yuck...
I was/am a smoker, although while I was in hospital they gave me nicotine patches and it worked, so when I see the doc on Monday I'll be asking for those so that I can quit. 43 years of smoking and no-one to blame but myself, I knew better. The difference is that I want to breathe now.
But I am one of those people who will question and question because I like to know what I'm fighting and how to fight it...

We do have one of those Pulmonary Rehabilitation places in North Bay which is 40 miles away so I'll probably be referred there.
My doc knows that I educate myself by internet, she hates it, but I often find info for her too...

When I came home from hospital, I grieved a little, for myself and for my husband cos I know what he's going to go through in the next few years but I want to make it as easy for him as I can. I've been the carer for most of my life and don't wish it on anyone.
I'll go through the site and print out what I can to show the doc and get her irritated with me again...

I'm also looking to the future, my future, I love gardening, growing my own veggies, hubby does the heavy stuff (he's my toyboy...) and I do the growing. 150lbs of tomatoes last summer, beans, peppers, herbs, eggplants and flowers too... Food for the body and flowers for the soul. So I'm making up my seed list and I'll be buying fruit bushes this year too although I do have raspberries, loganberries and blueberries growing wild on our property, the bears and birds get them first though...

Off for a cuppa now..

Aran

[susanny]

It sounds like you were doing pretty heavy duty gardening and canning/freezing last summer, Aran. Even with your husband doing the heavy duty work, you still were pretty darn active, which is great news. This means, in my impression, that the current state you are in is probably temporary, for now. Often after a particular virulent case of pneumonia or lung infection a person might need O2 for a short while until they recuperate. It hasn't been all that long since you've been dealing with the flu. Actually probably still dealing with the residual effects of it as New years was less than 2 weeks ago. You don't want to take the PFT test too soon after having an infection or flu as you aren't going to get an accurate reading of how you really are. The flu is going to have an influence on the test and could make you look worse than what you really are. Same with the walking test, I would imagine. It's not that the O2 would hurt you, just that you might not need it all the time once you recover from the flu, maybe just during the night while sleeping, if then. I think it takes a while to get into a Respirologist in CA anyway, from what I've seen here, so you'll probably be ok for the test by the time you see the specialist and then have the test scheduled.

That is super great that you have a rehab center so close to home! Quitting smoking and exercising are the 2 best things you can do for yourself now. My husband was diagnosed with mild Copd and was put on the Spiriva I mentioned to you. It improved him so much that he's no longer considered to have Copd at all and doesn't use the Spiriva anymore, after using it for over a year and a half. He hasn't quit smoking yet,unfortunately. He's cut way down but not stopped. He has a lot on his plate right now taking care of me. I was just in the hospital in Oct/Nov. and have gone way downhill since then....even have a wheel chair now for when we go out. He has to take care of all the house hold duties and cooking and personal care for me daily that I can't do myself. As you were saying about grieving for your husband, I know exactly what you were feeling. Hopefully it will be years before your husband even has to consider that for you. Do the smoking cessation, the rehab, and whatever meds are prescribed to you and I'll bet you recover nicely from the flu and are back to pretty close to where you were before you got sick. If I had been smart I would have quit smoking myself the last time I was in the hospital, but no, I was stubborn and didn't do it. That's how I got into the position I'm in now and ended up back in the hospital again with a particularly nasty infection. I am not recovering like I did the other times. Oh, a little bit better but no where near where I was. I can't drive anymore or go out on my own like I was before I got sick in Oct. So really, try very hard to get rid of the cigs. I still crave one every now and then but am fortunate that my husband doesn't smoke around me nor does he bring cigs anywhere near me so I can't get a hold of any. The craving passes very quickly anyways.

Ok, well, good luck. Will be interested to hear what your dr. says on Mon. i would still push for the specialist, for sure. You really need to see one.

Sue

[Aran]

Hi Sue, thanks for your encouraging reply. Only two more days and I see my GP whoopee...not...
I will ask her about the Spiriva as so many of you have suggested it... Plus a referral to the specialist etc.

I am getting better each day, I'm actually recovering faster than my husband Rob which is not surprising as when I went into hospital he and his stepfather both came down with flu and stepfather went to bed and left Rob to deal with the cats and dog, (10 cats 1 dog) plus the wood stoves and making the pots of coffee. Rob did make a stand when stepfather came out and asked what's happening about food and Rob got the toaster out and said "help yourself"..
I've just sent Rob back to bed for a few hours to get some rest.

I slept better last night because I used the couch, so I was able to be propped up better for breathing, and the cats were able to use my empty side of the bed and didn't bother me on the couch at all. I'll do that for the next few nights and see how I go.
I'm starting to do a little more each day, mainly the cooking to give Rob a break.

I'll post what happens at the docs on Monday..

TTYL

Aran

[susanny]

aran, Didn't you say you started out with the flu before you ended up in the hospital? It's like a river and runs through the whole family. I remember the one time my husband and I got it at the same time and were both stuck downstairs unable to get up to our bedroom.. Thank goodness we had two couches in the living room! Neither one of us had ever been so sick in our lives and I believe it lasted about 2 weeks. Our kids were in elementary school and pretty much had to fend for themselves, poor babies. That's how it sounds like it is at your house between you, your husband, and his stepfather. No kids there, I take it, except the little animal types. I am glad you are getting your strength back, albeit slow. Just don't overdo it.

Glad you're going to ask about the Spiriva. For most of us it is a wonderful help. But just like any kind of med you have to watch yourself with a new drug. I was prescribed Advair and it just made me worse while others liked it. The same with Spiriva, one girl here gets worse on it. I can't breathe well without it. You just never know.

What time is your appt on Mon.? Did you know we have a calendar for our forum? I am going to put your appt on it for you. then when you get your appt for the specialist and any other appts you can put them on the calendar. It helps you AND us to remember when you go some place and we can pray for good results or have good thoughts for you.

Enjoy your weekend. Kinda wish I'd been a fly on the wall when the two guys there were sick and alone without you there to baby them, . My husband is such a baby when he's really sick. He always says he's dying, and wants sympathy. I can give sympathy but don't over do it on the whining please. Gosh, sure hope I don't over do it myself! Take care, Sue

[Aran]

Thanks Sue, the appointment is at 2-30pm...

We know the day that we were infected with the flu virus, we'd all gone shopping to North Bay 40 miles away, the next day Rob and I went to tea at a neighbours, the day after that I began coughing and a fever and the following night I was admitted to hospital with Pneumonia.
The following day is when my guys came down with it and my neighbour had a mild dose of it..
I was okay, I had the antibiotic drips, the oxygen etc...

Rob is feeling a little better for his rest plus I made him a herbal tea to loosen his throat and chest and it has helped. I used Thyme, Cinnamon Basil, Honey and fresh ginger root.. He's not coughing as badly now...

I'm going to go settle on the couch for the night with a nice cuppa tea and a good book...

Nighty Night.

Aran