Muggsmom

[John]

Welcome .

[sandy07]

Welcome to COPD Canada. Join us at the "Fence" when you feel comfortable. Don't be afraid to ask questions.

[susanny]

Muggsmom! Nice to have you join our family.

You were up awful early in the morning joining the site, must be you aren't sleeping very well or something like that. Glad that you found our forum, you will also find lots of information and help here. Just check everything out and if you can't find the answer to any questions, ask away and somebody will for sure try to get the answer for you. Would love to get to know you and would like to invite you to join us At the Fence where we meet and greet each day and check up on each other. Whenever you feel like it, or not......

Hope to hear from you soon!
Sue

[peter]

Welacome Muggsmom

[muggsmom]

Thanks for the great welcome. Sue, you're right, I'm a terrible sleeper. I'm glad I found this site, I've learned so much already. I was 'officially' diagnosed with COPD 2 years ago, when I had a severe flare-up, but I have been on Ventolin for approximately 6 years.

I am 51 years old and smoked until July, 2011. I live in a small town 2 hours east of Toronto. Luckily we have a small hospital, so help is close by when I have a flare-up, which is happening often. I recently had a severe episode that required me to be transported to Kingston General Hospital, about 1 1/2 hours away. I spent almost 2 weeks in ICU, then 4 days on the ward. The stress caused some problems with my heart, Takotsubo Cardiomyopathy. A portion of my heart was not beating - it looks and acts like a heart attack, but there is no damage.

I saw my Respirologist (sp?) on Tuesday and he said it's time to contact the Transplant Team. To say he scared the daylights out of me is putting it mildly. That is not something that had ever crossed my mind. So I will definitely be looking for info and support.

Sorry, I didn't mean to write a book, haha. Looking forward to meeting everyone!

[Blossom/Jackie W.]

Hey Muggsmom;

Guess we're a little on the slow side today here. It's Friday....

First... welcome! We're glad you're here and we look forward to getting to know more about you and mutually sharing.

It sounds like you've access if/when you need i; t though.... let's hope the need is less frequent! Do you mind my asking what meds you're on? Do you live alone; have family.... like I said; looking forward to hearing more about you!

My name is Jackie..... aka Blossom

[susanny]

Hi muggsmom...are you calling yourself that because of a child named Mugg? Just curious, it's a different name.

You sure have been through the mill. So sorry we have to meet this way, but glad you found us. We will do everything we can to help you get through this. I'm glad you have good care close by. I'm not that lucky. We have a hospital close, but there's only one pulmonary dr (repirologist in you country) and it seems like he's always out of town. I need him now but he won't be back until Weds. Ridiculous. Anyways, do you know what your numbers are from your breathing test the last time? It's the FEV1 that we'd be interested in. You are so young, but not much more than I was when diagnosed. Where would you go to have your transplant done, in Toronto? At least that's not too far from home. I'd have to go out of state about 3 or 4 hours to one of two hospitals that do them. I guess that's not too bad, but not close enough for visitors too often or going home to recuperate in the beginning. Have you decided what you're going to do? We have a thread here on other's who've had the surgery...have you read those? They've given their personal stories. We also have at least two members currently listed now. You can start off from the very beginning with them.

Looking forward to getting to know you better. We really do care about each other, so you've come to the best place for companionship and help in this situation.

Take care, Sue

[muggsmom]

OK, here goes. I live alone with my dog, Muggs, who is the light of my life and the bane of my existence! I have 3 children, 2 boys and 1 girl and 3 grandchildren, 2 boys and 1 girl, with another girl on the way. Unfortunately, my 2 sons and grandsons live in BC and my daughter and granddaughter(s) live in Muskoka, about 4 hours away. I don't drive, so visits are rare. Thank goodness for Facebook and Skype! I do have a close friend/former SIL that lives here, so I'm not totally alone. I have 2 brothers, and my Dad is still with us, but we're not close. We lost Mom in 2001 from breast cancer. She also had COPD.

For the COPD I take Spiriva, Advair and Ventolin. My Dr. put me on Daxas this week. I am not on O2. I have no idea what my FEV1 is, either I forget to write it on my list of questions or we get off on another topic and don't come back to it. I'm not sure the last test would be very accurate, I was having an exceptionally good day, I could have run the 6 min. walk! I do know that my lung function is 27% of what it should be. I also have several nodules in both lungs but no one is quite sure what they are. There was one that was increasing in size but my last CT scan showed it had decreased and there has been no change in the rest. My Dr. thinks that a biopsy would be too dangerous, and probably no help because he couldn't check all the spots. No sign of cancer in sputum tests.

I have no idea what to do about the transplant. I think I'll meet with them and go from there. One step at a time.

[susanny]

Good morning, muggsmom. Well thanks for straightening out that question of mine...thought mugg was a strange name for a kid, . It's hard when your kids live so far away, isn't it? My son lives close and visits very often during the week, but my daughter is 4 hrs away and that's hard on me. I also have two sisters and a brother nearby, and a husband. So guess I'm well looked after.

I am very surprised that you aren't on O2 even at night with t hat lung function. Did you do the 6 min.walk test? If so, what was your O2 level then? Others from Canada can tell you what is the level needed to get O2 in Canada (I'm in the US), but here if it goes under 90% it's ordered. And that's even low. I can't for t he life of me remember right now what my FEV1 was in June, but back when I was ordered O2 it was 39%. My DLCO is extremely low, too. Probably the biggest reason I need O2.

Do your meds seem to be helping you as good as they could? You said you had an exceptionally good day the day you had your testing done, do y ou have a lot of good days like that? If so, the meds are probably doing you right. I have a nebulizer and do 2 treatments twice a day normally; when having an exacerbation do it more often with another one or two different meds. Which is why I'm up now, am doing really bad and forgot I had morphine to inhale when like this. It's been since Feb. since I needed it last and it just slipped my mind until now.

Anyways, do you have an sppt set up to discuss the transplant option? You must have a thousand questions, I would. The two girls who are presently going through this process will probably show up soon. One is Bobbi, and the other is Aero. I hope they come and talk to you.

Thanks for sharing. Iit's good to know more about you. We're a family here; cyber, but still family.

[muggsmom]

I did do the 6 min. walk, and I'm pretty sure my O2 was in the low 90's. Apparently your levels need to be below 88 at rest to have it covered.

I just saw my Dr. on Tues. so I haven't heard from the transplant team yet. I did have a lot of questions, but I found the patient guide that the hospital gives out and it answered a lot.

Hope you feel better soon.

[Blossom/Jackie W.]

Hi Mugs; I'm Sorry... .. I meant to post something earlier but missed doing it. Thank you for sharing a bit more info about you! Sounds like you've a lot going on!

Oxygen's kind of a funny thing as to need etc. I run into it alllll the time.
I find interesting that many people assume that you're not bad unless you're using oxygen. Uh huh.... and that's even with the medical folks. I have 02 but it's more PRN.

I did however look at your age. And; from what you're say where you currently are respirator wise; and what they might be considering, please tell me they've done a Alpha 1 test on you.