Introduction: Hi, I've been a lurker... - Lung Conditions C...

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Introduction

pecede profile image
16 Replies

Hi, I've been a lurker for sometime now so I thought I'd say hello and thanks to everyone that makes this wonderful resource possible.

I live in Toronto Canada and have just reached my 71st year, retired ten years now, while working I had the privilege of working and living in many parts of the world.

I was living in South East Asia about four years ago when I was diagnosed with COPD, not surprising after 50 years of one pack of cigarettes a day I suppose but I'd long ago joined the "Can't happen to me" club, boy was I wrong! Anyway my affliction has gotten quickly worse over a short period of time and now I can't walk more than twenty feet without resting/collapsing.

My oxygen level is usually around 92 to 95% after the six minute walk, so no oxygen for me.

I'm now back in Toronto, (all praise Canada's healthcare for all). I've had multiple exacerbation's with measurable decreases in function each time, usual treatment 40mg Prednisone daily and antibiotics, unfortunately I now don't seem to be able to get off the prednisone and am on a permanent dose of 25mg per day, love your description "Devils Tic Tacs." I will try to go down another 5 mg in a couple of weeks. My Respirologist is great and is referring me to the transplant team at Toronto General Hospital, he also thinks I have a significant element of Asthma due to some of my blood tests and the fact I'm no longer responding well to inhaled corticosteroids, so am being studied to go on a Bi-weekly injection of Xolair...anyway I could go on for hours but that's a quick encapsulation of why I'm here.

My best wishes to everyone here

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pecede
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16 Replies
HungryHufflepuff profile image
HungryHufflepuff

Hello to you too 😊 It's nice to meet you. Best wishes for your referral to the transplant team, I hope you'll be able to get on the list soon 🤞

Spacecat1 profile image
Spacecat1

Welcome to this wonderful friendly helpful forum. Always here for you to rant or just have a natter I have had copd since 2008 last couple of years not good. Got the 6 minute walk after Christmas with oxygen.

Emerdale profile image
Emerdale

Hi welcome to the group it sounds like you have a good med team 👍Good luck with the Transplant 🙏

CDPO16 profile image
CDPO16

Hi and welcome. I have stage 4 COPD with asthma overlap. Fortunately a steroid inhaler helps.

Sounds like you are in good hands with your medical team. Hope the xolair helps and good luck with the transplant referal.

pecede profile image
pecede in reply to CDPO16

Thanks, are you taking Xolair?

CDPO16 profile image
CDPO16 in reply to pecede

No, I don't have xolair. My asthma is late onset and not allergy related.

sassy59 profile image
sassy59

Welcome pecede, nice to meet you.

It sounds as if you’re getting the best of care and I wish you well. Xxxxx

Damon1864 profile image
Damon1864Volunteer

Hello and welcome, you seem very positive which is good. It always nice to meet new people that's why I love this site. We get to meet people from all over the world and we are always finding out new things about how they cope with a lung condition. Please keep posting have a lovely day and take care of yourself 😊 Bernadette xx

pecede profile image
pecede in reply to Damon1864

Thanks Bernadette.

mikeadams51 profile image
mikeadams51

Welcome and good luck for the future

wheezyof profile image
wheezyof

Hello and welcome.

Here we have oral sreoids in 2mg and 5mg. If you can get the 2mg it may be easier to cut down in smaller amounts, 5mg is quite a drop.

Keep as well as you can xxx

pecede profile image
pecede in reply to wheezyof

Thanks for the reply, not sure if it's available in 2 mg will check, what a good idea.

Jaybird19 profile image
Jaybird19

Welcome It does help so much to share all the info available on this site. I have learnt so much more from these friendly people than i have ever known in many years of working in the NHS, hospital stays ,and my visits to consultants.

Best wishes

peege profile image
peege

Welcome pecede and good luck with the transplant discussion. One or two members have had a recent transplant. Look up Caspiana who's posted some very interesting and knowledgeable information on her one lung transplant in Japan.

PS I bought a pill cutter to very slowly cut down on a medication.

Looseloafers profile image
Looseloafers

Welcome & you hang in there! All the best. Could you cut the pills in half perhaps x

Izb1 profile image
Izb1

Hi pecede and welcome to the site x

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