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Post by mdr1986 on Mar 12, 2018 1:56:27 GMT -5
, I just joined this site and wanted to say hey. I am 32 from Southwestern Ontario. I have smoked (pretty much chain smoke) since I was . About two years ago realized my "normal smoker's cough" wasn't just a cough, but not having a family doctor ignored it... had just got over a year of dealing with (and getting the all clear on) an extremely early stage lymphoma, so did not worry about anything not related to that, and was assured repeatedly my cough was not related so it was never a concern. However, I lost my family doctor, and during last summer had to go to emerge three times for shortness of breath and pretty much waking up drowning in phlegm and coughing. After the third visit I was told "you almost defiantly have moderate COPD but that is a chronic condition and we cannot offer referrals to pneumonologist if it is not an emergent condition!" So after spending all the time since then trying to find a new family doctor I finally went to a walk in clinic and got a referral but am still waiting for the specialist to call me so I can start testing to see what I am dealing with. I am very close to my family and they are my main support, but literally the day I was going to tell them about all this my 58 year old mother got diagnosed with uterine cancer (we are not sure what stage yet) so I am really looking for some kind of support and information. I know I need to quit smoking, even if the doctor is wrong and its not COPD (though after a lot of research I really believe it is, all the symptoms match and there is a huge family history on both sides - all three emerge doctors and the clinic doctor all seem or seemed pretty certain COPD was likely) but over the years I have tried almost all the methods and aides and counselling to stop smoking but with my addictive personality I have the intellectual honesty to say I really doubt I'll actually quit any time soon. Like I said I have done a lot of research in the last six months, and obviously I have not been officially be diagnosed, but my entire way of coping with anything is information, and I am at a loss and without a support outlet at the moment. Virtually any time a website gives information about prognosis and progression it starts with "if you quit smoking" and gives almost no information about if you don't or simply can not, or if early age means a worse outcome. When I was 29 and was told I had lymphoma after a cancerous node was found in face [(I thought I had an ear infection, which I am prone to and had just told my doctor if I could get the antibiotics before my ear actually started bugging me because the node in my check was swollen and that had always happened when I had an infection)]. Literally for months I was told that the cancer had to be very advanced as my type of lymphoma virtually always starts deep in the neck or chest - and symptoms are only diagnose-able very late) -but it turned out they were all wrong and I was part of less than one percent of people where it started in a shallow node and diagnosed quickly. All I really had to do was a few weeks of low dose chemo and have a few lymph nodes removed and a bunch of tests and scans every few months. I mention this because for several months I came to terms with the fact I was going to die young and it seems I never really shook that sense so I am not really scarred of death or pain - I just really want to know what to expect - with lymphoma finding that out was easy but with this it seems to be so conditional on multiple factors that the answer is much more difficult and that is what horrifies me. So, not sure how much this matters, but I am 5 foot 9, overweight at 270ish lbs, single (outside of family and a few lifelong friends I am not great with people - shy and awkward - literally everyone I know is just learning my mother has cancer so I do not feel I cannot reach out to anyone for quite a while until her prognosis is known and an action plan is decided), besides the lymphoma not a whole lot of health problems - blood pressure has been high, but was initially told it was a side effect of chemo and after that was done it just seemed to be shrugged off until I lost my family doctor so all I have really done is go to my pharmacy with a blood pressure machine and watch as it has slowly risen over the last few months. I also have depression and have been on disability and pretty sedentary as a result, though I have never got winded from simple tasks until the last few months). I have been exposed to COPD longer than I can remember, having seen three of my grandparents, three aunts, two uncles and a bunch of great aunts and uncles progress through and die of this disease and lung cancer... so I know the horrible end this thing has, but as I said, its knowing the time frame and progression for someone in their thirties I do not know (all the family members I spoke of were between their mid-50s to 90s when diagnosed and died). I did not even know it was possible to get this, or be likely to get this in your early thirties until last summer. So that is my story, and why I am here. I look forward to getting to know some or most of you more in future - and any links, information, advise (please no "quit smoking" - I know how vital it is and am doing my best but cutting back is as much as I am capable of at the moment) I would really appreciate. I am also hopeful to find out what to expect what the diagnostics are really like, and in the future what the results mean. I wish everyone well and for all those ill, in pain, or or grieving you have my sincere thoughts and prayers. Sincerely, Michael March 12/2018
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Post by John on Mar 12, 2018 6:48:58 GMT -5
Welcome Micheal π! Just so you know. This forum is about living with COPD and making our lives more livable by sharing our experiences strength and Hope. If you look around most of your questions can be addressed. Also keep in mind that no one is going to tell you what you have to do or not do. We just share what works for us and also what didn't work for us. There are no must, but a lot of you betters. Again welcome and π
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Post by joany on Mar 12, 2018 8:39:45 GMT -5
Welcome, mdr1986 I'm impressed with how open you were with your introduction. That's a great start. Together, I'm sure we can offer necessary support - bare with us. Attachment Deleted
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Post by David on Mar 12, 2018 12:46:35 GMT -5
"Welcome Micheal"
My name is David and on behave of COPD in Canada & the World I want to extend to you a warm welcome.
You will find a lot of information here .
So look around and when you are ready please join us back at the fence".
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Post by lavishgail on Mar 12, 2018 18:30:52 GMT -5
Micheal, Its very nice to meet you. I really didn't notice you were shy until you said so. I talk and talk behind the screen, in real life I'm very shy unless I know you. Everybody here is wonderful and you will soon get to learn everyone know everyone and enjoy yourself. I have never experienced anyone having any kind of negativity toward another in this group. We all feel like family and love each other, it's so nice that you joined, don't be afraid to come to the fence one up from here and have a cup of coffee with us or tea and tell us about your day or what your day's going to be like or what you did anything just say hi, I'm Gail and I have a rare lung disease they're looking into now I was told I had emphysema, COPD, lupus pneumonitis, now they're telling me they think I have ild inflammation on lung disease, which they told me they are looking more toward fibrosis. I'm an oxygen but not 24/7. Some days for me are better than other and vice a versa. I'm Glad You Came welcome welcome welcome and don't forget to pop by the fence and say your friend, Gail. πππ―β₯οΈπ€ΉββοΈ
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Post by barb7330 on Mar 12, 2018 20:59:10 GMT -5
Michael... Glad you have found our COPD family...There is lots of good info here...There are no stupid questions so anything you want to know go ahead and ask. Anyway hope you have a good evening.
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Post by jarca on Mar 14, 2018 20:32:51 GMT -5
Glad you found us. I had many questions on how to live with this disease and still do 8 years later. I can really relate to you not wanting to be lectured about smoking.....I was so sick of every sickness, even bad back being blamed on smoking that it just made me smoke more out of rebellion. (i did chose to quit later, but it was on my time & terms not others ---in fact i didn't tell a soul when i did quit becausei didn't want all the 'helpful hints' on HOW to do it & if i failed I didn't want to feel like a failure. So smoking is your business, we are here to deal with our COPD (whether Bronchitis or Emphysema type as COPD is just an 'umbrella term' for 2 different diseases)----there are a few of us here that also have other lung disease to (I have both obstructive disease (copd)---mine is emphysema type so I hope you have found a place to be comfortable. and 'restrictive' disease (ILD= interstitial lung disease & pulmonary fibrosis). Glad you are seeing a pulm when you can get in. There are so many lung diseases that a pulm will be able to run bloodwork for immune type ones & give you tests like EEG to rule out (or find) pulmonary hypertension. an HRCT scan to really see inside the lungs & what is going on (it was HRCT that found my ILD/PF 2 years after just being treated for COPD by 'regular dr') also PFT a lung function test can reveal so many things that can be causing your breathing to be bad (it wasn't until i had "in chamber PFT" that read my DLCO (not measured on spirometry lung function test) that finally answered my question WHY i couldn't breath without supplemental 02 (many people with COPD don't need 02) (DLCO is the reading that showed my 02 didn't pass from my lungs into my blood stream correctly-hence me needing supplemental 02) I'm sure thats more info than you are looking for at this time, but it is also information I didn't get for 1st 2 years being treated by general practitioner dr that i could have understood more & been doing more (when i get right dx i can then learn & care for myself better) I hope we see & hear a lot more from you! W-e-l-c-o-m-e again!!!!
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Post by jade on Mar 15, 2018 6:00:45 GMT -5
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