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Post by cassandra on Apr 6, 2013 12:08:42 GMT -5
 , My name is Cassandra and i just joined your forum yesterday as i just found out last week i have copd. It was actually my family doctor who advised me to check the forum out. I have looked at the forum and i am hoping i will become as positive as some of the other members as at the moment i am stuck on anger, I am only 39 and have a lung specialist who didn't catch a lung infection and left me to struggle with difficult breathing for nine days it was my family doctor who caught it and put me on meds and a third inhaler. I still have a lot to learn about copd and i still need to work on getting my emotions in check as i have days where all i do is cry but to be honest it is mostly anger and the fact that i feel like a burden at the moment because things are changing so quickly in my life such as no sleep constant cough but i am hoping as i look through the forum and see other members positive posts i may learn how to change the anger around to be positive myself. |
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Post by Blossom/Jackie W. on Apr 6, 2013 12:57:46 GMT -5
Cassandra; and Welcome! My name is Jackie, better know as Blossom. You've come to a very great place here.... the folks are great and have a pretty good handle on their disease usually. and; no matter how long you've lived (or just starting to live) with COPD.... we all learn new things every day! Helps to make living with better. I don't see in your profile where you're from. But; I DO have to say.... you're waaaay young for this disease and to the extent you're describing. Don't misunderstand... it sure can happen! You mentioned that your GP has diagnosed you. Did he do a breathing test by any chance? Meanwhile..... welcome! We look forward to getting to know you! One other little thing I'd like to ask/mention if you don't mind Cass; have you been tested for Alpha 1 by any chance? |
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Post by cassandra on Apr 6, 2013 13:50:22 GMT -5
Blossom, My family doctor sent me for the lung xray which showed a huge shadow from top to bottom of the lung and she sent me for the breathing test right away at Guelph General Hospital, when i had the breathing test they said there wasn't a difference in results without inhalers or with them so i was sent to the lung specialist right away. I had a very bad attack a few weeks ago i woke up in it and i just thought it was my asthma but it went on for days not being able to breath and i could not understand why i could not get it under control and this is how i ended up finding all this out so at the current moment i am on ventlion,advair, spiriva, wellburtin and co-azithromycin |
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Post by cassandra on Apr 6, 2013 13:53:31 GMT -5
sorry Blossom i missed the question about alpha 1, i do not even know what that is, the only things they have done so far is breathing test xrays and lots of blood work if that helps any? any info would be great
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Post by Blossom/Jackie W. on Apr 7, 2013 9:41:50 GMT -5
Hi Cassandra; I'm sittin here scratching my head wondering where best to start..... Firsyt of all you're doing the right thing by asking questions, seeking help (medical and otherwise) and educating yourself.
I'm only gonna "touch" on Alpha 1 briefly becasue if in fact they've done blood tests they may already have. And; you can google it if you want to know more info. Simply put it's a genetic disorder that can effect differnt areas of the body. The lungs for one...
However; I don't want to bombard you with a lot at a time and I know others will be wondering a few things as well.... so; let's go back tio the beginning a bit so that we can get a better idea of where you're at.
Back to your testing for starters for now. First off; do you have a copy by any chance of your breathing test? And/ Or; what did they (your Dr) tell you you had and what stage?
X rays are not the best type of test for COPD btw. And; I assume, since you're taking Wellburtin you're trying to quit smoking. (Not to worry.... we don't judge here) The Zithro you're on.... is it on-going or a temporary script? In other words is it like for 10 days or an on-going script continuously?
Also; please understand that some people do not show a change (of any consequence) before and after a bronchodilator on their breathing test (the Ventolin you used during your test) And for many others, it just takes longer to work... The thing that throws me though is that you said you have asthma. Were you diagnosed as asthmatic and when was that?
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Post by sandy07 on Apr 7, 2013 11:41:16 GMT -5
Do you have allergies? I'm starting to think that it was an allergy that put me in the hospital last week. The allergy season didn't used to start for me until June. So, it seems too soon for me..
It's when you said..."it went on for days not being able to breath" that made me wonder. Does the back of your nose seem plugged but open enough to breath okay? Feel as tho you need to "force" your lungs to breath? This is what my "allergy" felt like in the beginning. I don't know what asthma feels like..just COPD. But when you can't breath it doesn't matter what it is.
The one (1) thing I think it is important for you to do right now is get as big an allergy screening test as you can. My allergies have disappeared, according to the tests. They were all there a few years ago. Seems to be the steroids in Pred and/or inhalers that are wrecking the tests..... like a false negative.
There are so many more people around with allergies. It is scary. I also never realized till now that an allergy can be so bad without anyone realizing it IS an allergy.
Good luck and welcome.,
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Post by pippy on Apr 7, 2013 13:45:24 GMT -5
Cassandra you sound like did just last May and it was my family dr that found mine chest x ray didn't look good so went for a ct scan and then to specialist . All i did was cry for the first 6 mths as everything changed real fast. And my dr told me about the forum,as i was told there is so much to know and sometimes is better from ones that have it.But always check with my Dr.
Welcome Pippy Suzie
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Post by Lorraine on Apr 7, 2013 16:09:43 GMT -5
Hi & Welcome Cassandra.......... well it's touch to hear news like this for sure....... i was diagnoses 12 years ago . i am now 62....
My advice to you is fight back........... what i find very very important is to build up your immune system......... this prednisone and lots of other meds take so much goodness out of a person....... Eat foods high in potassium and magnesium........ like kellogs raisin bran cereal.(good for you) bananas , i try to eat a banana every day.... and cantaloupe . i drink tropicanna orage juice the one with pulp, you know peanut butter is also high in magnesium and has potassium ...... google stuff and get going girl. you got lots of living to do........ once you have accepted this copd , you can move forward,,,,,, and keep in mind that it will get better,,,,,, the power of positive thinking,,,,,try to relax and perhaps meditate if you can, it will help . trying to quite smoking are you? i quit years ago... !!!!!! have a game plan , when i got the urge , i use to go at the mall and walk around... sometimes i was at home and it woudl it me, and off i would go , of course not in the middle of the night.... anyways wishing you the best .Cassandra; and please tell yourself it will get better.............. keep us posted oh yes and please don't forget to drink lots of water , that is so important........
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Post by shelley on Apr 7, 2013 21:37:49 GMT -5
Hey there Cassandra and welcome to the forum. It's like a large family around here as you will quickly learn. Everyone reaches out to each other in one way or another. Guelph....  ...I'm in Acton and spend a good deal of my time in Guelph. Cassandra, there could be a lot of reasons why you've been diagnosed with COPD at 39 but you're not going to have any real answers until you have a number of tests done. As Jackie said, one question would be about your Alpha 1 status and that's just a blood test. I don't know whether your respirologist has done a full pulmonary function test (PFT) yet and if so..perhaps you could share with us the findings of the test which will be numerical; usually percentages such as FEV1 = % etc. That will let us know what stage of COPD you're dealing with. As hard as it is, try not to let yourself get all doom and gloom because that's simply not where it's at. I was diagnosed at 36 with less that 50% lung function and I'm now 58. Have raised 3 children and continue to have a very active life. I have been on oxygen since 2007 and it has slowed me down a bit but I've been known to do some things that aren't normally expected traditionally. I intend to keep right on going for a good deal of time yet. By the way Cassandra, although I was 36 when diagnosed, I did not have an Alpha 1 problem. Some of us just knock on the wrong door and no one knows why. Just for reference my lung function now, 22 years later is 23% (FEV1), so this is not usually a disease that bites you real quick. It is important to do what you can for yourself. Watch your weight and diet and most important start getting exercise every day. If any one thing can help you fight this disease and maintain your quality of life it's exercise. Needless to say, don't smoke and stay away from those who are sick. You definitely do not want to pick up any colds or flu bugs. We're all here girl. Ask away and there's always some people around to help or just relax a little bit and chat with others who are living with the same scenario as you. Things seem overwhelming right now but they will slow down. Take a few deep breaths and realize that the future is bright. |
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Post by cassandra on Apr 7, 2013 21:45:07 GMT -5
Thank You all, and sorry Blossom the lung specialist just told me it was copd show me the results of the test but i found she really didnt give much imformation it was my family doctor who said about giving more meds and it was my family doctor that told me i was fighting a lung infection and she put me on treatment of anitbotics. I have asked her to find me another lung specialist as i am not comfortable with this one i have. I had asthma for many years since i was a child and the lung doctor said the copd is from my smoking so i am quitting smoking and my husband is being really good as he is quitting with me. He has even spent the whole weekend ripping out all of the carpet in our house and installing flooring the only thing i will not do is get rid of my two german sheppards like the lung specialist told me i had to do. I see my family doctor again in two weeks for a med check to see how things are and i plan on staying there until i get the answers to all my questions because i feel if i understand this better then maybe i can deal with it a little better its the not knowing or understanding. My daughter was even upset as the lung specailist said quit smoking and you can fix this in ten years and it was the family doctor that told us no it wont fix it but it will help to slow it down
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Post by Deborah on Apr 8, 2013 8:15:05 GMT -5
Cassandra: I am so sorry to hear about your diagnosis. I was diagnosed January 2012 and I am learning so much about the disease but more importantly, how to maximize my quality of life despite COPD. You will find so much help here in these forums.
In addition to what everyone has had to say, I would also suggest that you have a look at the main copd canada site (www.copdcanada.ca) - there are some quick and easy things here about COPD, about questions to ask your doctor, what to say to family, and so on. You can also ask any questions you like and take whatever advice is offered (like Pippy says - always check with your doctor).
Two other things come to mind. The first one is whether you can access some kind of counselling. This kind of life-altering diagnosis can be really difficult and a good professional can help you get through some of the grieving.
The second - and even more important - thing is whether you can ask your doctor about referral to a pulmonary rehabilitation program. That program helped me so much. I learned about how to maximize my quality of life, I learned about the disease, how to use my medications, co-morbidities (i.e. other things that can impact COPD), and I met some other people with COPD so I didn't feel so lonely and isolated.
OK so that's my two cents worth. Welcome to the forum and I know you will make some good friends here.
Deborah
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Post by sandy07 on Apr 8, 2013 10:19:30 GMT -5
Cassandra. You can keep your dogs. It would be a good idea to bath them with unscented soap and keep them away from your face tho. If they are inside dogs, like ours have been, vacuum often. Your family and friends will love your house with no smoke in it. I'm going to guess that your FEV1 is fairly high. That's how we rate ourselves generally. It's a measurement on the Pulmonary Function Test or PFT. As long as you quit smoking, eat well, stay away from sick people (as best one can) and exercise faithfully, you should be okay with the COPD for a VERY long time. |
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Post by cassandra on Apr 8, 2013 13:05:36 GMT -5
Good Afternoon to everyone, so i have a littler update i went back to the doctor today as i finished the anibotics and im still no better the pneumonia is still present and i asked about the copd and having asthma growing up and he explained it is emphysema that they found in my testing if this helps any? I am also being referred to a new lung specialist as well which is good news so hopefully i will get the answers from this specialist. I am very thankful for all the information that everyone is giving me here.
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Post by susanny on Apr 8, 2013 21:14:59 GMT -5
Hi Cassandra! So very very nice to meet you. I wish I could take your COPD and throw it down into the center of the earth but unfortunately I can't. Do it for all of us here for sure. I was diagnosed with the disease in 2006 but I was stupid and didn't quit smoking. By late 2008 I had to take a disability retirement and in 2009 went on oxygen. It's hit me hard and I can only say that it's t he smoking that's done it to me. I am so happy to hear you have quit. I had a dr's appt today and he gave me a huge hug for staying off the dumb smokes but it's really too late for me. What would I do if I could do it over? First of all never smoked that first cigarette, but since that's too far back I'd say I'd have quit smoking that day I was told I have COPD. Next step would have been to go buy a Treadmill and hop on it and walk for at least 30 mins each day. If it was possible here I would go to Rehabilitation classes where you learn about the disease and what exercises to do and then do them. Where I live there is no rehab but I've read on here that there are many classes around Canada so ask your dr's about it. You need upper and lower body strength built up. My weight has never been an issue for me, but some people are overweight and that hinders your lung capacity for breathing. I would have avoided Prednisone like the plague as it has caused some physical problems for me, but it's also helped me to live this long so I don't totally hate it. Just wish I'd known more about it before I took it. If you're a busy person, keep busy. It's good for both physical and mental health. I miss my friends with everything I have in me. You have a wonderful husband, like I do, and be totally grateful for him and let him know every day how much he means to you. Somebody here wrote to you something about wondering how you in particular got the disease, that it's sometimes just the door you knock on. My husband grew up under horrible conditions, poor nutrition and second hand smoke galore and started smoking when just a kid, long before I did (18), yet he doesn't have any signs of COPD. Thank God because I depend on his strength to get me through the day. I couldn't live at home with out him. I don't post this to scare you or make you more depressed. I want to encourage you to grab on to life and hold on with everything you have. Do the things you need to do to stay here healthy and you'll really be ok. Come and visit with people living in all different stages of the disease and get to know us. We're a good loving bunch of people, I do think. You couldn't find better friends in the world, if I do say so myself, . TAke care, and oh, by the way, when you go to your new lung dr, ask for a copy of all the test results on you. It's free and belongs to you. Love, Sue   |
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Post by yukongal on Apr 8, 2013 21:29:56 GMT -5
Sue that was beautifully written and all so true.....Cassandra should take strength from it!!!!
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Post by barb7330 on Apr 9, 2013 6:29:00 GMT -5
Hi Cassandra...Sorry to hear you have this darn disease. I live about an hour North of Guelph and I noticed that both St. Josephs and Guelph General have pulmonary rehab programs. Wish I lived closer as we have nothing up here in the Owen Sound area.
Good breathing to you and keep us updated.
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Post by Blossom/Jackie W. on Apr 9, 2013 7:59:39 GMT -5
Great post Sue....  |
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Post by cassandra on Apr 9, 2013 12:36:53 GMT -5
Thank You all, I did some checking and i did find that they have the program at St Joe's so i am going to look into that. I am a very busy person as i have two jobs that keep me going from 8 in the morning until 1230 at night and in the winter my husband has his plowing business which i help with so i am on my feet all day except for when it snows then i am in a truck. I was wondering if this is enough exercise or should i still try to fit in walks? Any one have any idea's on sleeping issues as i can not get to sleep until 5 am not sure if this is from the inhalers? Thank You for listening to me hope everyone is doing well and has a great day!  |
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Post by cassandra on Apr 9, 2013 12:49:27 GMT -5
Also i just wanted to say that i am thankful for each and every one of you as i look forward to leaving work just to get my hands on my laptop so i can check in and talk with you all here. I am so thankful i was told about your forum. Sorry for the second post but i just had to let you all know
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Post by Deleted on Apr 9, 2013 16:40:04 GMT -5
Check with your doctor first.
However, I have a similar problem and I find that taking an antihistimine tablet just before bed makes a difference.
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, My name is Cassandra and i just joined your forum yesterday as i just found out last week i have copd. It was actually my family doctor who advised me to check the forum out. I have looked at the forum and i am hoping i will become as positive as some of the other members as at the moment i am stuck on anger, I am only 39 and have a lung specialist who didn't catch a lung infection and left me to struggle with difficult breathing for nine days it was my family doctor who caught it and put me on meds and a third inhaler. I still have a lot to learn about copd and i still need to work on getting my emotions in check as i have days where all i do is cry but to be honest it is mostly anger and the fact that i feel like a burden at the moment because things are changing so quickly in my life such as no sleep constant cough but i am hoping as i look through the forum and see other members positive posts i may learn how to change the anger around to be positive myself.
...I'm in Acton and spend a good deal of my time in Guelph.
