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PFT
Aug 3, 2009 18:02:06 GMT -5
Post by Deleted on Aug 3, 2009 18:02:06 GMT -5
Paul, Keep this in mind, Your not dying of copd, your living with it, and yes you can live, mabey not be 100% but the percent you can be should be filled with some joy and above all some peace. Look you already made some new friends!!
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PFT
Aug 3, 2009 18:07:47 GMT -5
Post by Deleted on Aug 3, 2009 18:07:47 GMT -5
Yes paul I am in the UK ... down in rainswept Devon .... where has the summer gone?
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PFT
Aug 4, 2009 5:32:52 GMT -5
Post by Paul on Aug 4, 2009 5:32:52 GMT -5
Linndie I'm really sorry to hear all that you have gone through. I'm again sat here tears and sob. So unhappy and depressed. My chest is so tight. It was fine up untill a few days ago when I picked up a chest infection. I am terrfified about the ct scan nect Monday. I am terrfied about my low fev1. I don't want to die. It's impossible with my fev1 that even with normal lung decline that I can reach 50. I am so scared..... I cannot face up to living with sob 24/7 and ending up on 02 fighting for breath. No matter how much I take care of myself. I cannot prevent this from happening. I'm so tempted to get out to the clinic in Switzerland that I mentioned in a previous post. They have a 100% success rate in dealing with this type of problem.
Paul
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PFT
Aug 4, 2009 5:42:36 GMT -5
Post by Paul on Aug 4, 2009 5:42:36 GMT -5
Rjb I have been awake most of the night, thinking about when you wrote about a 200 ML loss, I calculated the approx fev1/fvc and that % drop does equate to around 150 mls plus minimum. thats 5 years worth of normal loss in a year. You should try and get into Cornwall for that double figure bass. I hear that the sea fishing is really good their.
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PFT
Aug 4, 2009 6:18:42 GMT -5
Post by Deleted on Aug 4, 2009 6:18:42 GMT -5
I am fairly confident I have not actually lost 200ml in a year paul ... I reckon next time I have a blow it wont show a big loss. The nurse did not seem very concerned ... its only office spirometry not the full pft one.
I dont understand at all why you think its impossible for you to reach 50 years with your numbers.
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PFT
Aug 4, 2009 6:24:44 GMT -5
Post by Bubbles 1 on Aug 4, 2009 6:24:44 GMT -5
:)Hi Paul, I know what you mean about breathlessness. I spent 3 years on oxygen and in a wheelchair until 2001 and now I get around fine without them!! Exercise is the answer. Whatever you can do is fine. You said you walk to town without difficulty so count your blessings young man. You may live to be 100. I was told to say my goodbyes in 1995 and I am still here. Attitude is everything!!! You have to get help possibly with some counseling to assist you to dwell on the positive side of your life. Every day is wonderful if you can accept those things we cannot change. Twenty years from now you can look back and rejoice over your accomplishment and the achievement in medical science which will do everything to keep you well. I was told I would not survive past 40 and I am 62 and kicking!!!!
Best of luck
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PFT
Aug 4, 2009 6:38:25 GMT -5
Post by Paul on Aug 4, 2009 6:38:25 GMT -5
www.nhsdirect.nhs.uk/article.aspx?SectionId=1&Name=WeatherWatchThats what our NHS says. Also the fletcher and Peto lung decline graph, shows terrible results/future from 50% down. I don't look ill, I felt fine breathing wise before I had the chest infection. I've gone from being able to walk a couple of miles or so last week, to being so short on breath this week. My fev1 was fine in 2005. 4 years on its been a loss of 500 ml a year.
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PFT
Aug 4, 2009 6:46:23 GMT -5
Post by Paul on Aug 4, 2009 6:46:23 GMT -5
Hi Bubbles thankyou for your reply. I could walk to town up untill Saturday, then I picked up a chest infection. I have antibiotics and prednisolone for a week. 30mg preds a day. Now I am getting so short on breath. I hope once the infection clears that I will no longer be sob. Its just over 4 months now since the dx, I am still as depressed as I was back when I was told in March. I dont understand the highlighted part in one of my previous posts here. About the upper limit of asthmatic response. I just cannot face upto the day that I end up on 02 and not being able to get out and about. Do you mind me asking please what your fev1 is.
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PFT
Aug 4, 2009 6:52:43 GMT -5
Post by Deleted on Aug 4, 2009 6:52:43 GMT -5
Paul,
I woke up today very, very short of breath, I have a runny nose and feel like i'm coming down with a cold. I am going to take some cold medicine and hopefully it will help. Attitude is the key, stop worrying about reaching the age 50, when you reach 50 you will still worry. I think you need to talk to someone and mabey you need an antidepressant? Noone knows how long we will live, you could get hit by a bus, or get the swine flu, fall and break your neck. No one gets out of this life alive, and untill i take my last breath i am determined to fight, and live and find something that makes me happy, and above all count my blessings. No one here seems to have the words you want to hear, because your not listening. Good Luck
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PFT
Aug 4, 2009 6:56:15 GMT -5
Post by Paul on Aug 4, 2009 6:56:15 GMT -5
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PFT
Aug 4, 2009 7:20:44 GMT -5
Post by Deleted on Aug 4, 2009 7:20:44 GMT -5
COPD is also life-limiting. In mild cases of the condition, 75% of patients will live for 5 years after being diagnosed, but this drops sharply to just 27% when the condition is severe.
So the above is the paragraph you are talking about paul. I have to say the imformation in it is pretty useless. The trouble with those statistics ( as is the trouble with most statistics) is the lack of information. For instance it says that 75% of mild cases live for 5 years ... ok ... to start with it should say that 75% of mild cases live for AT LEAST 5 years. But an even bigger problem with that statistic is that no ages are mentioned. The average age of diagnosis for COPD is I believe 67 years in the uk .... so then you can see that it is not at all surprising that 25% of people with mild copd will die within 5 years , but what it does not say is that not far off that percentage of people without copd would die within 5 years anyway. So you see you have to be very carefull with statistics because unless they contain all the relevent information ( which they rarely do ) they are very misleading.
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PFT
Aug 4, 2009 7:29:08 GMT -5
Post by Paul on Aug 4, 2009 7:29:08 GMT -5
Richard How long after stopping smoking did you notice a improvement in your health. ?
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PFT
Aug 4, 2009 7:38:48 GMT -5
Post by Deleted on Aug 4, 2009 7:38:48 GMT -5
I stopped coughing within weeks of stopping.
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PFT
Aug 4, 2009 11:29:03 GMT -5
Post by Paul on Aug 4, 2009 11:29:03 GMT -5
will somebody pleaseeeeeeeeeeeeeeeeeeeee translate this. It still says a 10 year mortality rate for 95% of people. I dont want to be dead at 52. I had the details sent to me via email.
The overall prognosis for a patient with COPD depends on the severity of lung disease and whether the patient continues to smoke. An FEV1 (forced expiratory volume after 1 second) greater than 50% predicted carries a very good prognosis, with the survival of these patients being only slightly less than patients without COPD. Patients with an FEV1 less than 0.75 L (very severe obstruction, less than 30% predicted), have a 1-year mortality rate of 30% and a 10-year mortality rate of 95%. At any level of lung impairment, prognosis improves when the patient quits smoking.
I still dont know if my fev1 is 53% or the 60- 66 % after inhalor use.
I still dont know what it means by the upper limit of asthmatic repsonse.
I'm shaking like a leaf, my hands wont stop trembling. My hearts going so fast its unreal.
Please somebody......................................... HELP ME...............
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PFT
Aug 4, 2009 12:20:11 GMT -5
Post by Blossom/Jackie W. on Aug 4, 2009 12:20:11 GMT -5
Paul; we're not Dr's. I don't know who "feeds you" info but I'll tell you one thing; I'd question the source. The fact that so many people are alive here, and e'where, and have been living with COPD for many years, is a testament to that.
Everyone has made an effort here to address your questions and your concerns; just as we did before.
We too have questions and concerns.
Your recent Q.... re your FEV 1; is based on "Pre" which says to me you have a reversible component. Your numbers may even be better becasue so much effects a PFT or spirometry; right down to your own effort in performing the test. Seems to me though you may have mentioned earlier that you hadn't had a breathing test with a bronchodilator.
In light of your strong concerns and feelings, I urge you get in touch with your Dr. They know your case and situation and are in a better position to help you than we are able.
This thread has now gone beyond it's useful/ helpful purpose and intent and is being closed.
Admin.
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