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Post by Paul on Aug 4, 2009 13:18:25 GMT -5
Just to say sorry to all of you who have read my recent messages. I know you all have questions yourself. I don't want to be a pain to anyone. I've read so much, I have scared myself so badly. I have spoken to my Dr before and all he said was don't worry let us do the worrying. Easier said than done. I will not post any more about my fears. I did not intend posting so much. I probably did not post my question that started the huge thread in the way I was trying to find out something. Hope you all have a great week. And once again, I am sorry. Paul
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Post by Deleted on Aug 4, 2009 17:17:03 GMT -5
Paul,
You have nothing to be sorry for. Were just trying to help you by showing you how we deal with this copd crap. Please do not go away again, we will try our best to help you we just want you to help your self.
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Post by Paul on Aug 6, 2009 8:08:00 GMT -5
Hi Linndie thanks for your reply. I'l be pleased when Mondays CT scan is over. I have to wait though about 6 weeks for the results. Once I have the results I will then decide what to do next. It's highly likely that I will take a trip to Zurich in Switzerland. I've been checking out prices for this trip. Airfare is very reasonable. I have never been to Switzerand before, but have flown over the swiss alps many times, it sure is a beautiful place.
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Post by kmckellepp on Aug 6, 2009 9:59:32 GMT -5
Paul- I am very new to this forum myself. I am 35 years old and was told I had COPD last November. I completely understand your feeling of being overwhelmed and consumed with it. I too googled it everyday while at work. I have also gone through my right lung collapsing once and my left collapsing twice, and two lungs surgeries. I have been dealing with lung issues since my early 20's. I went through the depression over it... However.. I realized I was not living my life by being consumed with it all day long. It affected my children, my spouse, my entire family and friends. There was not one part of my life that wasn't affected by my feelings. So I picked myself up.. and took it one day at a time. I listen to my doctors. I listen to the knowledge people give me that are going through it. (this forum) They have great advise and are experienced in dealing with the issues. To be honest the people on this forum are more active then I am and I am 35. And its not because I can't.. its because I haven't. My kids and I are making schedules for walks, for time in the backyard... we found a new trail by my house that goes around the lake.. We have already been talking of how to keep active this winter. From what I am learning it is how well you take care of yourself. Its all up to you how you want COPD to affect your life. I am not saying there will not be days of struggling.. Your mind and heart are powerful things. Don't under estimate them. I too have found it fustrating that most of the information out there refers to people in there 60's and 70's... but it is what it is. Heck... alot of my friends are still smokers and they sound worse then I do and they don't see the doctor to find out whats going on. These are the ones that find out in there early 60's ... I have had two PFT's done. The first was in November of 2008. My FEV1 in November was 49 and my most recent in June was 46. My DLCO dropped from 22.47 to 17.49 in just 8 months... My pulmonogist says that our goal is to keep it the same... because it will not get better. But we can keep it stable. That is my goal. Maybe I am just babbling.. but I want you to know that your life is not over just because of this. Heck if I can make it through my lungs collapsing and having lung surgeries and having COPD and raising 2 children.... I can do just about anything.... You need to start telling yourself all the things you are still able to do.. and start doing them! Enjoy life.......
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Post by Paul on Aug 6, 2009 11:08:19 GMT -5
Hi kmckellepp Thanks for your reply. You truly sound amazing. My dx affected me so badly. I don't see anyone anymore, My neighbours kid said hi to me earlier, of cause I said hi back, then he said your not the same anymore, and that once I was a fun loving, always happy person. I dont know what the DCLO test is that you mentioned.
All I know is on my last pft, my fev1 was 53%. and the gas exhange was 96%. But I don't know what that one was. May of been the one where you breath in and out for three mins, then hold breath, for 10 seconds, then breath out as much air as possible.
I'm so scared about what Mondays CTs scan will find, But I have to wait a further 5 weeks or so, before I see my pulmo again. The coming month I don't know if I can get through.
I do not understand the drops in fev1 either, if normal is 30 mil per year, and stopping smoking returns it to that, then the drop should be no more that 1 a year of the fev1. The fletcher graph shows it holding steady for many years. But it appears in real life that is no so. I would freak so badly if I had gone from 49 to 46 in just 8 months, as that would be at least 100ml.
I just wish I was at least half as strong as you. I'm pleased though that your not alone and that you have family around you.
I had a short spell earlier, maybe 30 mins, where I felt fine, then suddenly it hit home again, that half my lungs are beyond repair. Its nearly 5 months and I am not imroving mind wise at all. Hence I wasnt to get out to Switzerland as there is a place in Zurich which I know can help me so much.
Well I'll stop know, before I annoy folk.
P
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Post by kmckellepp on Aug 6, 2009 15:09:23 GMT -5
Paul- Trust me ... not all my days are postive and I too am not always strong. I have my days in which I am struggling... but I can't let this overcome my life. I am sure you are still a happy, fun loving person.. you just need to let that person out. I believe the numbers from our PFT's are important.. but at the same time I need to go off how I feel. If I keep myself healthy and active and take care of my body I am doing all I can at that point. I am a true believer and this may sound stupid.. but God only gives us what we can handle.. everything happens for a reason. I feel there is a reason I have had to deal with the things I have in my life. They are all not happy... and somethings I will never forget and they have affected my life alot.. but there is some sort of reason behind all of it. COPD is just another issue I will deal with. I like to think I am teaching my children that even though things get tough and scary.. you can still keep going. I can't teach them to just give up when things get hard... You stated earlier you had a 30 min spell where you felt fine.. that is a great step right there. Day by day can get easier. I guess the first step is accepting the fact we have COPD. Then we have our freak out stage where we are depressed, scared, angry.... and more. Then comes the part where knowledge steps in. Learn what you can. Learn how to take care of yourself physically and mentally. Then you will be prepared for the bumps in the road that will come. Anyways.. I want you to know you are a strong person.. if you were not.. you would not be on this forum trying to gain knowledge. Take care of yourself and keep me posted on how you are doing.
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Post by Paul on Aug 6, 2009 15:50:59 GMT -5
Hi kmckellepp
Regarding accepting copd. I was dx just over 4 months ago, by the asthma nurse at my Dr's NOW its not 100% confirmed.
I may have copd... CT scan Monday,,, 5 weeks later I see my pulmo.
The letter says I may have copd. Or it could just be asthma damage etc.
Either way, it is a worry having a fev1 of a 124 year old. ? But I still have the worry of what do I have.
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Post by Blossom/Jackie W. on Aug 8, 2009 6:50:05 GMT -5
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Post by zar on Aug 11, 2009 5:40:36 GMT -5
Hi kmckellepp Regarding accepting copd. I was dx just over 4 months ago, by the asthma nurse at my Dr's NOW its not 100% confirmed. I may have copd... CT scan Monday,,, 5 weeks later I see my pulmo. The letter says I may have copd. Or it could just be asthma damage etc. Either way, it is a worry having a fev1 of a 124 year old. ? But I still have the worry of what do I have. Ho my goodness Paul,you do soung like a dying man. Because I think I am a expert on nearly dying, 3 times twice from TB and once once from Maleria,both of which can take you straight inside the gates (or the other way)with in a week,No going pass GO and collecting $200,as it not a game. I have stable COPD(do you?)which I have had now +-14yrs. My FEV1which is checked every 18 months is 30%. I am not on O2,take the minimum of drugs Resprimat 2.5 mgs,and Symbicort 20mgs per day. Drive my own car or catch a bus to the supermarket or where ever.Carry my groceres up towo flights of stairs. Itravel to S
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Post by zar on Aug 11, 2009 6:05:18 GMT -5
Sorry pressed the wrong button.
I travel to South Africa ever year,17 hours including the drive to the airport,where I stay 2000ft above sea level,for 2 week and then 2 weeks on the south coast. weather same as CA. Yes some people think copd is the end of their life,but when a they find out ALL the answers,they learn to LIVE with it.
Quote, " It's highly likely that I will take a trip to Zurich in Switzerland". I have never been to Canada,but have been in Switzerland (not bad). But with a FEV1 like yours and the snow you get in Canada,the ski slops are just as good.
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Post by Paul on Aug 12, 2009 5:46:40 GMT -5
Not been around for a little while, had my CT scan, and CT scans do not lie, unfortunately. Well it is time for me to move on. Just awaiting for details to come from ""Dignitas"" in Zurich Switzerland. Then I will be getting the first available flight their. It's quite a expenses trip. But hey why not. This ones really gonna change me. I know it will do me a world of good. Cheers
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Post by zar on Aug 12, 2009 10:06:53 GMT -5
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Post by Paul on Aug 12, 2009 11:42:20 GMT -5
Zar I'm not going to write much, because I don't want to get banned. And I know I need to move on.
I had a phone call today from the hospital, although on Monday the official result was emphasema. I was today told it may not be. Further examination of the scan is being done. The lung damage is evenly spread over both lungs and I have been told its 50/50 to if its emphsema. its either emphsema or its multiple tumours. So I'm totaly ****ed either way, basically its either emphsema or small cell lung cancer. White cell count in blood is realy high. And apparently been so since at least March. "Inflamortory markers"
No wonder I am stressed
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Post by Deleted on Aug 12, 2009 12:56:41 GMT -5
Paul, I just want to tell you "SUCK IT UP AND TAKE IT LIKE A MAN"
I am a 70 year old women and have COPD and severe severe emphysema an no way would I put my family or loved ones through what you so often threaten. I try my best to do what my doctors and RT tell me to do to keep as good as I can for as long as I can and IMO that is what you should be doing also.
I'm sending Blessings to you and I do hope you can find the right answers that you so desperately need. Give up and jumping off the earth is not the answer.
Bless you Bettynv
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Post by Paul on Aug 12, 2009 13:08:06 GMT -5
Betty thankyou for what you wrote and for sending blessings. I sure need them. That was realy kind of you. If I had family then, my mind set maybe different. It's just me. I do not have any family. They are all long gone. thanks again for what you wrote
Paul
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Post by Deleted on Aug 12, 2009 13:20:01 GMT -5
Paul, I am sorry I was so rough on you, but darn it, even if you have no family, there are many people out there that are far worse off than you that you could befriend and give help and ever love to. Go down to where some of the homeless sleep on the streets, some with little kids and babies. Old men that look like they lost their last hope, maybe you are that hope, did you ever think about that? Spend more time doing for others and less time giving up on yourself and the benefit will be just as much yours as theirs.
Bless you over and over again Betty
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Post by Paul on Aug 12, 2009 13:29:36 GMT -5
Betty all my life I have lead a good honest kind caring life. And no you were not harsh. You said what you needed/wanted to say. So there is nothing to say sorry for. I'm just so ***** off, one minute they say asthma damage, then copd, then emphsema for sure, then today it may not be emphasema but tumours accross both of my lungs. I've sure lost all hope. And now a wait of 6 weeks ish ? to find out if its the big e, or the big c. Realy cannot keep going like this.
Paul
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Post by justme2727 on Aug 12, 2009 19:26:42 GMT -5
Hi Paul ,altho I am a member I don't often post. I have followed some of your posts and I have to comment. No matter your age or your Dx its yours you can control it or it you. You decide "Happiness is a decision". Life is for living ,none of us is promised clear sailing! Don't waste another day grab on to whats yours to have! Ask to see a therapist and work on being happy instead of sitting on the computer reading about death. Sorry if I sound harsh. I can't sit and watch you waste what could be some of your best years!! Please keep us imformed of your decisions Donna
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Post by Blossom/Jackie W. on Aug 12, 2009 20:31:17 GMT -5
We have all read; and expressed; and offered our love, support and well wishes over numerous posts over a couple of months and though we all certainly understand the fears, worries and concerns that can accompany diagnosis;
Everything has been said and resaid and to allow this thread to continue would truly serve no useful purpose to anyone.
This thread and this topic is now closed.
Jackie
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