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PFT
Jul 26, 2009 11:44:22 GMT -5
Post by Paul on Jul 26, 2009 11:44:22 GMT -5
Hi everyone. It's been a while since I posted here. I left due to being so depressed and down. I was diagnosed in March and have been a nervous wreck ever since. All you guys have been so helpful in the past and I know I am struggling to take things in. I only see negitive words like, fatal, terminal, sufocating to death etc.
I had a PFT at the hospital on last Friday and I do not fully undertstand everything.
I also did a test where you breath in and out for 3 mins, then hold breath for 10 seconds then breath out hard. The loops on the computer seemed to go to about the same height on each breath on that test and I didn't struggle to do it.
My FEV1 was 53. I did not do a after ventolin test, that will be done next time, as I had one in March at my Dr's surgery and it went up to 66%.
The consultant at the hospital is also going to arrange a cat scan ? in the next few weeks.
I also had a xray again, 3rd since March and the consultant showed it to me and also one from 2005. It looked identical to the one in 2005, although I was dx @ the Dr's not untill March of this year. The Consultant told me, there are no black holes, marks on the xray and she is doubting it is copd at the moment, this is why she wants the cat scan doing. She also says no signs of any cancers.
What the consultant did say was, that she thinks its more asthma damage.
Now if it is asthma damage does that make a difference to if it was copd
I am still terrified as my lungs are only 53% fev1 on friday around 2 liters and I think my FVC was around 4 liters 96%
But the consultant said that due to a half liter increase in March at my Dr's after using ventolin that she does think its more asthma than copd. Or maybe mainly asthma damage with a little copd.
I'm confused. My lungs are only half working. I still walk alot, a mile in 20 mins, I walked into town the other day which is about 2 miles with no problems.
If it is mainly asthma damage will that make much difference in the long term.
Does the reversabilty really mean things are better than I keep thinking. I still keep thinking I have no more than 5 years.
What do you really think the long term outlook is. ?? I know you can't look into the future, but for a 42 year old reasonably healthy person, can I really expect to get old without gasping for air and struggling to even walk to the bathroom.
Can I expect a drop each year in fev1, or will it most likely stay stable for many years as I am young.
The thought of ending up so breathless terrfies me. And again all the negatives like terminal, fatal, progressive I cannot get out of my mind. I dont want to be terminally ill at my age.
Paul
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PFT
Jul 26, 2009 19:46:15 GMT -5
Post by Blossom/Jackie W. on Jul 26, 2009 19:46:15 GMT -5
Paul; Good to see you post. I hope you'be been doing better! I moved this topic over here becasue it's better suited and more folks are apt to see your thread and perhaps respond. Some of what you've said; we (you and the group here) addressed before but I also know (and remember) what it's like when you're first diagnosed, trying to confront, and learn about COPD. So; let's start at the top again shall we? Do you have a copy of your latest PFT's or Spirometry results? Normally the pre and post bronchodilator (as you referred to as Ventolin) is done during the test (even in a clinic) but not seperately;(as in not different days) perhaps you didn't realize they were in fact doing that test? If you do have a copy; perhaps you could post it here for feedback? Also; who is the consultant you mention? An assistant, asthma educator or PA of some sort? BTW; I'm also trying to remember... what country are you in? Finally Paul; please.... Get off the 5 year thing.... you've a long way to go yet O.K.? Please. That's an old cliche that unfortunately some (uneducated) in the medical field still use. Like I said; let's back up here and start at the top shall we?
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PFT
Jul 26, 2009 21:13:04 GMT -5
Post by John on Jul 26, 2009 21:13:04 GMT -5
Hi Paul Good to see your still here . I do believe that it's very possible that you will die from something else other than copd .My fev1 is about half of what yours is & I plan on at least another 25 years min I'm now 61. So 61 + 25 =86
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PFT
Jul 27, 2009 8:23:05 GMT -5
Post by Paul on Jul 27, 2009 8:23:05 GMT -5
Hi I am awaiting a copy of the report through the post. The person I saw after the hospital PFT test is a consultant. The consultant told me that she will see me again after the cat?? scan. And that because of the higher than expected reversabilty test in march that that will be repeated next time. I am still terrified that at some point in the future I will end up unable to get my breath properly even at rest. So many websites say this. It's like I know my future, where someone without a lung condition does not have any idea of what will happen to them. That I suppose is why I continue to dwell and have so many fears. I am still trying to find out if normal decline is my fev1 les 3 to 5 every year. If it is that then I can expect to have a 30% fev1 in around 3 years and 6 months. If its 30 ml on average from my 2 litre fev1 then maybe 44% before ventolin in 10 years time. I know I have no cystal ball. But I am still young, although prior to the DX I felt old. I know realise that I should have another 30 years plus in me, which I just do not see as possible. I keep thinking I will either suffocate to death or my heart will explode, (Cor Pormeral) You asked where I was (The UK) You asked about the Consultant. Well if it had just been a DR I would not of been happy. You cannot get any better or higher than a consultant. I have copied and Pasted below what a consultant is In most other parts of the world all medical practitioners, physicians and surgeons alike, are referred to as ‘Dr’ whereas in the UK surgeons are usually referred to as Mr, Miss or Mrs. This is because, from the Middle Ages physicians had to embark on formal university training to gain possession of a degree in medicine before they could enter practice. The possession of this degree, a doctorate, entitled them to the title of ‘Doctor of Medicine’ or Doctor.
The training of surgeons until the mid-19th century was different. They did not have to go to university to gain a degree; instead they usually served on apprenticeship to a surgeon. Afterwards they took an examination. In London, after 1745, this was conducted by the Surgeons’ Company and after 1800 by The Royal College of Surgeons. If successful they were awarded a diploma, not a degree, therefore they were unable to call themselves ‘Doctor’, and stayed instead with the title ‘Mr’.
Outside London and the largest cities the surgeon served an apprenticeship like many other tradesmen, but did not necessarily take any examination. Today all medical practitioners, whether physicians or surgeons have to undertake training at medical school to obtain a qualifying degree. Thereafter a further period of postgraduate study and training through junior posts is required before full consultant surgeon status is achieved. Thus the tradition of a surgeon being referred to as ‘Mr/Miss/Mrs’ has continued, meaning that in effect a person starts as ‘Mr/Miss/Mrs’, becomes a ‘Dr’ and then goes back to being a ‘Mr’; ‘Miss’ or ‘Mrs’ again! Source(s): www.rcseng.ac.uk/patient_informat…Paul
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PFT
Jul 27, 2009 10:12:42 GMT -5
Post by Blossom/Jackie W. on Jul 27, 2009 10:12:42 GMT -5
Hmmmm; you learn something new everyday.... and I just did. TY
Paul; I think your long term outlook is excellent. You exercise; you don't smoke etc BUT; I will tell you one thing..... you're gonna worry or scare yourself to death.
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PFT
Jul 30, 2009 11:21:00 GMT -5
Post by Paul on Jul 30, 2009 11:21:00 GMT -5
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PFT
Jul 30, 2009 11:24:33 GMT -5
Post by Paul on Jul 30, 2009 11:24:33 GMT -5
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PFT
Jul 30, 2009 12:47:39 GMT -5
Post by Blossom/Jackie W. on Jul 30, 2009 12:47:39 GMT -5
Paul my dear..... from looking at the two posts you supplied (though they were the summaries not the actual PFT's.... NOT that they're needed ).......... My friend; they're not telling you anything different than what we've been saying to you here. And; it's GREAT news for you! Now; hate to say it BUT; nah; I won't. However........ You should be doing cartwheels in relief in many ways! Congratulations!!!!
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PFT
Jul 30, 2009 16:19:59 GMT -5
Post by i9xmwxb on Jul 30, 2009 16:19:59 GMT -5
Hi as you can see at the moment I am not sure if I hav asthma damage or copd. Either way, my lung functions not great though for my age. Will it make a long term difference if its not copd. ? The fetcher graph i25.tinypic.com/2n08w9s.jpgstill scares me as it shows me gasping for breath in my 50s. What are my real chances of slowing down/halting lung decline. Or do I have to accept that I will at some point be fighting for breath. Paul
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PFT
Jul 31, 2009 7:30:56 GMT -5
Post by Paul on Jul 31, 2009 7:30:56 GMT -5
Blossom I didnt see you last post when I posted my last. Just going to inform ya, that I am gonna sue ya, cus I broke my neck and back when I tried a cartwheel. Sure I am still scared. I just want at least my 3 score and 10, without ending up so breathless that I am no good to anyone Paul
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PFT
Jul 31, 2009 8:06:56 GMT -5
Post by Blossom/Jackie W. on Jul 31, 2009 8:06:56 GMT -5
I know you're scared Paul BUT you are gonna be O.K. I swear my dear that if you were within arm's reach I'd act like a mother and slap you upside the head! ;D
What I also read in that repport of yours, and your Dr's are aware of it since he mentioned it, is that you've been doing a lot of "surfing" and "reading" on the Internet. Please bear in mind that not e'thing that gets put up on the web is coming from "informed" individuals or sources.
Good to see you're exercising BTW (re: the Cartwhhels!) ;D
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PFT
Jul 31, 2009 12:30:29 GMT -5
Post by John on Jul 31, 2009 12:30:29 GMT -5
Hi Paul! Stop by the fence any time ,it's always good to "see" you It's time to get back living .
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PFT
Jul 31, 2009 14:45:08 GMT -5
Post by the bear on Jul 31, 2009 14:45:08 GMT -5
Stess and worry probably kill more people than COPD does. Hi Paul great to see you back again. Don't worry about numbers and stuff, how you feel is the important thing. Remember when surfing for info out there in cyberspace there is a lot of junk out there too. Our own site has been monitored for quite a while and we can proudly display the HON code for Honesty on Net. Check also Efforts short for Emphysema Foundation for Our Right to Survive. This is an active group in the United States. I too have searched all over but to me this is home.
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PFT
Jul 31, 2009 15:31:25 GMT -5
Post by Paul on Jul 31, 2009 15:31:25 GMT -5
Thanks Bear I just cannot still get out of this mess I am in, my heads so wrapped up in that I will probably end up so short on breath. There is no guarantee that my lung decline will slow by never smoking again. I don't go out anymore, apart from for a walk, or shopping. Never see anyone, only use the internet to look up fev1's etc. Still cry most days, have nightmares everynight, I see my neighbour walk past each day who is in his 80s and I know I will not be able to make that age. I used to love going out, having fun, laughing and joking. I have no quality of life at all. It all went in March. Even if its not copd, see above tinypic urls, my lungs are that of a 124 yr old, (lung calculator) I so loved life, but I fear every moment I am awake that the day will soon be here, when I am so short on breath, that I will not even be able to walk from my living room to my bathroom.
Paul
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PFT
Aug 1, 2009 7:42:37 GMT -5
Post by the bear on Aug 1, 2009 7:42:37 GMT -5
You got things all wrong Paul. Life is for the living. A a human being you need to mix and mingle with fellow humans that are alive and living the best they can. If you think you are the only one that has problems go to your local hospital and just sit and watch the people that come and go. So, you and only you can take your life back and constantly thinking of death is not a life at all. You, my friend, have to make up your mind whether you want to be with the living or the alternative. Take it from me the grass is a lot greener on this side.
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PFT
Aug 2, 2009 10:38:34 GMT -5
Post by Paul on Aug 2, 2009 10:38:34 GMT -5
Hi Bear Thanks for your reply, I do so want to get back to being my normal crazy fun loving self. Who loved live to the full. I know it is only me who can do this. But the fear of what will probably happen is driving me to dispair. I cannot see anything other than being so short on breath as time goes by. My mind thought is that even if I do reach a good age, that this worry will be on my mind every single day of my life. I just cannot shake off the thought of gasping 24/7 at some point in my future. Now there is a chance I may not have copd, just asthma damage. Even if its not copd, I do have a real low lung function. I know I am not the only one with problems, but this came as a huge shock, the thing I find difficult to take in, is in general, I dont feel to bad at the moment, I would never of known unless I had not had that random spiromtery test in March. It knowing that even with normal lung decline, I will get to the point when I so get short on breath and worse. Today I can walk a couple of miles, maybe in a year I will not be able to walk 20 ft. I know I should try and enjoy the now. I just cannot. Because my future in a way as been put on the table, and nothing can stop even gradual lung decline, If I was 70s or 80s I would not worry about a 50% ish lung function, it would be more than enough to get me through life. But at 42 years of age, It does not give me a chance to reach cashing my pension in. I am having the ct scan next week, that I also fear, what if it picks up even more damage, Paul
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PFT
Aug 2, 2009 12:01:12 GMT -5
Post by the bear on Aug 2, 2009 12:01:12 GMT -5
Paul; Returning to your normal crazy fun loving self will probably ensure that you live to be a ripe old age. Why worry about what may happen?? Would you die happier if you got hit by a bus tomorrow?? As far as I know no one has left the world as we know it alive. We are all mortal. We do the best we can, and have to play with the hand we are dealt. As I said before worry and stress probably kill a lot more than lung diseases.
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PFT
Aug 3, 2009 10:17:34 GMT -5
Post by Paul on Aug 3, 2009 10:17:34 GMT -5
Hi Bear I used to love fishing, I would take a weeks vacation and stay at the side of a lake carp fishing, living in a small tent, it was so fantastic to get away from the hassles of real life. I used to love going to places in Wales, getting out in the Mountains of Snowdonia, my life consisted of work and very little play, but when I played I enjoyed it so much.
I took a walk the other day, it started raining, I've picked up a chest infection, I am now on anitbiotics and steroids for it.
Everything I loved to do before, is just going to be impossible to ever do again.
At the moment Im sob whilst sitting, I hope that will go once the chest infection clears. Your right in what you said "Life is for living" But living is not sat indoors everytime its raining, cold etc, its not when you have to stop doing everything you loved to do, such as fishing vacations etc.
I don't want to be sat indoors everyday its cold or raining. Having to do that is no life at all. And if I have to restrict myself and stop doing everything I love doing, then mayby if the big red bus hits me then I would be happier, infact so much happier. At least then I would not be living in so much boredom and FEAR
Paul
A portion of this post (addition) has beem modified/deleted.
Admin.
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PFT
Aug 3, 2009 12:06:06 GMT -5
Post by Deleted on Aug 3, 2009 12:06:06 GMT -5
I like to fish ... I go carp fishing and sea fishing ... I prefer the sea fishing. The carp fishing is easy ... just get my gear out the boot and carry it 50 yards on the flat then sit down all day in a nice chair. The sea fishing is harder ... got a longer walk over sand and rocks with my gear, but when I get puffed out I stop and then go on again when I feel like it. If its raining I wear waterproof clothes, if its cold I wear warm clothes. I reckon breathing clean sea air is better than staying indoors. As my lung function falls I will find it harder which means I will have to push harder but I still intend to do it because I love my fishing. I am still fairly new to COPD but I know that I will always try to live my life as best I can.
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PFT
Aug 3, 2009 13:14:27 GMT -5
Post by Paul on Aug 3, 2009 13:14:27 GMT -5
Thanks for your reply RFB. I so wish I could continue like I used to, living life to the full. The other day, I went for a short walk, it started raining, and I became so short on breath the next day, picking up a chest infection. I was given antibiotics and prednisolone by the out of hours Dr. I never used to get sob after getting wet and a chest infection. Even up to the DX, everything now since the dx seems to be going crazy in my life. I read that prednisolone will cause bone damage.
Everyone heres been so positive to me, Blossom, the Bear, you, and John and others.
But you hit the nail on the head when you say "As Lung Function Falls"
I know everyones falls, but someone of 80 whos never had lung problems still has a fev1 of around 65%.
Thats more than mine at 42 years of age.
The chest/lung specialist says I may not have copd. It may be asthma damage, then says she would hope my fev1 decline returns to normal as in the fletcher graph. That still will not get me past my 50s.
its about 4 months and 9 days now since finding out I had a problem, its only in this time that I have become depressed, scared etc. Not one day goes by without me being so scared of what will happen as my reminding lung function declines.
I had so many plans for the future, I fear so much the suffering and gasping, knowing that I will become bed ridden.
I was going to move to the USA after Christmas, my big plan was to spend around 10 to 12 years in the USA, then buy a motorhome and tour the USA and Canada over a few years, then return to the UK and buy a Motorhome with my pension that I worked so hard to pay into and then spend a few years touring Europe. I will not be able to do any of this. My lifes turned upside down.
I know there are many worse off than me, but time goes so fast, it will not be long till I catch up with those on 02. I fear nothing more than gasping for air.
This will happen when my lungs decline a little more. Everything I read tells me once I fall below 50% I hit the disabling part of lung decline which will get so much worse. I cant help but look at the "Numbers" another 3% to go,
I'm trying to find out about reversability, the increase in fev1 into the mid 60% arounf 65%. Not sure how that works. Also what my specialist means in the letter I recieved
Quote: previous reversabilty testing with salbutamol 400mcg from 15th May. Suggested an improvement of 400mls, the FEV1 improving from 2.07 to 2.47 litres. [glow=red,2,300]This response is at the upper limit of an asthmatic response.[/glow]The part I have bolded I do not fully understand. I have spent hours googling it and cannot find a answer. I know were all different and nobody knows what life will chuck our way, but knowing I have half lung function so early in life means if a bus does not run me over, and cor pormeral heart faliure does not get me, then I will end up gasping for breath. Watching my dads last 2 years was terrible, ok he was 77, but from the start of his problems to his passing was no more than 7 years. This is in line with the 5 year death sentence I have read about on hundreds of sites. I'm sorry you have copd, I have no idea what fev1 you are, but to be able to do all the things you said you do must mean you have a much higher fev1. I so hope it stays high for you to enjoy your life without getting short on breath.
Paul
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PFT
Aug 3, 2009 15:46:31 GMT -5
Post by Deleted on Aug 3, 2009 15:46:31 GMT -5
Paul,
While your worrying about what tomorrow might bring, your missing today, a day you can breath and walk . We will all support you and pick you up when your down, mabey you need some Xanax? It's for aniexty and worrry/stress. We are happy you returned here and I would like you to tell us something in your life that brings you joy and happiness, married? kids? dog? hobby? We have to have some good along with the worry and being sick. (((( Hugs)))) Linndie
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PFT
Aug 3, 2009 15:57:39 GMT -5
Post by Deleted on Aug 3, 2009 15:57:39 GMT -5
Paul ... I am almost 53 and at my last spirometry last week I had 55% or 1.9L fev1. That is down from a year ago by 200ml. No idea why. I dont feel any different to a year ago. I doubt its accurate. Spirometry can vary. I still work doing a manual job and I dont think thats unusual for someone my age and stage. If you have around 2L and dont smoke I would have thought you have many good years ahead of you.
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PFT
Aug 3, 2009 16:25:00 GMT -5
Post by Paul on Aug 3, 2009 16:25:00 GMT -5
Linddie I cannot help worry about tomorrow. I fear so much the gagging for air that one of these tomorrows will bring. I live alone, no family. I left my G/F. That was my choice. She deserves better than me. Also any children she may have, need a Dad whos going to be able to give them 110%. They sure would not get that from a gasping for air useless waste of space.
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PFT
Aug 3, 2009 16:43:30 GMT -5
Post by Paul on Aug 3, 2009 16:43:30 GMT -5
Rfb
sorry to hear about the 200 ML loss. I'm pleased however that you do not feel any worse than last year. As you know my fev1 is 53%. 2.07 litres, and I am 42. I did not realise a person could lose 200 ML in a year. Everybody tells me to enjoy life. I just cannot. By everybody, people online. I have not seen anyone in weeks.
As for my 2 litres. If I decline at 200 ML per year, I will be at fev1 25% at 47 years of age. I wont make 50.
I just don't know what to do anymore. I've been considering a trip to a medical centre in Switzerland. The more I think about it, the more tempted I am to raise the money and get out to Switzerland as soon as possible.
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PFT
Aug 3, 2009 16:58:59 GMT -5
Post by Deleted on Aug 3, 2009 16:58:59 GMT -5
I very much doubt if I have actually lost 200ml in one year paul ... spirometry is not an exact science. You wont lose 200 a year either .... probably you will lose at normal or close to normal so with 2L you will probably live 30 plus years. In 20 years treatment will have improved greatly ... your prognosis is good.
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PFT
Aug 3, 2009 17:11:01 GMT -5
Post by Paul on Aug 3, 2009 17:11:01 GMT -5
Rfb what was your fvc and fev1 a year ago, and also last weeks. Thanks Paul
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PFT
Aug 3, 2009 17:23:08 GMT -5
Post by Deleted on Aug 3, 2009 17:23:08 GMT -5
A year ago the fev1 was about 60% , last week it was 55%, I dont know about the fvc I dont really understand anything other than the fev1. When I did the bit of spirometry where you blow all the air out slowly the nurse said it was good but I dont know if thats the fvc ..... I was just pleased that she found something good .
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PFT
Aug 3, 2009 17:27:35 GMT -5
Post by Deleted on Aug 3, 2009 17:27:35 GMT -5
I aint unduly concerned about that drop because I might have just had a bad day .... and anyway I want to catch a double figure bass before I pop me clogs and that will probably take me 20 years.
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PFT
Aug 3, 2009 17:44:08 GMT -5
Post by Paul on Aug 3, 2009 17:44:08 GMT -5
Rfb Are you in the UK?
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PFT
Aug 3, 2009 17:56:59 GMT -5
Post by Deleted on Aug 3, 2009 17:56:59 GMT -5
Dear Paul, I am so sorry about the way you feel. I have only my left lung, had my right lung remnoved in 1984, I was 34, no I have copd/asthma/e and depression. I know the gasping for ait it's called SOB ( short of breath) and when I become upset it seems my air is really bad. Sometimes I'ts so bad paul . You are a worthwhile person, I am happy you came back here. I might not have the right words but I wish I could give you a hug this second Paul. Stick around here. We all worry about tomorrow, the future ect. But we can share our emotions and fears with each other, everyone here is different, we may share the bond because of COPD, but we share the bond out of friendship and support too. Your loveable, likeable and deserve nothing but the best out of life. Your Friend Linndie
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