I;m 61yrs old was diagnosed 14yrs ago with COPD with FEV1 at 24%. In 2002 was sent to U of M for transplant consideration,but was denied because of heart issues. Have been very active and be in pulmonaey for 14yrs. FEV1 is now at 18% and things are getting tough. In summer I still tour on my Harley,but not will not get to many overnights because I don't know how I'll be from one day to the next. I have really noticed my energy level drop tis last year and my exercise routines are very difficult,and have been blessed to have been able to function as well as i have, pulmonary Dr always says no one else like me lol.My introduction to all who live with this trying illness. Mike
Hi Mike, from mikeymaus99 another michael 66]. explain to a 4yr COPD what is` U of M` AND` FEV.`Is to do with a spirometer.? You were lucky to be offered but sadly refused through ur ticker 'forgive the pun but heartbreaking` 14 years gives me hope. are u or were u a smoker, if no more date of cessation ? i`m not ur doctor but my bike was yamaha 650. and in Krefeld i know personally ALL THE HARLEY CLUB. KIT =KEEP IN TOUCH. yahoo mikeymaus99. you give me hope thought i had three yrs !
univercity of manchester ?
Wow Mike I am very impressed you can still do so much with such a low lung function. You must be very fit! I am sorry you were turned away for a transplant because of heart issues. Were they caused by your copd?
You might need to adapt your exercise routines a bit, don't forget you shouldn't exercise to the level where you are too breathless to talk but only where you are too breathless to sing. I am sure you know about the Borg levels.
Anyway nice to meet you and welcome to the site. You are so positive and an inspiration to all of us who are living with this awful disease. x
Oh forgot to mention there is another great lung site called the British Lung Foundation which I am also a member of. I don't know whether you are in the UK or not but there are many member of it who live overseas. Could be worth a google if you are interested. x
Hello Mike
Glad to meet you.
Sounds as though you love to be active and travel...I always envied motorbike riders, having only once had the experience of having travelled on a several hundred mile trip, many , many years back and thought it was great.
It would be quite a blow to have been refused the transplant and leaves one in a difficult situation and much to deal with I am sure. Many things to ponder on....
Day trips on your bike must be very energizing for you and give you comfort.
It sounds as though you are in close contact with your physician.
How are you managing at home? Do you have assistance there to deal with the everyday care of it and yourself? Having inhome help, is a good way to save energy. When breathing becomes challenging, saving energy becomes more important.
Home care even to help with bathing/ dressing etc (regardless of having a spouse or other in the home), meals etc is important and allows us to use our energy for the things we want to do (like day trips!! )
How are you on using oxygen Mike? Is it regularly 24 hours or less frequent?
Keep in touch, would be good to hear from you.
We are all travelling down the same road Mike..some just a bit behind you.
Lill
Welcome Mike, thanks for say hi and introducing yourself.
I'm not here every day just from time to time, winter months are always more difficult I think, the cold, the damp, the wet (although I guess you could be living where its warm all year)
Its great you can still tour on the Harley during summer months, but it is difficulty when away from home, for me its having to take all the meds with me each time that becomes a bit of a hassle. There was a time I could just travel with my toothbrush but not any more.
So sorry you were denied consideration for lung transplant Mike and that you also have cardiac issues and for any disappointment this may have caused you.
Both the lungs and heart if something is not right will cause tiredness as you probably already know.
I wonder if you need to take a course of extra supplements Mike if your energy is low, food supplement drink, supergreens etc. Hopefully your energy levels have not dropped because you have a chest infection or worse still pneumonia. If you are breathing ok all well and good, but if that has worsened too and you have other symptoms perhaps best to check with your Dr, so he can check things out, although I suspect you already know what to do having been diagnosed 14 years ago and have emergency pack at home to use as needed if its a matter of a lung infection.
I hope its not a lung infection or your heart mike and I hope you will soon be feeling a lot better real soon.
Best wishes V
Michael127 - FEV is an abbreviation for Forced Expiry Volume.
U of M - I am guessing means University of Medicine or University of Michigan a place where testing for lung transplant is considered or denied.
U of M is the University of Michigan. FEV1 is forced expiry volume. Never let the Dr. tell you how much time you have as they only go by what their numbers tell them. I was a smoker but haven't smoked in over 15yrs. I try to stay positive and do what they don't expect me to do and only take one day at at time. PT is your best friend..
Hi hypercat, Heart issues were pretty much caused by the same unhealthy life style that caused the COPD. I had two stints inserted in 2012 and it did give a little boost. I'm still strong considering the challenge,but at 18% and the lungs having severe entrapment its pretty hard to do what I need to do to sustain. I want everyone to know you can still have a quality of life with severe COPD but only YOU can determine to what quality.
Also,Im in the states but will be sure to check out the BLF, Thank You for the info and stay well. Mike
Hi Lill, Yes I still do all the things myself, as my wife still works full time. The Motorcycle has really inspired me to keep on keeping on as my passion is riding. We are not Bikers were riders who love to travel and visit new places..I have a small trailer to pull behind the bike to carry portable oxygen concentrator and tanks. I can still walk short distances like into restaurants and such,annd once on the bike I'm good as llong as I don't have to start backing it up (900 lbs) so you learn where to and how to park. If I'm at PT or doing house chores or yard work it's 6 or 8 liters. I have a great pulmonologist and I pretty much know whats going on and if I start having a exacerbation I up my predisone and start a antibiotic.Thanks for your reply. Mike
Hi Vee, You are correct it was the University of Michigan. I also have to deal with the cold weather and like you it's extremely difficult. I find putting a mask on helps and as I progress i see my self using it more than previous years,but I still go out and shovel snow and snowblow my driveway with a Etank strapped onto my back with 8 liters flowing annd have to stop often,but am still doing what they tell me i can't or shouldn't be. No lung infection just a severe exacerbation and we all know how scary they can be. Stay Well Vee2. Mike
Also Vee,I did the supplements for many years and wasn't getting any real benefit as all my blood work was good and my wallet was getting thin buying all of those. I find a good snack with fruit and a piece of whole wheat bread with peanut butter works for me lol. Mike
Hi mike/BEARDY damn sad i was hoiping we could meat/meet as we have so much in common. planning a 10 week break Goa/india in future. did u sus email no ? Sod giving up smoking but thinking about it . alcohol drink more than a few drops ,lifes principle maybe `stateside boots on` uk smile on face as a happy bunnyetc.you got the 99and previous. Drs & respirtorynurses we have in uk NEVER tell the patient nff a couple of inhalers and away youngo. the numbers ie FEV 1 mean b=gger all to me. tell me eggsactly what HD MODEL PLEASE. What was/is ur work/ trade. me master europen skyscraper/olympic swimming pool apart... BUILDER. NEED TO THINK RE TRAVELING EUROPE ME LITTLE THC PROBLEM BUT STILL ALLOWED US LIVED IN MORCCO MANY YEARS SPEAKING THAT AND 5 MORE
Hi hypercat hun, impressive guy eh, having a bike you dont really expect mike to do many squat thrusts or press ups, althought his weigh t has not been mentioned or asked. the same ur a lady HOW YOUNG/OLD ARE YOU ? It certainly seems just scrolling down the US system offers wot in the UK dont get stints + lung transplant. my only SADNESS HAVING ALL THE C`S. COPD ,CANDIDA AND CANCER THAT I DON1T LIVE IN AMERICA. but on the bright side lennon, marley and now bowie didn`t live UK ???
this mike/ beardy has created the interest since i started 1 year ago. it shows the difference in the health systems. STOP STOP THEY PAY INSURANCE, WE DON`T I think beardymike is in all our hearts but wepay 00000000000000000 Towards our health system unless a private insurance is involved . WHO TRUSTS INSURANCE COMPANYS CHECK WITH DOMINIC LITTLEWOOD DAILY ON BBC1
They are renouned to take ur premium and build even bigger MORE SCAM OFFICES this is uk TRUST THE NHS
Hi Vee hun, are you COPD as well or just a good person ? love quizzes but my guess Manchesher is how many thousands of miles/kilometres WRONG. you possibly hve read my 1 st mail to beardymike from me,if he1s haad COPD FOR 14YRS IT GIVES ALL HOPE but he`s NOT uk totatally different air saturation. THIS GUY IS THE BEST BUT 7000MILES HE STILL GIVES ME BUY A HARLEYMOTOR BIKE MAYBE HOPE. GREAT GUY B NOT MUCH HELP TO UK SUFFERS SO SAD
Hi Mike, I assume you are from Michigan. I am too. I am 57 and was diagnosed just over a year ago with COPD/Emphysema, FEV 27%, no oxygen yet. Doc says he will refer me for a transplant if I can quit smoking for 1 year. I'm having a hell of a time totally quitting. I go for a couple months then fall off the wagon for a bit. But I keep trying... My husband has an 06 Street Glide. I LOVE the bike and being able to go riding. Such freedom from all that bothers you. Glad to hear from someone with similar to my numbers. Gives me hope I can live a bit longer - also encourages me to not smoke so I can maybe get that transplant someday. Thank you Mike. Take care and hang in there...
Hi Mike,
i read your post with interest. My husband has severe copd and today had his check up. His FEV1 and FVC have both dropped. We were not given the results as a percentage but as decimal points. We are in the UK . Do you, or does anyone else know how to convert them to percentages? I tried the BLF site but couldn't find it there either. Also what oxygen level are you on normally ?( I see that you turn it up to 9 when under pressure). I am just trying to ascertain where we are in comparison because it really helps to hear of people at a similar stage coping so well. Thanks
Hello Sonsy
I believe the conversion would be as such;
.7 = 70% for example.