New To The Group

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

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

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.