A decision made 4 weeks into the program

Not sure if this makes any sense to you, but we both look forward to the physio every morning, even though it's a bit of a drive and exercising isn't at the top of our "to do list".  But, we've come to know a lot of people who are all in the same situation and each have their own story to share.

At this point Pete can tell that the exercise is allowing more oxygen to flow through his muscles and in turn giving him a bit more energy to walk, but his lung function still remains at 18% and he's not really able to do much more physically.

This has caused Pete to make the decision to remain on "status 0" for a little bit longer, taking it a month at a time and get a bit more mileage out of his "own lungs".........this was also recommended by the doctors.   This decision wasn't made lightly but comes from an increased awareness of what it will be like living with transplanted lungs.  Like everything, there are pro's and con's to consider. 

Pete will automatically remain in the Lung Transplant Program and will have regular visits at the "pre-lung transplant" clinic and can then be activated when ever he feels it's the right time.  The 6 week program does not have to be repeated, but it's obvious that the exercise has to continue at home.  Depending on how long Pete is willing to wait, some of the major testing may have to be repeated.

Some statistics for patients with a lung transplant:
- 10% will likely pass away within 1 year from organ rejection
- 50% are likely to develop skin cancer by 5 years from the anti rejection drugs taken
- 75% only reach 10 years and then it's a goal of maybe 12 years.
- your immune system is kept very low to help the body from rejecting your new lungs and this is why it's very important not to be around people with colds and the hardest part.......the grand kids who so often have colds.  That's a pretty tall order!  We'd likely have masks on hand.
 - people with COPD don't live longer with new lungs, but their quality of life changes

One of the tests that Pete had done earlier during the 1 week of testing, showed a 36mm nodule attached to the right side of his thyroid.  He has had a biopsy done, but we don't have the results back from that yet.  They say these are mostly nothing to worry about.

All in all, this has somewhat altered our planning in that we are not stuck close to home while we stay on status O - inactive,  instead of active - status 1.  This also takes some of the pressure off from knowing we aren't waiting for "that phone call".  We look to God alone for all the strength and patience that Pete and we his family need.

I'll do a quick post when we have the results of the biopsy and if anything else changes.

Thanks for listening and take care!