The end of this journey is far closer than I wish it was. It is all in my hands now. Do I have the will to keep going or not is the only question now.
I accept it and will try with everything I have, everything I can do. I will not stop moving and trying.
I dont know what the results were from the echocardio last month at Notre Dame. I thought I might have the results yesterday but they are not in yet. Notre Dame might or might not call me back over it. Does not really matter though. Next spring is the time I might get through that window and get new lungs. Not before.
My weight is dangerously low. We started dealing with that yesterday.
I am having some kind of exacerbation, an infection somewhere, and am on the avelox and pred now. The drs say I handle my action plan well and they loaded my scripts up again. If I am still in this state in a few days or if it gets worse I call and we try to figure out what to do.
Nicole and I made sure we are on the same page regarding resuscitation, intubation and all those unpleasant things. There is an urgency now about seeing a notary or a lawyer and give Nicole my share of the house, give her power of attorney over my affairs. Money we don't have but somebody just wont get paid.
I need to do this ASAP. Not asking for any here just writing as it is.
I had a bad nights sleep. I woke up knowing I had to write and get out of the state of mind I was visiting. I am ok. I knew everything already. Its a good thing to have it up front and easy to see. Work to live. Don't do the work and die very very quickly. Work hard and if you are lucky you might stay alive long enough for the miracle.
I am ready to fight for my life with everything I have. I am fighting.
I need a few more days I think to digest this and get refocused.
Love
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