Trying to find my words. I know they are here somewhere.

I am in my sixth week of P90X. My strength is building. I am getting definition I have never had. With most CF folks, if you know or not, it is hard to build muscle.

I did a glucose intolerant study in my early 20’s, and the test concluded that in order to build muscle one needs sugar to combine with one’s own amino acids. CFer’s have a harder time in taking and keeping anything, depending on how well your enzymes work and are working for you. Without sugar, muscle lags.

I have worked out for countless hours in my life, and I should have much more muscle mass than I have. I have never wanted to be buff, but have always wanted to be in shape, and feel strong not weak: “Ich bin stark, nicht schwach” ; I am strong not weak. A phrase I have remembered since high school.

Sheila and I were talking recently to try and really understand in the most basic term what in the world is CF? Sometimes I think I have really down, and then some crazy chemist or biologist comes along and I am like what?

In its simplest terms: it is a condition of the cells that make-up the lungs, digestive tract, and skin. It really isn’t a “lung disease”, because it affects so much more. Basically, there is too much salt on the outside of my cells, specifically. There are many mutations, which mean many variations. Therefore, when particles fly inside your nose or lungs and make their way down into your lungs you cough them up. Non-cfers have moisture (sodium) to get it up and out. In my lungs, it is like a big snow storm in a terrible car jam. The particles (the cars) sit in my salt (the snow). My airway clearance brings moisture in through my nebulizer and then my vest shakes me like a bulldozer coming through to clear it out the particles. Ideally it clears it all out, hard to tell since I don’t live inside my lungs, and my little airways are like a dead-end street; it is hard to turn around and get them out.

Same thing with my digestive tract. I apparently – so I have been told – have enzymes to digest my food, but when they try and get out and do their job, the salt slams them in their tracks. Then, my skin has three times as much salt that someone without CF, which makes it dangerous in the summertime, too much salt and electrolytes lost too quickly is dangerous. CF patients are prone to heat strokes because of this. I have unfortunately have been close or at least passing out. Humidity and me, not so much.

Water and salt doesn’t seem like such a big deal, right?

Something interesting that has come into my life recently. Sheila has a client who has CF. Her client said that she had a lung disease, which is what I say to steer away from the dreaded, confusing term: cystic fibrosis. It just sounds awful.

Sheila asked her if she had cystic fibrosis, as bells were ringing in her head. She replied, “Yes.” And so it took off from there . . .

She is around 40 years old. She has had a double lung transplant about 12 years ago; one from her uncle and another from a family friend. Her body accepted both, one genetic and one not – a miracle. Two different lungs, two different donors and one not genetically linked. She feels totally blessed, obviously.

I don’t know what people know of how a body “accepts” an organ, but it is interlaced with many complications, because originally once the organ is placed in you, normally your body registers it has a foreign agent and builds antibodies to resist it. That is why patients have to be on autoimmune suppressants to hammer down their immune system to a level that is begins to accept it. This is crucial, because you are also accepting possible other foreign agents that can cause an infection anywhere in the body. There are critical mile markers – obviously every day, week, in the beginning is crucial; but each mile marker, 3-month, 6-month, and then I believe after the 12-month marker you have achieved an extrodinary thing. But, the tricky situation is that your body can reject the organ at any time. You can go along and do everything “right” and then the organ decides to divorce your body. I have been told lungs are one of the most difficult compared to a liver, pancreas, alike.

So in order to keep having your body hopefully accept you and your foreign agent organ as One, you have to be on immunosuppressive drugs the rest of your life. You also has to be on prednisone for the rest of their life, which eats your bones overtime, and puts a lot of stress on your kidneys and other organs. It is all a balance. A shift. When one organ, body part is harmed or stressed the others pick up the slack. Two new lungs, two different donor’s, for 12 years – amazing!

Sheila is going to put us in contact, but probably just through email at least for a while. I don’t know what is going on with her, specifically; and she doesn’t know with me. I don’t have the dreaded b. cepacia, as far as I know; but she has good, fresh lungs. She doesn’t need any of my bugs, and she might carry some bugs I maybe shouldn’t have.

There are miracles; searching for beauty in the complicated. Always have to believe and keep on chugging . . . you just never know . . . Keep your head up, keep your eyes open, allow yourself to love, give and receive all of life’s gifts and you never know what miracles lie your way.