Talking about Life Here - Part II

Sue is one of Mike's favorite caregivers. She tells him the truth and helps him make decisions. She understands his learning disabilities and presents things in a way that he can understand them. He respects and adores her. I think she has a lot of respect for him also and treats him that way.

Mike explained to Sue, "I really don't think I want a transplant. I don't. I'm much more stressed constantly when I'm thinking about it and after talking with a bunch of people and you too and hearing that I won't be struggling for air and will be comfortable... I think, you know, that's not a bad way to go. I'll still come do IVs for 2-3 weeks in the hospital - maybe not all in the hospital but I'm still up for this. I don't have any issues with that at all."

But Mike also wanted to know where he was at. He feels like sometimes when he comes in and gets a new resident or something they kind of freak and get all up in his stuff and say stuff like, "You need to make a decision on transplant right now because you're really bad!" Then Mike starts asking questions (who wouldn't) and he gets answers like, "Oh, you could have years." Mike knows he doesn't have another 10 years. "Let's get real," he says. "But I don't think I'm going to die in 6 months either."

Sue very professionally explained to Mike that she has one other patient who is as sick as Mike. They are about the same age and neither one wants a transplant as treatment for their CF. She explained that if Mike would have continued where he was and not come in for treatment and not choose to do anything but be comfortable, he wouldn't make it very long. "At 18% lung capacity, if you choose not to get treated with antibiotics, I feel that your life will be short. I'm talking like weeks. But because you choose to be treated, through antibiotics and airway clearance, you can percolate on for a while. I just can't guarantee that it will ever get better than this. So this is life as you know it. Coming in frequently. Us kind of figuring out outpatient plans, KWIM? But if you get influenza or something like that that could basically knock you down. That could be life threatening to you."

She told him it will depend on how aggressive he wants to be with all of this. He can't wait too long to come in once he feels poorly. She said they can keep things stable. He has very good muscle mass and is in fairly good shape outside of his CF. She said pulmonary rehab may help. Mike shared that he has a brother who is 75 going through rehab right now and they take walks together. (I would love a picture of that if anyone can get me one, readers). That's something to look at when he is cooped up in the winter.

Sue spent some time going over the benefits of a transplant with Mike. The good, the bad and the ugly. Mike confirmed that he doesn't want one. He thinks his body is telling him it wouldn't be that great. He knows his sinus infections could re-infect his new lungs because he will never get rid of the germs from there. She agreed that could happen. She told him most CF patients do really well with transplant. Sue will never push anyone one way or another. She wants to be sure she is giving her patients information so they can make good decisions.

Sue wanted to be sure that Mike and others know that he is not giving up because he isn't choosing transplant. "You're not losing the battle. You're just choosing the battle you are fighting. So if we're talking antibiotics for infection that's out of our control, at a certain level there isn't going to be anything else that we can do. It isn't going to be YOU saying I don't want to do this anymore, it's your body saying we're not doing it anymore. Your body just won't be up for it because .... to be honest I never feel like you guys know how sick you are. You don't. You're walking around with 18% lung function. That's barely compatible with like, life. KWIM? How much lower can you go? You know? Not too much. You're probably the lowest guy and one other that I have right now. So 18 is getting low. We will do whatever we can to help you do the things you want to do. But don't ever feel bad about being like I'm not into this anymore. Because I'm doing this for you. You're not doing this for me. I'm doing it to help you do the things you want to do but you're the one living this not me. You're choosing the battle you are fighting. Are we going to battle the infection or are we just going to treat the symptoms at some point and let the infection do what it wants. None of us is getting out of here alive. There's a 100% mortality rate amongst all of us. It's the living that counts and your attitude in doing that."

I had so much peace leaving that appointment. Mike has choices. It is a blessing that he continues to have choices. Yes, doors are closing but there is still so much to be thankful for and Mike chooses to be thankful. He is at peace with the battles he chooses to fight.

I hope this hasn't made you sad. Mike is at peace. He has hope and I hope you do too.

There are some take aways here. It wouldn't be good for Mike to catch the flu or a cold. Please be careful if you will be around him. Smoke is really bad - maybe worse than a virus in many respects. If you aren't able to stop smoking around Mike please don't ask him to participate.

I want to share something with you from scripture, I hope you don't mind.
Do you remember how Moses lead the children of Israel out of slavery and into the promised land? They spent many years wandering in the dessert. This particular account along their journey seems appropriate to share here:

Exodus 17: 8-13
The Amalekites came and attacked the Israelites at Rephidim. Moses said to Joshua, "Choose some of our men and go out to fight the Amalekites. Tomorrow I will stand on top of the hill with the staff of God in my hands."

So Joshua fought the Amalekites as Moses had ordered, and Moses, Aaron and Hur went to the top of the hill. As long as Moses held up his hands, the Israelites were winning, but whenever he lowered his hands, the Amalekites were winning. When Moses' hands grew tired, they (Aaron and Hur) took a stone and put it under him and he sat on it. Aaron and Hur held his hands up -- one on one side, one on the other -- so that his hands remained steady till sunset. So Joshua overcame the Amalekite army with the sword.

Exodus 17:15-16
Moses built an altar and called it The Lord is my Banner. He said, "For hands were lifted up to the throne of the Lord. The Lord will be at war against the Amalekites from generation to generation."

I think Mike needs an Aaron and a Hur.
Could you get him a chair? Could you help Mike hold up his hands? This CF battle wages on but the war is not over.

I'm not angry anymore. The anger stemmed from frustration. Frustration of not knowing how I could help. It's gone because I know what I can do. I can help Mike hold up his hands until he's done all the things he wants to do. Until his hands and body tell him we're done. Then I'll take his hands and hold them....I'll hold them until Jesus comes and takes them from me and leads him to be with Him. It's all good people. It's all good. Peace.

Blessings to you.
Love, love, love