End Stage CF

So I haven't been blogging for a long time. So many reasons, so little time to explain. But it is time once again to blog. I said I would do my best to keep folks updated through this blog and things have changed significantly in the past few months so it is time for an update.

As the title above suggests Mike is in end-stage CF. I think the technical jargon says that you have an FEV1 of lower than 30%. Mike has been there for a while. So what's different? Well the lows keep getting lower and the highs aren't quite as high. Mike entered the hospital this past time with an FEV1 of 22%. The time before that it was 18% and the time before that it was 17%. He continues to be in the hospital for 14 day stays. After a two week admission he hasn't bounced back to 30% or over for several months.

Mike can feel a difference. I can see a difference. But it is hard to explain to others. I thought I would show you some clips to see if we can explain it a little better.

Some days end-stage CF looks like this. This picture was taken on May 3rd:

A couple days after Mike got out of the hospital.

The following video clips were taken just a few weeks later on May 18th.



I went into Mike's room to tell him I had spoken with the doctor on call and that it was OK that we head to the hospital. He struggles when he sleeps. He uses 2-3 liters of oxygen for sleeping. As I woke him up to tell him he groped around under the blankets. He had started his 6 a.m. IV and forgotten to unhook. I turned the video back on. He was half asleep and didn't realize I was filming until the end. It looks like this:



So why did Mike feel it was important to show you these videos? Because he wants you to know he isn't dying. Mike is living. I hope you can see that. Mike LIVES each day the best that he can. Sometimes that is on a motorcycle and sometimes that is tethered to oxygen tubing and feeding tubes. He's doing the best that he can and he chooses to continue to fight this disease that has a nasty grip on him.

Mike feels badly when he can't do a lot and he has to say no to people. He just wants you to understand this isn't his choice. Sometimes he is well enough to be out and about and just a few days later it is hard to leave the house.

Mikes routine lately is in the hospital for 10-18 day, out for 2 - 3 weeks and then back in again. Sometimes he needs home IVs to be able to stay out the full 2 - 3 weeks.

Mike isn't dying. This could go on for a very long time. Yes, even years. We'll explain more in the coming days. We appreciate your understanding. We appreciate your prayers and support. Your encouragement means so much to all of us. More to come.

Blessings to you. Love, love, love.