There's a lot going on right now. So much information to sort through and process. Once again, I have turned to my blog to be able to update those we love and those who know and love Mike. That's it. No drama. This blog thing is all about living with CF.
Mike is having a hard time talking. He had a couple friends stop by today. He said talking made him tired. He said I should post so that everyone could get the same information at the same time and then he wouldn't have to try and talk so much. If he were to try and explain it all himself he would never have enough air. I don't think I would either. We are blessed with a VERY large family. I can see that you have all been checking in so I will do my best to recap his appointment here.
When Mike first gets to clinic he does PFTs. You saw the results posted yesterday. FEV1 18%. Then he has his vitals taken. It was notable that his heart rate was 129 while resting. No wonder he is so tired. His heart thinks it is running a non-stop marathon 24/7. When asked which is more troublesome he said the shortness of breath versus the coughing. His doc seemed surprised at that. He said his chest was tight and that he was having a hard time getting it to expand. The nasal stuff was better since they put him on Claritin.
The Doc/Nurse Practitioner (we'll call her Sue) said she would have Mike do a six minute walk today and then check it again before he goes home to see if there is a difference. This shows where his oxygen is at while exerting. They did the test and he needed 3 liters of oxygen to complete the test. About what he uses when he sleeps she noted. They will check this again before he goes home.
Sue asked if he was using his pain medicine. She said the reason she asks is because pain medicine suppresses the cough and helps with shortness of breath.
We talked about hospice care and palliative care and she explained what those mean. To back up just a moment, I had called the clinic earlier in the week to ask what our options were. This is all getting pretty overwhelming and we may need some help I told her (Cindy). Mike would like to spend more time at home but his regimen is so intense it is hard to handle alone.
Here is what Sue said:
care is doing all the things we’re still doing but also being more aggressive
with your symptoms. Maybe with this pain is morphine a better option for you
versus this pain medicine. Most people are like, well the pain medicine helps
me but I also want to make sure I’m not cloudy. I’m not sleeping all the time –
that’s not perfect either. So we still want to function but I just want to feel
better. So what medicine is out there to help me with my symptoms? So that’s
what a lot of palliative care approaches will do.
Hospice does let us continue IVs on a lot of people. But there are some
things they would want to limit. Things like for example something we should
talk about this admission. You come in and what if you get worse while you are
here. Do you want me to put a breathing tube down you and be on a ventilator?
Is that something you want?
Mike: I don’t know.
Sue: Right. But those are things to talk about.
Mom: He wants to know what that would mean. What does that look like?
Sue: Right, what does that look like? And to be
honest, it doesn’t look good. You know what I mean. I think that, to put a
breathing tube on someone with 18% lung function, the chances of you coming off
the ventilator are very slim. If it is something like when you got intubated
over night because of the blood or whatever. I mean even intubating you for
that small moment was risky business.
And the reason that is…the ventilator…your lungs like the ventilator a whole
lot better than they like you. Because the vent gives your lungs some good
breathes and also then your body can relax because it doesn’t have to work so
hard. Then all of sudden you pull that breathing tube and you are struggling.
When you have chronic pneumonia….you get better, you come back, you get better,
you come back, you have secretions . . . that situation is not going to change.
You know what I mean? So then we end up with Mike VanDeurzen on a ventilator
and then we’re going to look at your parents and ask them, “What do you want us
to do.” The options at that point would be pull it or you are going to be
sedated because no one can be awake at that point unless you are going to pull
it. So what we would do is wean you off the ventilator with lots of morphine
and you wouldn’t wake up again. And that’s that.
The other option is to put a tracheotomy right here (points), wake you up and
move the breathing tube from here to here, but I can’t guarantee that you will ever
leave this hospital. And you’ll likely go to a ventilator facility where you
can be taken care of. Because I can’t send you home with a ventilator. I just
feel like knowing you that’s not what you want.
So when patients get to this sort of a point in their lives and they're
trying to decide what the plan is
1. We’ve done the
transplant eval which is one road. A transplant isn’t for you and it isn’t for
everybody. It’s a personal decision.
2. Then we go to another option which is doing what we
are doing, but I would say no breathing tube. Because I will lengthen your life
with a breathing tube but I’m not going to change any quality. I’m lengthening
your life while you are sedated. And making your mom and dad make the decisions about
you. It’s not going to be you making decisions because you’ll never be awake
enough to do that.
So I tell patients I really discourage a breathing tube at this point
in the game unless we are going full court press to transplant. If you are
saying yes, I want a transplant, then I will put a breathing tube in you and wait
for the transplant to come. But if that’s not the road we are traveling then a
breathing tube is not the way to go.
We can make you comfortable without the breathing tube and the end will be the same. Right?
Sue went on to explain that to keep him alert and comfortable they can use a bipap mask to give a lot of extra pressure without putting a breathing tube down. She explained that is what an end with Cystic Fibrosis would look like. A lot of CF patients and their families think that they will be struggling for air because that's kind of how life has been to a certain point. But the end really is that carbon dioxide levels get too high. And when that happens you get sleepy and you fall asleep and you don't wake up again. Which is how it should be. Sue said they never let patients struggle.
Sue went on to say that the thing with Mike, is that he rallies. He comes in and gets antibiotics and then gets better. It just doesn't last very long. The drugs still work for Mike but they don't for all patients.
I was hoping to finish this tonight but it is getting late and I am getting tired. I think I will need to finish tomorrow. Sorry about that guys. I'll try and do it in the morning. We received so much information and it took me a while to process it all down on paper. I knew it would benefit everyone to hear it. Then we went to Gage Michael Kratz's birthday party! The best grandson in the world is turning 11 on Tuesday. The boys had such a good time.
I'll be back with more tomorrow. Thanks for checking in. Mike is resting comfortably tonight. Peace.
Blessings to you.
I don't have to tell you how to live . . .you teach me that on a daily basis. I love you. I admire your courage and strength. Thanks for being so amazing. I miss you and I want you to know I'm right here if you need me. I'm just a phone call and short drive away. Please let me know if you need anything. Moms love to help but we don't want to be over bearing so we wait to be asked. . . please ask. Did I mention I love you? I do.
David is a stink. But you knew that. We still love him. I won't bring him down this time. He's a cute little stink.
Richie felt badly because he forgot to take your bag to the car before he left for his friends when you were getting ready to go to the hospital. Teenagers are forgetful. You were too. I wasn't. I was always a mom. K. Love you. Night!