He Rallies!

Mike will be coming home tomorrow. His FEV1 was at 32% today. It has been a long time since he has seen those numbers. His small airways are at 9%.

His six-minute walk was great. O2 stayed at or above 97% (without oxygen).

See what happens when folks help lift up your arms?!!

Thanks to all of you for all your prayers and encouragement. We'll keep you posted. Mike is looking forward to getting out and about. Maybe even a motorcycle ride.

Praising God for his continued blessings,
Praising God for you!
Gina

Mt. Rushmore

Dear Mike,

Today is our last day in Rapid City, South Dakota. We are having a good time. Here are some pictures so you and grandma can see what we've been up to. She doesn't go on Facebook so maybe she can see them here:

I know you can relate to this picture. After a tour of a mine the boys are panning for gold. David wants to get rich so he can spend lots of money on video games.

Here we all are at our destination - Mt. Rushmore. So amazing what man can do when he puts his mind to something.

This one was taken at the Bad Lands. You know how much I like heights (NOT) so I was always behind the camera and away from the edge.

Your brothers are very happy that you got to bungee jump when you were a kid. They used this against me so they could go for a helicopter ride.

Today is my birthday and Paul took me a few blocks from the hotel to a rose garden so I could take some pictures. Flowers remind me of God's promise of heaven - beautiful. My favorite is the one on the top. So pretty.

I am thankful for this time away. It gives me time to reflect on life and ponder the things deep in my heart and mind. I'm still thinking about some of the conversations we have had. Some of the things you ponder too.

Mike, I know you know why we are here. That is huge. So many people struggle with this initial question. You know we are here to glorify God with our lives.

You wonder why God could allow you to suffer with CF. Could the answer be the same? Remember the parable of the blind man (John 9)? The disciples asked Jesus whose sin was this, his or his parents?

 ³“Neither this man nor his parents sinned,” said Jesus,
“but this happened so that the work of God might be displayed in his life. ⁴As long as it is day, we must do the work of him who sent me.”

But you struggle with this because you are not perfect. I don't think that blind man was either. None of us are. Jesus did not come for the perfect. He tells us that it is the sick who need a doctor. He came for you and for me and we are far from perfect. You doubt God's love. I have doubted God's love. Everyone has doubted God's love at some point on this journey.

People are drawn to you Mike. They see you are suffering and they admire your courage and strength. You continue to persevere because of your faith. Psalm 34:18 tells us "The Lord is near to those who have a broken heart." The Lord is near you. He hears and sees your broken heart. God doesn't ask for perfection. He asks for us. He wants you. Just the way you are. We are redeemed through the salvation granted to us by grace through the salvation that Jesus won for us. Ephesians 2:8-9 tells us "For it is by grace you have been saved through faith, and this not of yourselves; it is the gift of God, not by works, lest anyone should boast."

So remember the things you have always known. It is not about what you have done or left undone. It is all about what Jesus has done for you. You don't need to think about anything but what Jesus has given you freely through his grace - forgiveness and eternal life.

Let God's perfect peace surround you and lift you up at all times. When you are tempted fall back on His words.

I miss you. I can't wait to see you. Come home soon.

Blessings to you.

Stolen Moments

Mike is on DAY 11 of his stay at the Madison Hilton hospital. He has been very blessed this stay with lots of encouragement. Many visitors have come in person to help Mike hold up his arms through this battle. Others are strengthening him through the cards they have sent. Mike asked me to tell you thanks! It means a lot to him.

On Friday, Mike got some special visitors. Uncle David (his godfather) drove up from Tennessee and surprised him with a visit. While they were visiting 15 of the "brothers" rode in on their Harleys to steal Mike away. Kind of hard to be sneaky with a group that big but security offered them a place to park their bikes together and they were able to grab Mike and take him a few blocks away for some non-hospital food - wings - his favorite. What a treat after a week of hospital food and isolation. What very special men these are that continue to support Mike. Again, if anyone snapped a picture, I'd love to have a copy :)

After the brothers left, David and Mike were able to do some more visiting before it was time for Mike to get back to the regimen of breathing treatments, therapy, drugs, etc. Mike said he was able to discuss some things with David and that was a blessing. Angie also paid a visit. Always good to see a fellow CFer. All in all a very nice break in the middle of a long stay.

You know, for many of us, it's not easy to go visit someone in the hospital. It's not easy to write that card of encouragement. We want to....really we do. But then those insecurities creep in....the ones that say - "I'll say something dumb and probably make him feel worse."
or
"I hate hospitals, I'll wait until he comes home to visit him."
or
"This is what pastors are for....they know what to say. I don't know what to say to someone facing what he is . . ."
or
"I just don't know what to do. I'm not good at this stuff."

You know what? We've all had these thoughts - we're all human. But some will push beyond their comfort zone and insecurities of feeling like "I'm not enough" and just do it. They might not have eloquent words to say....they may say nothing at all. But they came  or sent a card  or ordered take out from a nearby restaurant and had it delivered to Mike or they messaged him on Facebook or added Mike to their Netflix account or said a silent prayer. In some way, they "showed up" and that makes a difference. It makes a difference in Mike's life. It makes a difference in this world. It makes a difference. It made Mike's day a little brighter, his load a little lighter to carry....a bright spot among so many shadows. Stolen moments that take Mike's mind off of the reality of CF even if only for a moment. That is a blessing.

God bless you for your acts of kindness!

Mike's carbon dioxide level was slightly above normal when he was admitted. His doctor's have decided that it would be good for him to get used to using the bipap machine at night. The first couple of nights were a little rough but it is getting better. On Thursday he will do PFTs again and repeat the 6 minute walk. We'll update you when we have more news.

Blessings to you!

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

No Drama Please...We're talking About Life Here

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:
Palliative 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.

Sue: 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?
Mike: 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.

P.S
Dear Mike,
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.

P.S.S.
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.

P.S.S.S
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!

6/14/14 Update

Mike was admitted to the hospital today. Stats are as follows:

FEV1 - 18%
25/75 - 3% (indicates small airways)
Weight - around 125
O2 - 88 (on room air)
BP - 119/78
HR - 129

What does all that mean? Mike is pretty sick. He did a 6 min walk test. He needed 3 liters of O2. That is about the same amount that he has needed at night for quite some time.

Mike has the best team at our clinic. He is getting excellent care. We are both so thankful for all that they continue to do for him.

I'm pretty tired but I wanted everyone to know that he is doing OK. When I left he was pretty tired and looking forward to getting some sleep. Port was accessed successfully with no issues. He is on Oxygen and that makes him more comfortable.

Mike had some pretty in depth conversations with his doctor. We will be sharing more about that tomorrow.........or I guess that would be today.

Sweet dreams Mike. Love you lots. Over 200 people stopped by the blog to see how you are doing today because you are so loved. Peace.

Blessings to you and thanks for stopping by! We appreciate your prayers and support.

P.S. Mike is in room D6/520 ..... he could use your encouragement. Thanks.

So A N G R Y

This anger is overwhelming sometimes. It just hits me so quickly. I'm fine one moment and then WHAM!

Why?

Are you a caretaker?

Are you chronically ill?

Have you experienced the anger that I'm talking about? Can you tell us about it?

When Mike told me that he was angry and very irritated I wanted to help. He said the littlest things bug him. I was really struggling with anger also. It was perplexing me. I sat down and tried to put my feelings to paper. That helped a lot.

My sister said it is an emotion and that if you don't let any emotion out it will probably come out in anger. Maybe she is right. Usually, if you are angry it is just a symptom.

It passed. Until tonight. My sister was down here. I got to focus my anger on her. And then we laughed really hard at the Father's Day present I bought my hubby. Now I'm not so angry.

Mike is too sick to be angry right now.
He is going into clinic tomorrow and probably being admitted. Hard to breathe - labored. Heart is racing. Coughing a lot. Hard to eat.

Out of the hospital on 5/30. Lungs at 27%. Weight around 130. We shall see what stats look like tomorrow.

So tonight I think the anger is focused at CF. I'm angry about the demands it is placing on Mike. But I've prayed and turned this over and the anger is much better.

I'll type more tomorrow.

Blessings to you!

P.S.
I'm angry because I can't control CF and make it stop.
I'm angry because I have bad insomnia.
I'm angry because I'm still sore from my car accident and don't move well.
I'm angry because I feel helpless to help.
I'm angry because I want to be a better mom.
I'm angry because I won't allow myself to feel any other emotion.
I'm angry because people can be so insensitive.
I'm angry because people can be mean to Mike even when he is struggling like this.
I'm angry because I want to do more.
I'm angry because I can't fix this.
I'm angry because stress makes me do crazy things.
I'm angry because I am human.
I'm angry . . .
And then God takes it away and I have peace......

9 for one last time

Yep, after this year I will no longer have a child in the single digits. I feel like I need to capture every moment. Wasn't it just a couple years ago that Katie and Mike were turning 9 and 10? My how the years pass so quickly.

And what did the little sweetie want for his birthday . . .

Yep, C A S H !

He was thrilled. He ran to the mailbox every day this week. What was really funny was when his godmother Jenni sent him a card and forgot the  c a s h. She sent that in another envelope. W H A T?! was his response, "N O money?!?  LOL, I guess he needs to learn some manners.

Thank you grandma and grandpa, Jenni, the Karst family, Mike, and Katie for giving David money for his birthday. Oh, and even brother Richie gave him some of his money! Just the right size and color that he had asked for!!!

We also got to spend some time at the trampoline park with David's best little buddy Jack. A very special day. Nope, no pictures of cake. He wanted blizzards from Dairy Queen and I didn't even take a pic, urgh!

And David's absolute favorite thing in the world to do these days . . .

Play dodge ball. He could play all day. He doesn't care how old the other people playing are :)

It was so fun to watch him.

Mike update:
Mike got out and about this weekend. He's pretty tired but he had fun. Thanks for your thoughts and prayers.

God's blessings for a wonderful week.
Love, love, love.

Transplant is a NO

This has been a much debated, much prayed about and agonized decision. Mike has chosen not to pursue transplant as an option for treatment of his Cystic Fibrosis.
 
FAQs
 
So what now? You just give up?
Absolutely NOT! Mike finds this question to be particularly troubling. He has done a lot of research about double lung transplant. He's seen the good, the bad and the ugly. He and I have both followed many people through their transplant journey. Some of these folks are close friends of Mike's. After seeing and contemplating it all, Mike doesn't feel like this is his best option given where he is on his journey.
 
Giving up? How does :

• Taking 75-100 pills a day
• Hooking up to a feeding tube at night
• Vest treatments 2 - 4 times a day
• Oxygen as needed
• Eating as much as possible every day
• Shooting yourself up with insulin several times a day
• Enduring side effects from medicines (this keeps getting worse as CF progresses)
• Enduring endless days in the hospital in near isolation
• Getting up each day and making plans - living each day to the fullest

How can anyone see this and think that Mike is giving up?
Enough said. Please don't ask him this question. Pretty please?
 
Why wouldn't you want to try and prolong your life?
There is no guarantee with transplant. You can look back in our posts and see the stats. If you want to read more about it go here.  The average life expectancy after transplant with CF is 4.5 years. It won't cure CF for Mike. He would still have CF after a transplant. He would still need sinus surgeries, he would still have trouble gaining weight, he would still have diabetes (which may be even harder to control). In the end he would most likely deal with rejection unless he were do die of something else sooner. There is an increased risk of cancer and the list goes on.
 
The question Mike struggled with is:
Will I wonder if I should have done more when the time comes to die because I didn't choose transplant? Don the transplant coordinator shared with Mike that this questions is one he hears sometimes, at the end from CF patients who don't choose transplant.
 
When Mike was making this decision he told me that he isn't afraid to die. He knows where he is going and that heaven is a much better place then here. He said he has done everything he wants to do. He has no regrets.
 
And Mike continued to struggle with making the final decision. The comments/questions from others he was getting above bothered him. He needed to be able to articulate his feelings and find closure. Because of Mike's learning disabilities he can really struggle with processing and sequencing. I sat down and wrote down what I think he was struggling with. He agreed. He seemed relieved to be able to put into words pretty much what he was feeling. He asked me to share it with you here.
 

Dear Mike,

I’ve been contemplating the conversation we had yesterday. So many questions . . . Decisions need to be made the doctors have told you. The Easter message this morning was beautiful. It seemed that all the answers were heard in this one service while we celebrated our Risen Lord. Things became clearer to me. I’m hoping I can share my thoughts with you and that perhaps some of this will help you also.

First question – to transplant or not to transplant.

Maybe this question needs further definition. What does it mean to say yes? What does it mean to say no?

I think you understand what yes means. Yes, means you proceed through the process of transplant. You will go to classes and tests and be listed. And then you will wait. For a donor. Or perhaps for nothing. There might not be the right donor at the right time. Perhaps some criteria won’t be met and the answer will be no. Maybe God chooses to take you home during this process before the transplant takes place. Maybe you receive the perfect set of lungs and it adds some quality years onto your life. You know what yes looks like because you just went through this with Don. The good, the bad, and the ugly.

What does no mean? Does it mean you are giving up? Does it mean you are choosing death? These seem to be the thoughts you are still struggling with.

There are a couple of things that can get confusing looking at this side. It is natural to look at death as you look at no. I think you need to separate the two. They are not the same thing.

Let’s look at death. Either scenario – all of life, brings us to death. This is a separate issue all on its own. Most of us don’t think a lot about how we are going to die. We don’t have to because it isn’t something starring us in the face on a daily basis. We think about it once in a while and say a silent prayer that we die in peace. Just fall asleep one day and not wake up. But for you, Mike, and others who suffer with an illness, death is more complex. It isn’t the death that is a concern being a Christian. It is the thought of relentless, unbearable pain and suffering that comes before death . . .  that is what leads to anxious thoughts. Dr. Mischler said it best when she said, “We don’t know when Mike will die. We know what he will most likely die from but we don’t know when. As it gets closer we will help as much as we can to let you know how much time.” Having CF you have had to think about or push thoughts away about what it will be like to die from CF. You’ve lost many friends to this disease and you know how it goes. Don has shared with you the things they can do in the end to make things as comfortable as possible.

Death is difficult to look at. It is for everybody when it becomes our turn.

The Easter message makes this a much brighter picture.

It’s just a step to pass from this life into the next. The hymn said it well:
 
Jesus Lives!
I know full well. Nothing me from him shall sever.
Life nor death nor powers of hell. Part me now from Christ forever.
God will be a sure defense: This will be my confidence.
 
Jesus lives!

And now is death But the gate to life immortal;

This shall calm my trembling breath

When I pass its gloomy portal.

Faith shall cry, as fails each sense: Jesus is my confidence!

And this passage:

Job 19:25-27

I know that my Redeemer lives and that in the end he will stand upon the earth. And after my skin has been destroyed, yet in my flesh I will see God. I myself will see him. With my own eyes - I, and not another. How my heart yearns within me!

So what is death? Just a means to pass from this existence into heaven. “Today though shalt be with me in paradise.”

Now let’s look at no. What does no mean?

No means you are not choosing to go through the process of looking at transplant as a treatment for CF.

No means you will still continue to fight to live each day to the fullest.

Does no mean you have given up? How could anyone who even knows you in the smallest way think that this means you are giving up? See notes above

It doesn’t! You are not giving up. You are continuing to fight CF. You are choosing to live your life the way you want to LIVE it. It is your choice. It is only YOUR choice to make. No one else’s.     

Now, if you had an attitude or a heart that says, I’m gonna die soon anyway . . . screw all this stuff, I’m gonna party till I puke. . . I would be the first to tell you I am ashamed of you. That is not the right path.

What no doesn’t mean. No does not mean you are choosing death. Death is part of life. We will all experience death no matter what choices we make in our life. Do you understand now what I mean by these two issues are separate?

Will I wonder if I should have done more when the time comes to die because I didn’t choose transplant?

If the temptation comes to think these thoughts at the very end you will need to push them out of your head. They are not true. They have nothing to do with your life or your death or the choices you are making. You have always done everything you can to live your life. You will be tempted in your death as everyone is. It is Satan’s last chance to try and snare you. There is no guarantee with transplant either. Even if you choose transplant your life may be cut shorter than if you hadn’t chosen it. I mean this in the sense that once you proceed down that path you will not have a lot of time to spend with friends etc. If it doesn’t go well and leads to pain and more treatments then you will have spent much of the time you had left to be with others, on the pursuit of more time.

Phil 4:8 “Finally brothers, Whatever is true, whatever is noble, whatever right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things.”

You’re choosing to live - no matter what transplant choice you make.

God will choose when you die - no matter what transplant choice you make. 

Whether to continue your current path as a treatment for your CF – is your choice.

Whether to pursue a transplant as a treatment for your CF – is your choice.

No one will ever be able to put themselves in your shoes and really know what this decision entails. So no one can make the decision for you. We can only support the decision you make. Wholeheartedly!

If you say no to transplant I will continue to support you so that you can live your life to its fullest.

If you say yes to transplant I will continue to support you down that path so you can live your life to its fullest.

Mike, I am 100% confident you will make the best decision for you and that your decision will be a good one. I am also 100% confident your family and friends will support you.

Whether you agree or not, I hope you can respect Mike's decision. He doesn't have peace with pursuing a transplant as an option to fight his CF at this time. He does find peace saying NO to transplant right now.

Mike just left to participate in a bike trip. Not on a cycle but riding along with a friend. God bless you dude for taking Mike along. Praying for a day of peace for Mike. It can get kind of scary going that far away without oxygen.

Hope all is well with all of you!
Blessing to you!Shalom

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.

Slow and Steady

Things are changing around here. End-Stage CF is difficult. We'll be typing more soon.

Mike is home. He's not able to get out as much. Call and stop by . . .

We'd love to see you.

Blessings to you.

Milestones

This young man has celebrated lots of milestones lately.

Richie was confirmed on April 24, 2014. We are so proud of him. Three confirmations past and one to go. We are so blessed. We had a nice reception for him following the service. Thanks to my mom and my sisters we had lots of food to eat and a pretty cake too. Four of his sponsors were here and two were not feeling well and couldn't make it.

This was my favorite picture taken of Richie that day.

On May 22, 2014 Richie graduated from the 8th Grade. He has been a really great student and gets good grades. This was his most difficult year. He is ready to be in High School. After the closing service the kids were given a reception by the 7th grade class.

The kids were silly and shared silly stories.

I found the evening to be painful. Probably because I have the patience and pain tolerance of a gnat.  I'm not a fan or sarcasm or satire. The thing I enjoyed most was one of Richie's classmates, Noah T, reading a speech about what Christian Education means to him. He did an excellent job writing and giving this speech. It was the highlight of the evening.

Wednesday will be another big day for Richard. He will be getting braces put on his teeth. He's been waiting a long time.

What things are you celebrating?

Blessings to you!

Nightmares

I’m going to be typing quite a bit about chronic illness in the near future. If our trials in life do nothing more then give someone else hope then that is part of the journey worth documenting. Perhaps someone else will get a take away to use in their situation. Maybe someone else will understand just a little bit better why we might be battle weary for a bit. . .

We are very blessed to have good insurance. When you are dealing with chronic illness your worst nightmare involves not being able to get the medical care or drugs needed to fight off sickness. Like I said, we are very blessed to have good insurance. Not just good insurance but by most standards now days, it is excellent insurance. It is a perk of my husband being in ministry. Even with excellent insurance things can go wrong.

During a hospital admission in March Mike told me that he might need me to help him with an insurance issue. He was having trouble getting one of his meds. It is a very important med if you have CF. The name of the drug is Pulmozyme. In simple terms, Pulmozyme is to CF what insulin is to a diabetic. Simple terms – close enough. Mike was admitted to the hospital and again told me he hadn’t gotten a refill and might need help because he would need the medicine soon. Mike came home from the hospital and a few weeks later still didn’t have the medicine. He said something about how the pharmacy had called and said they needed more information about his insurance and he asked them to call me. Mike is dyslexic and has some other learning disabilities and these issues are not his thing. I never got a phone call and didn’t think much of it. Mike usually makes me aware when I need to step in. During another hospitalization in April Mike said again that he needed help because the pharmacy was bugging him about his insurance. Time to wake up mom. I asked if he had any medicine left and he said no. URGH!

I called our insurance company. A very polite young man named Alex referred me to their Express Scripts department because this specialty drug needed to be handled differently than most of Mike’s drugs. OK, but he assured me nothing had changed with our insurance so this should be a quick fix. I said that something must have changed because we suddenly couldn’t get this script filled. Transfer. The people at Express Scripts informed me that this particular drug was sent to Accredo to get filled. They would transfer me to Accredo. Now to understand this fully (if I’m getting it all right) you need to understand that Accredo is a pharmacy that ships drugs to us. I spoke to someone there and they told me that we can no longer get this drug from them because our insurance won’t allow them to fill the script. I would need to contact CVS Caremark. I asked if I could have that number. “That is all the information we have,” I was told. Logic told me that I needed to go back to my insurance company because something indeed had changed. I couldn’t get this medication from Accredo.

I called our insurance company. A nice young woman answered and I repeated my plight. Oh, you need to speak with Express Scripts. No, I told her, they couldn’t help me the last time. Blah, blah, blah TRANSFER to Express Scripts. I repeated my plight. Oh, we will connect you with the pharmacy that can help you with that. Is it Accredo, because I’ve just gotten off the phone with them and they can’t help me. No, that’s not the number I have here . . . TRANSFER. Hello, this is Accredo . . . sorry we can’t fill that script because your insurance won’t let us. You need to go to CVS Caremark. We have no more information.

I called our insurance company. Alex answered again, oh good, he was such a nice young man. Alex, I still can’t get this medicine because they are saying you won’t let me. Can you help? Well I need to transfer you to Express Scripts . .. NO, PLEASE, they can’t help me. Oh, well they have to. Will you please stay on the line because I am in a REALLY NASTY UGLY LOOP here? I’ve already been on the phone for this for almost 2 hours. Sure, Alex said to pacify me, I’ll stay on the phone. Same loop, only this time Alex is listening in. Express Scripts. . . . and back to Accredo. Your insurance company won’t allow us to fill this . . but wait, I have them on the phone. Alex intervenes and tells this nice man that he is to fill the prescription, what is the issue. The man from Accredo tells him he can’t fill it. After a lot of time we get nowhere and Alex tells me he will follow up and get back to me. Praise God because I’ve now spent 2.5 hours of my work day on the phone and I need to get back to work and this has fried me. I couldn’t have done any more. I give Alex the number to Mike’s doctor’s office so he can let them know where to send the prescription once he figures out where it needs to go. I get a call back the next day and Alex gives me numbers for CVS where I can get the script filled. I call Madison and give them the number. I hear nothing and the next day I call Madison. They were not able to get through to a human being with the number I gave them.

I call my insurance company. Josh answers and I give him my plight. This needs to be escalated . . . here is an escalation number. We will help you until this is resolved. Praise God because I am getting weary and weepy over the maddening situation I am in. Josh calls me back with a new number to use for CVS. I call Madison and give them the information.

The next day I call CVS and they tell me they have NO record of a script. I call Madison. Yes, we sent that by fax and have a confirmation number that they received it yesterday at 9:00 a.m.  I call CVS, oh that may take a few days to get into the system. We get thousands of faxes on that line every day. Call back tomorrow or you could have the doctor’s office call here. No, they said they couldn’t get through. . . I wait a few days. Meanwhile Mike is getting sicker by the day. You can see he isn’t able to keep up without this medicine. He starts home IVs. I call CVS. YES, they have the script . . . but they are very busy. It can take 7 – 10 days to get insurance verification . . .can we expedite? . . . Nope that’s the best they can do. Mike is getting sicker even on IVs. Sunday comes and I can see Mike is just getting weaker by the day even on Zosyn on IVs. I get him admitted to the hospital. Hopefully, this buys some time. I wait a couple of days and I call CVS. Well, we just got this script this morning and it will take 7-10 days to get insurance verification and then another 3 days to ship. AAAAHHHH, are you kidding me?

I call my insurance company. Josh answers and I get him up to date. You STILL don’t have that medicine? Nope, please can you help me? You will be my hero if you can get me this medicine. My son is in the hospital because I haven’t been able to get this medicine. He wants to come home soon. Please Josh help me . . . I will escalate this as far up the ladder as I can. We will get this fixed. Thank you Josh, that would be great. And, Josh adds, “Thanks for not being nasty. I can’t imagine how frustrating this has been.” No problem Josh, thank you for helping me. Another day goes by and Josh calls back. He gives me the name of a woman from the insurance office that hires out his company. We’ll call her Susie. Susie will is working on this to see what is going on and will call you tomorrow. Oh, thank you because my son has been in the hospital over a week and he would like to come home. Meanwhile, Shopko pharmacy in town calls me to tell me they have a script for Pulmozyme. Would I like them to fill it? Oh, you can fill it? Well there is a bit of a co pay . . . How much I ask. $5500. How much without the co pay? $5500. HELLO, that is because they won’t allow you to fill it! Oh, that’s why I thought we would check before we ordered it. The doctors in Madison were trying to get this filled and sent it to them. No go.

The next day Susie calls me. She is revved up. She has been on the phone trying to get to the bottom of all this. She tells me that Alex and Josh can’t help me that I needed to speak to her. She gives me her direct number. I feel like I am being scolded for calling Josh and Alex. I say, “But that is the number on the back of the insurance card . . .” Well they can’t help they are just eligibility . . . then why didn’t they know to transfer me to you?” I’m feeling slightly defensive because I’m not really sure what I did WRONG  but apparently there was something. I don’t really care, can we just move on to get this resolved? I can’t even remember what all was said but I pleaded with her that I need this medicine because my son wants to come home from the hospital. She says she will get back to me.

Susie calls back the next day and is revved up again. I totally get that. She tells me that the reason Accredo couldn’t fill the prescription is because AARP is Mike’s primary insurance carrier and that they require CVS to fill the script. I will have to talk to them. WHAT? Wait a minute. What is AARP? When did they become primary? You are our primary insurance! What is going on here? Who is AARP? I don’t know, Susie tells me, but that is what Accredo said. But you are our primary insurance. Someone made an ugly mistake (things are starting to crystalize now). Well, you will need to call them and fix it, Susie tells me. What? Why me? I don’t really care that CVS thinks they need to fill this. I don’t really care that AARP thinks they are primary. I don’t really care that someone made a mistake. . . You are my primary insurance. I have a prescription. How do I get it filled! I’m sorry, my boss won’t let me go any further until you make sure that CVS doesn’t ship that medicine to you. We don’t want to pay for it twice. ARE YOU KIDDING ME? (How will you pay for it twice when you are saying you aren’t even the primary – has everyone lost their minds?) I want to cry, I want to hang up, I want to enter the fetal position and never look up again. How is this happening? I can’t take any more. . . I take a deep breath and very calmly say to Susie, “Susie, you sound like you are in an emotionally charged state, would you like me to call you back at a better time?” Long silence on the phone . . . No, I want to help you, comes the reply from Susie. Oh, I’m glad to hear that because I could really use your help.” I tell Susie. Susie, you are my primary insurance. I don’t know how Accredo got the information that AARP is primary. Maybe my very learning disabled son who is in end-stage CF, during one of his drug induced stuppors, gave someone bad information. I don’t know. Does it matter? They are not going to ship that medicine from CVS without the right authorization which they will soon find out they don’t have. You are my primary insurance carrier and I have a prescription. How do I get it filled? Susie pauses, seems confused and starts the same lingo once again. I stop her as politely as possible and I repeat, “Susie, you are my primary insurance company. I have a prescription. How do I get it filled?” Susie says she will continue to work on this and get back to me. I tell Susie that it is now Wednesday and my son would like to come home this week. It has been two weeks since he was admitted. Will I be able to get this shipped this week? I ask. Susie says she will see what she can do.

The next day Susie calls back to tell me everything has been cleared up. Accredo is going to call me but they won’t be able to get the medicine this week. I want to cry but I am grateful it sounds like this nightmare is soon ending. I thank her for helping me. She gives me her direct number to call her if I need anything else. Accredo calls to verify shipping information. They will be able to get the medicine to me on Saturday. Praise God. Mike will only miss one or two doses. I’ll have Mike stay in the hospital on Friday long enough to get at least one dose of this medicine he needs twice a day, I think to myself. I’m uncomfortable that he has to miss any doses given where he is at with his disease but I feel helpless to fix this. I concede. An hour later I get another call from Accredo. It is from a Minnesota number. Hi I’m Tom and I’m going to get your medicine to you on Friday. What? Really? Yep, I just need to verify some information. We go through it ALL AGAIN. Frustrating but I am thankful we will get the medicine on Friday, God willing. We finish and Tom says, now when I hang up my worst nightmare begins. I can relate. Interesting choice of words . . . God bless Tom, he has to figure out how to get this medicine to me in less than 24 hours.

 Friday, Mike is happy to be getting ready to leave the hospital. Aunt Cathy is going to pick him up. I am grateful because I have already missed so much work trying to get this issue resolved. I call home and no medicine. Please text me when it comes. Hubby calls at around Noon. The medicine has arrived. I breathe a big sigh of relief. Praise God. No really, Praise God. Another battle won . . .

If you’ve read this far . . . thanks for listening. Keep on fighting!

 

Love, love, love