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