Sunday, August 14, 2011

No Decision is a Decision

For the last few months my husband and I have created a good team to surround ourselves with in regards to his illness, Pulmonary Fibrosis.  This team consisted of a family doctor, nurse, pulmonologist, transplant pulomonologist, pharmacist and a patient advocacy group.  Together, we coordinated to provide my husband with as many options as possible in treating his illness. 

As there is no cure for Pulmonary Fibrosis, the primary option for treatment was a double-lung transplant.  Because we lived out of state from the only hospital with whom this would be covered under our state's health care program, this would mean that if he was approved for the transplant, he-- or we, would have to move to that state.  This is for reasons such as the organs, themselves, have a very short "shelf-life" and it is crucial that my husband is in reach, if a donor had been found.  Other reasons include the fact that it is very common for the body to have complications and to also reject the organs once the transplant was completed.  Overall, we were told we may have to live in the other state for nearly a year. 

I was all for this.  Yes, we do not have all the answers, and Yes, there is no guarantee that the transplant would be a success and Yes, there is a great deal of coordinating that must occur.  But it was possible.  Anything is possible when you love someone.... 
My hubby on the other hand seemed on the fence.  Not just about the move, but about the whole process. 

He found the idea daunting and although he knew it was his only alternative, I noticed that when being pressed to make a decision, his response was, "I'll think about it." 

Days turned into weeks and not wanting to be the pressuring wife, I would go to him and ask if he has come to a decision to move forward. 

Again, he responded with, "I will think about it and let you know." 

This seemed to me very much like living in limbo.  Much of his decision would affect myself as well -and Lord knows, I was not ready to lose my husband.  After several rounds of this and a couple months passing, I went to him and let him know that the whole care team is needing to know his decision. 

He said, "I am still thinking about it."   

But this time I pressed.  I let him know that as time passes, his status could change to where he does not have a choice at all.  I also explained that other than a transplant, our only option would be to help coordinate the quality of his life with Pulmonary Fibrosis.  There was nothing else that could be done. 

Finally, he told me what I was beginning to understand in my heart.  That he would not be moving toward the transplant.  He felt in his soul that for whatever reasons, it would not be successful and it was something he just knew inside himself.  A part of me could not believe that this is where we had arrived to and another part of me understood that this decision belongs to him.  All I can do is support whatever choices he makes and that is my primary role.  So, I cried and I loved him. 

I truly believe that when a person is not making a decision, it actually is a decision.  It just takes a while to recognize that.

1 comment:

  1. I would like to add that although the decision for a transplant was very personal and excruciating, many people who have this disease do not have the luxury of that option. Due to age, lung function, or other health complications; many do not have any other option to this terminal illness. Our family continues to pray for those people as well as all of those whose lives have been touched by this terrible disease- Pulmonary Fibrosis.