Sunday, August 21, 2011


Right on the cusp of my husband's decision not to pursue a double lung transplant came another decision needed to be made.  The next decision was to allow his status to be changed to hospice.  Hospice is the idea that you suffer from a terminal illness to which there is no cure to pursue.  It helps to provide comfort and care in the way you desire during this time of your life.  In order to be placed on hospice your doctor must agree that you would only have three to six months to live.  We became aware that his medical staff has been believing this for quite some time and it was only a matter of us realizing this... 

My husband chose to go onto hospice, which for us was a strange transition; knowing we were now moving towards the end of his life.  The care and support has been fantastic, as under hospice, a nurse comes to see him once a week and discusses his health, medications, and needs.  He no longer has to go to visit a doctor. 

A booklet about hospice was given to me to learn about the stages of death and how, as a caregiver, I can prepare myself.  There were many descriptive areas within the book, although one of the sentences I read gave me pause to think. 

"As a caregiver, you must realize that it is now too late to change your loved one." 

I found this slightly humorous and true.  This would not be the time to really get my point across to my husband about leaving the toilet seat up. 
Things like, "Can't you see things from my point of view?"  or " "Why do you always ___________?" (you fill in the sentence), simply do not matter. 
This is his time to process and maneuver through this tremendous life experience.  His primary focus is not scoring points with me, rather; it is a dance of surviving and letting go -all at the same time. 

When I mentioned this later to the nurse, she smiled and said, "I always wondered why that sentence was necessary in the hospice book.  It didn't seem like it fit into the rest of the information."

To me, it speaks volumes.  You see, some of the push and pull is part of a healthy marriage.  If a marriage is to be 50/50, an equal partnership, then part of that is hoping your spouse will meet you half of the way.  Never wanting to change who your partner is, but always offering layers of who you are for your spouse to adopt.  This goes both ways. 

Now, it must be understood on my part, that the 50/50 time of our marriage is now over.  The offerings of who I am within our relationship is like a ship drifting out to the edge of the horizon until it disappears.  It is time to focus on who he is.  It is the acceptance of ---
The person he once was, is the person he is.  The person he is, he will always be.   

photo via

Wednesday, August 17, 2011

The most perfect communion of soul with soul, the most exquisite fellowship of mind with mind, are possible only where undoubted trust and undying love are possible, nowhere else. Nothing so ennobles and purifies a spirit as the exercise of faith in somebody.

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.

Friday, August 12, 2011

Congressional Press Conference Announcing Pulmonary Fibrosis Legislation

This is worth the time to listen to :)
Let's keep pushing to get the Pulmonary Fibrosis Research Enhancement Act (PFREA) passed!!
More research, please!  For more information, please go to The Pulmonary Fibrosis Foundation at

Sunday, August 7, 2011


When we recall the past, we usually find that it is the simplest things - not the great occasions - that in retrospect give off the greatest glow of happiness.
Bob Hope

Wednesday, August 3, 2011

Starry Night

Hello. I can't sleep tonight. My hubby is not doing very well and I can just see him becoming too tired to fight. It was about 10 months ago when he was diagnosed. I know these things are happening but it is truly difficult to wrap my mind around how quickly this disease has progressed.
I still see images in my mind of the strong, healthy, man that he was and it saddens me very much to realize that we only have precious little time left together. Sorry to be such a downer, but if he were to leave this world, I would understand. I just do not know how I will be able to cope without him. My best friend. I started his blog to get the word out about PF and to share his story,
 but I wonder if I was really able to do that?
I wish we had more time.
Thanks for listening...