Saturday, August 2, 2008

The false alarm

After signing the consent form, I was sent home to wait for the phone to ring.  I provided the coordinator with 5 numbers where I could be reached directly or indirectly.  I can't say that I thought about it every time the phone rang, but probably most of them.  

In the meantime, I was trying to prepare myself as well as I could.  I had a bag packed in my trunk at all times.  I contacted Northwest Airlines and found out that they offer a discount for patients flying for a transplant.  I just provide them a code word, and I would fly for half price.  I wrote down their scheduled flights between Detroit and  Minneapolis.  I  also had maps and routes ready in case I had time to drive.

Well, the  call finally came near the end of June.  The timing was perfect.  We just had my daughter's graduation party, and vacation was still about 3 weeks away.  I was told that I would have time to drive to Minneapolis.  My husband was home to help with that and after informing/celebrating with my daughters, we packed and left.  The drive was exciting.  We were calling family and friends and just euphoric.  

Then another call came from the transplant coordinator saying that unfortunately, the pancreas did not yield enough islet cells and could not be used for a transplant.  I could tell that she and the transplant team were just as disappointed as we were.  We had driven about 3 1/2  hours by then, and it was a long trip home.  I knew that this was a possibility, but I didn't really think it would happen.  It was the biggest reason that I wanted to drive rather than fly.  It would have been even harder to take the news after my plane had landed and then realize that I now need to fly back home.  

So, we went back home to wait again.  I guess it was a good trial run.  Probably the thing I gained the most from this experience was that actually being on my way made it seem very real.  Between our excited exclamations, I had time to  think things through.  I realized that I was a bit apprehensive about the immunosuppression, and that it would probably feel strange in some ways to no longer be diabetic.  It was such a big part of me, although certainly not a good part.  But all in all,  I really believed that this is the right decision for me.  Even if it  doesn't turn out perfectly, at least I tried.  And negative data is still data.  It  would still  push a bit closer to the cure.

1 comment:

firedancermom said...

Amazing. It may be hard to believe, but the way you write this makes me have a catch in my breath. I can totally relate to how it MUST feel to be on the way to possibly a cure. That the road may be long, but that your reward MAY be a lifetime of leaving the thing that had defined you for so long.

How complicated. And seriosuly, you really are brave and very special.