Monday, September 6, 2010

The past two weeks


I've been working harder to control my blood sugars the past two weeks, and it seems to be making a difference.  My trend line has been lowered by about 50 mg/dl, which puts me in the 150-225 average range, instead of the 210-250 range.

Progress, not perfection!

A couple weeks ago I was beginning to feel pretty punk, and went to the doctor.  My PFTs were only down a little, which shocked me.  I was expecting to have to be admitted or do home IVs at the very least.  We opted for a couple oral antibiotics instead, and I finished them last week.  I have to admit, they really did help.  But now I'm not sure if I'm going downhill again.  My left lung (just to the left of my sternum) has been hurting pretty badly at times and has been getting worse, not better, as time passes.  It's not to the point where I need to see anyone about it.  Even in the past, when it's been nearly unbearable, they really can't do a whole lot for me.  Maybe I will just get some new lungs soon?

I exchanged emails with my transplant coordinator last week and what I was told was:

  • they have done 16 transplants this year
  • they have been quiet the past few weeks (no transplants)
  • I am essentially at the top of my blood type list because the other people who are my same size, with higher lung allocation scores, have other factors which make them more difficult to match - therefore, they expect that I should be next
This news has stuck in the forefront of my mind.  I know that the holiday weekends are typically high organ offer times.  With every place I go, every thing I do, every thing I plan, I keep in mind that I need to be able to get my ass to the airport stat if I get THE CALL.  So no riding in other peoples' cars, the cell phone is always visible, and my bag is (still) packed in my car, ready to go.  I even have my digital camera with me (battery fully charged) so I can get lots of pictures to document my journey, because I may or may not be too excited to remember details.  

I continue to pray for my donor and my donor's family, because they will be experiencing a great loss just as I am getting the opportunity for renewed life. 

5 comments:

Jesse Petersen (CF Fatboy) said...

Good info from your coordinator. Go cyster.

Aspiemom said...

I hadn't really thought through how different you need to live while waiting for that call. Especially riding in other's cars.

I hope you get your new lungs soon!

Colleen said...

Keeping you in my thoughts. Hope the call comes soon.

Colleen

Matt Todd said...

For whatever reason they didnt take pictures of my lungs with the camera I gave them. I was disappointed. From my experience you're not going to remember things because you're doped up and not so much from excitement.

unknowncystic said...

I am wishing the best for you and hope you receive new lungs soon, though I feel for the person who shall donate them to you.

Stay strong.