Hanging in there

Hi everyone.

I don't really have any new info except to say that my saturation numbers are going down so my oxygen numbers are going up.

For some reason right after the first of the year my numbers went south - sadly not to the Caribbean ;-)

Now I need 3 to 4 liters of oxygen at rest and 6 liters for walking or other exercise.  I was on 2 at rest and 3 for walking.  I get really short of breath doing some of the simplest things so it has become a real pain.  When I walk from the bedroom to the kitchen to my embroidery room my sats drop to the 80s...ok, time to sit down.  But, I have to walk out of my embroidery room and into the living room before I can do that.  The sats stay down just that much longer :-(

In an organized world I would increase my oxygen level every time I walked around the apartment or took a shower or cooked or anything except sitting.  We are not that organized ;-)  Lee or I would be running back and forth to the oxygen concentrator every five minutes.  While that might be good exercise, it would get really boring and we'd all go crazy!  So at home I try to walk slowly (not easy for me!) and do a little bit at a time (also not easy!).  By trying to do this stuff my sats don't drop as often which is a good thing.

For walking I can't go any lower than 6 liters or my number drop really fast.  I can walk across the room but I can't walk very far without increasing the level. 

Lee and I went to Winston-Salem this weekend for a birthday lunch with Michael's family.  They celebrate all the family birthday's in the month or they just celebrate life if there aren't any birthdays.  January was Lee's b-day month and that was nice.  Two things became apparent at the lunch... First, I could potentially run out of oxygen (at my new higher level) and not have enough back up tanks in the car.  That would be very scary on a weekend day.  Second, no one in the family eats a lot of sweets.  Lee wanted to bring his favorite chocolate cake from Costco (all chocolate with fudge filling and fudge frosting) and we ended up bringing 1/2 of it back home with us.  That's the last thing we need after the holidays!  We took a big piece to Robert - our friend who takes Missy out when we are gone for more than six hours and we ended up throwing out a big piece.

Because we are concerned about running out of oxygen when we are away from the house, the pulmonary people gave me an "oximizer".  It's a tubing that has a reservoir pendant that holds extra oxygen.  That way when I breathe in I'm actually getting 50 percent more oxygen.  Because of that, I can set my tank on 3 and with the oximizer I'll be getting the equivalent of 5 liters.  When I'm walking I can set the tank at 4 and get 6 liters worth of oxygen.  That will make my tanks last longer which will be a good thing!  It's a little bit noisy but it will be great for walking and travel.

Back to my dropping sats...I spoke with Khara (transplant coordinator) and  she made note of it and talked to Dr. Zaas about it and it basically boils down to I getting sicker.  Duhhhh.  I knew that and I'm not a doctor.  They have sort of been expecting this dive and I think they thought it might happen sooner.  I still do rehab every day and they don't cut you much slack there.  I still do the floor exercises and the walking and the bikes and the weights.  I have cut back a couple pounds on the chest press and the leg lift machines but other than that everything has stayed the same.  It just takes me 3 1/2 hours instead of 2 /12 hours.  Lee also drives me most of the time.

I haven't had a lot of extra energy lately so Lee drives me to rehab.  Anyone who knows me well knows I must really not feel good to have Lee driving me ;-)

I go see Dr. Zaas next Wednesday and that's when I'll have another Pulmonary Function Test and blood test.  I expect the PFT will be a bit worse than last time (and boy that's relative because it's always bad!).  This blood test will show the HLA lab (anti-body lab) if my anti-bodies have really gone away.  If yes then they can change my numbers with UNOS.  The lower the anti-body number the easier to find a donor match.

Well that's it for now because I'm going to bed.

Love you guys,

Lee, Wendy and Missy