MamaMarg's Journal

well, first off i want to let anyone who might care, know that i've been to the voodoo doc about 4 times, now.  i think we go every week and a half...and we're stretching it out to every 2 weeks..so save us the drive.

he does accupuncture and makes up this crap he calls a "tea".  it tastes like pooh!  i have been taking it, though.  and i've noticed the last week or two , that  i do tend to have a bit more energy and strength. 

i dont' want to give all the credit to him...since i am still walking on the treadmill ...every day!, but it might be helping some, also.

now the bad news.  my husband has been bumped up on the bad liver list.  i guess they rate the transplant list on a scale of 1-20.  he's been at 13 for almost 2 years.  this last 6 months has seen him jump from 13 to 19.  i'm so scared.

any prayers for him would be so greatly appreciated.

thanks

margaret

i did the retesting today. 

my blood gases or co2 thing was still high.  but it's come down!  it was 56.6 last time and it was 53 this time.  but it hurt like hell this time!!!  the whole time she was doing it ...it hurt me

they still made me do the 6 min walk.  she let me cheat a bit, i think.  she told me it was 7 laps to make the 800 ft.  and after the first lap, she looked at my oxy level, it was 84.  she made me rest!!!  but she kept telling me i had time to get it back up and still do it.

as soon as it hit 90, she told me i could go again.  the next lap, she didnt look and i didnt' tell!!!  the last lap, she came out and saw it and told me to rest again.  she said i still had time.  so i got it back up...and i finished.  after she wrote down the distant and heart rate...my oxy was back up there so she wrote down 90. 

supposedly the surgeon will have to look at the results and decide.  i'm sure he'll say no.  but i'll wait and see.  then i'll let you know.

they did mention the trial testing thats being done.  they seem to think i might be eligibil.  something about a hose going in and closing off the bad sacks in the lungs.

thanks for the prayers and the concern for you. 

margaret

well, they cancelled my surgery! 

 i thought i had it made!  then today at the appointment with the surgeon, he said everything looks pretty good.  so, after going over all the info, he scheduled me for monday at 10 am!!!  i was scared, but happy.

he ordered another arterie blood test thing for today.  my number pre rehab was 49% for the carbon...monoxide or dioxide...i dont' know which.  but the cut off for the surgery was 50...and i was sooo close, he ordered another test of it.

so...i let them suck me again in the wrist!  this time my carbon monoxide/dioxide level was higher.  i think it was 57%.  but the nurse didnt say anything about it.  so , off i went to the anethisealogist for the talk.  then off to the lab for the a regular blood test and ekg. 

my nurse, the one that's been helping me, caught me before the lab tests.  the surgeon had seen my numbers and canceled my surgery!  so, it's off.  so, as of now...it's not going to happen.

she said she didnt' think there was anything i could do to make it drop.  but the doctor would have to decide what to do now.

she did say, that it helps explain why i'm sooo out of breath any time i move.  guess i just can't get the the bad stuff out of the blood.  i'm not totally defeated...yet...but i'm close to it.

guess i have to say that i'm happy they found this out now...and not on the operating table.

i'll keep you updated on any changes.