It is the day after MD Anderson and I could use a little more sleep.
To get the numbers out of the way WBC: 16.6 RBC: 4.39 Hemoglobin: 14.1 Platelets: 131 ANC: 12.12 Alkaline Phosphatase: 75 Alanine Aminotransferase: 63 LDH: 1119
The only normal numbers in the bunch include: red blood cells, hemoglobin, and alkaline phosphatase (liver enzyme). My platelets are plummeting, and everything else is high--mostly due to steroids. My liver enzymes are trending in the right direction. So much so that my transplant doctor surprised me yesterday by having my PICC line pulled. It was an ecstatic moment.
I saw the infectious disease specialist, AKA the fungus expert, and he discharged me from his care. My lung issues had nothing to do with fungus, but the culture did grow para-influenza. I was on so many antibiotics that it was covered and essentially treated.
Next up was the pulmonary specialist who showed me my chest x-rays from the last three visits. It was like night and day. When I was first diagnosed with decreased lung function, the x-ray showed both lungs filled with infiltrates. It looked like someone had dumped a box of cotton swabs into each lung to the point that the lower lobes were nearly opaque. Yesterday's x-ray showed some infiltrates still present, but you could tell you were looking at lungs. I've been told that it could take months before my breathing is normal. I still get slightly breathless when I exert myself, but it's nothing compared to what it was a month ago.
I have to return in December to have more scans and do another complete pulmonary function test.
My transplant doctor is pleased with how I'm reacting to the steroids and has started me on another taper. If all goes well, I can taper again in two weeks. She had concerns about my tacrolimus levels, though. She likes for them to hover around 8 and mine were at 16.9. To put things into context, tacro causes headaches and tremors. I haven't had any headaches, but I shake from head to toe. It's so bad that I have a hard time taking notes in class and yesterday, the phlebotomist had to physically restrain my arm in order to get blood. Dr. K. noticed the shaking right away and immediately throttled back my dose.
My magnesium is also low from the tacrolimus. I have to start taking mega-doses of it to supplement and have my levels checked locally in two weeks. All of the doctors I saw yesterday speculated that the increase in leg cramps interrupting my sleep is a result of low magnesium coupled with steroid side effects.
My brain is starting to shut down and I have a bit of homework to do before class, so I'll have to leave you with this pitiful post. Chris has a Halloween video that he needs to upload. Harass him and it might happen.
To get the numbers out of the way
WBC: 16.6
RBC: 4.39
Hemoglobin: 14.1
Platelets: 131
ANC: 12.12
Alkaline Phosphatase: 75
Alanine Aminotransferase: 63
LDH: 1119
The only normal numbers in the bunch include: red blood cells, hemoglobin, and alkaline phosphatase (liver enzyme). My platelets are plummeting, and everything else is high--mostly due to steroids. My liver enzymes are trending in the right direction. So much so that my transplant doctor surprised me yesterday by having my PICC line pulled. It was an ecstatic moment.
I saw the infectious disease specialist, AKA the fungus expert, and he discharged me from his care. My lung issues had nothing to do with fungus, but the culture did grow para-influenza. I was on so many antibiotics that it was covered and essentially treated.
Next up was the pulmonary specialist who showed me my chest x-rays from the last three visits. It was like night and day. When I was first diagnosed with decreased lung function, the x-ray showed both lungs filled with infiltrates. It looked like someone had dumped a box of cotton swabs into each lung to the point that the lower lobes were nearly opaque. Yesterday's x-ray showed some infiltrates still present, but you could tell you were looking at lungs. I've been told that it could take months before my breathing is normal. I still get slightly breathless when I exert myself, but it's nothing compared to what it was a month ago.
I have to return in December to have more scans and do another complete pulmonary function test.
My transplant doctor is pleased with how I'm reacting to the steroids and has started me on another taper. If all goes well, I can taper again in two weeks. She had concerns about my tacrolimus levels, though. She likes for them to hover around 8 and mine were at 16.9. To put things into context, tacro causes headaches and tremors. I haven't had any headaches, but I shake from head to toe. It's so bad that I have a hard time taking notes in class and yesterday, the phlebotomist had to physically restrain my arm in order to get blood. Dr. K. noticed the shaking right away and immediately throttled back my dose.
My magnesium is also low from the tacrolimus. I have to start taking mega-doses of it to supplement and have my levels checked locally in two weeks. All of the doctors I saw yesterday speculated that the increase in leg cramps interrupting my sleep is a result of low magnesium coupled with steroid side effects.
My brain is starting to shut down and I have a bit of homework to do before class, so I'll have to leave you with this pitiful post. Chris has a Halloween video that he needs to upload. Harass him and it might happen.