Sorry it has been so long since the last update. In the last 30 days things have been kind of up and down. When you're not feeling good it just makes me want to keep to myself. Things have not been going badly, just not great. I am STILL on the steroids to try and control the GVHD. The roids are still doing their best to make me fat. Even with excercise and portion control I still manage to gain weight. I am 40lbs heavier than when I left the hospital from transplant.
So a few weeks ago my doc decides to change my primary immunosupressant from Prograf to Rapamune. He says it works better. Turns out it just gives me a an ichy rash. So he takes me off it, and take a couple of skin biopsy's to be sure. (They like to pucnh holes in me. Not sure why but the do. For the byopsy they numb the area with an injection of lydacane, then use a 3mm razor sharp circular cookie cutter and cut the little doughnut hole piece of skin out. then one suture to close it.) Anyway, The rash goes away and i go back to see him a few days later and he looks at my skin and says, "Your skin looks great, it looks better than it ever has." So then he decides to put me back on the Rapamune
and what do think happens? Yup itchy rash again. Back to the docs office a few days later, and he takes me off it. Now he decides to leave me off it for a week or so. He gives me a cream to put all over me to help with the itching and the rash. Fast forward another week and I am back for my regular treatment and to see the doc. He decides to put me back on the Prograf, so at least he can get me off the steroids. Yay! I think. Meanwhile during this whole thing I have managed to get an infection in my chest catheter. Had some fevers and felt crappy for a few days. Now I am on IV antibiotics for the next 14 days. Weeeee! At least the fevers are gone and I feel better.
Things are progressing, and moving forward. All of my blood counts are still good, which is a very good sign. As slow as it seems, they are still going forward. I thought I might be back to work around this time. Not I am not sure when I will be back. Things just get tough when you spend most of your life sitting at home trying to stay busy.
Things could be a lot worse. For a lot of people they are. So I will do like any good soldier, and stay the course.
Just for fun I figured I would share what drugs I am on right now.
Valtrex 500mg twice a day Prevents viral infections
Prograf 1mg morn .5mg evening Immunosuppressant
Protonix 40mg twice a day For acid reflux
Ursodiol 300mg twice a day Protects my liver and gallbladder
Norvasc 10mg once a day Lowers my blood pressure
Dapsone 100mg once a day Prevents certain pneumonias
Prednisone 40mg/ 10mg alternating days ROIDS! for GVHD
Vfend 200mg twice a day Anti fungal
Furosemide 40mg once a day Gets rid of excess water
Potassium 20Meg once a day Suppliment
Multiviamin without iron once a day Suppliment
Calcium 600mg once a day Suppliment
Vit D 400mg once a day Suppliment
Vit C 500mg once a day Suppliment
Tacrolimus ointment twice a day For a red spot on my face GVHD
Triamcinnolone cream twice a day For the RASH! man the rash
IV Magnesium with potassium twice a day 2:30min per dose Suppliment because all the other stuff makes my kidneys leaky. YAY leaky kidneys
IV Vancomycin twice a day 1:30min per dose For the infection in my catheter
Eye drops at least 4 times a day If I don't they say my tear ducts will dry up and never work again.
Well there you have it. I am here and there. I am everywhere. I am in a house, with a mouse, I will not eat green eggs and ham........Wait where am I??
Never give up! Never surrender!