Wednesday, June 19, 2013
ANOTHER TEST OF THE SYSTEM
Today started pretty well. Nurse L (one of three Nurse L's) took me on a walk. I managed three laps, not great but not bad. It's the most I've had in one pass so far so it's progress. My legs are still week so my shoulders carry a lot of the wait and actually take longer to recover than my legs. They we had a nice, if somewhat cold, sponge bath and she changed the bed linens. Basically walked me, washed me and put me back in my stall.
Dr. B just came by on rounds and had news I didn't expect. They are putting me on the GVHD Grade 1 diet again, clear liquids, to see if the GI track can hold on to some of it. You know we have tried this before without success. Here's hoping that with the lower steroid levels it will work. If it does not work then it is time to acknowledge that that treatment is not going to be effective. That is not good because it is the standard treatment that is supposed to work the best. If this go around fails they are going to try a photopheresis treatment. That involves putting a small catheter in my chest and running the blood out through a light box and back. Apparently it helps the blood fight the GVHD. The treatment lasts a couple of hours at a time and will probably go on for a few days. I forgot to ask about the frequency of treatment. Hopefully I don't have to find out.
So we are back to wait and see and hope that the GI track cooperates. I'm hopeful but honestly not confident about the GI track cooperating given the past chances. I wish I felt better about that but I just don't.
That's all I know at this point. I'll let you know how it turns out. Here's hoping for the best.
Boone
P.S. They have already put in the order for the Photopheresis, just in case. Nurse H says that in this case a doctor installs the line, not a Tech like you get for a PICC line. I eaten most of my lunch and a lot of it has already passed through, not all of it but enough that I'm not very hopeful about any remaining behind. Nurse says many people get the light treatment so It's one more round of hoping for the best. Getting to eat is the goal and it's nice but some sign of progress would be oh so much better. Stella referenced Sisyphus in one of her comments and I'm really beginning to identify with the guy. I've got to find a way to get this rock to the other side and send it flying downhill.
5 comments:
Baby steps. Little, bitty baby steps. Our friend has told me about the photopheresis (?) I am always at a loss as to what doctors can do. I am pulling for you. I want you to eat. I want you to walk. I want to shake your hand...no gloves or mask.
Alright, now we know what the next step will be if the GI tract doesn't behave. Those people have so many tricks up their sleeve just waiting to use. If necessary to go to plan B, so be it. How many times do you hear, "Stay positive"? I will not say for you to carry that burden, we will all do it for you. We will stay positive and you keep on doing what they tell you to. You doing good! I'm home from Therapy where "You are always on my mind, You are always on my mind".
Boone - add me to the list of anonymous lurkers out here in the blogosphere. I don’t get to check in every day, but I have read every post and my heart is with you every step of the way.
I know you will miss the condo, but I look forward to setting the field on fire at the farm every July 4th again – well maybe not this year but definitely next year!
Let me know if there is anything I can do for you or to help Miss K. Rock on!
- Ken
Hey, dboonie! I have returned from the land of tea and crumpets and will stop by soon. I managed to come back with some foreign germs though so I will have to wait until I have recovered before I visit. Just caught up on the blog. Tally ho!
I've read good things about the photopheresis, glad they're giving that a go. Again, many testimonies I've seen on the web about your particular condition being slowly but surely remedied. Those docs won't give up until they get it better. This is certainly a great test of patience.
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