Since its the weekend nothing medical is happening. Next photopheresis treatment is Monday but it has been a busy day for visitors. Kathi was here better part of the morning and we went for a lap and a half around the unit. Not much but at least back to walking. A good friend from the office and his bud from Atlanta came by for a while and during their visit friend G came by for a bit. As they were living another friend came by and brought with her the lady who has been my self described "stalker" on the blog. Very nice lady. It's nice to put a face with the anonymous posts. H and R will likely come by tonight as has become their custom when H is not working, he does 3 12's a week. I always enjoy their visits and am honored that they spend so much time with me. I know they have other stuff they could be doing. Whenever I say that Harold says yeah but that is housecleaning so he'd rather visit me. I'm still honored.
Hope you had a good day as well. If not then tomorrow will be better. Thank you for stopping by as well.
Boone
Saturday, July 6, 2013
Friday, July 5, 2013
I HAS A BEARD, KINDA
They tell me I can't use a razor and I don't use an electric one so this is what I look like now. Glad to be getting some hair back but also glad that I hardly ever see myself in a mirror. Hope none of you are too shocked.
Boone
ANOTHER SLOW DAY
Well the day started out early. Woke up about 3am. I knew I was getting platelets about then so I laid there a minute. Noticed my hip felt wet and upon checking, sure enough, the ostomy bag has leaked a bit. Just a bit so I called Nurse E and we got the bag changed with almost no mess. Nurse S is not familiar with the procedure so she came into watch. The stoma has some sore areas around it and was particularly sore after the cleaning and rebagging so I got some pain meds and went back to sleep.
PT nurse came by and we went for a short walk. I'm still weak and to be truthful not exercising like I should. I have to do better and I will. I've just been down lately knowing that I'm going anywhere anytime soon. I'm not depressed, I don't think, I've just got to get that more upbeat attitude back. Getting put back on NPO this morning didn't help but Dietary screwed up and brought me lunch anyway. I was pretty good boy. I only ate the popsicle. Give me a few days maybe and I'll be back to speed. It's not really a choice, it's a have to.
Nurse T should be here in a bit for my photopheresis. Not exciting but something to do. It's loud and I'll probably get a headache but they'll give me pain meds if I do and I'll sleep well.
Hope you are having a more exciting day than me.
Boone
PT nurse came by and we went for a short walk. I'm still weak and to be truthful not exercising like I should. I have to do better and I will. I've just been down lately knowing that I'm going anywhere anytime soon. I'm not depressed, I don't think, I've just got to get that more upbeat attitude back. Getting put back on NPO this morning didn't help but Dietary screwed up and brought me lunch anyway. I was pretty good boy. I only ate the popsicle. Give me a few days maybe and I'll be back to speed. It's not really a choice, it's a have to.
Nurse T should be here in a bit for my photopheresis. Not exciting but something to do. It's loud and I'll probably get a headache but they'll give me pain meds if I do and I'll sleep well.
Hope you are having a more exciting day than me.
Boone
Thursday, July 4, 2013
HAPPY FOURTH EVERYONE
Another slow day. Breakfast. Photopheresis. Kathi's back was out so meds and bed for her. Headache. Meds. Nap. Walked two laps. Blog. Maybe fireworks on TV tonight. Supposed to rain but weather no longer effects me much.
Dr. F did say that it will likely be a month, assuming continued procedures, before we know if the photopheresis is helping. Also they won't do the liver biopsy unless they can get my platelets up. That is becoming an issue. After two units early this morning they went from 20 to 37. Biopsy needs 70 and they don't know if they can even get mine that high. We'll see.
Boone
Dr. F did say that it will likely be a month, assuming continued procedures, before we know if the photopheresis is helping. Also they won't do the liver biopsy unless they can get my platelets up. That is becoming an issue. After two units early this morning they went from 20 to 37. Biopsy needs 70 and they don't know if they can even get mine that high. We'll see.
Boone
Wednesday, July 3, 2013
CHANGE IN PLANS
When I left you yesterday I was scheduled for a liver biopsy today along with the photopheresis today. Later that afternoon they canceled the photopheresis in favor of the biopsy. They gave me the blood and platelets last night but this morning the lab shown a platelet count of only 27. The biopsy needs 70, they'll take 50. Photopheresis wants 50 but they will take 30. The billy-ribbon count from the liver was better this morning so the team decided to put off the biopsy and go back to the photopheresis. Good news plus I got back on the GVHD1 diet, full version, not just Dr.S's very clear version.
It became apparent after a while that the platelet count would not be in the required range until late in the afternoon so the photopheresis got pushed back till tomorrow morning. No reschedule yet on the liver biopsy as yet. I think it depends the next lab report. So the only real event of the day was that I go my first cup of coffee in about six weeks. It was decaf but tasted great anyway. I love coffee. My maternal grandmother got me started when I was four years old. Taught me to saucer it a blow it. For those of mot from around here that means to pour coffee into the saucer and blow on it to cool it off. Then you drink it from the saucer. Pinky out for culture is optional.
Boone
It became apparent after a while that the platelet count would not be in the required range until late in the afternoon so the photopheresis got pushed back till tomorrow morning. No reschedule yet on the liver biopsy as yet. I think it depends the next lab report. So the only real event of the day was that I go my first cup of coffee in about six weeks. It was decaf but tasted great anyway. I love coffee. My maternal grandmother got me started when I was four years old. Taught me to saucer it a blow it. For those of mot from around here that means to pour coffee into the saucer and blow on it to cool it off. Then you drink it from the saucer. Pinky out for culture is optional.
Boone
Tuesday, July 2, 2013
TOMORROW WILL BE A BUSY DAY
Had my breakfast sitting up at the table in the room and then set up for another couple of hours. Dr. F. just came by with the updated plan. I'm still having issues with the Billy-ribbon (That's how you say it. No idea how you spell it.). The output from the liver. So tomorrow I will have a liver biopsy where-in they run a tube down through a neck vein to the liver and collect a sample. He says you are sedated like for a colonoscopy so I OK with it. I plan to ask for as much sedation as possible. Might as well get as much as I can out of the field trip.
Dr. noted that I will be getting blood and platelets tonight to prep for the biopsy. It didn't surprise me at all when after he left Nurse R pointed out that "tonight" means wee hours of the morning. I've gotten used to that and would be a total night owl again if not the Dr. rounds and meds that happen first thing in the morning.
Nothing else to tell except I'm still having headache issues from the photopheresis. I'll post later if something exciting occurs. Don't hold your breath.
Boone
Dr. noted that I will be getting blood and platelets tonight to prep for the biopsy. It didn't surprise me at all when after he left Nurse R pointed out that "tonight" means wee hours of the morning. I've gotten used to that and would be a total night owl again if not the Dr. rounds and meds that happen first thing in the morning.
Nothing else to tell except I'm still having headache issues from the photopheresis. I'll post later if something exciting occurs. Don't hold your breath.
Boone
Monday, July 1, 2013
ON THE WHOLE NOT A BAD DAY AT ALL
Today started early with meds and feeling weak. They bumped up the steroids and that makes you weak especially large muscles like the hamstrings, makes it hard to standup. Dr. F made rounds about 10. No new results from the tests. He did confirm that I would go back on the GVHD1 diet after the afternoon ultrasound .
As it not unusual we had to wait on some meds from the pharmacy to start the photopheresis. Didn't get started until about 12:30 and done about 3. Then it was off to ultrasound. The tech was, once again, a very nice interesting lady and we had a great conversation while she worked. I didn't press her for any conclusions as she isn't supposed to offer any opinions. Hope to hear something tomorrow.
Back in my room I was welcomed by clean bedclothes and meds for the headache brought on by the photopheresis. I'm really bad at headaches so I was glad for that. Also there was supper, GVHB1 diet but food none the less. There was no popsicle but Nurse J managed to dig out. Literally dig out as someone had spilled something in the freezer.
Kathi also had a pretty good afternoon. She finally slowed up and bit and walked around her yard to enjoy her hard work. She sounded great when we talked on the phone earlier. I was so glad to hear her sound that way.
So on the whole a pretty good day. Tomorrow starts with the early meds and breakfast. Granted it will be chicken broth and lemon jello but at least its food. Here's hoping it's another good day for all of us.
Boone
As it not unusual we had to wait on some meds from the pharmacy to start the photopheresis. Didn't get started until about 12:30 and done about 3. Then it was off to ultrasound. The tech was, once again, a very nice interesting lady and we had a great conversation while she worked. I didn't press her for any conclusions as she isn't supposed to offer any opinions. Hope to hear something tomorrow.
Back in my room I was welcomed by clean bedclothes and meds for the headache brought on by the photopheresis. I'm really bad at headaches so I was glad for that. Also there was supper, GVHB1 diet but food none the less. There was no popsicle but Nurse J managed to dig out. Literally dig out as someone had spilled something in the freezer.
Kathi also had a pretty good afternoon. She finally slowed up and bit and walked around her yard to enjoy her hard work. She sounded great when we talked on the phone earlier. I was so glad to hear her sound that way.
So on the whole a pretty good day. Tomorrow starts with the early meds and breakfast. Granted it will be chicken broth and lemon jello but at least its food. Here's hoping it's another good day for all of us.
Boone
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