Good News Item #1: This year is almost done. Not that there is any
correlation between grace/luck and a made-up calendar... but hey... this
year is almost done.
Good News Item #2: Hemoglobin
remains stable with no outside influence and white cells are up above 5
for the first time in quite awhile. Platelets are still down, and I can
probably put a positive spin on that, but I won't.
Good News Item #3: The coffee at the IV center is much better today that other days.
I'll
go see the primary doctor later today to get a referral for more
physical therapy. He can let me know what he thinks of my joints too.
I'm probably not ready for the slalom course at Breckenridge.
I've
been looking at whether to do some medication and possibly tai chi as a
way to regain focus control and related mental issues.
Monday, December 31, 2012
30 December 2012
This weekend has been one of waiting for Monday while also dealing with major discomforts below the lower back... right leg, sacrum, left leg, etc.
There is a theory in my head that all this discomfort and pain comes from my marrow kicking into gear and making cells... but I suspect there might be some wishful thinking going on there.
I did manage a haircut Saturday.
There is a theory in my head that all this discomfort and pain comes from my marrow kicking into gear and making cells... but I suspect there might be some wishful thinking going on there.
I did manage a haircut Saturday.
Friday, December 28, 2012
28 December 2012 - Friday
I start the day with a picture I took one day at Maui Plantation... a resident kingfisher keeping an eye on some big fish. You gotta do what you do, one-legged or not.
------
Platelets today hit 4, but the good news is that hemoglobin has actually risen above 9 on its own from 8.5 the other day. White cells are somewhat low but not over the threshold and about stable from earlier this week. So, I'm hanging in the chair getting those little guys and then I should be on my way.
------
Platelets today hit 4, but the good news is that hemoglobin has actually risen above 9 on its own from 8.5 the other day. White cells are somewhat low but not over the threshold and about stable from earlier this week. So, I'm hanging in the chair getting those little guys and then I should be on my way.
Thursday, December 27, 2012
27 December 2012
Had an interesting night at the hotel outside the airport.... right on the Nimitz Highway. I was not bothered by any nurses, or housekeeping, or food service, etc. At one point I realized, I could expire there and nobody would know until morning. Nice thought... anyway... I woke up a few times. Even dreamed about work... got on the bus at 6am and now I'm home. Had a nap and now ready to go get my PICC Line checked at the hospital and drop prescriptions on Walgreens for the new drugs.
Tomorrow, I'll assume I need platelets and I'll cross my fingers and hope I don't need Neupogen shots or red blood cells.
Tomorrow, I'll assume I need platelets and I'll cross my fingers and hope I don't need Neupogen shots or red blood cells.
Wednesday, December 26, 2012
26 December 2012
Waking in pain at the hips isn't going to keep me from going home... which is the plan for today after some platelets and antibiotics.
------ pause
It's been interesting, but my butt is in a seat at the gate. The hospital authorized me to leave today and then I discovered that all flights from Honolulu to Kahului had been booked. I worked my way through all the airlines and monitored all websites and at 2:10pm I nailed a flight leaving at 4:00 pm on Go Airlines. A flurry of supportive hospital activity and a fast taxi driver and I made it, to then discover the flight is delayed already 30 minutes. This left time for a Quiznos sandwich and a blog entry.
Looking forward to being home.
The PICC Line seems in good shape and will make transfusions easier, but there is the daily care. If it isn't so great, I'll have it removed.
Now, it's a waiting game to see what happens in the numbers.
Today, platelets were at 2K and hemoglobin / white cells were stabilized. That could be seen as a good sign, despite the low platelet number. I'll cross my fingers and hope for some kind of good response.
------ pause
It's been interesting, but my butt is in a seat at the gate. The hospital authorized me to leave today and then I discovered that all flights from Honolulu to Kahului had been booked. I worked my way through all the airlines and monitored all websites and at 2:10pm I nailed a flight leaving at 4:00 pm on Go Airlines. A flurry of supportive hospital activity and a fast taxi driver and I made it, to then discover the flight is delayed already 30 minutes. This left time for a Quiznos sandwich and a blog entry.
Looking forward to being home.
The PICC Line seems in good shape and will make transfusions easier, but there is the daily care. If it isn't so great, I'll have it removed.
Now, it's a waiting game to see what happens in the numbers.
Today, platelets were at 2K and hemoglobin / white cells were stabilized. That could be seen as a good sign, despite the low platelet number. I'll cross my fingers and hope for some kind of good response.
Tuesday, December 25, 2012
25 December 2012
Merry Christmas to Family and Friends from my hospital bed.
It's possible I'll head home today but also possible I won't.
An odd experience to hang on Christmas Day alone. Oxygen issues have me staying for awhile and some cloudiness on my chest x-ray. Until that seems clear, I'm here.
The good news is that today's blood counts are much better than any since arriving. Platelets stayed high for a day at 20 after being at 3 from transfusion yesterday. Hemoglobin is steady at 8.7. White cells are actually up to 1.9 from 1.7.
Hope you all had a lovely Christmas.
It's possible I'll head home today but also possible I won't.
An odd experience to hang on Christmas Day alone. Oxygen issues have me staying for awhile and some cloudiness on my chest x-ray. Until that seems clear, I'm here.
The good news is that today's blood counts are much better than any since arriving. Platelets stayed high for a day at 20 after being at 3 from transfusion yesterday. Hemoglobin is steady at 8.7. White cells are actually up to 1.9 from 1.7.
Hope you all had a lovely Christmas.
Monday, December 24, 2012
24 December 2012
I won't be going home today.
Woke up with degraded oxygen in blood at 3am so we went through some investigation of that and hooked me up to the O2. That helped and also got me under the X-Ray and set up for a CT Scan. Three theories include: water collecting in lungs as a typical side effect of the Atgam, infection, bleeding near the lungs. Now it's later and I believe the CT Scan shows a leaning toward theory 1.
The hip was hurting as well and the doctor set me up for a MRI of the hip area. This turned into a 45 minute journey in the tube... wow. That was a long trip. It had a pretty cool TV goggles for entertainment.
The name of the game is to get me stable for a safe flight home.
Platelets were added, but I didn't get the count that was taken prior. They drew blood cultures too for an infection sampl
Woke up with degraded oxygen in blood at 3am so we went through some investigation of that and hooked me up to the O2. That helped and also got me under the X-Ray and set up for a CT Scan. Three theories include: water collecting in lungs as a typical side effect of the Atgam, infection, bleeding near the lungs. Now it's later and I believe the CT Scan shows a leaning toward theory 1.
The hip was hurting as well and the doctor set me up for a MRI of the hip area. This turned into a 45 minute journey in the tube... wow. That was a long trip. It had a pretty cool TV goggles for entertainment.
The name of the game is to get me stable for a safe flight home.
Platelets were added, but I didn't get the count that was taken prior. They drew blood cultures too for an infection sampl
23 December 2012
Some days just test you.
After a smooth 3rd treatment last night ending at midnight, it seemed like a good day ahead. Rather, I woke up on my side with chills and a fever. A delayed response to the Atgam. A flurry of other symptoms filled my morning, reminding me this is not a cakewalk.
Keeping in the spirit of not complaining, I'll simply add... I'm ready for this hospital visit to be over, and I'll realize there are several patients here for cancer treatments that won't be leaving for a month or more.
After a smooth 3rd treatment last night ending at midnight, it seemed like a good day ahead. Rather, I woke up on my side with chills and a fever. A delayed response to the Atgam. A flurry of other symptoms filled my morning, reminding me this is not a cakewalk.
Keeping in the spirit of not complaining, I'll simply add... I'm ready for this hospital visit to be over, and I'll realize there are several patients here for cancer treatments that won't be leaving for a month or more.
Saturday, December 22, 2012
22 December 2012
Another day in Oahu. Finished dose number two of Atgam at about 530am with no fever or other side effects. For some reason, however, I remained in bed... too long most likely. Later, I noticed I'd picked up some pain in my chest / lower sternum. Doctor wasn't too worried. General feeling was I was in bed too long in a row. By the time I found this out, I was getting chilled and couldn't get out of bed... I asked for a warm blanket and that helped after an hour of warming up. Ate some lunch and went for a stroll with the physical therapist. That helped and I went for another to extend that feeling, this time to the cafeteria to grab up some snacks...
Watched Elizabeth with Cate Blanchett and Clive Owen on DVD. Started up The Thin Red Line for later.
Tonight's Atgam would start at 530 pm, so they had my on a schedule. I snuck im a shower and another walk and made the deadline. A dose of IV Benadryl throws me for a loop and at 630 I'm awake again.
Watched Elizabeth with Cate Blanchett and Clive Owen on DVD. Started up The Thin Red Line for later.
Tonight's Atgam would start at 530 pm, so they had my on a schedule. I snuck im a shower and another walk and made the deadline. A dose of IV Benadryl throws me for a loop and at 630 I'm awake again.
Friday, December 21, 2012
21 December 2012 - End of the World
The overnight treatment was a struggle due to having a fever and some
severe pains. I managed to get 2hr and 3hr chunks of sleep. The fever
is a common side effect of the Atgam treatment. Over the course of
today, those have both dissipated some. Tonight I'm not in as much
pain. The doctor says this is the prednisone steroid treatment, which can help joints and such with pain.. okay.
Today's blood test revealed that the hemoglobin count was at 7.8, so I should infuse red blood cells.
Those are in now... I'm doped.
The pictures shows my last meal before the end of the world.
Later in the night they start up dose #2 of Atgam for an 8 hour infusion to start it in faster. Another shot of Benadryl going straight to my brain. I informed the nurse that she won't be hearing many more coherent remarks from me.
Out at 11pm.
Today's blood test revealed that the hemoglobin count was at 7.8, so I should infuse red blood cells.
Those are in now... I'm doped.
The pictures shows my last meal before the end of the world.
Later in the night they start up dose #2 of Atgam for an 8 hour infusion to start it in faster. Another shot of Benadryl going straight to my brain. I informed the nurse that she won't be hearing many more coherent remarks from me.
Out at 11pm.
20 December 2012
Oahu day
Very quick review.
Got here at 930am and zipped to hospital, checked in and got into room. Private room. Same as before.
Worked through the steps to get to the IV treatment. Received platelets after the 4K platelet count. It was somewhat worrisome to make the flight after not really knowing the count. I think it went well,
L stayed hone to tend to her condition but will likely travel out Saturday to sit with me.
A new feature is the PICC line in my arm. This is run up to the Central Vein in my chest via a vein in my right arm. A specialist nurse does this and it went well. I expected more discomfort but maybe it helped that she used the numb arm. What this does it set up a bendable IV in my arm that can be left there all weekend. They can easily access the IV anytime and no additional pokes are needed.
Now it's night. There were several prep items, such as a testing for reactions using a TB-like test in my skin to see how it reacts.
Very quick review.
Got here at 930am and zipped to hospital, checked in and got into room. Private room. Same as before.
Worked through the steps to get to the IV treatment. Received platelets after the 4K platelet count. It was somewhat worrisome to make the flight after not really knowing the count. I think it went well,
L stayed hone to tend to her condition but will likely travel out Saturday to sit with me.
A new feature is the PICC line in my arm. This is run up to the Central Vein in my chest via a vein in my right arm. A specialist nurse does this and it went well. I expected more discomfort but maybe it helped that she used the numb arm. What this does it set up a bendable IV in my arm that can be left there all weekend. They can easily access the IV anytime and no additional pokes are needed.
Now it's night. There were several prep items, such as a testing for reactions using a TB-like test in my skin to see how it reacts.
Wednesday, December 19, 2012
19 December 2012
Today everything changes.
Bone marrow biopsy results came back. Doctor went through the results and said that, unlike the previous two bone marrow biopsies, this one indicates "empty" bone marrow. This means production of blood cells is failing due to sick bone marrow. T-Cells are attacking the cells before they can get anywhere, which is why all cell forms are giving low reads now. After some discussion, it seems this has been the problem for some time but it's common for the indicators of this problem to take awhile to show. I had been concerned about lymphoma, but he said leukemia and lymphoma are ruled out. So, the diagnosis is "aplastic anemia" not ITP.
There is a mainline treatment for this that involves transfusion by IV of antibodies that were developed for fighting T-Cells that do this. It's a four-day treatment. He recommended immediate attention to this. To drop all current treatments. I'll go to Oahu tomorrow and start right off. It's supposedly a straightforward process that entails just being admitted to the hospital and hanging out, getting the treatment each day, watching TV, etc. I should be home on Christmas Eve. Lisa can't really fly due to her condition, but might come out the last couple days. Play it by ear.
After the four days of treatment, I'd come back to Maui and continue transfusions and monitor platelets and then stop transfusions when things head upward.
Pain in the hip was quite severe this morning and the doctor upped me to Percocet to deal with that. This has really affected the sleep cycle, so hopefully I'll get some zzzzz's before going to Honolulu tomorrow.
Bone marrow biopsy results came back. Doctor went through the results and said that, unlike the previous two bone marrow biopsies, this one indicates "empty" bone marrow. This means production of blood cells is failing due to sick bone marrow. T-Cells are attacking the cells before they can get anywhere, which is why all cell forms are giving low reads now. After some discussion, it seems this has been the problem for some time but it's common for the indicators of this problem to take awhile to show. I had been concerned about lymphoma, but he said leukemia and lymphoma are ruled out. So, the diagnosis is "aplastic anemia" not ITP.
There is a mainline treatment for this that involves transfusion by IV of antibodies that were developed for fighting T-Cells that do this. It's a four-day treatment. He recommended immediate attention to this. To drop all current treatments. I'll go to Oahu tomorrow and start right off. It's supposedly a straightforward process that entails just being admitted to the hospital and hanging out, getting the treatment each day, watching TV, etc. I should be home on Christmas Eve. Lisa can't really fly due to her condition, but might come out the last couple days. Play it by ear.
After the four days of treatment, I'd come back to Maui and continue transfusions and monitor platelets and then stop transfusions when things head upward.
Pain in the hip was quite severe this morning and the doctor upped me to Percocet to deal with that. This has really affected the sleep cycle, so hopefully I'll get some zzzzz's before going to Honolulu tomorrow.
Tuesday, December 18, 2012
18 December 2012
Today is better than yesterday.
The snacks at the Infusion Center are nice too... lemon bars... mmmmm. While that might read bad... I still maintain a diet full of nutritious foods.
Last night I loaded up on Vicodin and parked on the couch. Luckily, The Longest Day was on and I was able to enjoy that as the Vicodin meandered its way through my system. It took effect and I was able to grab 4.5 solid hours of sleep. The pain in my hip and knee seems to have migrated to my sacrum.
Nobody ever writes a comment on my blog.
Tomorrow is supposedly when the biopsy results roll in.
My literature blog is full of drafts, so I sent two out last week just to get something on there.
Today, I'm having IV/IG... second one since the one 10 days ago. Not sure when to expect results. I think it takes awhile to respond... like a month, but of course I'm hoping for sooner. At least they have come up with a formula that speeds it up to a 3-hour gid instead of the 5 hours it was the first time I got it. When the nurse showed me the IV bag and it said "immunoglobulin (human)" and said they stopped using the "alien" kind, I was amused.
I'll try to work after this.. maybe check some work emails and talk about some upcoming briefings.
Keeping the faith....
The snacks at the Infusion Center are nice too... lemon bars... mmmmm. While that might read bad... I still maintain a diet full of nutritious foods.
Last night I loaded up on Vicodin and parked on the couch. Luckily, The Longest Day was on and I was able to enjoy that as the Vicodin meandered its way through my system. It took effect and I was able to grab 4.5 solid hours of sleep. The pain in my hip and knee seems to have migrated to my sacrum.
Nobody ever writes a comment on my blog.
Tomorrow is supposedly when the biopsy results roll in.
My literature blog is full of drafts, so I sent two out last week just to get something on there.
Today, I'm having IV/IG... second one since the one 10 days ago. Not sure when to expect results. I think it takes awhile to respond... like a month, but of course I'm hoping for sooner. At least they have come up with a formula that speeds it up to a 3-hour gid instead of the 5 hours it was the first time I got it. When the nurse showed me the IV bag and it said "immunoglobulin (human)" and said they stopped using the "alien" kind, I was amused.
I'll try to work after this.. maybe check some work emails and talk about some upcoming briefings.
Keeping the faith....
Monday, December 17, 2012
17 December 2012
A few days later. Neupogen really gets to me. I've had constant pain in my hip and sometimes in my knee (both on the right) since having that last shot Friday. Today, I got to the hospital and have been pretty lethargic sitting here for hours due to a lack of sleep for three nights... sparse sleep. Hemoglobin is just under the threshold, so I am being loaded with two units. Platelets were 2K and a unit of those is in. N-Plate shot delivered. Tomorrow, they'll fit the IV/IG in since there was not enough time today. Whew.
I don't like being this sore. Immobilized nearly. However, I suppose that's an exaggeration since I managed to fit in a Costco trip yesterday.
I don't like being this sore. Immobilized nearly. However, I suppose that's an exaggeration since I managed to fit in a Costco trip yesterday.
Thursday, December 13, 2012
13 December 2012
Today is devoted to the Neupogen injection. A brand name for filgrastim, Neupogen helps me grow neutrophils, which are the little guys that fight off bacterial infections. Colorful, eh? (copied from wikipedia... so it's subject to that level of accuracy).
While I like fighting off infections... I surely don't like the joint pain this little sucker causes... hitting my hip joint last night and who knows what I'll get tonight. It's a three-day regimen I get when my level dips below 0.7... yesterday it was 0.38, so today I got the second of three shots.
No other tests today, but I did receive my textbook called Janeway's ImmunoBiology. I'll be reading this sucker for days, learning about how innate and adaptive immune responses work. Maybe I'll uncover why my poor little platelets and, now, other blood cells are under blitzkrieg.
The bone marrow excavation hole is a bit swollen but seems okay from yesterday.
Wednesday, December 12, 2012
12 12 12
Of course, I've got to post something on 12 12 12... if I wasn't being poked with an invasive marrow-sucking needle at 12:12... I would have posted at that time... but alas, that's what was happening at that monumental time in human history.
WARNING: Graphic description follows
So, first I had to lay face down and get a bullseye painted on my left back hip... not really, but the circular motion of the cleaning solution felt like that's what was going on...the first needle poke is to start the numbing process... lidocaine injection.. a 7 out of 10 on the poke-pain scale. But it's brief and the fluid flow is quick. After that, the numbing begins so the 10 more injections (or whatever it is) don't hurt so much as he pushes the numbing agent deeper and deeper. Next is the marrow extraction needle insertion... burrowing down into the bone. I really have no idea what's really happening, but it feels like a hand-cranked drilling process to embed the device into my hip bone... then it's "ready?" and the doc pulls the marrow out.. counting the cc's to get to the goal for the biopsy test. He watches for the wincing on my face, and I don't disappoint him. It's not a fun feeling.. the pressure and soreness and overall weirdness of having something pulling at your internal structure. He's done with that spot pretty fast and screws into a new spot for round two... in, ouch, out... done. Clean it up and flip back over... and sit on the sore spot for 20 minutes...
They offered morphine originally, but I passed. It's a trade off... the spot is sore and I'm not liking it... but it's over and I'm not drugged. I think I made the right choice... same choice and the previous two.
Results due next week with two things as items of interest... is the immune system attacking in the marrow and that's why all cell types are being affected? and is there a cloned t-cell present that's developed over time that's doing the attacking? This process sucks, but I'm liking the data goals.
Platelet count today is 4 with hemoglobin up a tad from Monday... still sustaining that one-unit from Friday... so that's the one piece of good news today as I look at neutrophils at a level that's going to cause me to get the three-shot treatment to get those popped back up. Neutrophils are the cells that fight infections... so they like me keeping those higher. I like it too and, apparently, claritin helps alleviate the pains that might come with that. We'll see. It's two more shots of that stuff followed by the scheduled N-Plate on Friday.
WARNING: Graphic description follows
So, first I had to lay face down and get a bullseye painted on my left back hip... not really, but the circular motion of the cleaning solution felt like that's what was going on...the first needle poke is to start the numbing process... lidocaine injection.. a 7 out of 10 on the poke-pain scale. But it's brief and the fluid flow is quick. After that, the numbing begins so the 10 more injections (or whatever it is) don't hurt so much as he pushes the numbing agent deeper and deeper. Next is the marrow extraction needle insertion... burrowing down into the bone. I really have no idea what's really happening, but it feels like a hand-cranked drilling process to embed the device into my hip bone... then it's "ready?" and the doc pulls the marrow out.. counting the cc's to get to the goal for the biopsy test. He watches for the wincing on my face, and I don't disappoint him. It's not a fun feeling.. the pressure and soreness and overall weirdness of having something pulling at your internal structure. He's done with that spot pretty fast and screws into a new spot for round two... in, ouch, out... done. Clean it up and flip back over... and sit on the sore spot for 20 minutes...
They offered morphine originally, but I passed. It's a trade off... the spot is sore and I'm not liking it... but it's over and I'm not drugged. I think I made the right choice... same choice and the previous two.
Results due next week with two things as items of interest... is the immune system attacking in the marrow and that's why all cell types are being affected? and is there a cloned t-cell present that's developed over time that's doing the attacking? This process sucks, but I'm liking the data goals.
Platelet count today is 4 with hemoglobin up a tad from Monday... still sustaining that one-unit from Friday... so that's the one piece of good news today as I look at neutrophils at a level that's going to cause me to get the three-shot treatment to get those popped back up. Neutrophils are the cells that fight infections... so they like me keeping those higher. I like it too and, apparently, claritin helps alleviate the pains that might come with that. We'll see. It's two more shots of that stuff followed by the scheduled N-Plate on Friday.
Monday, December 10, 2012
10 December 2012
Easy-going Monday anchored on very little sleep. Sat peacefully at the Infusion Center and soaked up more platelets after a 4K reading and 8.2 hemoglobin. The H lasted through the weekend from the one unit. I'll note that other times when two units were taken, the H count still quickly made its way back to mid-8s, so I'm pleased that only one unit kept me above 8. We'll see how it is on Monday and whether there is a sign of sustainability.
I still subscribe to the theory that perhaps the transfusions are getting in the way of normal body response to the treatment.
Tomorrow, I meet with Dr. Rogers about the brain issue / status.
I still subscribe to the theory that perhaps the transfusions are getting in the way of normal body response to the treatment.
Tomorrow, I meet with Dr. Rogers about the brain issue / status.
Sunday, December 9, 2012
9 December 2012
Time is sure ticking away as the year moves on. This morning, a cool breeze moves the stuffiness from the house as the aroma of sizzling bacon nearby permeates the breeze. If only the fine smells of daily life could burrow through the skin and wrap a protective shield around the cells of blood flowing in me.
Anyway, the focus today is on whether I have any energy. At least it started that way. Sometimes that evolves to whether I have any niceness in me, but hey... I'm sure it's there somewhere. The energy seems alright. I've tested it twice outside with the weeds around. My concern is the hemoglobin and the choice to just get one unit Friday. At least the risky situation they described hasn't happened, but it's not like I'm out surfing. As if I could.
Friday, another piece of news is the desire to get another bone marrow biopsy. Yay! This is due to concern for the fact that all three blood components have reduced numbers... my immune system has become an indiscriminate killer. What would they say on Criminal Minds? It's evolved? hehe. Anyway... Wednesday is the joyous day for that. I nixed the morphine-based approach for a local. It seemed to work out well the two other times.
Happy Sunday!!!!
Anyway, the focus today is on whether I have any energy. At least it started that way. Sometimes that evolves to whether I have any niceness in me, but hey... I'm sure it's there somewhere. The energy seems alright. I've tested it twice outside with the weeds around. My concern is the hemoglobin and the choice to just get one unit Friday. At least the risky situation they described hasn't happened, but it's not like I'm out surfing. As if I could.
Friday, another piece of news is the desire to get another bone marrow biopsy. Yay! This is due to concern for the fact that all three blood components have reduced numbers... my immune system has become an indiscriminate killer. What would they say on Criminal Minds? It's evolved? hehe. Anyway... Wednesday is the joyous day for that. I nixed the morphine-based approach for a local. It seemed to work out well the two other times.
Happy Sunday!!!!
8 December 2012
On 6 December, I had a wonderful post here. It got posted and then I found a way to delete it. Nice. Now it's nearly the 9th... late on the 8th, and I need to catch things up.
Thursday started at the dentist with a consultation to assess my number face/jaw. As it turns out, my jaw is not numb and it's only my face nerves. So I have a referral to a facial surgeon to take a look. I'll work that later. The neurologist wants to meet again next week so I'll let him poke my face a bit and tell me if that referral is a good one for what I need.
The rest of the day was spent with an IVIG treatment. This will be a monthly IV treatment that works as part of the immune suppression treatment. It's a immuno-globulin transfusion and I'm still needing to read up on this. I've had it before 2.5 years ago after the prednisone sent my platelet count plummeting.
While there on Thursday, the platelets read in at 13K... some still remaining from the Wednesday transfusion.
Friday, I went in for another platelet treatment and started with a 4K platelet count. Not as bad as the 1K or 2K from previous. Hemoglobin was down to 7.5 though, with 8 as the threshold that makes them want to fill me with new blood. I worked against this because I'm feeling like I need to let my body do its work. However, we compromised on one unit instead of the usual two and I got banded for another in case of emergency over the weekend. So far, I'm feeling okay with somewhat degraded energy.
Thursday started at the dentist with a consultation to assess my number face/jaw. As it turns out, my jaw is not numb and it's only my face nerves. So I have a referral to a facial surgeon to take a look. I'll work that later. The neurologist wants to meet again next week so I'll let him poke my face a bit and tell me if that referral is a good one for what I need.
The rest of the day was spent with an IVIG treatment. This will be a monthly IV treatment that works as part of the immune suppression treatment. It's a immuno-globulin transfusion and I'm still needing to read up on this. I've had it before 2.5 years ago after the prednisone sent my platelet count plummeting.
While there on Thursday, the platelets read in at 13K... some still remaining from the Wednesday transfusion.
Friday, I went in for another platelet treatment and started with a 4K platelet count. Not as bad as the 1K or 2K from previous. Hemoglobin was down to 7.5 though, with 8 as the threshold that makes them want to fill me with new blood. I worked against this because I'm feeling like I need to let my body do its work. However, we compromised on one unit instead of the usual two and I got banded for another in case of emergency over the weekend. So far, I'm feeling okay with somewhat degraded energy.
Wednesday, December 5, 2012
5 December 2012
What a blah drab blog this has been lately.. and sparse as well. What is the deal?
Today it's IV platelet day and I'm just hooked up. Hanging out watching a cooking show with some spicy meatballs being the primary feature.
Aches and pains have been the dominant force lately, affecting nighttime sleep and just about every other daily movement / activity. Tylenol PM has been a little helper in that the past two nights, affording me 4-hour blocks of rest and then some. The right side is really hyperactive lately, reacting to breezes and other stimuli and then stiffening in a way that grabs at me as if somebody is wrapping me up on that side with shrink wrap. Wrapping up in a thick blanket for a bit seems to calm that and the salt water swishes help the numb lip reactions. Tactics. That's what this is... an ongoing tactics development to address all these annoyances that pop up.
I got the letter from Stanford. They are ready to cut my brain open as soon as the platelet problem is fixed. Yay!
Treatment update. Still two-a-day CellCept pills working the immune suppression. The plan is to hit me with a N-Plate shot to help boost platelet production on Friday. That will be a weekly deal. Then, Monday will feature the first of monthly IVIG treatments to work against B-Cell effectiveness.
-----
Platelet count for today prior to transfusion = 1K. This is the lowest I have ever had so that was not good news. The IVIG will now be tomorrow. Doctor says to not panic and that my body has obviously figured out a way for clotting without platelets as evidenced by less bruising and marking on my skin.
Today it's IV platelet day and I'm just hooked up. Hanging out watching a cooking show with some spicy meatballs being the primary feature.
Aches and pains have been the dominant force lately, affecting nighttime sleep and just about every other daily movement / activity. Tylenol PM has been a little helper in that the past two nights, affording me 4-hour blocks of rest and then some. The right side is really hyperactive lately, reacting to breezes and other stimuli and then stiffening in a way that grabs at me as if somebody is wrapping me up on that side with shrink wrap. Wrapping up in a thick blanket for a bit seems to calm that and the salt water swishes help the numb lip reactions. Tactics. That's what this is... an ongoing tactics development to address all these annoyances that pop up.
I got the letter from Stanford. They are ready to cut my brain open as soon as the platelet problem is fixed. Yay!
Treatment update. Still two-a-day CellCept pills working the immune suppression. The plan is to hit me with a N-Plate shot to help boost platelet production on Friday. That will be a weekly deal. Then, Monday will feature the first of monthly IVIG treatments to work against B-Cell effectiveness.
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Platelet count for today prior to transfusion = 1K. This is the lowest I have ever had so that was not good news. The IVIG will now be tomorrow. Doctor says to not panic and that my body has obviously figured out a way for clotting without platelets as evidenced by less bruising and marking on my skin.
Monday, December 3, 2012
2 December 2012
Knowing I had a p-count of 2 on Friday, the doctor requested I get checked on Sunday. If it's too low Sunday, get a transfusion.
It's Sunday, the read was 2 and I checked into the ER to get a transfusion.
It's Sunday, the read was 2 and I checked into the ER to get a transfusion.
Saturday, December 1, 2012
1 December 2012
Three months after the stroke.
Started Cell Cept today. Two pills down. Not an easy feeling today. Just relaxing and planning for blood test Sunday. Hopefully things have stayed up.
Started Cell Cept today. Two pills down. Not an easy feeling today. Just relaxing and planning for blood test Sunday. Hopefully things have stayed up.
30 November 2012
Hello Blog World. Friday afternoon in the IV chair. Platelets going to flow after the prep work. That consists now of benadryl, steroid and zantac... wow... stay away allergies.
Test results from today were a bit of a slap in the face: 2 for platelets. That's the lowest since the stroke. I think perhaps I'm just weary and malnourished this week. I'll start fixing that right away tonight. It's time to start the Cell Cept as well. So that little pill is going in later.
Test results from today were a bit of a slap in the face: 2 for platelets. That's the lowest since the stroke. I think perhaps I'm just weary and malnourished this week. I'll start fixing that right away tonight. It's time to start the Cell Cept as well. So that little pill is going in later.
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