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.
Thursday, November 29, 2012
29 November 2012
Low hemoglobin has sent me back to the chair and here I sit, new red cells flowing. No tests today. Yesterday had me at a platelet count of 3 and low neutrophils as well. The shot for that created a great soreness in my joints that reminded me of things until about 1am last night. Alas, I slept, I'm here and I'm going to conduct some work until my brain gets groggy from the pill.
Tuesday, November 27, 2012
27 November 2012
Tuesdays seem to be good days usually. My mouth is giving me the most aggravation today... feels like a dead fruit for a chin... but I ate hot enchiladas for lunch anyway. A small rebellion against whatever forces are f*ing with me today. I followed up with cheesecake though to take the edge off... hehe.
Got a call from Dr. Steinberg at Stanford University Medical Center... he's had his team review the MRI results sent to him and they can now confirm that my problem is a cavernous malformation in the brain stem. Previously, they could not yet rule out a tumor due to the blood clutter caused by the previous bleeding stroke. I was told about the operation procedure to fix this and it seems pretty straightforward while also requiring world-class expertise. It only requires a small incision and a then detachment and reattachment of a small piece of my skull to get that malformation out and fixed. Bing bang boom... hehe. About 10 days in the Bay Area and I'm done. Anyway, I reminded them that I have no platelets and got the medical equivalent of "oh... yeah.... that's right" --- "let us remind the doctor of that and we'll send out the recommendation soon". So... I think this procedure will be delayed until the ITP is dealt with... however, it wouldn't shock me if these guys have a way to do it anyway... after all, it is the reason why I can't get below 3 on platelets.
I just looked up at the TV and I see naked people protesting in crowds... that has to be CA.
Got a call from Dr. Steinberg at Stanford University Medical Center... he's had his team review the MRI results sent to him and they can now confirm that my problem is a cavernous malformation in the brain stem. Previously, they could not yet rule out a tumor due to the blood clutter caused by the previous bleeding stroke. I was told about the operation procedure to fix this and it seems pretty straightforward while also requiring world-class expertise. It only requires a small incision and a then detachment and reattachment of a small piece of my skull to get that malformation out and fixed. Bing bang boom... hehe. About 10 days in the Bay Area and I'm done. Anyway, I reminded them that I have no platelets and got the medical equivalent of "oh... yeah.... that's right" --- "let us remind the doctor of that and we'll send out the recommendation soon". So... I think this procedure will be delayed until the ITP is dealt with... however, it wouldn't shock me if these guys have a way to do it anyway... after all, it is the reason why I can't get below 3 on platelets.
I just looked up at the TV and I see naked people protesting in crowds... that has to be CA.
Monday, November 26, 2012
26 November 2012
Monday morning with platelets with a platelet read of 4.
Everything was going well until the end and then... bam... allergic reaction. Ugh.
Took awhile, but got that to subside. I can say that steroids don't seem to do squat to help me with that, but I should at least have a few dumbells handy to work my arms when I get those injections.
CellCept is still on hold while Lisa recovers from viral meningitis and I keep myself from getting it. After that drug starts, then I guess the IVIG goes and we're on the treatment path again.
Antibiotics for H.Pylori ended Sunday.
Everything was going well until the end and then... bam... allergic reaction. Ugh.
Took awhile, but got that to subside. I can say that steroids don't seem to do squat to help me with that, but I should at least have a few dumbells handy to work my arms when I get those injections.
CellCept is still on hold while Lisa recovers from viral meningitis and I keep myself from getting it. After that drug starts, then I guess the IVIG goes and we're on the treatment path again.
Antibiotics for H.Pylori ended Sunday.
Friday, November 23, 2012
23 November 2012
Today had a significant plan that might be thwarted by circumstances. I was supposed to start the CellCept drug already and then today would be an IVIG transfusion (plasma-derived immunoglobulin) and a N-Plate shot. However... my body seems to have eradicated many of the petichae I had earlier this week, indicating a decent chance of a higher platelet count. The hospital doesn't have the N-Plate yet in stock. I haven't taken the CellCept due to a worry I have for how it will interact with the amoxocillin I'm taking for the H.Pylori. That ends today, so I can start CellCept if needed soon. The IVIG was supposed to follow-up the CellCept, so then maybe that waits until next week. I am also curious about my platelet count today due to the clearing of my skin. Soooooo... I'm sitting here waiting for those results.
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Update: Platelet count is 4... so the transfusion is on the way.
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Update: Platelet count is 4... so the transfusion is on the way.
Thursday, November 22, 2012
22 November 2012 - Thanksgiving Day
Happy Thanksgiving. A day for noting blessings and not dwelling on impediments.
I will note that prior to its trendy use in the U.S., "Black Friday" was used as another term for Good Friday, the day to recognize the crucifixion of Jesus. In a country supposedly so full of Christians, why does that term seem to catalyze such crazy behavior?
I will note that prior to its trendy use in the U.S., "Black Friday" was used as another term for Good Friday, the day to recognize the crucifixion of Jesus. In a country supposedly so full of Christians, why does that term seem to catalyze such crazy behavior?
Wednesday, November 21, 2012
21 November 2012
Started the day with an early appointment for platelets. The read today... 4K. That's after a 7K yesterday. Bummer. Now the platelets are flowing in and I'm getting an allergic reaction. That seems to happen for maybe one out of eight transfusions. So if my words tail off, it's due to a Benadry injection... yay.
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Update: This reaction was the worst I've had. Double doses of Benadryl and finally followed by a steroid shot. That cleared it up until I went home. Then, I started a new rash and got worried. Hit it with another Benadryl and it cleared up. That sucked. I spent hours on the couch watching Pawn Stars.
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Update: This reaction was the worst I've had. Double doses of Benadryl and finally followed by a steroid shot. That cleared it up until I went home. Then, I started a new rash and got worried. Hit it with another Benadryl and it cleared up. That sucked. I spent hours on the couch watching Pawn Stars.
Tuesday, November 20, 2012
20 November 2012
Wow... I'm delinquent.
It's Tuesday.
The experiment didn't work out because Monday was a 5... ambiguous. I could have tried to skip the transfusion, but they were insistent due to an issue with a bleed on my lower lip. Hemoglobin was low so now I'm tied to the IV for two units of blood. I hold on to the hypothesis from before, but I don't know if I'll be able to stretch over Thanksgiving Day.
The lip is somewhat better today.
Friday will be the start of a triple threat immune suppression plan...
IV/IG treatment to address B cells and macrophages
Cell-Cept pill to address T cells
N-Plate to assist with platelet production
It's Tuesday.
The experiment didn't work out because Monday was a 5... ambiguous. I could have tried to skip the transfusion, but they were insistent due to an issue with a bleed on my lower lip. Hemoglobin was low so now I'm tied to the IV for two units of blood. I hold on to the hypothesis from before, but I don't know if I'll be able to stretch over Thanksgiving Day.
The lip is somewhat better today.
Friday will be the start of a triple threat immune suppression plan...
IV/IG treatment to address B cells and macrophages
Cell-Cept pill to address T cells
N-Plate to assist with platelet production
Saturday, November 17, 2012
17 November 2012
The Friday platelet read was a 9, prompting some consideration for the alternating up/down readings lately. A hypothesis emerges. What if the transfusions are actually interfering with the body's push to make more platelets following the splenectomy?
Take this week for example. M is 8, W is 3, Th is 3 and Fr is 9. So, three days after a Friday transfusion, I'm up to 8. Two days after that I'm at 3 and get another transfusion. Then the very next day I'm back at 3 and then one day after that, back at 9. The transfusions are foreign platelets in my body, so what if my body is going into hyper immune mode to deal with that and there is collateral damage to the platelets my body is actually making? Then it settles out and my body platelets start to rise? Anyway, I proposed we check Monday and if it's up again, I skip the transfusion and check again on Tuesday. I think that's the plan... the doc seems on board with that.
The neurologist spent two seconds looking at my film and confirmed that the cavernous malformation is still there. We talked about my numb jaw. Mostly, we was no help other than agreeing to send the MRI result to the Stanford University neurologist. Primary objective achieved.
I still need to fill the prescription for next week and I might start N-Plate and IV/IG again. I'd like to wait until my experiment is done first.
Cheers to all for a good weekend. I need to decide which out of four movies I'll go see.
Take this week for example. M is 8, W is 3, Th is 3 and Fr is 9. So, three days after a Friday transfusion, I'm up to 8. Two days after that I'm at 3 and get another transfusion. Then the very next day I'm back at 3 and then one day after that, back at 9. The transfusions are foreign platelets in my body, so what if my body is going into hyper immune mode to deal with that and there is collateral damage to the platelets my body is actually making? Then it settles out and my body platelets start to rise? Anyway, I proposed we check Monday and if it's up again, I skip the transfusion and check again on Tuesday. I think that's the plan... the doc seems on board with that.
The neurologist spent two seconds looking at my film and confirmed that the cavernous malformation is still there. We talked about my numb jaw. Mostly, we was no help other than agreeing to send the MRI result to the Stanford University neurologist. Primary objective achieved.
I still need to fill the prescription for next week and I might start N-Plate and IV/IG again. I'd like to wait until my experiment is done first.
Cheers to all for a good weekend. I need to decide which out of four movies I'll go see.
Friday, November 16, 2012
16 November 2012
It's a weird day. My mouth is full of sores but my shoulder and leg feel better. Apparently, I have better neutrophils due to the two days of shots to accelerate those. I told the nurse it was nice to see something working on me. I can also hope that the H.Pylori will be eradicated from my stomach even if it has no effect on the platelet situation.
Now, I sit in the IV chair awaiting platelets as I sip my coffee and watch an oil rig burning on the TV. The IV is in my wrist today. Normally, I don't like those but the nurse did a fine job sticking me and it's working well. It's the hand pokes that typically don't work out well for some reason. The veins are deceptively full and invite the poke, only to deny a strong entry and I end up with a poke somewhere else.
The Benadryl is taking effect. The working this week has been helpful to my state of mind, but has supplanted other activities of import as well.
After this I have to make my way to the neurologist. Bad planning actually. I forgot I might be affected by Benadryl. Hmmm. Well, I'm armed with two MRI CDs and I get to find out if that bleeder in my brain has resolved some.
I've made a couple of suggestions here at the hospital too. The first was simple... how can we find a way to get all of the platelets in the bag into me before we're done? Putting a couple of heads together, the nurse team devised a method for topping off the bag with saline and driving the platelets all the way through. This wouldn't be needed if it wasn't for a special filter they use as extra protection from rogue white cells still in the platelet mix. The second suggestion was prompted when one of the cancer patients was talking about her efforts to get here from the far away parking lot on the other side of the hospital. Oncology has limited reserved parking... maybe 10 spots... and if those are gone, you end up in Timbuktu or valet parking on the other side. So I said... why not let people valet park and the parking attendant that has to drive the car to park it anyway can give you a ride back up to the other side and drop you off at oncology. So, the head nurse here liked the idea and ran it up the chain... apparently, it went all the way up the chain until one of the Master links noted that the valet contract doesn't allow the drivers to leave the property, which means they can't go on the 500m stretch of road to get from one parking lot to another. Nice. However, they offered to provide transporters to wheel people up from the valet to the oncology through the hospital. That's progress.
Okay. This is the longest post on this blog.
Now, I sit in the IV chair awaiting platelets as I sip my coffee and watch an oil rig burning on the TV. The IV is in my wrist today. Normally, I don't like those but the nurse did a fine job sticking me and it's working well. It's the hand pokes that typically don't work out well for some reason. The veins are deceptively full and invite the poke, only to deny a strong entry and I end up with a poke somewhere else.
The Benadryl is taking effect. The working this week has been helpful to my state of mind, but has supplanted other activities of import as well.
After this I have to make my way to the neurologist. Bad planning actually. I forgot I might be affected by Benadryl. Hmmm. Well, I'm armed with two MRI CDs and I get to find out if that bleeder in my brain has resolved some.
I've made a couple of suggestions here at the hospital too. The first was simple... how can we find a way to get all of the platelets in the bag into me before we're done? Putting a couple of heads together, the nurse team devised a method for topping off the bag with saline and driving the platelets all the way through. This wouldn't be needed if it wasn't for a special filter they use as extra protection from rogue white cells still in the platelet mix. The second suggestion was prompted when one of the cancer patients was talking about her efforts to get here from the far away parking lot on the other side of the hospital. Oncology has limited reserved parking... maybe 10 spots... and if those are gone, you end up in Timbuktu or valet parking on the other side. So I said... why not let people valet park and the parking attendant that has to drive the car to park it anyway can give you a ride back up to the other side and drop you off at oncology. So, the head nurse here liked the idea and ran it up the chain... apparently, it went all the way up the chain until one of the Master links noted that the valet contract doesn't allow the drivers to leave the property, which means they can't go on the 500m stretch of road to get from one parking lot to another. Nice. However, they offered to provide transporters to wheel people up from the valet to the oncology through the hospital. That's progress.
Okay. This is the longest post on this blog.
15 November 2012
Took my Wednesday platelets to work today after getting Shot #2 of the neutrophil accelerator drug. That sucker is quite uncomfortable in the soft back of my arm... but hopefully it works... it will help me keep from catching infections.
Wednesday platelet count was 3K... not a happy data point after the 8K Monday, but it simply means that it's time to keep marching onward.
New treatment in play... CellCept for immune system inhibition combined with IVIG to address B-cell issues. The result... I'm not sure. The idea is to use a Level 3 suppression approach to knock back the all-powerful immune system. I'm really not ready to take this, and I haven't filled the prescription yet... but I will and maybe I'll start on Monday. I don't like starting new things before a weekend.
Wednesday platelet count was 3K... not a happy data point after the 8K Monday, but it simply means that it's time to keep marching onward.
New treatment in play... CellCept for immune system inhibition combined with IVIG to address B-cell issues. The result... I'm not sure. The idea is to use a Level 3 suppression approach to knock back the all-powerful immune system. I'm really not ready to take this, and I haven't filled the prescription yet... but I will and maybe I'll start on Monday. I don't like starting new things before a weekend.
Tuesday, November 13, 2012
13 November 2012 - MRI #3
It was feel-good Tuesday... the post-platelet Monday day where the idea of working a lot more seems to eek out a lot easier than other days. Started the day with a meeting and then headed to the hospital for a scheduled MRI. This one was set up to support the diagnosis process for the doctors at Stanford Univ that weren't 100% sure about the cavernous malformation.
The MRI was my third, so it was pretty familiar. This time I walked in wearing street clothes and just had to empty out the metal. They slid me in with classic rock playing in the headphones and took pictures of my brain for about 25 minutes. It was amusing to tell people I was going to have my head examined.
The MRI was my third, so it was pretty familiar. This time I walked in wearing street clothes and just had to empty out the metal. They slid me in with classic rock playing in the headphones and took pictures of my brain for about 25 minutes. It was amusing to tell people I was going to have my head examined.
Monday, November 12, 2012
12 November 2012
Today is a bit different. First, kudos to the veteran's being honored today. It's a holiday and my normal medical group is off today. They hooked me up with a platelet process in the main hospital, so I'm in a squishy moveable bed with a nice view of the Kahului Harbor. (see the picture?)
The team here has things in place for an efficient transfusion. Happy about that. I was a bit worried I'd get stuck in "admitted to hospital" zone.
Still dealing with "impingement syndrome" on shoulder, as diagnosed after x-ray last week by the primary doc. I found out I have some arthritis on my shoulder joint to my clavicle as well. Nice, eh?
Platelet count prior to transfusion today is 8K. First time that high on a Monday. But, last week I had a 9K on Wednesday. Let's see how this Wednesday is. If there are two in a row, that might be some good news.
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| Kahului Harbor from Hospital Bed |
Still dealing with "impingement syndrome" on shoulder, as diagnosed after x-ray last week by the primary doc. I found out I have some arthritis on my shoulder joint to my clavicle as well. Nice, eh?
Platelet count prior to transfusion today is 8K. First time that high on a Monday. But, last week I had a 9K on Wednesday. Let's see how this Wednesday is. If there are two in a row, that might be some good news.
Saturday, November 10, 2012
10 November 2012
Today began eradication therapy of the Helicobater pylori bacteria
found in me via blood test. This is the bacteria that was previously
confirmed to be the cause of ulcers that made the news several years ago
when it was determined that stress is not the cause. I tested positive
this week and found out the results late on Friday. Most developed
countries show that something like less than 60% of people have this
bacteria. The community agrees, from what I can tell, that there has
been some association seen between H.pylori presence and ITP but the
reason for this is still an unknown. Two papers I have provide the
latest theories on why this is. Some results have been seen in small
sample sizes that getting rid of the bacteria can increase platelet
counts, but I don't see a lot of work on people with counts as bad as
mine. Regardless, we're moving forward with eradication... which
consists of two different antibiotics and an acid inhibitor. That goes
for two weeks. I've heard I should eat some yogurt.
Test results from Wednesday draws are still coming, with exception of that one above.
Had a long conversation with doctor at UCSF regarding my past treatments and the spreadsheet I sent him of my historical blood test results. He confirmed that I have a very tough case, having dealt with refractory* cases. He's tied to the ITP research and treatment community and has co-treated with another doctor I had previously located at Cornell in NY. He offered to work with my doctor next week to share thoughts on approaches. One theory is that there is a problem in T-cells or D-cells in my immune systems and there are a couple of quite aggressive immune systems suppression techniques that have had effectiveness. I won't get into the details until I know more. He offered to treat me in SF or to work with my doctor here for treatment.
Still finding hematologist at Mayo Clinic for further consultation.
Two additional things need to be looked at as well via some quick testing and these might be part of the Wednesday tests... need to wait until later this coming week to know more.
Monday is a holiday, which makes Monday interesting for the scheduled platelet transfusion. I'll admit to the hospital so they can find me a bed and hook me up. Fun. No worries really, other than expecting it to take three times as long and they won't have a good internet connection... awwww.
* Refractory refers to very low counts that have not responded to any of the standard treatments (from what I have been told).
Test results from Wednesday draws are still coming, with exception of that one above.
Had a long conversation with doctor at UCSF regarding my past treatments and the spreadsheet I sent him of my historical blood test results. He confirmed that I have a very tough case, having dealt with refractory* cases. He's tied to the ITP research and treatment community and has co-treated with another doctor I had previously located at Cornell in NY. He offered to work with my doctor next week to share thoughts on approaches. One theory is that there is a problem in T-cells or D-cells in my immune systems and there are a couple of quite aggressive immune systems suppression techniques that have had effectiveness. I won't get into the details until I know more. He offered to treat me in SF or to work with my doctor here for treatment.
Still finding hematologist at Mayo Clinic for further consultation.
Two additional things need to be looked at as well via some quick testing and these might be part of the Wednesday tests... need to wait until later this coming week to know more.
Monday is a holiday, which makes Monday interesting for the scheduled platelet transfusion. I'll admit to the hospital so they can find me a bed and hook me up. Fun. No worries really, other than expecting it to take three times as long and they won't have a good internet connection... awwww.
* Refractory refers to very low counts that have not responded to any of the standard treatments (from what I have been told).
Thursday, November 8, 2012
8 November 2012
Went to work today after waking up feeling quite alright. Hit the hospital at 1130 for red blood cells due to 7.8 hemoglobin count. Two units in over 4 hours in the chair and now home and full of blood.
Tomorrow will be a test on platelets that will determine if Thursday's 9K read means something.
Also meeting with primary doc to look at my constrained and tight shoulder.
Doc from UCSF has called but we still haven't talked. Sent him my blood count spreadsheet to review.
Tomorrow will be a test on platelets that will determine if Thursday's 9K read means something.
Also meeting with primary doc to look at my constrained and tight shoulder.
Doc from UCSF has called but we still haven't talked. Sent him my blood count spreadsheet to review.
Wednesday, November 7, 2012
7 November 2012
It's turn this crap around day. Well, maybe it's getting the groundwork in place to turn this crap around day.
Status on what's going on.
Today, after the lab failed to have the platelets ready for the morning transfusion, I'm back in the chair for a 1pm transfusion. The doc wants a full set of blood tests and we'll work up a test for h.pylori bacteria as well. It seems that he'll look at a lot more of the out-of-box areas of focus for causes, which is a reaction to the failure of a splenectomy to result in higher counts.
I've identified a UCSF doctor that is interested in talking and he'll get some faxed results soon. Maybe we'll talk tomorrow. Also prepping for Mayo Clinic discussions in the next couple days once we get a good hematology POC identified.
Platelet count for today is 9K. A bit surprising but not the first time I've had an oddball higher count. Friday will determine if there's an up-trend.
Status on what's going on.
Today, after the lab failed to have the platelets ready for the morning transfusion, I'm back in the chair for a 1pm transfusion. The doc wants a full set of blood tests and we'll work up a test for h.pylori bacteria as well. It seems that he'll look at a lot more of the out-of-box areas of focus for causes, which is a reaction to the failure of a splenectomy to result in higher counts.
I've identified a UCSF doctor that is interested in talking and he'll get some faxed results soon. Maybe we'll talk tomorrow. Also prepping for Mayo Clinic discussions in the next couple days once we get a good hematology POC identified.
Platelet count for today is 9K. A bit surprising but not the first time I've had an oddball higher count. Friday will determine if there's an up-trend.
Tuesday, November 6, 2012
6 November 2012
Pretty uneventful and restful day with no additional symptoms.
Tomorrow will be platelets.
Today I have hope for myself and worry for my country.
Tomorrow will be platelets.
Today I have hope for myself and worry for my country.
Monday, November 5, 2012
5 November 2012
I've been silent for too many days. Maybe I was taking a break from the direct facing of the issues. But it's Monday now... time to get things caught up.
Platelet counts are back to 3K for both Thursday and today. This seems to be a floor in my level.
Had platelets added Friday and today. The weekend was uneventful in the aches/pains department and the bleeding regime.
Shoulder is feeling tight and restricted. Will try to get with Kepler (primary) this week to get checked out in general.
Stitches still healing from what I can tell. Sneezing doesn't hurt as much as before.
Platelet counts are back to 3K for both Thursday and today. This seems to be a floor in my level.
Had platelets added Friday and today. The weekend was uneventful in the aches/pains department and the bleeding regime.
Shoulder is feeling tight and restricted. Will try to get with Kepler (primary) this week to get checked out in general.
Stitches still healing from what I can tell. Sneezing doesn't hurt as much as before.
Thursday, November 1, 2012
1 November 2012
Platelet count = 3K
I'll get a transfusion tomorrow.
It's not apparent to me how losing the spleen has any effect.
I'll get a transfusion tomorrow.
It's not apparent to me how losing the spleen has any effect.
31 October 2012
Uneventful medical day with itchy stitches and a conversation / appointment with hematologist. Plan for Thursday blood test continues. Past splenectomy patients have seen big dips in platelet count prior to a steady rise, so it's too early to tell if there is an effect yet. I asked him to describe why this occurs. He admitted that the community really doesn't have an explanation for the physiology of this. I would agree with that.
It's further apparent to me that the understanding of immune system interaction with platelets is not understood at all on the cellular level, which I believe is where the answers to the mystery lie. I've also noticed over this past year that ITP patients are primarily satisfied with achieving a sustainable higher platelet count level, even if that level is still significantly lower than normal. The acceptance of living with the condition is high. So, attaining the clear understanding of the chemical or physiological specifics of what is going on is left to the few researchers who want to make a drug that lets people continue on the merry way.
With that in mind, the doctor is supportive of pursuing options for chasing this mystery. He hopes that can be done with a sustainable platelet level, even if it's low.
It's further apparent to me that the understanding of immune system interaction with platelets is not understood at all on the cellular level, which I believe is where the answers to the mystery lie. I've also noticed over this past year that ITP patients are primarily satisfied with achieving a sustainable higher platelet count level, even if that level is still significantly lower than normal. The acceptance of living with the condition is high. So, attaining the clear understanding of the chemical or physiological specifics of what is going on is left to the few researchers who want to make a drug that lets people continue on the merry way.
With that in mind, the doctor is supportive of pursuing options for chasing this mystery. He hopes that can be done with a sustainable platelet level, even if it's low.
Tuesday, October 30, 2012
30 October 2012
First day back. Blood test revealed a 19K... more than I expected but low enough to continue the doubts about effectiveness. Plan is for a test on Thursday and transfusion on Friday if needed... or not if the count stays up.
These stitches are starting to itch.
These stitches are starting to itch.
Monday, October 29, 2012
29 October 2012
This should be a day for checking out of the hospital and going home to Maui. Waiting to see Okazaki to discuss the plan. First blood test gave 60,000 after the two units yesterday and just had a new blood test. Waiting for results.
Looking forward to getting back home and taking the next steps forward, whatever they are. I'm in a battle with some unknown force, one that wishes to challenge my life philosophies.
Straub Clinic could use Internet for coherent patients. This room is a triangle also and a bit hard to fit things for comfort, but it's private and that's cool. The guy next door is the loudest snorer I've ever heard. Other than those, this is a good place.
Will update this entry in awhile.
4:10pm... at airport heading back to Maui. Released by surgeon. Discussed plan with Okazaki and it comes down to watching platelets to see where they stabilize. An underwhelming response. I'll get a test tomorrow. He was more impressed by the 60,000 numbers this weekend than me.
Tomorrow will begin the new era of this challenge aimed at further correct specific diagnosis of the problem.
Looking forward to getting back home and taking the next steps forward, whatever they are. I'm in a battle with some unknown force, one that wishes to challenge my life philosophies.
Straub Clinic could use Internet for coherent patients. This room is a triangle also and a bit hard to fit things for comfort, but it's private and that's cool. The guy next door is the loudest snorer I've ever heard. Other than those, this is a good place.
Will update this entry in awhile.
4:10pm... at airport heading back to Maui. Released by surgeon. Discussed plan with Okazaki and it comes down to watching platelets to see where they stabilize. An underwhelming response. I'll get a test tomorrow. He was more impressed by the 60,000 numbers this weekend than me.
Tomorrow will begin the new era of this challenge aimed at further correct specific diagnosis of the problem.
28 October 2012
This morning was the first blood test to see what impact the missing spleen has on platelets. Yesterday, post surgery count was 68,000 and the reading today was 28,000. This was not good news, but to get a better feel, another blood test happened later in the day. The count for that was 14,000. So, platelets are still not surviving. The attending doctor visited a couple of times and said he'd keep me here at the hospital until tomorrow when the other doctors could come up with a way ahead plan. He hooked me up to a couple more units of blood.
The primary issue through most of the day was to move gas through my system and deal with the massive post-surgery bloating I've been dealing with. Had some success there. Went on liquid-only diet, etc. Walked the hallways and took a walk to the "healing garden" at the hospital as well.
The primary issue through most of the day was to move gas through my system and deal with the massive post-surgery bloating I've been dealing with. Had some success there. Went on liquid-only diet, etc. Walked the hallways and took a walk to the "healing garden" at the hospital as well.
Saturday, October 27, 2012
26 October 2012 - Post Surgery
Splenectomy is complete.
No complications I'm aware of.
Private small room.
Old "War of the Worlds" movie on.
No results yet on whether it worked - i.e., higher platelet count.
On a morphine drip controlled by me.
No complications I'm aware of.
Private small room.
Old "War of the Worlds" movie on.
No results yet on whether it worked - i.e., higher platelet count.
On a morphine drip controlled by me.
27 October - Recovery Day 1
The first night went pretty well. Mr. Morphine kept the pain to a manageable level and I was able to sleep off and on with the typical hospital sleep interruptions. Woke up for the new day at about 600am when they wanted some blood. That resulted in some decent news of a platelet count at 68,000. However, the surgeon pumped a lot of platelets into me during the operation, so it's not clear how much of that came from surgery. The next read will be tomorrow morning and an increase will say a lot.
I have four incisions... three on the left torso for the laproscopic spleen removal and one on the lower right near my groin where the radiologist did the embolization of the spleen artery. According to the surgeon, there were only 9-12 drops of blood during the operations. Nice to hear.
Just went for a walk around the hospital floor hallway with Lisa. Used a walker and it went alright. I'm off the morphine and on to Vicodin in pill form. Eating regular food and not attached to IV at the moment.
Doc said I would likely be released tomorrow, but would need to stay in Honolulu until Monday to get a platelet read and see how that's progressing.
I have four incisions... three on the left torso for the laproscopic spleen removal and one on the lower right near my groin where the radiologist did the embolization of the spleen artery. According to the surgeon, there were only 9-12 drops of blood during the operations. Nice to hear.
Just went for a walk around the hospital floor hallway with Lisa. Used a walker and it went alright. I'm off the morphine and on to Vicodin in pill form. Eating regular food and not attached to IV at the moment.
Doc said I would likely be released tomorrow, but would need to stay in Honolulu until Monday to get a platelet read and see how that's progressing.
Thursday, October 25, 2012
25 October 2012
Spent the day at Straub Clinic and Hospital doing pre-operation activities. Flew over with Lisa at 7am and started with meeting the surgeon and going over the planned procedure. It seems likely that she'll use the laproscopic approach. Had some blood tests and a contrast CT scan to check out the surgery region. The contrast fluid via IV was supposed to make me feel warm and give me a sensation that I'd peed my pants.... that didn't happen for me. Talked over the procedure for cutting off the blood supply to the spleen with the doctor that does that. Met with the anesthesiologist. A nice lady from the French part of Canada.
Overall, it was smooth and professional and well-coordinated. Tomorrow will start at 0730 in admitting and then move to radiology for the embolism in the artery to the spleen. The main surgery is now scheduled for 1210pm. It's supposed to be 2 hours with a 1 hour recovery either in the normal recover or ICU depending on what the doctor thinks. I guess all of the rooms there are private, so that's nice.
The good doctor doesn't expect to see me leaving before Monday. There seems to be a desire to monitor my platelet response carefully prior to release. Makes sense.
Also scored some new Vicodin the other night which worked better than the previous... better mix. That's helped the hip situation, but it's still pretty sore.
It's been a long road to get to the splenectomy. It's now a milestone of sorts. Let's see how it plays out.
Overall, it was smooth and professional and well-coordinated. Tomorrow will start at 0730 in admitting and then move to radiology for the embolism in the artery to the spleen. The main surgery is now scheduled for 1210pm. It's supposed to be 2 hours with a 1 hour recovery either in the normal recover or ICU depending on what the doctor thinks. I guess all of the rooms there are private, so that's nice.
The good doctor doesn't expect to see me leaving before Monday. There seems to be a desire to monitor my platelet response carefully prior to release. Makes sense.
Also scored some new Vicodin the other night which worked better than the previous... better mix. That's helped the hip situation, but it's still pretty sore.
It's been a long road to get to the splenectomy. It's now a milestone of sorts. Let's see how it plays out.
Wednesday, October 24, 2012
22 October 2012
It's morning in America (afternoon in parts) and platelets pump into me earlier than normal.
24 October 2012
Long day at the hospital getting red blood cells and platelets in preparation for the flight tomorrow to Oahu. Enjoyed a hospital lunch and snuck three small bags of M&Ms while sitting there.
At my request, Dr. Okazaki came to visit and talk about the surgery plan and how he will be tied into the surgery progress and data for platelet counts. He reminded me that this is a risky surgery due to ITP but the plan for closing off the artery to the spleen should reduce the blood enough. They'll keep platelets flowing into me until they see some stability or rise in count.
Started the day with one hour of sleep after a night of pain in my hip again... sciatic nerve pain and such. I've been delinquent in dealing with this officially with the physician. Hopefully it won't be a major issue over the next few days related to surgery and then I'll just nail it next week. Tired of feeling this pain and not sleeping.
At my request, Dr. Okazaki came to visit and talk about the surgery plan and how he will be tied into the surgery progress and data for platelet counts. He reminded me that this is a risky surgery due to ITP but the plan for closing off the artery to the spleen should reduce the blood enough. They'll keep platelets flowing into me until they see some stability or rise in count.
Started the day with one hour of sleep after a night of pain in my hip again... sciatic nerve pain and such. I've been delinquent in dealing with this officially with the physician. Hopefully it won't be a major issue over the next few days related to surgery and then I'll just nail it next week. Tired of feeling this pain and not sleeping.
Tuesday, October 23, 2012
19 October 2012
Remember the stubbed toe? Now it's a black toenail atop my pinky toe on the left side, held on most likely by skin that will eventually die and release the nail back to the earth.
Today's platelets didn't find a welcoming committee in my body, and instead met with the force of my immune system. The allergic reaction I had started in my arm pits... a little itch that was just enough to catch my attention. Soon enough, it walked across my body like sandstorm... a wall of rash moving across while they quickly shot me full of Benadryl and we awaited the outcome. Of course, as it does, Benadryl won and by the time I was in my truck under the beating sun of Maui, the rash had subsided. The Benadryl had not, so I sat in my warm truck and enjoyed the sunshine until I could safely drive myself 1.2 miles to the house.
My work day was wiped out for the most part.
Today's platelets didn't find a welcoming committee in my body, and instead met with the force of my immune system. The allergic reaction I had started in my arm pits... a little itch that was just enough to catch my attention. Soon enough, it walked across my body like sandstorm... a wall of rash moving across while they quickly shot me full of Benadryl and we awaited the outcome. Of course, as it does, Benadryl won and by the time I was in my truck under the beating sun of Maui, the rash had subsided. The Benadryl had not, so I sat in my warm truck and enjoyed the sunshine until I could safely drive myself 1.2 miles to the house.
My work day was wiped out for the most part.
Sunday, October 21, 2012
21 October 2012 - Surgery Info
Surgery information from last Friday evening.
Thursday, I meet with the doctor in Oahu at 0930. Straub Clinic and Hospital. Dr. K. Huong will make a go versus no-go decision on whether to do the surgery the next day, and will decide what's the best surgical procedure (more later). I believe that Dr. Okazaki has worked out most details that make this a procedural thing more than a real decision, but you never know. If the "go" is in play, then I follow with two pre-op meetings with nurses and then with anesthesiologist and some others. They claim I'm out by 2pm or so.
Friday is surgery day and I'm 2nd on the list, so that means a schedule of something like 930am. It's a two-hour procedure, depending on which procedure she selects. Dr. Huong typically uses a laproscopic surgery approach, but might do this a different way depending on the consultation.
For all you wiki fans... here's the link to that: http://en.wikipedia.org/wiki/Laparoscopic_surgery
Normal recovery / release is 1-3 days with average of 2. Will I be average? Accelerated? That will be the big mystery.
Positive thought for the day: The spleen can weight up to 7 ounces... so I'll be losing almost 1/2 pound after this.
Okay... back to football. What? The Raiders won?
Thursday, I meet with the doctor in Oahu at 0930. Straub Clinic and Hospital. Dr. K. Huong will make a go versus no-go decision on whether to do the surgery the next day, and will decide what's the best surgical procedure (more later). I believe that Dr. Okazaki has worked out most details that make this a procedural thing more than a real decision, but you never know. If the "go" is in play, then I follow with two pre-op meetings with nurses and then with anesthesiologist and some others. They claim I'm out by 2pm or so.
Friday is surgery day and I'm 2nd on the list, so that means a schedule of something like 930am. It's a two-hour procedure, depending on which procedure she selects. Dr. Huong typically uses a laproscopic surgery approach, but might do this a different way depending on the consultation.
For all you wiki fans... here's the link to that: http://en.wikipedia.org/wiki/Laparoscopic_surgery
Normal recovery / release is 1-3 days with average of 2. Will I be average? Accelerated? That will be the big mystery.
Positive thought for the day: The spleen can weight up to 7 ounces... so I'll be losing almost 1/2 pound after this.
Okay... back to football. What? The Raiders won?
Thursday, October 18, 2012
18 October 2012
Last official day of physical therapy. I have to say this has been a plus all the way around since the big event. It helped grab the vision back and it has helped me regain sensations and such on the right side... stabilize my general movement and has even helped regain some muscle bulk after so long of no working out. I might get an extension for continued work after the surgery next week.
Lip and chin are still numb. Shaved my face so it stopped poking my cheeks and irritating off and on. That helped with things.
There are many positives that come from this experience. My guess is that the blog doesn't highlight those much. It occurred to me that I might be using this blog as a factual venting for things that come off as negatives more than positives. It's informative but not happy. I, on the other hand, remain hopeful that plowing through whatever roadblocks life wants to put in my way... aches, pains, numbness, and today's newest... a stubbed toe... will lead to a better me and a better life on the other end.
Lip and chin are still numb. Shaved my face so it stopped poking my cheeks and irritating off and on. That helped with things.
There are many positives that come from this experience. My guess is that the blog doesn't highlight those much. It occurred to me that I might be using this blog as a factual venting for things that come off as negatives more than positives. It's informative but not happy. I, on the other hand, remain hopeful that plowing through whatever roadblocks life wants to put in my way... aches, pains, numbness, and today's newest... a stubbed toe... will lead to a better me and a better life on the other end.
Tuesday, October 16, 2012
16 October 2012
Today is your basic discomfort day. Woke up at 330am with hip pain and hit the tylenol bottle. Slept more and worked it all out a bit in the morning. Arm is freaking out a bit so went for a few stretches. Biggest problem is the reaction to eating in my mouth. Teeth hurt but cheek burns. Overly sensitive.
Casey arrived in the afternoon, so all that other stuff is secondary. It's good t see him. 5'8" now.
Set up an appointment with primary tomorrow for a potential x-ray of hip. Maybe get to the bottom of that pain.
Casey arrived in the afternoon, so all that other stuff is secondary. It's good t see him. 5'8" now.
Set up an appointment with primary tomorrow for a potential x-ray of hip. Maybe get to the bottom of that pain.
Monday, October 15, 2012
15 October 2012
Just past the weekend. Had my lower left jaw go numb on Sunday, but only the front part. Likely a bleed on the nerve midway back... according to information gained from the last time my right jaw went numb.
Tired yogurt for the first time in years... the non-frozen kind. Fruity. I could eat more of that.
At the oncology area getting platelets. The doctor told the patient next to me how good he looked. The patient responded... "I wish I looked bad and felt better"... I can relate to that.
Took off and came back for red blood cells. Hemoglobin at 8.2. One mystery... why does this stay down even after two units of blood? First time I had this, it stayed up. Now, it drops back down fast. Doctor always points to the rituximab. I don't know.
Tired yogurt for the first time in years... the non-frozen kind. Fruity. I could eat more of that.
At the oncology area getting platelets. The doctor told the patient next to me how good he looked. The patient responded... "I wish I looked bad and felt better"... I can relate to that.
Took off and came back for red blood cells. Hemoglobin at 8.2. One mystery... why does this stay down even after two units of blood? First time I had this, it stayed up. Now, it drops back down fast. Doctor always points to the rituximab. I don't know.
Sunday, October 14, 2012
13 October 2012
The only thing worth noting today is that my hips hurt like H all morning and then was fine and then hurt like H again at night.
Friday, October 12, 2012
12 October 2012 - Pop's Birthday
Just a regular platelet day here... early morning transfusion to last the weekend. Lip seems to be regaining some feeling. Hip is really sore today after waking me up at 4:30am. Tried stretching and some tylenol and that took the edge off.
Yesterday was physical therapy #7 and it went well. Focus on right shoulder sensations.
Dr. Kepler called to confirm that he set up a MRI for November and said I should get the MRI results from the hospital, versus requesting that the hospital send them... apparently they find ways to delay. I told him they annoyed me because I had to pay $15 for the last disc. He wants me to go visit with Dr. Rogers too... the local neurologist that's connected to Stanford.
Some good news... I've been smashing my foot into things like doors and furniture more regularly lately... so that's back to normal.
UPDATE:
Tried chiropractor today to see if popping that back/hip combination might serve my pain. Still feeling it but maybe tonight with some ice it will dissipate.
Yesterday was physical therapy #7 and it went well. Focus on right shoulder sensations.
Dr. Kepler called to confirm that he set up a MRI for November and said I should get the MRI results from the hospital, versus requesting that the hospital send them... apparently they find ways to delay. I told him they annoyed me because I had to pay $15 for the last disc. He wants me to go visit with Dr. Rogers too... the local neurologist that's connected to Stanford.
Some good news... I've been smashing my foot into things like doors and furniture more regularly lately... so that's back to normal.
UPDATE:
Tried chiropractor today to see if popping that back/hip combination might serve my pain. Still feeling it but maybe tonight with some ice it will dissipate.
Thursday, October 11, 2012
10 October 2012
Platelet count at 4K prior to transfusion. Right lower cheek still numb so I'm discovering the joy of software foods. Still managed to crunch through 5 oreos.
Hip feeling a bit better due to nice "pop" in hip this morning after moving leg around and stretching. Still hurts... but a notch lower or two.
Arm spot is clearing up as well, but still spotted all over arms and some on face too.
New MRI is scheduled for 13 November to support Stanford diagnosis / confirmation of previous diagnosis. Tried to make a point to my primary that the hospital just did a MRI on Monday, but I might have to reiterate.
Hip feeling a bit better due to nice "pop" in hip this morning after moving leg around and stretching. Still hurts... but a notch lower or two.
Arm spot is clearing up as well, but still spotted all over arms and some on face too.
New MRI is scheduled for 13 November to support Stanford diagnosis / confirmation of previous diagnosis. Tried to make a point to my primary that the hospital just did a MRI on Monday, but I might have to reiterate.
Monday, October 8, 2012
8 October 2012
Routine plans today disturbed by a new numbness on my face... my lower right jaw. After some teasing moments of numbness Sunday, I woke up at 4am with an established numb lower right jaw... much like a post-Novacaine feeling just prior to getting your tooth drilled.
I checked in for platelets at 8:30 am and reported on the numbness and was promptly sent to Emergency for a CT Scan, which then resulted in a CT Scan and a MRI. It was a light day at the hospital so they fit me in quickly. I had the same doctor that I had when I went to the emergency last time. After those tests and some blood work, it was determined that both showed negative results for a new brain bleed and the original bleed area was resolving itself well. Good news but a new mystery.
Speculation is that I have a bleed near my TMJ, a hematoma and blood got on the nerve that feeds into the jaw (the exact nerve the dentist goes after). The hope is that it will self resolve now that I have new platelets and any bleeding has been shut down. In the meantime, I am slobbering more and have a hard time telling if my spoon has actually deliver the soup to my mouth.
Platelets - 3 and hemoglobin 7.7. I got two units of red cells today as well.
I checked in for platelets at 8:30 am and reported on the numbness and was promptly sent to Emergency for a CT Scan, which then resulted in a CT Scan and a MRI. It was a light day at the hospital so they fit me in quickly. I had the same doctor that I had when I went to the emergency last time. After those tests and some blood work, it was determined that both showed negative results for a new brain bleed and the original bleed area was resolving itself well. Good news but a new mystery.
Speculation is that I have a bleed near my TMJ, a hematoma and blood got on the nerve that feeds into the jaw (the exact nerve the dentist goes after). The hope is that it will self resolve now that I have new platelets and any bleeding has been shut down. In the meantime, I am slobbering more and have a hard time telling if my spoon has actually deliver the soup to my mouth.
Platelets - 3 and hemoglobin 7.7. I got two units of red cells today as well.
Sunday, October 7, 2012
7 October 2012
Not much to report today. Weekends are usually just a waiting game to see how well I can feel until Monday.
Eating today, I discovered this odd relationship between hot foods and the right side of my lower lip. After eating hot soup and then chili later in the day, my lip became numb like it was hit with Novocaine. It goes away soon after eating.
That hip joint pain is significant today, but that topic is getting old for this blog.
Eating today, I discovered this odd relationship between hot foods and the right side of my lower lip. After eating hot soup and then chili later in the day, my lip became numb like it was hit with Novocaine. It goes away soon after eating.
That hip joint pain is significant today, but that topic is getting old for this blog.
Friday, October 5, 2012
5 October 2012 - New Surgery Date
I went for platelets today... afternoon session after a work meeting.. and got the call that my surgery date is moved to 26 October, with a 25 October consultation. A two week shift. Mixed feeling about that. I was looking forward to getting that out of the way and moved into the past. But, more time gives the rituximab a chance to kick in more. Okazaki seemed a little indifferent to that theory. I think he realizes I just don't respond to these things. So, anyway... 25-26 October.
Platelet count was 4 before the transfusion. Hemoglobin still low. Monday will be platelets and red blood cells.
Platelet count was 4 before the transfusion. Hemoglobin still low. Monday will be platelets and red blood cells.
Wednesday, October 3, 2012
3 October 2012 - Casey's Birthday!!!!
I started my day with the platelet IV followed by three vaccination shots to ward off pneumonia strains, some kind of influenza and meningitis. My arm feels GREAT. Also had an EKG to check the heart for abnormalities, etc.
P-Count was 4. That was disappointing, but nothing new.
Go A's! That's got nothing to do with my physical health, but adds some to the mental state of being.
It was good to get some work done too, thought it wasn't much more than talking.
Surgery information is trickling in. Apparently, I get a catheter in an artery leading up to my spleen to shut off the bleeding... my primary care guy noted that they use an intentional embolism to close it off. That's a bit different than the specialist described... gotta do some reading. This happens on the 11th and then spleen removal and disposal occurs on the 12th. No times yet. Will investigate further tomorrow with the nurse in Oahu.
P-Count was 4. That was disappointing, but nothing new.
Go A's! That's got nothing to do with my physical health, but adds some to the mental state of being.
It was good to get some work done too, thought it wasn't much more than talking.
Surgery information is trickling in. Apparently, I get a catheter in an artery leading up to my spleen to shut off the bleeding... my primary care guy noted that they use an intentional embolism to close it off. That's a bit different than the specialist described... gotta do some reading. This happens on the 11th and then spleen removal and disposal occurs on the 12th. No times yet. Will investigate further tomorrow with the nurse in Oahu.
Tuesday, October 2, 2012
2 October 2012
No medical news today. Still waiting to get information about the surgery later next week.
I woke up feeling good after a decent sleep with a large pillow between my knees. Good advice that's worked for one night so far.
Last night was a milestone because after driving my truck around the block solo to test out my fortitude, we ventured for food at night with me driving and it went well. The driving assessment was pretty good and so today, I drove to work to hit a couple meetings and catch up with some key clients. Took off after about a six-hour day and now I can relax this afternoon and enjoy some PT exercises.
I woke up feeling good after a decent sleep with a large pillow between my knees. Good advice that's worked for one night so far.
Last night was a milestone because after driving my truck around the block solo to test out my fortitude, we ventured for food at night with me driving and it went well. The driving assessment was pretty good and so today, I drove to work to hit a couple meetings and catch up with some key clients. Took off after about a six-hour day and now I can relax this afternoon and enjoy some PT exercises.
Monday, October 1, 2012
1 October 2012
IV treatment today for platelets.
The arm "infection" is now being postulated to be some kind of fungus, possibly a ringworm thing. No idea how that comes up on my forearm, but there it is. Waiting for a doctor to come in and verify.
Hemoglobin at 8.5 (up from 7.7 earlier). That seems like a mediocre increase considering the two units on Friday. Rituxin is still messing with me I think. Platelets at 6K... better than the typical 3 on a Monday. Plenty of indicator sores in my mouth and dots on my legs. I think the yard work (minimal as it was) this weekend was a bit too much.
Solicited more details on the upcoming surgery from the main nurse Sandie. Times, names, etc. Hopefully she gets back with me soon.
The arm "infection" is now being postulated to be some kind of fungus, possibly a ringworm thing. No idea how that comes up on my forearm, but there it is. Waiting for a doctor to come in and verify.
Hemoglobin at 8.5 (up from 7.7 earlier). That seems like a mediocre increase considering the two units on Friday. Rituxin is still messing with me I think. Platelets at 6K... better than the typical 3 on a Monday. Plenty of indicator sores in my mouth and dots on my legs. I think the yard work (minimal as it was) this weekend was a bit too much.
Solicited more details on the upcoming surgery from the main nurse Sandie. Times, names, etc. Hopefully she gets back with me soon.
28 September 2012
Today was supposed to be a platelet treatment, but it expanded. Two units of red blood cells to address a low hemoglobin reading. This is supposedly what's causing my unsteady head the past few days. I'm glad this week was the last Rituxin treatment. The whole thing took all day because we waited for the blood bank to come up with the blood.
There's also this spot forming on my arm that looks infected. No idea what it is. Theories abound, but possible skin infection of some kind. "Just cover it and don't touch it"
The Fair has started but I'll stay away. Too many germs I would think.
There's also this spot forming on my arm that looks infected. No idea what it is. Theories abound, but possible skin infection of some kind. "Just cover it and don't touch it"
The Fair has started but I'll stay away. Too many germs I would think.
27 September 2012
Not much happening today other than being uncomfortable and tired and dizzy. I targeted the day for some work, but failed to accomplish much along those lines.
Stanford U called. It seems they cannot verify the cavernous malformation diagnosis from the previous look at the CT Scan. Too much blurring in the MRI images, so I need a new MRI in six weeks. Looks like there are two options for that in Maui so I'll set them up at the one that isn't the hospital (assuming insurance likes that one of course).
Low hemoglobin has my head goofy, but tomorrow will address that with red cells supposedly.
Stanford U called. It seems they cannot verify the cavernous malformation diagnosis from the previous look at the CT Scan. Too much blurring in the MRI images, so I need a new MRI in six weeks. Looks like there are two options for that in Maui so I'll set them up at the one that isn't the hospital (assuming insurance likes that one of course).
Low hemoglobin has my head goofy, but tomorrow will address that with red cells supposedly.
Thursday, September 27, 2012
26 September 2012
I have three failed IV pokes in my numb arm covered with gauze while I wait for somebody to get me hooked up well. The day is starting well I guess.
They went to the other arm and got those platelets in. Fun.
P-Count at 7k prior to transfusion. Better than the 3k last week following Rituxin.
Received bill from 1-5 September in hospital. It was only $66K. Can't wait to see what gets covered by insurance.
Felt okay for awhile until I decided to do some stretches and aggravated that bad nerve. Lasted all night and affected sleeping.
They went to the other arm and got those platelets in. Fun.
P-Count at 7k prior to transfusion. Better than the 3k last week following Rituxin.
Received bill from 1-5 September in hospital. It was only $66K. Can't wait to see what gets covered by insurance.
Felt okay for awhile until I decided to do some stretches and aggravated that bad nerve. Lasted all night and affected sleeping.
25 September 2012 (Tuesday)
Sitting in my IV chair at the Pacific Cancer Institute getting the last of four treatments using Rituxin. It's about time this stuff kicked in...
Took shark liver oil pill on Tuesday morning. Has some ingredients that claim to support this process.
Later on, felt pretty bad all day until night. Hard time sleeping.
Took shark liver oil pill on Tuesday morning. Has some ingredients that claim to support this process.
Later on, felt pretty bad all day until night. Hard time sleeping.
Tuesday, September 25, 2012
24 September 2012
platelet monday... after 18 friday post-platelet infusion, 5 saturday and 5 monday. seeing the flatness at 5 was nice but the boost up to 18 after a transfusion was pretty lame. we'll see how wednesday is.
the physical therapy was a bit different today, with some focus on that nerve pain I was feeling yesterday. i joked to lisa that i had electro-shock therapy but really it was an electronically-stimulated heating pad used to relax things... i think it actually helped some. the pain is still there, but not as bad as yesterday.
took a shot at 3 hours of meetings today as well... one meeting lasting that long really. made for a long day, but it was a useful effort.
the physical therapy was a bit different today, with some focus on that nerve pain I was feeling yesterday. i joked to lisa that i had electro-shock therapy but really it was an electronically-stimulated heating pad used to relax things... i think it actually helped some. the pain is still there, but not as bad as yesterday.
took a shot at 3 hours of meetings today as well... one meeting lasting that long really. made for a long day, but it was a useful effort.
Sunday, September 23, 2012
23 September 2012
Pain in my butt day... I think my sciatic nerve is being affected... possibly, I'm getting feeling back in my right leg, but the feeling is not kind. It's along the same path that the original numbness occurred that tipped off this whole mess. I tried some stretches. Bending at the hip is difficult beyond a particular point.
Overall, it's a very uncomfortable day. The forearm is starting to itch in some places, my shoulder feels like I got a shot, but I didn't. The foot feels like I'm walking on a bunched up sock all day. I can feel stickers I step on in the house brought in by Angel... so that's good.
It's a goofy-head day too. Dizzy. Spent a lot of time sitting on the couch. There's a NCIS marathon showing, so that helps after the football earlier.
Two days of blood tests with no phone calls. Does this mean I have good results or a lazy doctor? Not sure. I'll find out tomorrow. Stay tuned.
Overall, it's a very uncomfortable day. The forearm is starting to itch in some places, my shoulder feels like I got a shot, but I didn't. The foot feels like I'm walking on a bunched up sock all day. I can feel stickers I step on in the house brought in by Angel... so that's good.
It's a goofy-head day too. Dizzy. Spent a lot of time sitting on the couch. There's a NCIS marathon showing, so that helps after the football earlier.
Two days of blood tests with no phone calls. Does this mean I have good results or a lazy doctor? Not sure. I'll find out tomorrow. Stay tuned.
22 September 2012
Post-platelet day. Got a blood test in the morning. Enjoyed some Taco Bell for lunch... soft tacos, but I ordered the cheesy nachos and I think I tore up the roof of my mouth with those. Ended the day feeling like I had a sore mouth. I'm hoping some of that is feeling returning to the left side of my face and tongue.
Going to try some yogurt this weekend. Some time ago, there was some information I found about yeast abundance affecting platelet coagulation.
Going to try some yogurt this weekend. Some time ago, there was some information I found about yeast abundance affecting platelet coagulation.
21 September 2012
Sitting in my IV chair weighing the news of a low platelet count just one day after getting new ones. Ugh.
Now the planning is all about the surgery to get my spleen (a splenectomy for those readers wanting to google the procedure). Just got a call from the nurse... 11-12 October time frame in Oahu. The surgeon wants me over there a day early to consult. I suggested an earlier consultation via skype or other means. We'll see if their procedures are flexible. Pressing the limits. Apparently, they tie off the artery to the spleen and that makes it a fairly bloodless operation. A few days recovery.
They need an EKG before surgery, so I'll do that. I'll go get some vaccinations too that sets me up for the degraded future immunity.
What is this?
Now the planning is all about the surgery to get my spleen (a splenectomy for those readers wanting to google the procedure). Just got a call from the nurse... 11-12 October time frame in Oahu. The surgeon wants me over there a day early to consult. I suggested an earlier consultation via skype or other means. We'll see if their procedures are flexible. Pressing the limits. Apparently, they tie off the artery to the spleen and that makes it a fairly bloodless operation. A few days recovery.
They need an EKG before surgery, so I'll do that. I'll go get some vaccinations too that sets me up for the degraded future immunity.
What is this?
Friday, September 21, 2012
20 September 2012
Physical therapy day.. took it a bit easier to avoid too much damage to the body. Good hour of working things out. It seemed like there was more random tingling going on in areas today. I keep noticing things, but I think it's still wishful thinking.
Had the blood tested but didn't get the results. Will have to round that up in the morning.
I need some sun.
Had the blood tested but didn't get the results. Will have to round that up in the morning.
I need some sun.
Thursday, September 20, 2012
19 September 2012
Another round of platelets. These things aren't lasting too long. Before transfusion today was p-count = 3. Confusing. It seems like doing platelets along with medication leads to body not taking the platelets. Test tomorrow and see if they stuck.
Goofy-headed... that's my new term for how my head feels. I think the numbness is affecting the Eustachian tube inside my ear and making me a bit unstable.
My right arm still feels like it's been in the freezer too long.
Attempted a meeting today for a couple hours. I think it went well. Not too tiring.
Goofy-headed... that's my new term for how my head feels. I think the numbness is affecting the Eustachian tube inside my ear and making me a bit unstable.
My right arm still feels like it's been in the freezer too long.
Attempted a meeting today for a couple hours. I think it went well. Not too tiring.
Tuesday, September 18, 2012
18 September 2012:
New platelets and 3rd rituxim treatment via IV today. Oddly, the p-count from yesterday to today went up from 4 to 12 with no distinctive action taken between yesterday and today. Entered the day with significant petechiae showing up since having physical therapy Monday. My face is showing some of this, really for the first time. This adds to the intrigue about the 12 count since this stuff would normally show up with a lower count.
The First Couple Weeks
16 September 2012:
Seeing single fairly consistency.
13 September 2012:
12 September 2012:
Took a crack at socializing in the evening after attending a meeting for work. The meeting was touch due to vision issues but it felt good to participate in a good discussion.
4 September 2012:
Update From Lisa.
Good signs during physical therapy. Walking really well and good balance, relatively speaking. Vision is still double but learning to compensate for it. Everyone is still saying that these issues will most likely decrease or completely go away.
Received the results from the MRI. Doctors noted that I have a cavernous malformation, which is a small cluster of thin-walled blood vessels that have the tendency to hemorrhage. This is a birth defect and does tend to run in families. There seems to be a lot of information on the Internet. There is surgery that can be done that can reduce the likelihood of hemorrhaging. This isn’t performed here so the neurologist is sending records to Stanford University. They typically don’t do surgery after the first hemorrhage of this kind.
ITP is the other complicating factor (low platelets). Been treated for that last two years with no significant improvement they need to evaluate the entire situation. So with that said I don’t really know the long term plan yet. The short term plan is to get and keep platelets up. They just started another treatment as an inpatient, a medication called Rituximab. This will suppress the immune system and the hope is that it will allow platelets to build long enough so that they can remove his spleen. The spleen is the organ that destroys the platelets marked for destruction. This only has a 50% success rate.
It seems the doctors can only deal with the symptoms because there is little understood about what is causing the immune system to destroy the good platelets. I’m hoping this latest treatment will have a positive impact but it seems they are determined to remove the spleen regardless.
2 September 2012:
ICU Day
Taken to get MRI of head. First time for that. I requested Pink Floyd music and got Bruce Springsteen instead. Holding still with a rack over my face wasn't too bad after the music started.
1 September 2012:
Emergency Room.
Felt odd at home and hung out in bed most of the day feeling dizzy, or as if I was clouded by drugs. When the headache moved around in my head and numbness started to appear at the back of my right leg, it seemed time to call the doctor. He urged me to get to the emergency room and so we went.
Emergency room was full. I wrote on the triage sheet that I had bleeding in my brain and I got to the front of the line. My doctor knew I needed platelets, but it did take awhile to get to that. I had a CT Scan which verified the bleed in the brain and suggested that I had a vein problem in my brain that led to the bleeding. Not much information flowed during this visit.
Eventually, I was moved to the ICU with Lisa. Late that night I fell asleep and woke up after awhile to discover my right body was numb and my vision was now double vision. Their plan is to get me to a MRI the next morning.
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