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.
Thursday, November 29, 2012
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.
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