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).

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.

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.

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.

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.

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.

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.