A Gentle Reminder ....

...that fire fighters, police officers, the Coast Guard, and other emergency personnel that we all rely on in times of disaster are PUBLIC SECTOR WORKERS.  

Photo:    Adam Hunger / Reuters

The Latest on the ITP Front

The hematologist has been monitoring our daughter's platelet counts.   Last Tuesday, it had dropped from 44K to 29K.   So, he saw her last Friday afternoon where her count was 39K.   Higher than Tuesday and (probably) due to her Remicade treatment on Thursday.    But, of course, way under what it should be.   They had a hard time getting her to stop bleeding when they removed the Remicade IV so that was not fun for her.    He told her that he initially had three potential plans to deal with her if the IV-Ig did not work. He has had to rule out one of those (Rituxan) since her platelet count tumbled so far and so fast a week after the IV-Ig. Those options are a weekly injection of N-plate or removing her spleen. N-plate is a drug that encourages her bone marrow to produce platelets. Side effects are negligible. She'd have to have weekly blood draws and if her count was under 50K, she gets the injection. If over, then wait a week, do a blood draw, and go from there. Goal would be to keep her at or above 50K. He said some patients do this for years and for some, it loses it's effectiveness. As for a splenectomy - I guess it's generally a laproscopic surgery these days. They would give her a massive IV-Ig treatment the day before the surgery to get her platelet count up to a normal range, then do the deed. If it's not "open surgery"; i.e., they get the laproscope in and all looks well, then hospital stay would be about two, maybe three, days. If it is open surgery, then 5-7 days. And, naturally, she would have some restrictions on heavy lifting, etc., etc. The usual surgical post-op stuff. Down side to removing her spleen is that she would need a yearly flu shot (which she gets now for the ulcerative colitis), pneumonia shot, and she would be more susceptible to meningitis.  And, she would have to be very careful if she suspected she might be getting sick since  she would have lowered resistance to all the "crud" that is floating around. 

 

So, her call now on what she wants to do. For the first time ever, after leaving a clinic, she broke down crying and "had a moment". She told me she is bone tired of all the doctor visits, being stuck with needles and IV's, worrying about herself, missing work, being a burden on everyone, etc.   She has scheduled an N-plate for this week but is seriously considering the splenectomy.   

 

I'm not sure I know which decision I hope she makes.   I guess splenectomy would be the court of last resort unless she could get the N-plate to work long term.   I can appreciate (well, actually, no, I can't) not wanting to be a human pin cushion with non-stop visits to the hematologist for blood draws and injections.  But major surgery....Eeek.

 

She has a really big decision to make.    Wish this was happening to me instead of her....  

 

 

    

Well, Foo.....

We were optimistic that the IV-Ig treatments our daughter had earlier this month would kick start her platelet system into working like it should.   She had some unpleasant side effects from the treatment that included a migraine and some shakiness, but she recovered reasonably quickly from those.    At her blood test about four days after the infusions, her platelet count 283K (normal is 150K to 400K).    Yesterday, it had plummeted to 44K.   That's a drop of 240K in just one week.

Well FOO, indeed.  (I actually uttered another F-bomb but that's not gonna get printed here!)

Plan is to monitor her weekly for three more weeks, then go from there.   Her hematologist assures her that he does have a Plan C, D, E.....    But, what that is, dunno.

Oh My Goodness

Paul Ryan is often referred to as "the smart guy" in the Republican Party.   I wonder if that makes Vladimir laugh....

 

GEEESH!!!!

A Smackdown of Mitt-ville

Karoli over at Crooks and Liars goes after Mitt and healthcare.    Just read it.     This is probably my favorite outtake:

There is no greater inhibitor to the entrepreneurial spirit than a pre-existing condition, and nothing guaranteed to stop prosperity from knocking on one's door faster than a chronic health condition. That's a fact.

Photo credit:   Library of Congress

Campo Viejo Rioja 2010

Since I haven't posted any Vino items recently, thought I'd do that now.    We enjoyed this yesterday, first as a sipper, then with our meal.   It's a Spanish tempranillo.   Typically rustic (I call it peasant) but always enjoyable.   At 13.5% alcohol, it's not overly dramatic, either.    It's really pleasant with just about anything, so we drank it with chicken, veggie, and sausage gumbo and a crusty baguette.

Glasses up!!

IV - Ig

Been a rather hectic last few days.   Our daughter went to her hematologist for a routine checkup for her ITP last Wednesday, October 3 (which, coincidentally, was my mother's 82nd birthday).   She has routine blood draws for her ulcerative colitis, and the platelet counts have been hovering in the 50K range.   That's good for her (normal is 150K - 400K).    She visited with her doctor, then stopped by the lab for the usual "keg tapping" before heading out.    She was almost home when the nurse from the doctor's office called and asked if she was still in the building.   When she said no, the nurse said she was going to put the doctor on the phone.  She pulled over into a parking lot and took the call.   Her platelet count was 7K.   Yes, seven thousand.  

GULP!   That is bad.  Scary bad.  

"You crazy patient, you!   I had this plan all figured out, and you went and screwed it up!", is what the hematologist (semi-)jokingly told her.   The doctor told her he was fitting her into the schedule so she could receive IV-Ig infusions, pronto.   It's usually a 3-day process, 4-5 hours per day, but since he couldn't get her into the rotation until the next day (Thursday), he sort of doubled up on the treatment (2 days, 8 hours each).   So, she scrambled to rearrange her work schedule so she could spend two full days at the chemo center receiving the treatments.   IV-Ig is an intravenous immuno-globulin infusion that, we hope, will kick start her body into producing platelets like it should.  It's a massive dose of them along with a plasma protein recovery medication.  She spent about 16 hours over two days sitting in a chair with an IV drip, drip, dripping.   She also got bags of saline, steroids, benadryl both days.  The doctor was honest that there is about a 50-50 chance this therapy will be effective.  But, baseball players batting .500 make the All-Star Team so digits crossed that the Platelet Goddesses will smile on her.   She has an appointment tomorrow for a blood count.   Guess we will find out then if this worked.

If not, Plan C.   Her hematologist says he has one, along with Plans D, E, F....

Stay tuned!

Expedia Ad - Awesome!

Here's to peace, LOVE, and understanding......

http://gay.americablog.com/2012/10/stunning-expedia-ad-about-marriage-equality.html