Since Ana has surgery tomorrow at 3pm and they told her that she can’t eat anything after midnight, the only logical thing to do is to have a feast around 11pm the night before!
So, Jay and Katherine are here and we’re getting ready to throw some steak and chicken on the grill.
This is our Easter dinner, since our typical plans got interrupted when the doctors told her she had to get another treatment of IVIG today.
Ana has been seeing a new doctor for her ITP these past couple of months. His recommendation has been to get her spleen removed since it appears to be the source of her platelet issue. In preparation of the surgery, which was to be in a couple weeks from now, she has been weaning off of the prednisone and getting her immunizations.
Last week, since her platelet counts were low (12,000ish if I recall), the doctor ordered several days worth of IVIG. At the end of the week she was well over 100,000 and it was expected that that would last for a few weeks until the surgery.
Bzzzzt. Wrong. She got tested this morning and was at 8,000. So she’ll be getting 3 more days of IVIG (this Thursday, Friday, and Saturday) and then go in for surgery on Monday. Wow, that was fast.
We’re still learning details, so I’ll keep you up to date as we learn more.
Ana had her 2-week visit with the new hematologist, and her platelets levels were the same as they were 2 weeks ago so that apparently finally “proves” that prednisone isn’t helping. Glad it took 5 months for that to be clear.
Anyway, she’s going to start the weaning process – dropping her dosage 10mg/week while continuing to get blood tests every week. The plan is to see if once she tapers down slowly her levels stay where they are – they are low (51k) but definitely manageable. If they don’t continue to drop, they’ll call it good enough and, I presume, just test her every now and again as well as us being on the lookout for the symptoms of the low platelets.
If on the other hand she does drop again after stopping the prednisone, it’ll be time to look at the spleen removal as the next phase.
We had the second meeting with Ana’s new hematologist today. Some good things and some less-desirable things came out of it.
Good things:
He describe, as we’ve known, diagnosing ITP is done by ruling out other causes. Unlike the previous doctor, he is actually actively running tests and ruling things out. As expected, everything is ruling out ITP and getting her prepared for a potential treatment by the spleenectomy.
Not so good things:
So she’ll be on the full dosage of prednisone for two more weeks. If her levels go down, it’ll indicate that the steroids aren’t doing anything and she’ll be weaned off them and the next step will be the spleen removal. If after two weeks her counts are stable, they’ll ween her after 4 weeks and keep testing. If once she’s off, her counts drop, the spleen will be removed.
Along with my recent job change, Ana gave notice to her current employer (Wells Fargo) and accepted a job offer at Memorial Medical Center where she’ll be doing some good ‘ol IT Project Management. She’s slated to start on February 18th. Congratulations Ana!
On a health note, we have gotten a second opinion on the treatment path for her ITP (because we found that she was not, in fact, cured). The new doctor’s treatment plan is much more aggressive and traditional in its approach – in line with everything we’ve read about ITP. The current plan is to very very slowly take her off of the prednisone while watching her platelet levels, and if they drop again they will remove her spleen. In preparation for this possibility, she is getting a Spleen and Liver scan done this morning at the hospital presumably to make sure her liver is in fine shape to take over for a non-existent spleen (yeah, apparently the liver will start to do the spleen’s job in its absence).
That’s what the nurse told Ana today after getting her blood tested. Bad results, she’s down to 15,000.
She was just about weaned off the prednisone, but is now getting bumped back up and will be tested again next week.
Well, it seems that I’m normal and my ITP was pregnancy induced. We made our second outing for my first post hospital blood count today and I am at 110,000 for my platelet levels. The low end of normal, but still normal. I think we may have also forgotten to mention that David had his blood drawn in the hospital to determine what his platelets were before his circumcision and his levels were at 275,000. So he is also normal and I didn’t screw him up too badly on that front.
I have also started the process of getting off of the Prednisone. Had my second day at the first step down dose with no horrible side effects thus far. My next appointment for blood checks and final signoff (hopefully) will be in the first week of January. At that time I will be nearly off the Pred and we will have a good understanding of what is truly normal for me.
We’re about to make our second trip out. Today we need to run to the Springfield Clinic so Ana can get her first blood test post-pregnancy. We’re crossing our fingers that her platelet levels have at least stayed steady (100k+) and hopefully risen substantially.
Yesterday I finished the first cut of the DVD chronicling David’s arrival and first few days. I burned a copy and we watched it this morning to look for things to fix. There are a few small tweaks to be made, and some more pictures and video to add but overall it looks pretty darn good. Can’t wait to get it all done.
Just a side note, I’ve collected around 8GB of stuff from David’s first week.