Skip to main content

Black Box Warnings


Today was a pretty simple day at the hospital.  We were at the University Hospital to follow up with Immunology and Shelbie's new dosing of IgG.

Our doc was pretty happy to see that Shelbie seemed much better than she was 3 months ago after having been through a rough biopsy and 6 weeks without IVIG, since we were transitioning care from local providers to specialists in Utah.

The question in his mind has been, are we doing more harm with the IgG treatments than we are good?  He seems to be a real numbers guy and I often feel guarded when it comes to talking about lab results.  There always seems to be a huge gap between her low, somewhat normal labs and the way she feels.  It was good to have that 6 weeks without a treatment so we could see how she did.  She was sick all the time and had to be on antibiotics.  So, in my mind, it's a no brainer...the IgG replacement is definitely giving her a better quality of life.   It also stabilizes her platelets which bounce around.

Our doc agreed and we will continue the plasma transfusions and reassess every 6 months.

But then...as we were getting ready to wrap things up, I mentioned that next week we are going back to sort out the pulmonary embolism Shelbie has and her heart issues.  He was panicked when I mentioned that.

There is a black box warning on the Hizentra, the plasma brand we use that it can cause blood clots.

It's never easy.   It was sort of a dramatic moment the way he addressed that news.  He immediately made it clear that it could have been caused from the plasma.  He made sure we understood the risk we were embarking on by continuing with this treatment plan.

I don't feel in my gut that it was caused by the plasma and I don't see that stopping it is going to be the best thing either.  Clearly, we are between a rock and a hard place and he has no idea what the right answer is for Shelbie either.  I don't imagine he will be wasting one second in meeting with our pulmonologist and cardiologist.

It does feel nice to know that we have a team that actually works together and communicates regularly and  gets along.  I haven't had to beat down some of the egos that providers can grow into so quickly it seems.  It's so refreshing to be in the midst of doctors who don't feel like they are competing or trying to act like God.

At this point, it is just too soon to say where we stand with the blood clot issue.

It happens over and over again...as I sit in these appointments, I am filled with gratitude and clarity that my kids are clearly being cared for by a loving Father in Heaven.  Shelbie's situation is so complex and life threatening but she has been given the gift of life.  The gift to press forward with Faith.  Some days, it can feel the opposite of that and certainly, it is one of those things that you don't see the gravity of the blessing until you see the weightiness of the trial...and...we try not to give the trial any attention until we sit in appointments like this and then, I am overcome with amazement at the blessings we nearly forgot to notice, let alone count.

Guess what...today, we encountered another ruckus at the hospital that required the police to show up!  Twice in a month.  What are the odds of that?  We were waiting in the lobby, at Starbucks because we arrived a little early.  A man went up to the counter and was being incredibly mean and using the most obscene language to the workers.  A woman beside him suggested he calm down.  That started a shouting match and extreme language and escalating anger ensued.  The man left and Starbuck's gave the woman a free drink.  The police showed up and the woman slipped away so she wouldn't get in trouble.  The police literally walked past her, nearly brushing up against her in the crowd of people.  She was right under their nose but had no idea.  There's an analogy in there somewhere.  It was interesting to see this all unfold but still, with all the violence in this country today, I was a little worried that things could have gotten out of hand.

Well...that was that.  I am wiped out.  Completely exhausted.  I don't even remember driving the last hour to get home.
Photobucket

Comments

Popular posts from this blog

Some Results

I was surprised to get a brief update from our doctor this morning.

They did not catch any seizure activity last week.  She said that while that may be good news, it didn't rule out deep structure seizures.   I asked if the test gave any insight to the cause of the slowing of activity in her brain and these were her words.

" No, this does not give an answer ... But it is just one test, done one time ..."

We are still waiting on the MRI results.  I'm not losing hope.  I know, I play this game ALL THE TIME...I wish for problems that no one in their right mind would wish for.  I only do that because it's usually the option with a fix.  Of all the things they are considering to be an issue for Shelbie, seizures are the simplest explanation and medication would manage it.

I'm certain we aren't going to find a solution to her problems any time soon.  While I sat in the waiting room during her 2 hour MRI last Thursday, there was a couple in the room as well.  A…

Random Saturday

Whenever I feel like we are careening out of control, I declutter and clean.  By midnight on Friday, I had 1/3 of my living room filled with stuff I didn't want.  Today, I made a couple of trips to the thrift store and the dump.

Ahhh, I feel like I lost 20 pounds.

When Sam came home after his first week at school a while back, he said, "Wow, my room looks the same."

"What did you think your room would look like?"  I asked.

"Clean."

Turkey!  He came home this morning with his laundry and was a bit despaired.  He said, "Mom, you gotta help me with the smell in my apartment!  I can't stand it anymore! Do we have any Ozium?"

He went on to explain that there is no garbage disposal in the kitchen sink but food gets crammed down there anyways.  He said he keeps putting the little metal drains in that are meant to catch bits of food but his roommates take them out.  He's about fed up.  And while he was on his rant about boys and their leve…

A Witness

I was expecting just another run of the mill night at the gym last night.  The kind where the 'meat heads' stay at their end of the gym grunting and groaning to sound strong and I would claim a little corner in the room where the Yogi's hang out and Plank, and there I would Spin on a bike for a few miles, do some rowing, a little TRX and finish up with some free weights.

Last night though, I actually decided to do an easier workout and took an inclined walk on the treadmill.  There were no meat heads in far end of the gym.  No one really at the gym at all.  For the longest time, I kept pace with an old guy on a bike behind me.

But then, a man and his son came in.  I knew them.  I knew them well but they don't know just how well I know them.  They have a son who passed away from Cystic Fibrosis a little while ago, he would have been Spencer's age now.  They have a younger son who also has CF.  I knew his wife and mother in law back when my kids were being diagnosed.…