The Balduccis

My levels were finally tested again and they were at a whopping 961. The range is 700-1500. I imagine that soon Dr. Grey will either change my infusions back to every 4 weeks or lower my dosage. Anyhow, this is great…WONDERFUL News!

I think the bigger question IS CANCUN READY FOR US!? We are ready to do absolutely nothing and chill by the pool. Cancun is one thing, but have you seen the latest pics of my work trip to McAlester Oklahoma. Now there’s a trip. For those that can’t read sarcasm…that was loaded with it! Seriously though, we made the best of it and had as much fun as you can have in McAlester. I lost count on how many times we got lost or made the wrong turns. You’ll have to check out the pics…

Things are going well.  This month we made a big change regarding my therapy.  We started doing home infusions.  We very well may end up back at the outpatient infusion center, but right now all looks well!!!  The nurse was super!  The infusion went quicker.  Right now the only reason I could foresee sending me back to the outpatient center would be if the home infusions charged an absurd amount to insurance.

Just had my March infusion.  All went well.  Levels are back on the rise up which is great!  They were around 575, up from 445.   Easter is around the corner…

Lots of things going on!  I was able to get my infusion today.  Only a day late.  I was also able to get the full amount.  We originally thought I might only be getting half of it.  Good thing I got the full amount as my levels were down.  I don’t understand why they were down…but down pretty low…445.  I was really expecting them to come back at 700.  This is down about 200 from last check.  So quite a shock.

On a positive note we have come up with some possible alternatives on receiving the Gamunex drugs.  We are still researching it and trying to find out what will be the best for now and long term with my insurance.

I have an appointment with Dr. Gray on Tuesday.  Lots to discuss.  Why would my levels go down?  Why does she consider me so critical that I would need the Gamunex over some other patients?  The nurse today had asked her the same question and the answer she got was that I have no IgA opposed to other patients who do.  What does she think of the Gamunex options?  And there will be Dr. Schroeder’s findings.

Dr. Schroeder called me today with the results of his genetic tests.  I guess the most important finding is that I do in fact have the gene that they have identified in causing CVID or other Ig deficiencies.  Now they would love to test first degree family members (mom, dad, little michael, and Drew).  Their preference would be to wait and test Drew when he was older maybe around the age of 5.

I will need to get more blood work done that will tell them more on why I’m not producing Ig.  Are my B-cells just lazy or do they have memory problems.  Seriously…his words.

Also he believes that there will be a higher chance of me having thyroid problems…now or later.  So that should be fun.  On a positive note all the auto-immune flags, rheumotoid, lupus, etc came back negative.

I was on information overload.  He is sending me and Dr. Gray his findings in the mail, so when I receive that I will post more details.

Lets get everything on track, levels going good and then let’s just turn everything upside down again.  Today, I got up and got ready for my scheduled infusion.  On my way, I call so that they can begin preparing my medicine.  Richard then informs me, “We are out of Gamunex.  We are trying to get in touch with your doctor to see about changing your medication.”  I say okay, but my mind is screaming I don’t want to change meds!!!!  Everything was going so good.  Little to no reaction with Gamunex!  Why rock the boat!  You should read some of people’s experiences on forums.  Flu like symptoms, back aches, migraines…in bed for a couple of days.  I can’t stay in bed for 2 days!!!

I called back later to find out if I needed to come in.  Nope, Dr. Gray is not a fan of the other medication and feels that I would have a reaction.  I have since read on the internet about the two medications and Gamunex is by far the leader on IVIG therapy.  I go ahead and schedule an appointment for the next day although the nurse gives me little hope in more of the drug coming in.

Dr. Gray calls me and tells me that she has since called the hospital and they have 30g left.  I take 50g.  She has convinced them to put my name on this for tomorrow.  Her words, “Of all my patients, this one needs it more than anyone.”  Wow, that sure is nice of her.   Wait…WHAT?  WHAT does she mean, I need it more than anyone.  Now I’m really concerned.  She also tells me that she wants to get me signed up for subq.  We are going to talk next week about it.  Originally Michael and I were seriously interested in the subq method…now not so much.

Now I’m depressed.

and then I got a stomach bug!  ugh.  Drew also caught RSV.  Stomach bug is gone, but this morning I woke up with a sore throat.  I know adults can catch RSV also, but it should be no worse than a cold.

Next infusion is scheduled for Thursday.  I’m ready!

Levels were up to 651 this month!  That means that they are very close to low end of ‘normal’ at the END of the month, which is absolutely great news!!!

I called today to find out how my levels were from my infusion last week.  They were up from 545 to 595.  That is great news!  They are on their way back up!  They might also have been a tiny bit higher than that considering I had blood work done during our research visit at UAB.

Still haven’t heard anything back from the UAB doctor.  I will send another email, but I really don’t expect to hear anything till after Christmas.

Drew and Michael have had 2 colds and that I know of I didn’t catch them.  KNOCK ON WOOD FAST!

Because I try to keep most my negative comments from Drew’s blog…I do not however have any reservations about posting them here.    So yesterday I took Drew to see Santa.  All was going well, until the picture lady got her ratty looking puppet to try and make Drew smile for the picture.  Why oh WHY do they think the only way to get a child to smile is by sticking a ratty fuzzy puppet under their nose.  I mean geez.  Just go ahead and sneeze on  him already!

Still haven’t got my results from UAB.  I emailed once and will probably wait a couple more weeks before emailing again.

Things are going well, still feeling great.

We did receive my Immune Defiency Bulletin in the mail and it stated that flu shots were okay for CVID patients to get.  Flu Mist was not.  I know there are a few people out there with CVID that read my blog…if you haven’t signed up for that newsletter then you might want to do so.  They do sometimes have some good information in there.  It’s free and you can sign up somewhere on http://www.primaryimmune.org/