Greg's IVIG Treatment

So, we've gone through six IVIG treatments for Greg so far and they have been going very well.   I was pleasantly surprised that everything went through our insurance at what I consider to be record speed!  All the authorizations were completed and approved without issues or a lot of work on my part, which was fabulous!  

IVIG is intravenous immune globulin.   Immunoglobulin is part of the blood's plasma and has antibodies in it to fight germs or disease.  When people donate blood, this part can be separated out and can be given to a patient in an IV or subcutaneously (under the skin, but not in a vein) to help strengthen their immune system so they can fight infections and stay healthy.   It can take between 1,000 and 15,000 donors per batch.  In Greg's case, his immune system hasn't been normal since his bone marrow transplant in 2000.  That's really not unusual.    

For anyone that's read my blog for any length of time, you already know that Greg has had a lot of infections.  His sinus infections were almost constant, which was why he had the sinus surgery late last year.   Thanks to the suggestion of our wonderful Case Manager, Jeanne, we went to see an immunologist and discovered that his IGG levels were indeed low.   So, it was time to set up the IVIG treatments to see if we could boost that and get Greg finally to a place where he's not sick all the time!  

We received a box of supplies via Fed Ex.  These are all the supplies and medicine we should need for a month's worth of treatments.   The picture on the left is all of the supplies in a plastic tote I bought to keep everything organized and away from the cats and dogs.    The picture on the right is what needs to be used for one treatment:  alcohol wipes, bandages, gauze pads, the Immune Globulin, a sterile drape to put everything on, two 60 CC syringes (he gets 50 cc's from each bottle of Immune Globulin), a subcutaneous infusion set (the "lines" that are used to infuse), five transparent film dressings to place over the needles so they don't pop out (like what is used over an IV), a mini transfer pin, which is used to transfer the Immune Globulin from the bottles to the syringes, a sharps container for the needles, the infusion pump and even an Epi pen, in case he ends up having a severe allergic reaction, so I can stab him in the thigh while I call 911!    

The home health nurse came to our house three times.  The first time, she instructed me on what to do while directing me on how to do it and the next two times, I handled the treatment with her just watching and answering any questions we had.  I've now given Greg his treatments twice without the nurse and it's gone quite smooth.  

It all starts by getting the serum into the syringe.   That funky thing on the bottle is the "mini transfer pin" mentioned above.  

Then the syringe is attached to the end of these.  These are called an "infusion set." There is a tiny needle on the end of each of those 5 lines.  

It's kind of hard to see in this picture, but the needle is what my index finger is kind of pointing to.   It's really tiny, and thinner than a standard straight pin that you would use for sewing.  

To insert the needle, you simply have to grab a bit of your love handles and, after cleaning with an alcohol wipe, insert the needle.  Greg has said it's much like a mosquito bite.   There are five needles in all, so we put three on one side of his belly and two on the other and cover with 

Once all the needles are in, the syringe is placed in this infusion pump.   It takes about 30 minutes for one syringe.  Once that one is done, we simply attach a new syringe to the end of the infusion set and put it in the pump.  Another 30 minutes, and we're done!  

This is what it looks like when the medicine is being infused.   

He ends up with a bit of a bulge where the needles are located, which is normal,  but that usually goes away by morning. 








So, that's what his IVIG treatment is!  This is definitely an expensive treatment, especially when it's done weekly.  The cost for one treatment is $4,081.  If we are going to continue these treatments weekly, one year will cost $212,212!    But, if it's going to keep him from getting sick, then it's certainly worth it! 

Thank goodness we have wonderful health insurance.  I'm glad United HealthCare did not take this into account when they hired me because they are certainly on the losing end of the financial stick!!  Ha, ha!   

Hope all is well for everyone!  

Peace and Prayers for all! 

Julie 

More Tests and Surgery in Greg's Future!

It seems to never end for Greg.  As usual, if it's not one thing, it's another.  We are now at the point of one thing AND another!   A few weeks ago, I went with Greg to see an immunologist.  He's had so many sinus infections, even after his sinus surgery that there has to be something going on.  He's had a compromised immune system ever since his bone marrow transplant (on April 12, 2000 -- 18 years ago!), which is completely normal.  His immune system was destroyed by the high dose chemotherapy and total body radiation he had back then.  That is what they have to do in order to give you a *new* immune system from your donor.  In Greg's case, that was his brother, Tommy.  A perfect match!  

So, because he kept getting sinus infections, even after the sinus surgery, we decided to visit the Immunologist to try and figure out if there was something going on with his immune system.  He had blood work done and eight vials were taken.  Some of the tests were specialized enough that they had to be sent to Utah!   

The immunologist advised that two out of the three things they look at with regard to his immune system were low (sorry, I can't remember what they were).  And not just a little low, or near normal, but kind of low, but VERY low.   The first thing he wanted to do was give Greg a pneumococcal pneumonia vaccine, because he's never had one.  He did have a pneumonia vaccine a while back, but never the pneumococcal vaccine.  

The doc said that that can potentially help with the sinus issues and chest congestion, etc.  In about five weeks, Greg will have more blood tests done, and, assuming the results are the same, he may be a candidate for what's called IVIG treatment.  Basically, it is an intravenous treatment that delivers immunoglobulin (found in plasma) donated from healthy people to Greg to boost his immune system.  It can take as many as 1,000 individual plasma donations to treat one patient for a year! (Holy crap!)   Treatment is generally every 3-4 weeks and is usually VERY expensive.  Nearest estimates I can find are anywhere from $5,000 to $30,000 per treatment!  I'm not sure how long a person needs to continue treatment, but that is something we will find out if this is what is recommended for Greg.  

Next, we saw the oncologist to get the results of the CT scan and Nuclear CT Scan that Greg had on Wednesday.  The scans were of his parathyroid glands.  There are four glands behind the thyroid -- they have nothing to do with the thyroid though.  Those glands are located in the neck and control the body's calcium levels.  They are about the size of a grain of rice.   When a person has hyperparathyroidism, one (or more) of the parathyroid glands is basically an overachiever.  They produce too much calcium.  The other glands should compensate by producing less calcium, but with hyperparathyroidism, the other glands continue to produce calcium, so the body has too much calcium. 

Some of the symptoms of hyperparathyroidism that are currently affecting Greg are:  

• Excessive urination
• Tiring easily or weakness
• Depression or forgetfulness
• Bone and joint pain
• Frequent complaints of illness with no apparent cause

The "cure" for this is to simply remove the overachieving parathyroid glands.  So, Greg will be having yet another surgery to have the two parathyroid glands on the left side removed.  Most patients report almost immediate results from the surgery, even going so far as to report feeling better while in recovery!  This could be a huge game changer for Greg and explains so many things that he is currently dealing with!   

So, that is what happened today.  I apologize for not getting this out sooner, but seeing as we were in town, we had to do some shopping, and then had to make dinner, etc.  

As far as other issues, Greg is now about three weeks sober and things are going well.  It's not been easy, but it's a lot harder when he's drinking.  So, all is well.  Prayers that he is able to continue with his sobriety are certainly appreciated!  

As always, I'll keep you updated on all the going's ons here at the Mik Homestead!    

Blessings to all! 

Julie