Side Effects of the Gammagard Infusion...

So I decided I needed to be somewhat knowledgable about my infusion instead of being an ostrich, right?  

What are the possible or reasonably likely side effects of GAMMAGARD LIQUID for PI?

The following one or more possible reactions may occur at the site of infusion. These generally go away within a few hours, and are less likely after the first few infusions: Mild or moderate pain, swelling, itching, redness, bruising, and warmth.

During the infusion of GAMMAGARD LIQUID, look out for the first signs of the following common side effects: Headache, migraine, fever, fatigue, itching, rash/hives, cough, chest pain/tightness, chills/shaking chills, dizziness, nausea/vomiting, faster heart rate, upper abdominal pain, increased blood pressure, muscle cramps, and sore throat.

What is the most important information that I should know about GAMMAGARD LIQUID?

GAMMAGARD LIQUID can cause the following serious reactions:

• Severe allergic reactions causing difficulty in breathing or skin rashes
• Decreased kidney function or kidney failure
• Blood clots in the heart, brain, lungs or elsewhere in the body
• Severe headache, drowsiness, fever, painful eye movements, or nausea and vomiting
• Dark colored urine, swelling, fatigue, or difficulty breathing

Back to being an ostrich thankyouverymuch.

Gammagard Approved!

Off the topic of our Yellowstone vacation, and back to the Immune Deficiency discussion... hey, this is about my life and it is definitely a part of my life... sorry folks...  Here goes...

Remember?  I was in the hospital for 11 days so they could try to cure my forever sinus infection.  My IgG numbers had plummeted 200 points which means my antibodies were not in a good place - as well as my t-cells from my previous diagnosis.  Dr Carey decided I needed to start on IgIV immedicately to help control the constant infections that I get.

Then Dr Carey talked with NIH and they decided that it would be ok to wait a bit even with my IgG numbers low and see what happened.  What happened was after 11 days in the hospital, I went on vacation.  Exactly 2 weeks after I got off of the IV antibiotics, I got another sinus infection... a nasty one.

So I went for another visit wit Dr Carey (by the way he is my clinical immunologist) and he said I needed the IgIV if there was any hope of getting the sinus infection under control.  They filed with my insurance and it was immediately approved - no questions asked!  $20,000-$25,000 a month for the infusion and they approved.  That took me (and I believe his staff) by surprise.  My infusion nurse called today and I start one week from tomorrow... My first ever infusion day is August 9th, 2017 and if the insurance continues to approve it, it will be for the rest of my life.  I am preapproved for 6 months.  They will reapply in December.  This is another part of the immune system that never returns - but this part CAN be helped by replacing what is missing - my IgG antibiodies.

I am not reading up on Gammagard, a blood product, and it's side effects.  I have, however, asked my friends on the immunodeficiency board and there ARE side effects and asked about the preparation before taking it to try to quell the side effects.  I am to hydrate, hydrate and hydrate with V-8, water, Gatorade and good stuff for 2 days prior, the day of and 2 days after.  And I should expect to feel like I have been seriously hit with a bad case of flu and be in bed for several days after each infusion.  Sounds like fun, right?  The people on the Immune Deficiency Board say it is sooo worth it.  I am hoping this is a turn in the right direction.

But each unit (infusion) is a blood product taken from about 10,000 people.

That is all.

Yellowstone Adventure Continues!

We saw fields of canola:

Plateaus:

More plateaus...

 We saw rocks...

And lakes:

And plateaus:

Devil's Tower:

The Grand Tetons were amazing - we took a trolley to the top of a nearby mountain:

And then drove to the Grand Tetons:

The closer we got the more the scenery took my breath away:

We found a little lake to eat lunch by and could peek at the Tetons:

Found a little chapel in a valley:

And we added  states to our adventure!

A LONG Trip is Behind Us...

We left.  I got out of the hospital and we left for our Yellowstone vacation!!  What a long, wild ride!

A trip long planned; it took us over a year actually.  We started planning with Steve's cousin, Janine, who lives near Denver.  Aunt Sandra and Uncle Weldon heard and we said "come along!"  Mother and Rod jumped on board.  Mike and Joan joined in.  And before long we had a butt load of people heading north - after the big family reunion of course... but more about that later.

This is just part of us... We drove through Kansas:

We drove through Nebraska:

We drove through Wyoming.... a windmill randomly placed in the tumbleweeds:

We found a forest in Wyoming:

And a windmill to keep the grass cool somewhere in between... we passed through so many states I lost count of where... 

There is a song here somewhere here, I just know it...

And we finally found South Dakota and parked ourselves for a few days.  Crazy horse was our first attraction - only because it was near Mt Rushmore:

Well, the beginnings of it anyway... this is that it will look like when it is finished.  If you enlarge the picture above, you can see big cranes, machines and tools up there.  It will be pretty amazing... 

But nothing compares to this:

This was done with NO cranes.  No heavy machinery.  This was man-carved.  I was awestruck:

Then we went to The Badlands *gasp!*

It was breathtaking and God-made!  

And we went to Custer State Park; where we saw rams and buffalo:

Wait, I think the buffalo was in town:

And this is just the beginning!

I am BACK!!

If my blog would post from my phone, I would be a happy camper - but it doesn't... so I have catching up to do!  Get ready!

Home and Lovin' It

Busy, busy, busy!

I peeled 15 lbs of apples and dehydrated them...  And I have been packing... Getting ready for a wild adventure next week...

Walked around on our property and found some sand plums - thanks Steph for identifying them!

Went to Hebert's in Tulsa and had a shrimp poboy with my sweet man:

Fed the cows carrots when I was actually trying to feed the donkey... see Windy behind me? Don't worry about her - she got some carrots before the cattle invaded her space.

And I got photobombed by Elsie - who thought I was holding out on the carrots!

Been a great week.  I am happy to be free and happier to be home and cooking our own food.  ♥

We Did It! We Did It! We Really, Really Did!

It has been a rough two weeks for us, but we DID it!

My Dr plunked me in the hospital for two miserable weeks for IV antibiotics to get the 4.5 year sinus infection and chronic bronchitis under control.  I survived and so did Steve.  When I came home (after begging the Dr to let me pack - the case manager said I was a first ever to be released early by him - I whine good!) I had another 5 days of IV antibiotics Steve had to administer 24/7.  We got 'er done and I have been able to pack for our vacation!  

Here are a few pictures of what we went through during those 5 days:

That little round cylinder is my medicine!  There medicine was one small cylinder and the other medicine was a large cylinder.  CVS invented these COBAN cylinders to give you IV antibiotics without the pole - they self deliver!  I actually put these in my apron pocket and went about my business while the antibiotics delivered through the pressurized system.  WAY TO GO CVS!  It was about as easy as it could be considering the circumstances.  The courier even delivered the medicine cases (2 HUGE boxes) from 2 hours away.  They called before we left the hospital and met us at our house for delivery!

AND I got the PICC line out today!  After a visit with the Dr, he agreed it was time to remove it - but in the same breath said, "Next time we won't let it go so long..."  

NEXT TIME... *sigh*  He is pretty sure this won't be the last time I have IV antibiotics.

But we did get some good news!  My IgG has dropped well below what is considered to be a normal level.  I shouldn't be making antibodies, but when he tested my pheumoccocal vaccine titer, I had made antibodies against some of the pneumonia types - not all, but some!  So... we are waiting on more tests, but my body is making antibodies to some extent.  My Dr said he has no idea how that is happening, but it is.  YAY!  

Now, my update on whether or not this helped - I feel better than I have in a very long time! So these IV antibiotics definitely did help!  I am stoked!

Well that was my week.  I am packing for an adventure the next few days, but I will try to update about something fun now!  Like I said, it has been a rough few weeks.

Putting my Ninja Warrior suit on so I won't be annoyed by infections!

ZEBRA STRONG!
Immunodeficiency Sucks.

I Need A Jail Break!

Today is one week that I have been in the hospital for a chronic sinus and bronchitis infection.  My Dr came in yesterday and said maybe by Tuesday I will be able to go home.  Believe me, I am ready.

I am in isolation; few visitors can come in and they must not be sick - even a little sick.  All of the staff has to dress in gowns, masks and gloves to enter my room.  God forbid should they forget something... they have to strip the sterile gowns, gloves and masks, go get what they forgot and redress to come back into my room.  I don't bother them.  Once they come in, I give a list of what I need; bottled water, spoons, sterile water... whatever.  Other than that, they don't know I am here until their computer tells them they need to change my IV or bring me medicines.  All of this means I have very little contact with anyone.    

I am not allowed to have fresh fruits and veggies, not allowed to have ice or water out of the machine.  I get bottled water only and it must be washed before opening - and no ice at all - not even from the hospital kitchen.  I can't go out of the room without a mask or gloves.  I have to wash when I return.  

All of this because of the lack of immune system.  My ICL was bad enough, but now I have been diagnosed with hypogammaglobulinemia - another word I have to learn to pronounce because I have it.  The Dr explained since my T-cells are missing, they cannot tell my B-cells what to do.  Since the B-cells are clueless, they don't make antibodies to protect me from germs, viruses, and whatever... yep, it just means my immune system continues to tank.

"Hypogammaglobulinemia is an immune disorder characterized by a reduction in all types of gamma globulins, including antibodies that help fight infection"

There is help for the hypogammaglobulinemia - I will start monthly IgIV's to replace what my body doesn't make.  This does not help my t-cell deficiency, but it will help me fight the infections my IgG should be fighting.  I had no idea the immune system was so complex!

So that is my update today... I know you may get sick of hearing about my ICL and immunity problems, but I am honestly trying to find someone else that has it and to open people's eyes to immunodificiencies.  It is just not that common and I need to tell my story.

In the meantime, I am wrapped in love while I am here:

And thanks to the few who have braved coming up to see me.  I was not allowed to have visitors, but my hubby, sister and another friend have dropped by.  And the cards are adorable!  Thank you, thank you!  

I need a jail break.  Seriously need to just go home.  I miss my life. I miss my hubby most.