Monday, August 14, 2017

Our Whole Family Is Here!

Our kids are here from California!  Cheyenne, Jeremy, Marcus and Aedan arrived by Amtrack Train on July 31st.  We have been having a blast with the kids here... we've done lots of things (more on them later)... but the most important was getting pictures!  I asked Steph to take pics of all of us and last night was the big night.  I am very pleased with the pics! 

The whole darned family, August 13, 2017:

Steve and I with our children Jeremy and Stephenie:

Steve and I with our grandchildren Marcus, Raelee and Aedan:

Just Steve and I... yes, I am very gray:

Raelee, Marcus and Aedan:



Raelee (who has "The Pose" down to a T):

Cheyenne, Jeremy, Marcus and Aedan with our dogs:

Cheyenne, Jeremy, Marcus and Aedan:

Cheyenne and Jeremy:

 Todd and Stephenie

I am super proud of these pics!  Thank you, thank you, Stephenie for taking them!!  

I am super proud of our little family.  We did good... our kids are happily married and we have awesome grandkids with manners, tender hearts and lots of love throughout all the families.  We did a lot of things right... 

What do you think of our pictures??

Sunday, August 13, 2017

Day 3 Post Infusion Update

Day 3 Post Infusion update: Yesterday afternoon, I got a horrific headache, tried to wait it out, but after a few hours I called the Drs office; I was told I described a classic post infusion headache, to take Tylenol & Benadryl and try to sleep it off. Slept 8 hours, woke to no headache! Today was terrific! Played all stinkin' day with our kids and grandkids. No fatigue, no brain fog and at 11:27 I am still awake. Had a great day. Starting to get very optimistic here... 😊 No pictures today, I still can't figure out how to get the pics from my phone to the blog... grrr...

Friday, August 11, 2017

Day 2 Post Infusion and T-Shirt Book Bags

Wow!  That is all I can say!  This infusion has taken away a lot of my fatigue and all of my brain fog!  I have high hopes!  Day 2 post IgG infusion is great!  I woke with very little (normal?) aches and pains, more energy than I have had in ages, zero brain fog and only a few itchies!  LOVIN' it!  Every time I stand, I have to pause - it is like I have a new body!  They may be on to something!  WHOOT!!

Yesterday, I felt so good I went to an OHCE (Oklahoma Health and Community Education) event where we took old t-shirts and made book bags!  Oh the fun we had!  Take a look at the pictures:

We had sooo much fun!!  

Here is a linky to go by - if you want to make t-shirt book bags:

T-Shirt Book Bags

The only thing we did different was to do everything with the right side out so that the fringe was showing.  LOVE these book bags - we are going to give them away at our county fair - with books of course!

I might be BACK!!  I am beginning to feel normal!  Scary, huh?  


Thursday, August 10, 2017

1st Ever IgG Infusion for Me... Day 1 Post Infusion

I woke yesterday at 5:30 am, showered, ate and hydrated.  111.5 oz fluids yesterday and I had 41.5 oz before I got to the infusion clinic.  Steve went with me because we had no idea what to expect.... I love that man!  

I came face to face with this:

They started the IV fine, but about 2 hours into it, I got a major headache.  My infusion nurse, Angie, came in and lowed from 50 to 45.  This helped.  About an hour later, my IV blew.  Back to the picture above... trying to find a vein... and with a lot of difficulty (4 more tries), they finally got another one started, but it looks like I will be getting a port in my near future. 

The vein they found was in my thumb!  I couldn't crochet or do anything fun.  See my infusion afghan?  My awesome daughter-in-law, Cheyenne, made it for me!  

I finished the infusions just fine with no other ill side effects. Last night, however, I developed a few small hives on my legs, and still have them today - but that is it!

As I was leaving, they re-explained side effects to me and said that I could experience some of them any time during the next 3-5 days and to call immediately - day or night if I did... 1) They need to oversee the side effects and 2) The side effects have to reported to the FDA right away.  *gasp*

Today I feel great!  I don't have the doggone severe fatigue that I normally do, my brainfog is gone, I can think clearly and though I still have hives (not many) I am otherwise physically much better than I have been.  Holding my breath this is exactly what I needed!

And finally, I came home to the most beautiful plants!  See the zebra bow??  YAY!!  I love the ivy - it has been years since I had one!  The gifts made my day!  💕

Tomorrow - on to other things.  Again, ICL is my life, so I have to blog about my life... and to share with others who may being going through the same things... I hope to find at least one other person that has Idiopathic CD+ Lymphocytopenia.  That would be amazing.     

The nurse just called - I will be getting a permanent port inserted in my chest within the next 2 weeks.  :-(
*reality strikes again* 

Wednesday, August 9, 2017

Liquid Gold Infusion #1 Day

Today is my first infusion day.  I am nervous.  I have no idea what expect except lots of nasty side effects for a few days.  You can read about them HERE...

I have done all the right things;  I have rested, I have hydrated, I drank V-8 (YUCK!) and I have drank poweraide.  Here's to an easy infusion... my first ever.

Apparently I will be doing an infusion every month for the rest of my life.  Scary?  Yes, absolutely!  For some reason I feel like it is the beginning of my demise.  😓

I know!  I know!  People have done it for years!  I don't think it is this infusion that is concerning me as much as the crash of necessary immune system that I need to survive!

I just cannot wrap my mind around this train wreck.  One thing crashes and another follows and another.  If this one can be fixed, fine, but since the ICL cannot be fixed, is this IgG infusion even worth getting?  I don't have the answer.  And it is a blood product from many people.  Every month, a blood product taken from MANY people.  That in itself is terrifying.  The price in itself is overwhelming!  Gads, so many things to fret over.  And I am sick - get this - with an awful sinus infection.  Go figure.

Steve will go with me this time.  He will stay to be sure things are going well, then run some errands in Tulsa.  I will be in the infusion clinic for at least 4 hours and up to 8.  They told me probably closer to 8 the first time.  I am to pack lunch, my V-8 (YUCK!), snacks and Powerade.  I am also to bring things to do; read, crochet, d/l a movie... just stuff to occupy my time.  

This'll be fun.

Not.  Looking.  Forward.  To.  This.

Tuesday, August 8, 2017

The Best Part of the Vacation

The best part of the entire Yellowstone Vacation was being with our family.  We had a blast together!

Aunt Sandra manning the maps:

Janine, Steve's cousin, was the one that initiated the idea of going to Yellowstone.  It kinda just grew on its own.  Steve and Janine were very close as kids.  Here they are at Crazy Horse:

Aunt Sandra and Uncle Weldon at Crazy Horse:

Uncle Weldon, Janine and Chappie (Janine's husband):

Rod at the Mid-America Air Museum in Liberal Kansas - it was awesome!  I don't know who he is with... I didn't go outside - but the inside museum was amazing... best air museum I have ever been to!  

Just a few of the airplane's on display:

And here is the beginning of the trip Steve, Aunt Sandra, Rod, Chappie, Janine and Uncle Weldon.  Mother was off somewhere and I took the picture:

Chappie and Rod with Ellis and Janine... 

Janine and Aunt Sandra:

Janine and Uncle Weldon:

Mother and Ellis:

 See mother and Rod way out there sitting with Ellis?

Steve and Mike chatting:

Joan, Aunt Sandra and Steve:

Uncle Weldon and his ice cream... oh my gosh, this man loves his ice cream!

And here is the whole gang in Jackson Hole, Wyoming!  Joan, Mike, Uncle Weldon, Aunt Sandra, Steve is behind Aunt Sandra, me, mother and Rod:

We had a great time hanging out together.  I can't wait to do it again!  We are planning a re-make of last years disastrous trip to Lake Wister.  This time, there won't be an accident and it will be great!  Can't wait to have the re-do so those memories will be good - not awful ones like they are now.

Tomorrow is my big day - Liquid Gold Infusion Day!  My first one ever.  Wish me luck!

Friday, August 4, 2017

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.

Wednesday, August 2, 2017

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.

Tuesday, August 1, 2017

Yellowstone Adventure Continues!

We saw fields of canola:


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!

Singapore Memory Project