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WEDNESDAY, DECEMBER 26, 2018

Here We Go Again

WEDNESDAY, DECEMBER 26, 2018Here We Go Again

Yep, here we go again.  6th unit of blood in a week.  😳

Honestly, I am just so weak and tired...  Hemoocrit is... I don’t remember... low enough for more blood... potassium bottomed out last night as well, started having awful muscle cramps...  of course I am severely anemic, have dozens of needle punctures - I look beat up.  I have been bedridden for over a week now so my strength is sapped.  🛌 

Ya’ll...  I am tired of swimming upstream, but I am still swimmin’.  🐠

Praying for answers and healing if it is God’s will.

Just continue to pray please. 

Have I said I love this man?  He continues to be my rock.  

Blooms in our Yard

Some things are just too good to not to share.

                                  
My daughter showed me years ago, even backs are pretty.


               

These make me smile.

Louisiana Has My Heart

   

 

I just saw this picture from Morgan City, where we used to live.  A tropical storm is bearing down on them.  I don’t miss that part of our lives there.  In fact, if it is possible, since Hurricane Andrew, It seems I have PTSD; I get anxious, even here living in Oklahoma, when a storm forms, and my worrying gets worse once it enters the gulf. 

We still have friends there, so even if we don’t talk regularly, we do when storms approach.  We care about them.  We left that life behind, but we didn’t forget the wonderful people, our dear friends and bayou life.

The decision to move from Louisiana was not taken lightly.  We had lived there 32 years.  We grew into adults there, had made it our home, raised our children there and had many very, dear friends.  But God has written our story.  He knew I needed to be in Oklahoma to get the correct diagnosis.  He put it into our hearts that moving here was a necessity.  We had no idea why then, but later realized God always looks out for us, we just have to listen.

Within 2 years of moving to Oklahoma, one Dr diagnosed me, another agreed to oversee me and make decisions I don’t know how to make about what is best for my health.  He made the perfect circumstances for Steve to retire, after my diagnosis, so he could be with me through my medical journey.  This isn’t an easy life.  I can’t get involved like I used to be, and we had moved far out in the country prior to my diagnosis.  We love it here, but it does get lonesome. 

The reality is that with my diagnosis, the less exposure to the public, the safer I am.  So, having left my cherished friends behind, starting life in the country, in another state, prior to my diagnosis leaves me missing those steadfast friends we left behind.  It has been difficult to make new friends here, but I do have one very dear friend and sewing buddy.  And thankfully Steve and I are best friends.  

I couldn’t walk this journey without those we left behind and those we have gained.  I couldn’t do it without my Oklahoma medical team and not without my precious hubby. The strength I had gained prior to our move was forged by deep friendships and southern (soggy) roots.

And I certainly couldn’t be on this journey without God’s guidance.  He has never steered me wrong.


I took this picture last week if God’s promise.

Stay strong my southern buddies.  I love you.  And God loves you more.

The Bleed

I can't tell you how many times in the last three weeks I thought I had taken my last breath.  This has been the hardest ordeal in my life to come back from.  A GI bleed that took all my blood and more.

I think it all started on December 17, 2018.  I went to the hospital, fainted in the ER, fast tracked to trauma, was admitted, and they thought the GI bleed had corrected itself.  I came home a few days later, was home a night or two, started bleeding again and was readmitted to the hospital.  I went through multiple tests; 2 CATA (CAT scan angiogram), then a Red Blood Cell Nuclear Scan specifically to (finally) locate the bleed, then an Angiogram to coil and cauterize the bleed.  It ended up being behind my liver in the GI tract.  I lost a lot more blood and had many transfusions, but after the angiogram I went unconscious and they moved me to ICU for the night.  The next day I went into a regular room and was sent home with no more bleeding a day or so later.  I was home 2 nights.

New Years Day, I was just starting to recover from all the testing/blood loss, when lo and behold, I started bleeding again - I had been home two days.  Back to the hospital again the Dr informed me I had to have a colectomy.  He would determine how severe when he got in there, but thought it would just be the bleeding side.  I had a right hemicolectomy (right side of my bowel was removed) and finally the bleeding has stopped.  I am home.  I think I came home on Jan 8th.  My days and weeks are all messed up...

I am sure I was weak from 14 units of blood prior to the surgery.  The blood was irradiated because I cannot fight white blood cells with my immune deficiency, so I got only whole red blood cells, which also means I got no antibodies as the irradiated blood takes those away as well.  And since I had none of my own blood left, I had no IgIV antibodies left.

My Immunologist was out of the country in south Africa.  I missed his steadfast confidence.  My Drs were able to contact him and NIH for advice, and I got IgIV the night before surgery.  He will be back on the 28 of January and I am his first patient.  We have a lot to catch up on.

I didn't know even one Dr who oversaw my care while I was in St John's hospital, but every Dr was top notch.  Every nurse was as well - well, except Shannon.  Shannon and I will never see eye to eye.  She is not worth telling that story.  Other than her, I had some pretty incredible Drs, nurses and aids.  

The family medical group that oversaw my care was from IHI in Tulsa.  IHI = In His Image.  Can you imagine?  They prayed with me every visit.  I loved them and I loved having their prayers with every procedure.

I would not be alive if I hadn't had thousands of prayers coming from all parts of the world.  I asked on Facebook to be added to prayer lists and was put on dozens of prayer lists.  I kept getting messages more were praying for me.  What an incredible feeling.  Knowing people were praying for my healing.

That is all to this story.  3 long, very bloody, terrifying weeks.  And I am alive to tell you about it.  Praise God.  And I am getting better every day; stronger and finally determined to get through this.  2 weeks ago, I wasn't.

And one amazing man that was there encouraging me every step of the way.  I love you, Steve.  Thank you for being my rock and encourager when I wanted to toss in the towel.

More Blood...

Yep, here we go again.  6th unit of blood in a week.  😳

Honestly, I am just so weak and tired...  Hemoocrit is... I don’t remember... low enough for more blood... potassium bottomed out last night as well, started having awful muscle cramps...  of course I am severely anemic, have dozens of needle punctures - I look beat up.  I have been bedridden for over a week now so my strength is sapped.  🛌

Ya’ll...  I am tired of swimming upstream, but I am still swimmin’.  🐠

Praying for answers and healing if it is God’s will.

Just continue to pray please.

Have I said I love this man?  He continues to be my rock.  

I Am BACKKKK!!

My view this week has been pretty much this - except with medical staff; nurses and Drs.  I prefer this scene so I am sharing it.  I have been hospitalized in serious condition... but more on that in a bit.

The last few days have made me do some serious thinking.  I miss my blog and sharing my life - even though it seems pretty boring to everyone else, it is amazingly content for me.  And we have done some pretty great things that I will just have to catch you up on this year, so be expecting that during these Oklahoma cold, wintery months. 

So what gave me this change of thought?

Here goes... So this is nothing related to ICL or PI, but I just barely missed losing my life this week. Monday, at 2pm I went home from my daughter’s to eat a sandwich. She lives 2.5 miles from me. I went back to her place to help finish packing orders (she has a soap business) and came back home at 4pm.

At 4:15 I went to the restroom and filled the toilet with bright red blood. We live far out in the country, so my hubby drove 45 minutes to the ER. I fainted as I walked up to the ER window, woke to the the rapid response team moving me to a stretcher, seeing lots of blood. I was fast tracked to trauma, filled 3 bedpans with blood, 2 partials with blood and I have little recollection from there on.

Somehow I was admitted, continued to bleed through Thursday morning. I have received at least 4 units of radiated blood and had an upper Gi which was clear.

I have bled more blood than I thought a person had, they have had rapid response in for my total loss of consciousness several times, but finally, I am stable. My hemocrit at last count was 8.1. Waiting for the next count, but hopefully it is now stable - no blood for 24 hours.

They did a lower GI today; it was clear with only diverticulosis, but no infection or bleed. They believe this was a diverticular bleedout that (hopefully) has resolved itself.

I have never been so scared in my life. Even when conscious all I could see was more blood coming. I was bleeding to death with no control whatsoever. I was in absolutely no pain.  I lost over half my blood supply in just a few short hours Monday-Wednesdaay.  I checked out of the hospital with a hemacrit level of 8.3 on Thursday.

We can go south in a heartbeat, friends. This had nothing to do with ICL, Hypogammaglobulinanemia, or PI, but getting STAT blood, trauma teams racing with no thought to immunodeficiency and soooo many people in and out, touching, moving, transporting, procedures, and seldom masks... all of this absolutely does have something to do with ICL and immunodeficiencies.

Every medical person I have seen since I have been conscious has been asked if they know about PI and asked to read up on it. I have corrected numerous MEDICAL staff from auto-immune to immunodeficiency. They are freaking CLUELESS!  Please try to educate them. Specifically ASK each of them to read up on PI’s (Primary Immunodeficiencies).

Stay safe loved ones.  Life is fragile. I am stable now and will take it very easy for the holidays. You all do the same. I just want to be safe at home with my loves in my little corner of the world. I don’t even care if I celebrate Christmas.

We are in this together. Keep on swimming no matter how the current flows!  We all have our crosses to bear.  🐠 

Love you all.

The picture above is your Christmas card - I am laying low and enjoying life.  Merry Christmas, Happy Hanukkah and many blessings to you and yours.  

Same, Same, but Different Day

A soul baring day.  I am sick. Sick of the constant headache, sick of the sinus infection that gives it to me, sick of the tenderness in my chest from the Power Port, sick of being sick all the flipping time, sick of not being able to enjoy a weekend out, sick of the medical bills and sick of being in the position I am in with no future without it.  I am just done.  I have been struggling for weeks.

The sudden 10 day hospital stay was the beginning, then the at home IV antibiotics for another week.  After that the IgG infusion request to the insurance with the immediate confirmation I needed it.  A week later, I started the infusions; every 28 days, 6+ hours, in the Drs office... getting liquid gold.  Every drip I see $$$$ going into my veins.  I start getting ready for the infusion 4 days early drinking crap I don't want; V-8, sugar free Powerade, 100+ oz of water every day for 4 days.  Then after the infusion a week of who knows what kind of side effects. 

No stress?  Ha!  Try getting these bills and figuring out how to pay them.  Sick of that as well.  

I KNOW people have it worse than me.  I know that.  I keep telling myself (and everyone else reminds me... you know, friends...) that I am lucky and people have worse things.  My 'friend' reminded me her daughter had ovarian cancer and *never* complained.  God cured her.  I should be grateful, but for now, I just need to figure out how to wrap my mind around this life; this life that keeps changing, this solid chunk of metal in my chest, this plastic tubing snaking up and over my collar bone; reality striking me from every which way again and again.  I am over it.  I am sick of it.  I want to be well.

But I can't.  I will never be well.

That sucks.

And all of this started because I went to my 40th High School Reunion and enjoyed it.  Now I am paying for it.  More on the reunion later.  Going back to bed for now.  

Tomorrow will be better.  This blog is about my reality.  I have lots of good days, but the bad days really suck rocks.