Wednesday, December 26, 2018

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.  




Sunday, December 23, 2018

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.