Rocket Science -and Casey
Good Morning!
As many of you know, Casey's blood work has come back, in part.
She is sleeping- all day long- awake for a few hours, then back to sleep.
Her iron is at 2.0- Not near close enough to function. For now, she is at home.
I spoke to her a few times yesterday.
She awaits a call back from Minnesota.
The doctors here have come up with a brilliant plan...
They would like her to do 6 more infusions before they do anything else; including looking for a possible intestinal bleed.
Wait... WHAT?!?
My question to her doctor remains unanswered, "If the 1st 6 infusions had little/no lasting effects, what makes them think that the next 6 will be their cure for her?"
I asked that question 3 different times while on the phone with him.
He skirted an acceptable answer by stating that Casey's veins were small and that this was the reason they had to go so slow.
(So what difference then does it make whether they went slow or fast as the iron was still getting IN her veins with each infusion)?
I reminded him nicely that Casey's veins had not changed one bit since she had received the first 6 infusions...
She received 125 mg iron each time, diluted in saline. To go any higher is to risk even more side effects than she did previously- Including the lasting side~effects that she is STILL experiencing!
As recently as Tuesday, she was here- and had diplopia, (double vision).
Not to mention her unrelenting migraines, her inability to thrive no matter what she eats- or how she supplements her diet.
Apparently her system is shutting down from their magical combination of everything-
Yet to have her take more infusions without first investigating the cause of her iron loss, seems a bit of a reach.
If she'd had no reactions the first time around, I might feel differently.
And while I understand the need for speed, I do not understand why not investigate and define until after she has done another 6 weeks. Something inside me is screaming that this is wrong- and my intuition has never been wrong.
Those side effects? Here- just to name a few!
...elemental iron doses of 125 mg/kg, 78.8 mg/kg, 62.5 mg/kg and 250 mg/kg caused deaths to mice, rats, rabbits, and dogs respectively.
The major symptoms of acute toxicity were decreased activity, staggering, ataxia, increases in the respiratory rate, tremor, and convulsions. Individual doses exceeding 125 mg may be associated with a higher incidence and/or severity of adverse events based on information from postmarketing spontaneous reports.
{Some} adverse events included hypotension, nausea, vomiting, abdominal pain, diarrhea, dizziness, dyspnea, urticaria, chest pain, paresthesia, and peripheral swelling.
* For a more complete list- CLICK HERE.
Casey and I were talking the other day- She had mentioned about a friend who blanketed her dog, and found that silly.
When I wake up, Punk will take over where ever I slept. For some silly reason she loves my pillow, (even though I would imagine it smells like 'morning breath' once my head leaves it)...
Her head hits that pillow-
As I return to the room in a few minutes, she looks at me- (Those puppy dog eyes).
I throw the blanket over her -and all is well.
She doesn't need it.
She sure wants it though...
Punk- early morning...
Later yesterday morning as I'd gotten out of the shower and had emerged to get clothing, I damn near tripped over her!
She had dragged that darn blanket all the way through the house- (How she made it around the ironing board without a disaster is beyond me)!
"ARF!" Did I do something wrong? "I'm not in trouble, am I?"
Of course she wasn't in trouble- It's just too funny to see!
Yesterday afternoon she had to go outside. It was rainy and cold- Chilly in the house even. As she came back in, she laid in the living room.
But first...
She had to find that darn little blanket! hehehe
I woke this morning to thunder and lightning. Weird for September, and the wind too!
From my weather report on here was this "A LARGE AREA OF RAIN WITH SOME EMBEDDED THUNDERSTORMS CONTINUED TO ACROSS CENTRAL AND NORTHERN WISCONSIN EARLY THIS MORNING. AT 300AM...MODERATE TO OCCASIONALLY HEAVY RAIN WAS OCCURRING" 2 TO 3 INCHES OF RAIN FELL IN NORTH-CENTRAL WISCONSIN...AND ADDITIONAL RAINFALLS IN THIS AREA WILL BE LIGHT. CENTRAL THROUGH NORTHEAST WISCONSIN RECEIVED 1 TO 2 INCHES OF RAIN THUS FAR...AND ANOTHER HALF INCH OR SO IS EXPECTED IN THESE AREAS.
PLAN ON A SLOWER THAN NORMAL TRIP. IF YOU ENCOUNTER PONDED WATER ON THE ROADWAY OR IN A PARKING LOT...
NEVER DRIVE YOUR CAR INTO WATER OF UNKNOWN DEPTH."
Always they have to remind people not to drive through flooded areas? Why is that?
Why do people have to be told this over and over again? Methinks if you are 'st00pid' enough to try driving through a new 'lake' on the street then you deserve to be stranded in the middle of the street for a while.
It's almost as brilliant of their need to tell people to slow down in fog, or snow.
When did common sense turn to rocket science? What did I miss?
Oh!!!! must close quickly- no proofreading today.
Casey has just texted me and has a blood clot in her arm. Is this psrt of being anemic?
Greg is bringing her to the hospital. I will meet her there
XOXO
Me
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Punk is so cute! I wish I had a medical degree so I could tell you some magic cure all for Casey
ReplyDeletecasy is in my daily prayers, as are you sister....punk just likes the comfort of the blanket.....mammmals do that, they like the cuddly comfort of another person, or a blanket in punks case, maybe casey could use the same today....
ReplyDeleteGod hold close sister casey in your loving arms...let her feel the comfort of your presence in her life....give her your strength as on her own she is so very weak, be there Lord for this family as they go through this ordeal....hold close in comfort those who seek you and your healing ways.....asking in the name of Jesus Christ..amen...
If she has a slow bleed all the infusions in the world won't help--they are stupid to wait cause you and I both know know what that could mean--and in my mind there is bleed somewhere and it needs to be found--keep harping at them the squiky wheel gets the grease
ReplyDeleteyou know it never hurts to get a second opinion......
ReplyDeleteI wish I had answers for for you sweets ,but I don't , warm wishes to you and Casey
ReplyDeleteMy wife broke her leg.
ReplyDeleteNo just a strain.
Let me see the x ray
What's that?
Oh.
Jump on them, legally.
I second that
ReplyDeleteAnne, don't know how you keep going what with your own health issues and Casey's too. Such serious, frightening illnesses/side effects for KC. You must be frantic. You are both in our thoughts and prayers, as always..love
ReplyDeleteI don't know if the clot is part of being anemic or not. I was told Monday that it would be "rare" for Drew to clot while taking Lovenox...but guess what? He has swelling and all the classic signs of a "clot" in his left calf. Calling Vascular Dr's in the morning..see what they have to say..see if they will dopler his leg for us and check.
ReplyDeletePrayers for you all...hugs too!
Dear Sweet Anne,
ReplyDeleteMy prayers for you and Casey. Don't take wait for an answer. "Nag" them until you get some action. Such terrible side effects for your poor girl.
Miss Punk is SO cute with her blanky. She just felt the need for a little extra comfort.
oxox,
forever your snotball.
Arriba drags a blanket around the house too, his is smaller of course, lol...let us know asap news on Casey, its so aggravating when the Drs. do not have answers to the questions asked of them , I have a few specialist that look at me like......uh.....duh......theyre Drs. you think they would know the answers right.and if they dont know, well get someone who does know to consult with. I too do not understand what giving Casey more iron treatments would help, obviously it doesnt so they need to freakin think of something else. I just wish poor Casey would be well so badly, as always I'm praying for her and her sweet mommy.
ReplyDeletexoxoxoxoxoxoxox
Praying too. Please keep us updated.
ReplyDeleteHope Sutherland calls back soon so he can straighten this whole thing out.
ReplyDeletegood luck and God speed!
ReplyDeleteDon't you just hate the way Doctors seem to veer away from some questions, I do hope it works out for Casey soon Anna. Ref Punk and your pillow, I think most pets are the same and just want to be near their owner. I totally agree with you about the roads od rivers seeing people get caught makes me shake my head
ReplyDeletegood luck and just take her to a large hospital U of M or Mayo sorry about the typo, darn fingers go where they want to
ReplyDeleteThank you ALL for your most special thoughts and prayers too-
ReplyDeleteI love you all.
May God Bless us Everyone.
XOXO
Anne
______________________________
Cab- Thank you so much.
I wish you could too.
Lori;
Thank you too- Very special, your prayer.
Heidi;
No harping necessary- anymore
Blog to follow
Lori-
That is why she already has about 10 different doctors.
Boo;
Wish you did too.
Bill;
Always a smile-
I did ;-) See?
Zus;
I DID that
(Is there a number for that)?
Denise;
I still do not know-
Because the ER docs didn't either-
Cille;
I smiled at your remark also-
Somedays, "nag" is what I do best.
Pamela;
Some things seem more obvious to the people without the lab coats.
Why is that?
SD;
I will
Pea
He didn't.
Blog to follow
Suzy
Thank you
Lester
No.
Me too.
People are 'st00pid' aren't they?
Tess;
What?!?
I would never, ever, EVER, EVER, take her back to Mayo!!!!
Y of M? Yeah ok- right.
______________________________
Punk says Bow-wow?
Milwaukee did a great job on brother's by pass surgery.
ReplyDeleteI am happy for your brother.
ReplyDeleteCasey has been down to Froedtert many MANY times- For an equal number of surgeries too
So she already has a surgeon there. (No, she has 3 surgeons there).
We haven't been there for a few years now...
They referred us finally to Mayo.
Please do not get me started on Mayo!
Check the "caseysick" tags- Or surgery tags...
"The doctors here have come up with a brilliant plan...
ReplyDeleteThey would like her to do 6 more infusions before they do anything else; including looking for a possible intestinal bleed.
Wait... WHAT?!?
My question to her doctor remains unanswered, "If the 1st 6 infusions had little/no lasting effects, what makes them think that the next 6 will be their cure for her?"
I asked that question 3 different times while on the phone with him.
He skirted an acceptable answer by stating that Casey's veins were small and that this was the reason they had to go so slow.
(So what difference then does it make whether they went slow or fast as the iron was still getting IN her veins with each infusion)?
I reminded him nicely that Casey's veins had not changed one bit since she had received the first 6 infusions..."
I'm getting very, very ANGRY now.
God. What 'reason' did they give you for not investigating possible internal bleeding, right NOW? You gave them reasons why they should, why NOT to do more infusions when they didn't work before!
Oh, I wish I could give them a piece of my mind!
What's wrong with doctors, it's just common sense...it ties into the stOOpidity of driving through water, doesn't it?
For five long, painful years, three doctors refused to believe that fibromyaligia exists. (Talk about second opinions!) The fourth doctor knew it at once, & I'm at last on medication that helps. There's no cure, I know, but at least I'm better. I'd like to sue those SOBs for what I went through.
A blood clot in her arm? Do they...perhaps...maybe...understand what cause bloods clots?
I'd better stop now, I'm in a rage & that doesn't help anyone.
I doubt it very much. I've had two PEs.
ReplyDeleteThe first began with swelling & breathlessness, it was thrombophlebitis. (sp) By waiting too long, it worked its way to my lung, & I was in hospital two weeks.
Does anyone use the ER??
My prior doctors didn't do a thing for me. It was only at ER that all tests were taken.
"...see if they will dopler his leg?" Oh, wow, they'd better.
I'm on Coumadin for the rest of my life, which is supposed to prevent further clots. I check my INR frequently, does Drew?
Hope Casey is feeling better and the infusions are doing there job!
ReplyDeletePunk's to cute!!
Did I miss something?
ReplyDeleteAre they doing the infusions again?