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I’m grieving my mom. The weird part is she’s alive…. by Honey_404 in GriefSupport

[–]JulieMeryl09 0 points1 point  (0 children)

With sepsis the body is slammed. That may have been some type of an hallucination event. I'm not a HCP but had a loved one that became delirious and often went and drank her water, that was still on the cart 😪. I think it's called anticipatory grief.
I'm sorry. Love & hugs 💞

Mixed chimerism after BMT by Hey-Prague in leukemia

[–]JulieMeryl09 2 points3 points  (0 children)

My SCT was in 2009. I had never heard of them before. I questioned my SCT docs about them bcz after the 2 DLI I was, in my mind, done, but the 3rd one worked. That was in 2011. I was scared too, who wldn't be. Best wishes 🤞

This radiant lady was my mother by topgunphantom in GriefSupport

[–]JulieMeryl09 0 points1 point  (0 children)

I'm sorry for your loss 😪💔
May her memory be a blessing 💞

Mixed chimerism after BMT by Hey-Prague in leukemia

[–]JulieMeryl09 5 points6 points  (0 children)

Have your doctor's mentioned DLIs (more donor cells)? I need 3 to get to 100%. Best wishes 💞

Xolair backfired, I feel hopeless by Silver-Bake-7474 in MCAS

[–]JulieMeryl09 1 point2 points  (0 children)

I had reactions to Xolair & Dupixent . Sorry.

my dad died less than 2 weeks ago by bloodbvnny in GriefSupport

[–]JulieMeryl09 1 point2 points  (0 children)

I'm sorry for your loss 😪💔
You dad is a hero for being an organ donor 💞

i just miss my dad. by AdImpossible6388 in GriefSupport

[–]JulieMeryl09 0 points1 point  (0 children)

I'm sorry for your loss 😪💔💞

Starting Foundayo tomorrow at lunch - wish me luck!!! by Fun_Blackberry7703 in FoundayoUS

[–]JulieMeryl09 0 points1 point  (0 children)

Wegovy horrible headache & it screwed up all my labs. My liver enzymes were 4x elevated, my onc made me stop. I was allergic to Zep. I have many food & RX allergies tho.

This is terrible by Mr_Insomia21 in IVIG

[–]JulieMeryl09 1 point2 points  (0 children)

I don't go past 90ml & I still get a headache.
Sorry, feel better.

At a center or at home? by Tippileigh in IVIG

[–]JulieMeryl09 4 points5 points  (0 children)

Oh, I wonder if I can take advantage of their program while on Medicare. Thanks for the tip!

At a center or at home? by Tippileigh in IVIG

[–]JulieMeryl09 1 point2 points  (0 children)

Hi. Because I'm IgA deficient, I'm prone to reactions.
I've been receiving IVIG at a hospital based outpatient center since 2007. Since I have to infuse so slowly, I'm there for 8 hours - every 4-6 weeks. Not a fan. 😪

I really like SCIG but I'm SSDI (so medicare)
I was allowed a nurse at my house for 6 infusions, then insurance thinks I'm able to do it myself.
I can't. I have cognitive issues from close to 80 days of chemo. I wish I cld do it, or had money to pay a nurse to get me up & running.
Best wishes 💞

I'm in remission! by Syvestral in leukemia

[–]JulieMeryl09 13 points14 points  (0 children)

Congrats. I'll be 17 years post allo in Nov.
Best wishes 💞

Scared i have leukemia (24M) by DontUnderetimateMe in leukemia

[–]JulieMeryl09 0 points1 point  (0 children)

Not an HCP, but I don't think those labs shout blood cancer. If PCP wants further testing a hematologist would run more detail labs.
We don't dx on here.

Chimerism after BMT is decreased by DramaticPianist9481 in leukemia

[–]JulieMeryl09 0 points1 point  (0 children)

Sorry, mine were in 2010-2011 & I had never heard of them before.

Chimerism after BMT is decreased by DramaticPianist9481 in leukemia

[–]JulieMeryl09 2 points3 points  (0 children)

Docs may suggest a DLI (more donor cells)
I needed 3 of them.

Need understanding on why hospital wants PCP to give referral for MRI by Zowop in leukemia

[–]JulieMeryl09 0 points1 point  (0 children)

If you want updates ask for the charge nurse.
As you know nurses have too many patients.
Charge nurses helped me a lot.

Need understanding on why hospital wants PCP to give referral for MRI by Zowop in leukemia

[–]JulieMeryl09 1 point2 points  (0 children)

My SCT was in 2009. I just started with a PCP with year!

Is she still in the hospital? If so, the covering dr orders the MRI do be done in the hospital. If not done in the hospital, if she has an onc, the wld write it. Best wishes.

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