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AA Aplastic anemia

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Old Mon May 22, 2017, 09:35 AM
SMackie SMackie is offline
Join Date: May 2017
Location: Minneapolis, MN
Posts: 1
Arrow My journey!

Last week was whirlwind for me and my family. After feeling my heart racing after going up a flight of stairs, the whooshing heartbeat in my ears at times, and the unexplained bruising following my hockey game, I went in to my doctor to understand what was going on. I had recently returned from an international work trip to the Philippines and thought maybe I had gotten a virus. I have an active and healthy lifestyle, so would never guess this. I am a 43 year old father of 5 that was recently diagnosed as having Severe Aplastic Anemia.

I spent last week in the hospital getting poked and prodded, not sure how many vials of blood were taken. I will be transitioning my care to the University of Minnesota Medical Center to continue my treatment. I feel fortunate that I have 2 med centers in my state that care for SAA. The UofMN Med Center is close to home, which will help in the coming months.

My numbers are low across the board. I am quickly learning more about them as I read all of the forums and websites I can. There are some great resources out there! My blood counts are as follows: WBC 1.5, ANC 0.36, PLT 19k, Hgb 6.9, RBC 2.05, and my bone marrow has 10% cellularity.

I am still working through the initial shock of the diagnosis. Wanted to share my story and what will be my journey. I will have questions and want to leverage this forum (in addition to the Facebook pages) as much as possible. I wish you all the best and look forward to connecting!
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Old Mon May 22, 2017, 09:52 AM
Meri T. Meri T. is offline
Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 153
Though I fall in the MDS slot, my numbers now are quite close to yours
wbc 1.2
plts 19
and I will start chemo on Friday, stem cell transplant on June 2.
This is a wonderful forum, it helped me a lot when I was first diagnosed last summer.
Your positivity sounds good, and will truly help.
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Old Mon May 22, 2017, 10:12 AM
bailie bailie is offline
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
SMackie, welcome to the forum. Your discovery sounds very similarly to mine three years ago. I felt fine except for the kidney stones that caused me to go to the emergency room. I had never been a patient at a hospital previously. A routine CBC showed blood levels similar to yours. The knowledge you learn about these diseases will serve you well and this forum will be very helpful for you. There will be many questions along the way so feel free to ask.
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Mon May 22, 2017, 10:03 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 721
Hi SMackie,

Welcome to the forum! I was diagnosed at age 42 and was living a very active, healthy lifestyle at the time as well. I went the IST route (ATG/cyclosporine) despite having sibling matches. Although I was confused about this decision by my doctors at the time, I am very grateful now, as it was the right one for me.

My recommendation to you is that once your diagnosis/treatment plan for SAA is confirmed, do not delay starting the treatment!

Also, recovering from this disease requires a lot of patience, but it can be done. Stay positive and focus on the important things in your life.

Best of luck on your journey!
53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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Old Tue May 23, 2017, 10:30 PM
kirag1964 kirag1964 is offline
Join Date: Mar 2017
Location: Philadelphia
Posts: 20
Hello & welcome!

Your story is similar to mine as well - I'm an active and healthy 52 year old mother to 4 kids who was diagnosed after a routine physical in February. In hindsight I had been having symptoms for a while (bruising, tiredness, blood "whooshing" in my ears), but they weren't serious enough that I thought I needed to get them checked out. In a way I'm lucky because my annual physical caught the low blood counts before they dipped into critical numbers.

I don't fit the criteria for SAA - my doctor calls me "borderline" (my platelets are hanging out in the 20s and my ANC is slowly dropping but still around 1.2) - but I am needing monthly RBC transfusions. So I was allowed to wait for treatment until my daughter's HS graduation on June 9th, and I'll be checking into the UPenn hospital for hATG + CSA + Promacta on June 12th. So depending on what your doctor recommends, we may be on parallel journeys!

Mostly I don't look or feel sick (although right now as I approach 4 weeks out from my last RBC transfusion I do start to flag a bit!), so this whole thing is still pretty surreal to me. One of my kids (the daughter graduating from HS actually ) has a pretty serious health condition (intractable focal epilepsy), and I just keep feeling like I'm not the one who's supposed to be sick! But I am very hopeful that I can beat this thing and be back to my usual energetic self by next year!

Best of luck to you and let's stay connected as we walk this path!
Kira - 52 y.o. mother of 4, diagnosed with MAA April 2017; ATG/CsA treatment scheduled for June 2017
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