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  #1  
Old Sun Nov 4, 2018, 06:28 PM
Su H Su H is offline
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Join Date: Oct 2018
Location: Florida
Posts: 3
Kinda dazed and confused

I'm Su. I was recently diagnosed with Aplastic Anemia. I've never been sick in my life, so, I'm having a bit of a time accepting it and dealing with it.

Last fall, I took treatment for Hep-C, Harvoni. As the blood results came back clear on that virus, the labs also showed some troubling numbers with my blood. Thinking it was liver-related damage from the Hep-C, doc sent me for three different scans. They all indicated nothing wrong with my liver. So, doc sent me to another doc, a blood specialist. That is where I got my diagnosis.

That doc, the blood specialist, did the first BMB. He sent me to Shand's, the hospital here in my town, to see a specialist, a Dr. Norkin. He also referred me to hematology, but, that department saw the transplant dept. stuff going on and didn't think they needed to track me, too. The specialist did his own BMB. And, a crapload of blood work.

All the different comments by doctors and assistants and nurses and lab techs and all of them, are so darned confusing! I have my daughter to help out; she takes me to every appointment from the start. My three grown children are, naturally, concerned. I don't know.

Like, one time, I went to the lab at the blood specialist's office. The tech drew my blood, then, phoned the nurse. Nurse comes in, sees the lab results, comes over to me and says, "Do you feel alright?" My response was, "Should I NOT feel alright?" My levels were just so low, they freaked out! And, so did I, because of their reaction!

But, now, that I am seeing this specialist, he keeps saying I'm probably three months away from treatment. That's been going on for two months. I don't know what to do! I don't have the energy, nor, the strength, to go trotting off to every specialist in town. And, Shand's has enough of them! I have lived here all my life, but, have always shied away from the facility. There were student doctors practicing there and tons of horror stories to go with them. But, as far as a good specialist, I KNOW Shand's has some awesome doctors!

I was kind of surprised by my response to the diagnosis. It made me angry! I have things to do! Life to live! I do not want to be sick! Sigh. I'm sorry I am such a bummer. I really hope I can come to grips with this soon!

Thank you for reading!
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  #2  
Old Sun Nov 4, 2018, 10:11 PM
Sally C Sally C is offline
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Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 423
Dear Su,
In a horrible situation like this, trust in your doctors is paramount. I don't know the AA centers in Florida that some on the forums do - but your lack of confidence is certainly making all of this harder and more frustrating. I hope that someone will post soon and make suggestions as to the best medical centers in your area for AA. In the meantime, all the best.
Sally
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  #3  
Old Tue Nov 6, 2018, 10:45 PM
Emily59 Emily59 is offline
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Join Date: Jan 2018
Posts: 4
Shands Hospital in Gainesville is a Center of Excellence so that's a great start. It takes a while to wrap your head around this diagnosis. Most likely none of us ever heard of it and suddenly it is a possible threat to your life. Slowly it will start being real to you. You'll get used to looking at blood results to see for yourself what your WBCs and Platelets are up to. It's a lot to learn You catch up soon. My biggest recommendation is to make a list of questions for each meeting. Don't hesitate to ask again if you don't understand. There is also a ton of information on this website and https://www.mds-foundation.org/

Take care.
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Diagnosed with MDS-EB2 December 2017. Stem cell transplant completed August 2018.
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Old Wed Nov 7, 2018, 02:06 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 689
Hi Su,

Let me preface this by saying that I am not in the medical field but just am opinionated patient

I can understand your sense of confusion and frustration. Aplastic Anemia (AA) is a rare disease and a hepatitis induced variant is even rarer. The good news is that the doctors that specialize in AA will be very interested in your case

It sounds like the doctors are waiting to see if your marrow will come back on its own. Sometimes this happens. If your counts start rising on their own, then you may be lucky and no treatment will be necessary.

If things are not better or showing signs of improvement at 3 months, the doctor's may want to consider next steps even though you may not fit the criteria for severe aplastic anemia (SAA) yet.

Unfortunately, there are no real standards for the treatment of moderate aplastic anemia (MAA). So patients like you are left in a state of limbo. This can be especially disconcerting when you just want to start fighting the fight to get on with your life.

There are some things that you can do now during this watch-and-wait time to make sure that you have your ducks-in-a-row should your counts start declining. It is is better to do this now then when you are transfusion dependent and in crisis mode.

First you must find an expert in AA. An excellent hematologist may see only one case of AA in their career! An AA expert will see many. Do not be shy about asking any hematologist that you are considering how many patients they have successfully treated with AA. Do a google search to find doctors in your area that list AA as their interest or specialty or that have published papers on the topic. They may be the ones you are already seeing. A quick phone call can confirm.

You should also find a hospital with experience in treating AA, should you need Immune Suppressant Therapy (IST). Experience matters here again. Should you have adverse reactions to a treatment, you want a hospital that knows how to respond. Usually if you find an AA doctor, they will be able to direct you to a good hospital should you need treatment. Don't be afraid to ask how many AA patients they successfully treat with IST per year.

Finally, I would ask the AA specialist that you are considering what treatment protocol they use for IST. This can vary, as some research hospitals may be more experimental.

It doesn't hurt to consult with more than one AA specialist. They may have different treatment protocols or opinions on when to begin treatment. Don't just consult with a transplant specialist. They may not be able to unbiasedly advise on IST treatment. That was my experience.

The good news is that you are catching this early, you have a support system, and you are coming into this strong. Hopefully, your marrow will be able to fight back on its own. If it can't, and you need to start treatment, it is good to have a plan that you believe in so that you can fight the fight and get back to living - and you can get back to living after an AA diagnosis

Best of luck!
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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