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AA Aplastic anemia

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  #1  
Old Sat Oct 7, 2017, 12:20 PM
lab0919 lab0919 is offline
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Join Date: Oct 2017
Location: PA
Posts: 3
Possible AA

Hi, all!
I've been doing some reading around the site and on the forums and am glad to have found such a wealth of information and experience.
My current hematologist believes I may have aplastic anemia but she said she does not feel comfortable providing a diagnosis because it is so rare.
I have been referred to Thomas Jefferson in Philly and will be seen there on on 10/23.
I've had 2 bone marrow biopsies. The 1st in February was described as dry and the 2nd which was done on 9/19 was hypocellular but I don't know the percentage.
My blood counts for the last 30 days range as shown below and I have been receiving frequent transfusions of both red cells and platelets. (I'm also receiving weekly B12 injections and taking 1mg folic acid daily.)
WBC 0.1 - 0.6
Hemaglobin 6.3 - 8.9
Platelets 5 -24

I'm a bit of a train wreck.

Attached are some of my recent labs.
https://1drv.ms/i/s!AqGZGktZOjusgQBfmx2p-_qCZFNl
https://1drv.ms/i/s!AqGZGktZOjusf3di0E9wQlnKBso
https://1drv.ms/i/s!AqGZGktZOjusfrpnlJeK8ZGO-2Y
https://1drv.ms/i/s!AqGZGktZOjusfVVyedJ0fgKCwBk





Last edited by lab0919 : Sat Oct 7, 2017 at 06:56 PM. Reason: Added labs.
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  #2  
Old Tue Oct 10, 2017, 05:16 PM
Hopeful Hopeful is offline
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Hi lab0919,

It is good that you are being referred for a second opinion. Don't be afraid to ask the new doctor how many cases of AA they have successfully treated. You really want to be seen by an expert in this disease for diagnosis and treatment.

Were you B12 and folic acid deficient?

If you do have AA, it is really important to start treatment ASAP to ensure the best outcome, especially since you are so transfusion dependent. Oct 23rd just seems like a long time away...

Can you call the new hospital to express the urgency? Have you considered scheduling a free appointment with NIH in parallel? Is your insurance limiting you to that one hospital?

Wishing you the best of luck in seeing someone quickly! Be assertive!
__________________
50 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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  #3  
Old Mon Oct 16, 2017, 12:47 AM
lab0919 lab0919 is offline
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Join Date: Oct 2017
Location: PA
Posts: 3
Hi, Hopeful!
Thanks for your reply. I'll be sure to confirm what their experience is in dealing with aplastic anemia. I appreciate that my local hematologist was honest about not feeling qualified to treat me.
My B12 was low. Not certain what the folic acid was.

Unfortunately I lost my medical through my employer after being out of work for so long. Now I I have one of the state medicaid insurances. I've been in contact with them and working on figuring out where I can receive treatment and what treatments.

I know I have to be proactive. My hemoglobin is generally quite low and the fatigue, shortness of breath, tachycardia, etc., seem to keep me too wiped most of the time to even do the things I need to.
I just received 2 units packed red cells Friday night and I'm still mostly just lying on the couch.

Thanks again!
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Old Mon Oct 16, 2017, 04:03 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
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Having a humble hematologist is great. They will probably be more willing to work with an expert, should the need arise.

A B12 deficiency is the first thing that I was checked for when presenting with pancytopenia. Since you are low on B12, can your request B12 shots now from your local hematologist? I think they are relatively inexpensive. If this is the source of the problem, you will start to see improvements within a couple of weeks. Check out this article on the subject:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736209/

Here is the first line from the article:

"Vitamin B12 deficiency is a well recognised and reversible cause of bone marrow failure."
__________________
50 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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  #5  
Old Fri Oct 27, 2017, 10:18 PM
mezoth mezoth is offline
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Lab0919,

I am recovering from SAA, and was treated at Jefferson in Philly - they honestly did a great job. The crew down at 925 chestnut in the hematology/oncology group seem to care a great deal (and are the same group that works the floor at the main hospital).

When they diagnosed me, they had me inpatient for 5 days at the hospital, where they ran me through all the tests - and they also found that I was low B12. They gave me shots and had me taking a sublingual for B12, but I did not respond until the second round of ATG treatment.

If you need a helping hand down at Jefferson, feel free to reach out. I live in the city and can get down there pretty easily, and would gladly help out somebody that needs it.
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