Thread: New Beginnings
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Old Thu Sep 18, 2014, 05:22 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Kensley,

Welcome to the group! I am sorry that you had to join us

Two key things that you will learn from this disease are flexibility and patience. I think 3-6 months is a best case scenario for full recovery. However, you are young and, I am guessing, received treatment promptly. These are both good factors for a response.

If I were you, I’d allow myself a full year to focus on my health and recovery. As AA is a rare disease and individual experiences are varied, it is important to be your best health advocate. If you haven’t already, educate yourself as much as possible on the disease and treatment possibilities. The AA&MDSIF website is a great resource for this.

During this recovery time, it is important to rest, eat right, de-stress, and pursue the things that you really enjoy. You could always audit a class so that you can keep your head in the game, but have the flexibility should you need extra rest.

Avoid sick people and get your flu shot!

Stay on top of your transfusion requirements - especially with platelets. Get outside and exercise, if your doctor allows. Exercise and denial are my favorite coping mechanisms

It is important to maintain goals - fulfilling, short-term ones for now but also longer-term ones so that you have a focus for the future. I remember in the early days, my disease was the first thing that I thought of when I woke up and the last thing that I thought of when I went to sleep. This will pass and there will come a time when don't even think about it at all.

I hope all goes well with your recovery. I think an increase in reticulocyte count is a good thing. I also think seeing a rise in your counts immediately after ATG, even if they did fall back down, is a good sign. This is what happened to me. My take on it is that you did have an immune attack going on. The ATG wiped out the bad T-cells, but now your marrow needs to recover, and that takes time. This is where the patience part comes in!

You will learn much about yourself through this experience. It seems like you have a good attitude and strong spirit already. Best of luck for a durable recovery!
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55 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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