New Beginnings

[davisk]

My name is Kensley Davis and i a 24 young guy who has been diagnosed with SAA. This has been one of the most disorienting times of my life as I recently graduated from college, was working full time, and also just planning to apply to law school. it seems as though all that was put on pause with one blood test and bone biopsy. By no ways do I want sympathy, as we are all facing similar challenges, however it is nice to be vulnerable with those who are/have gone through the same types of things. i feel blessed there is a forum like this one, where community can be built and strengthened.

I just finished ATG three weeks ago, my counts were doing ok right after wc 4.2 anc 1.4 and all of sudden they are dropping (platelets are biggest problem) and it drives me crazy every time I have to go in for a cbc. because it is something i can not control. My retic count has been going up, not sure if that means anything but yea.

in short, i dont want live these next 3 to 6 months a nervous wreck, but rather have some peace and productivity during such a critical period. Did any of you follow through on goals, develop healthy coping mechanisms while u rode the wave of aplastic anemia? thank you for listening to my random thoughts, and allowing me to be apart of this group.

Sending thoughts of peace and courage to all!

KD

[Neil Cuadra]

Kensley,

In my experience, the shock of an SAA diagnosis is enough to throw anyone off balance. Coping with the medical issues requires a team effort of you, your doctors, and your support team (family, friends, etc.).

You also need ways to cope with the disruption to your life. I think this has two sides. First is realizing and accepting that some of your life has necessarily gone on hold, because you have to take care of your health above all else. Three to six months seems like a long time when you're at the starting gate, but given the importance of proper treatment and a full recovery, it's a tiny delay compared to a lifetime of future plans. You might not be up to attending law school if it started today, but you can still apply to law school.

The second aspect is that your daily life is continuing, despite the medical demands on your body and your time. During treatment and recovery there won't be enough time for everything you would otherwise be doing, but there's time for some of it. Prioritizing is the key. When my wife and I were going to the hospital multiple times per week after her ATG, we had to choose what activities we'd make time for and what we could do without. When you face that choice it makes you realize that we often spend time on unproductive tasks that we'd be fine without, or that some of what we do can easily be delayed. In your case it's about continuing education and the start of a career. In our case it was about work, family, and hobbies.

There are bound to be daily and weekly ups and downs during ATG recovery, but I hope your counts rise and your overall recovery goes well. I also hope you can draw some strength and support from people who have been in similar situations.

[Sue H.]

Hi Kensley, sorry to hear that you have to go through this at such a young age.
My wife Sue normally corresponds on this forum but this time I feel the need to respond. I am Swiss and my name is Arnold. I was diagnosed in May 2012 with vsAA out of the blue. All my life I was never ill, worked nearly forty years until it happenend. I tried first ATG and doctors recommended a bone marrow transplantation after ATG didn't work. I refused to do that, because I thought my bone marrow is still ok but a "little tick" in my brain stops producing the required blood cells (like with computers when they play up for no obvious reasons). However, the option Revolade (Eltrobombag) came up. Fortunately, the Swiss health insurance paid this very expensive course of medication. After 1 1/2 years of taking these tablets I stopped it. My blood counts (except Hb) are in the clear, I feel well, started to work again.

Now, how did I cope with all this during the last 2 1/2 years? To be honest, I don't really know. All I did was enjoying every day, the nature and being grateful to be still alive. I never thought too much about the illness, I liked the spare time I suddenly had after all the years with hard working, raising two daughters (now 25 and 30 years old). A very important or the most important factor was the support of my loved ones, especially of my wife who looked after me so beautifully.

Don't despair, stay positive (I know it is easy to say), but very important! Take care of yourself Kensley and let us know how you get through this. All the best Arnold

[Hopeful]

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!

[riccd2001]

Hi Kensley: You have found the BEST forum for helpful suggestions and support. For me it took a good six months to get up to speed. Lots of reading and taking some other forum postings and on-line websites with "a grain of salt!"

One additional suggestion is to keep a handy record of CBC results, medications and transfusions, if any (donor dates & amounts infused). Also really helpful to take it along to your doc appointments or in-patient treatments.

[davisk]

Thank you Neil for taking the time to respond. You have offered me very wise and comforting words. I am definitely learning to surrender myself to the processes of the managing this disease and while simultaneously maintaining a positive attitude. I think this will be strengthened with time. Let the healing begin. Best wishes, and I will keep you informed!

Originally Posted by Neil Cuadra

Kensley

In my experience, the shock of an SAA diagnosis is enough to throw anyone off balance. Coping with the medical issues requires a team effort of you, your doctors, and your support team (family, friends, etc.).

You also need ways to cope with the disruption to your life. I think this has two sides. First is realizing and accepting that some of your life has necessarily gone on hold, because you have to take care of your health above all else. Three to six months seems like a long time when you're at the starting gate, but given the importance of proper treatment and a full recovery, it's a tiny delay compared to a lifetime of future plans. You might not be up to attending law school if it started today, but you can still apply to law school.

The second aspect is that your daily life is continuing, despite the medical demands on your body and your time. During treatment and recovery there won't be enough time for everything you would otherwise be doing, but there's time for some of it. Prioritizing is the key. When my wife and I were going to the hospital multiple times per week after her ATG, we had to choose what activities we'd make time for and what we could do without. When you face that choice it makes you realize that we often spend time on unproductive tasks that we'd be fine without, or that some of what we do can easily be delayed. In your case it's about continuing education and the start of a career. In our case it was about work, family, and hobbies.

There are bound to be daily and weekly ups and downs during ATG recovery, but I hope your counts rise and your overall recovery goes well. I also hope you can draw some strength and support from people who have been in similar situations.

[Marc R]

Hey man, I am in a very similar situation as you so you are not alone. I was 22 finishing school and working full time when I was diagnosed with SAA in December of 2013. I had atg in December and I have been on Cyclosporine ever since. My counts were very low for almost 4 months when we decided to move forward a bone marrow transplant from an unrelated donor. Only a few days before I was supposed to have all the tests done my lab results showed their first sign of improvement without transfusion. My doctor decided to hold off on the transpant to see if my counts continued to rise and they did. Six months later I am just below normal counts and back in school. Just stay positive the first few months can be very stressful and frankly boring, but once your counts start to rise its like a weights been lifted off your shoulder.