I feel tired and demotivated

[Janire]

Hi everybody,
I had my ATG in the middle of april 2001. My 3xATG, it's exhausting...and I have had no rise in my counts yet.
I know there are more threats with this matter but Im really worried. Its my 3xATG and I dont know what to do if doesnt work....I am terrified of a transplant.
I visit my doctor every weeks. Until yesterday I have more neutrophiles than linphocites in my counts, I think it was encouraging, but yesterday I have more lymphocites than neutrophiles again. I think it is because lymphocites are hyperactives again...I dont know what to think and my doctor only say "we have to wait....", no interpretations about my counts and when I come home, I go mad trying to understand my counts. In the last two weeks they are dropping again. They are moving not in a long way. My maximun platelets were 14 and now I have 10...I think is the same....
I look my platelets because they were the first that started to rise in my 2xATG...and this time in this moments (in the month 2) I had already 20 platelets and now I have 10...
I am desperate...

[Sally C]

Hi Janire,
I really can't address the physical worries you have as I don't have the expertise. But just know that everyone who reads your post will be thinking of you and pulling for you.
And you are never alone - God is always with you - always. Keep the faith. Prayers are answered.
Lots of hugs,
Sally

[Karenish]

Originally Posted by Janire

Hi everybody,
I had my ATG in the middle of april 2001. My 3xATG, it's exhausting...and I have had no rise in my counts yet.
I know there are more threats with this matter but Im really worried. Its my 3xATG and I dont know what to do if doesnt work....I am terrified of a transplant.
I visit my doctor every weeks. Until yesterday I have more neutrophiles than linphocites in my counts, I think it was encouraging, but yesterday I have more lymphocites than neutrophiles again. I think it is because lymphocites are hyperactives again...I dont know what to think and my doctor only say "we have to wait....", no interpretations about my counts and when I come home, I go mad trying to understand my counts. In the last two weeks they are dropping again. They are moving not in a long way. My maximun platelets were 14 and now I have 10...I think is the same....
I look my platelets because they were the first that started to rise in my 2xATG...and this time in this moments (in the month 2) I had already 20 platelets and now I have 10...
I am desperate...

I know its easy to say, but honestly, counts on average dont start rising until the 3rd month after your ATG, so you have a while to go yet...mine arent showing anything major and i am on month 4!! but, i feel well in myself and try and focus on that. platelets tend to be the last to rise as they are larger, but try and take each day as it comes, dont trawl too much on the internet, there are lots of frightening stories out there. You will be in my thoughts, as we hold hands together on this roller coaster of a ride. xxx

[BerryP]

Glad to hear you have had three ATG's and the encouraging thing is lots of folk here have had 6 or 7. The worst thing about AA or I guess lack of blood generally is the mental confusion. As long as they are still willing to give you another ATG I don't think you need worry. As to BMT it can be turned down particularly if just the thought of it is giving you a hard time. There are lots of people for whom it has been a cure. Unfortunately I am too old and risks way too great at nearly sixty so not even being offered one, which gives me a slightly different perspective. I had one round rabbit ATG November 2010 and no response despite two biopsies looking for response, but I am managing well on other people's blood and ciclosporin. My docs are very good and gave me extra blood when I was very down. It gave me my old life back for a few weeks, and it might be worth asking for a treat! How weird are our conversations. Really seriously value each day and don't look at what you've lost, look at what you've still got. Easy for me to say and hard to do, some days I weep for what used to be and what I can't do and no I am not going to suggest you take up knitting, but I hear tantric sex can be very restful! Keep strong in your head if nowhere else

[paulaespada]

Janire


Know that I'll keep you in my prayers.

I understand what you feel and say but as other people wrote here, counts may not raise until 4-6 months after ATG.

Keep the faith.

And, what helps me very much, is that God is looking for us.

Moreover, faith in science is very important as well.
It helps me to think that 28 years ago when I studied AA in my nursing program, the only solution was BMT. Now we have other solutions, ATG + cyclosporine protocol is a miracle.

What helped me when my husband relapsed was to know that there are persons who had 6 and more ATG courses - I contacted one of them that helpmed me very much, because only in her last ATG she had a full response.

So, allow me the message: keep the faith. In God and in science.

Keep us updated.

[Janire]

Thank you for your support. I am in my third month post 3xATG and no improvements yet...:-( Still waiting....Patience....
I have a blog: http://anemiaaplasica.blogspot.com if somebody want to check it out

[Robi1Knobi]

Dear Janire ),

Have you tried to eat vegan/vegetarian? It gives me tons of energy when I do that. I try to do it several days a week. The thinking is that since animal products are hard to digest, avoiding them lets your body concentrate on other things (like healing!). I'm not sure this will work for you, but maybe you could try it? Wouldn't hurt if you're open to trying or haven't done it already. good luck!