Aplastic Anemia Patient Self-Recovering!

[diane w]

Charlotte went into Colchester hospital on December 6th 2006 to have her tonsils out. During the operation she lost a lot of blood leading to a blood transfusion. This is when we found out she had Aplastic Anemia. Her heamoglobin was 6.4, white blood count of 1.7, platelets 4 and neutraphils 0.4. She then had a bone marrow test done and the results came back showing it was between 10-15% cells.

She had platelet and blood transfusions twice every week to start with and we was transferred to a specialist in London and was told she would need a bone marrow transplant as they had never seen a recovery from this. By February 2007, she was needing less blood and platelet transfusions. She undertook all the necessary tests and treatment to prepare for a bone marrow transplant on February 29th 2007. Luckily she had her sister Danielle for a perfect match. In preparation for the bone marrow transplant she underwent another bone marrow test a few weeks before. The results came back at 20-25% cells, showing an improvement from December therefore they decided to wait 4 weeks before they would decide whether the transplant should go ahead.

Charlotte was monitered closely over the next few weeks with no transfusions needed her counts were holding steady. After having months off school and no leisure activities, normal life starting to take place again.

Here we are now, October 27th 2007 and Charlotte has now got heamoglobin 13.2, neutraphils 2.65, platelets 84 and white blood cells 4.9 after no treatment. Shes now left school and at college with a normal life, back playing football. We know this could still change and she is having blood tests every 6 weeks and still being monitored at London University College Hospital. After the worst 10 months of our lives, things are looking better every day. If you would like to ask any questions or want to know more then don't hesitate to ask. Never give up hope!

[trishgen2001]

I'm wondering what you were told were the odds of self recovery? My daughter, Jessica 16, was diagnosed, after bone marrow tests,about 2 weeks ago with moderate AA. Her Dr. says there is a chance she could recover without treatment, but she feels it isn't likely. Our treatment plan as it stands right now is monitoring her blood counts weekly for the next 6-8 weeks, if no improvement, begin treatment with ATG and cyclosporine. All blood counts are low, hemo @ 5.9 (before red blood cell only) transfusion, wbc 3, platelets have gone from 14 to 19 since her first CBC, with no real change in the other counts. She has no siblings to match for bmt, or her Dr. says she would do that first. The treatments sound pretty scary in themselves, I'm just wondering if 6 - 8 weeks would be enough time to show improvement before we proceed, or if there is something in her tests that are a clue to the dr. that she won't recover on her own. Needless to say, we are still researching and learning about something we've never heard of before while still reeling from the diagnosis. Any response is appreciated.

[diane w]

We had the same procedure and waited 6-8 weeks before going ahead with anything. We were told right from the start that Charlotte wouldn't recover on her own and they didnt take into account any chances of this, however counts started to rise a week before she was booked in to have the transplant. I am sorry to hear that your daughter is suffering with AA, and i hope we are not too late in replying. Its seems as though hospitals dont see self recovery in AA very often, however it can happen!
I hope everything goes ok if the treatment has now gone ahead. Feel free to write to us if you need to ask anything.

[trishgen2001]

Hi Diane,
That is wonderful, and I am so glad to hear she is doing well. That gives us hope. Jessica went from moderate AA to severe pretty fast. We went ahead with the ATG/Cyclosporine treatments. She did pretty well through the treatment itself, but the first couple of weeks after were pretty rough on her. Now we're dealing with the side effects of the Cyclosporine, and that's not much fun either! Her counts showed improvement each week the first couple of weeks after treatment, but now they are dropping again. She's doing very well though through all of it. We've been very lucky, she hasn't been sick & has only had to have 3 blood transfusions since March, when we found out. It is very encouraging to hear about your daughter and we wish her the VERY best!! (I don't think hospitals see a lot of AA, period!!)
Thank-you for your response.
Trish

[diane w]

Hi Trish.
This is Diane's daughter Charlotte. I am now thankfully over the AA and I really hope your daughter does aswel. I know you are probably on a lot of stress and strain as our family was last year. I was just wondering, do they know how she caught AA or any ways it may of developed? The reason I ask this is, although we were never told through the medical world we are 99% certain that it was caused by moskito bites transferring hepititus/glandulafever in the first instance which then lead to AA. This is only our theory however I feel this is important because one noticeable correlation was the improvement of all my blood counts, some of them by themselves straight after blood transfusions and platelet transfusions at the same time. It is our theory that given this double boost at the same time did in effect help self recovery, even though not one doctor would agree with this at the time. However when we look back at the graphs after every occasion this was done a boost of recovery occured.
I really hope Jessica battles through this mentally, I was the same age as her when I was in the same position last year. I know it effected my GCSE's as it will hers but I am now doing them at college and things are back to normal.
Do you live in the UK? And what part are you in?
Im at Colchester college, which is in essex near where I live.
Keep in touch.
Charlotte

[trishgen2001]

Hi Charlotte~
I'm VERY glad to hear from you. I can't wait to tell Jessica your story. Yes the waiting to see what her counts do each week is very stressfull. We are anxious for her to be better, and hopefully put all this behind her. This week she has a skin infection we are watching closely. Hopefully, the antibiodics will kick in and take care of it! No, we don't know what caused Jessica's AA. The only thought was possibly an antibiodic she was on to treat an ear infection, but not sure. We're not even really sure how long she had been sick. She'd been feeling kinda tired (but was going to school,working,and running around) for a couple of months. I think about January she began complaining that she was having trouble hearing. By February, she was extremely irritable and having headaches. She had had (what we thought was the flu) a couple of weeks before she was treated for the ear infection, fever, aches and spent about 3 days in bed.) We didn't think much about it because everybody had the flu at that time. Then in March the bruising started showing up unexplained. That's when she was diagnosed.
Jess is a pretty tough girl and has been so brave through all of this. She doesn't talk much about it, and most of the time doesn't seem to worry too much. Kinda afraid she's trying to protect her Dad & me. Any suggestions on what you wanted to hear when you were sick? It's always good to have perspective from someone who has been there, done that!
We are actually in the US, in the State of Virginia. Good luck with school & keep up the good counts!!
Trish

[diane w]

Hi Trish
It's Diane. Like Jessica, Charlotte never complained, even though i am sure things did get her down at the time. I know the main thing for Charlotte was being isolated from her friends and not being able to have a social life. What teenager wants to be stuck at home with their parents every weekend? It was really hard for me and her dad to have to keep telling her that she couldnt go out. Every hospital visit she would ask when she could play football again and when she was allowed back to school.
When she did first start going out, she hated the constant phone calls from us worrying until she was home.
I think it is best to tell Jessica the truth about her treatments and what may happen. Charlotte didnt understand how serious the illness was until she came home from hospital and was told she wouldnt be going back to school for a while, which turned out to be about 4 months.
Although it was a hard time for everyone, it certainly brings the family closer together when you come through it all. Its hard for us to know what to tell you, but if there is any questions from you or Jessica, feel free to ask.
We do keep thinking of Jessica and hope for the best for her.
Diane.

[Anshul]

Hi,
My younger brother, Nitin was diagnosed as AA on June 27, 2012 with Cellularity was 25%, Platelet were 20k and HB 7. Doctor advised for wait and watch. His tests occurs every third day and his platelet count started increasing after 15 days (Became 44 thousand). But HB (RBC and WBC) is still almost same.
I want to ask that which part of the blood starts increasing first during self-recovery from AA.

Anshul,
Gurgaaon, India.