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  #1  
Old Fri Aug 16, 2019, 10:32 AM
Sham Sham is offline
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Join Date: Aug 2019
Location: United Kingdom
Posts: 3
Aplastic Anemia New Member Story

Hello Everyone,

I guess have a couple of questions I would like to ask the members of this forum. Let me start by saying, I'm so glad I found this website. I will try my best to make this short and straight to the point.

I was diagnosed in Texas with AA around the age 6. I am now 37 and have been in recovery since the age of 8 or 9. I still remember those terrifying years of constant hospital stays, blood transfusions, doctors appointments, my family being on edge and my mom and grandmother constantly crying. I have a permanent scar on my chest and neck from an Implantable port that I was so embarrassed of as a child. I believe it's called a Hickman catheter. I didn't know much as a child and now as adult, I'm digging deeper into my medical records because I feel like something could be going wrong again.

Before I voice further with my concerns. I need to list a few key facts,
My parents are of Thai Decedents but have lived in The USA since the 1960s. As a child I visited Thailand quite often. ( I'm stating because AA is more prominent is Asia.) I had bone marrow biopsy done, but never had a transplant. During the time of being sick, I never went back to visit my grandparents except when I was 8 years old and the doctors and my parents agreed that maybe this would be my last chance if they don't do it now.
I remember being horribly sick in Thailand and I was given the Blood Transfusion there and by some miracle I started improving. I don't know how it happen but I was on the road to recovery. As crazy as this may sound, because I am of the Thai decedents my family was sure that me receiving blood in Thailand from Thai People my immune system and replenished my blood cells. This was in the early 90s so I know treatments and medication is probably different now.

I have to say, given the second of chance of life, I lived it to the fullest and didn't take very good care of my self. I have been back to the doctors in years. I try to stay away at all cost because of my AA experience. The last time was 1999 when I was getting a check up before I started college.
I remembering having a very high Iron count which I read somewhere is from all the years of having blood transfusions.

Now at 37, I'm starting to feel not so great again. I recently started looking into AA and complications after recovery and couldn't find too much so I thought I would give this Forum a try. Now I have to say I'm not in the best of shape, I work mainly on the computer, I definitely don't watch what I eat or exercise. I'm a bit over weight and that maybe why I'm not feeling the best.

Unfortunately, I sort of remember this strange feeling from child hood.My main question is has anyone with childhood AA and have had a Hickman Catheter implanted and removed ever get aches and pain around where the scar is located. Either by the scar on the neck , chest, heart area or all at once??? Sometimes I have a bit of shortness of breath. I've notice this past year I've been getting these muscle aches quite often.

I recently sent for my medical records, fingers crossed they are able to find them since its been over 30 years since I was diagnose. Any advice, or comments or links to something similar that I should read would be appreciated. I;m sorry for such a long first post. Thanks again in advance.


Sham
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Old Fri Aug 16, 2019, 12:58 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,341
Sham,

That's amazing to have a remission like you did and for so long. Unfortunately, SAA continues to haunt everyone even after they achieve remission.

The only thing that jumps out at me is your high Iron. Iron overload should be addressed. It can impact many aspects of health and even suppress your bone marrow. Even though the cause is most likely the transfusions, they should rule out hemochromatosis. Either way, and depending on how high it is, you'll want to reduce it. It's would also be good get a current CBC and Chem panel.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Fri Aug 16, 2019, 07:01 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 129
Hey Sham. You stated that you never had a transplant, but did you ever receive other treatments such as ATG or did your AA go away on its own?
I am not a dr just a patient, so I am not familiar w/ all of the various treatment options and meds used for non-malignant blood diseases in the past. I have heard and met some patients w/ AA and PNH and what they have experienced.
Since diseases such as AA are not very common, I would recommend an appointment w/ a hematologist. You may or may not know that these diseases present themselves in many different ways, so an experts opinion is always the best place to start. You can also look here for more information

https://www.aamds.org/

With that, there are many people here w/ 1st hand experiences w/ these diseases.

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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  #4  
Old Sat Aug 17, 2019, 06:06 AM
Sham Sham is offline
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Join Date: Aug 2019
Location: United Kingdom
Posts: 3
Quote:
Originally Posted by Marlene View Post
Sham,

That's amazing to have a remission like you did and for so long. Unfortunately, SAA continues to haunt everyone even after they achieve remission.

The only thing that jumps out at me is your high Iron. Iron overload should be addressed. It can impact many aspects of health and even suppress your bone marrow. Even though the cause is most likely the transfusions, they should rule out hemochromatosis. Either way, and depending on how high it is, you'll want to reduce it. It's would also be good get a current CBC and Chem panel.

Marlene
Thanks for the reply, you are absolutely right. I do need to check the issue that I had with my high iron count. I'm just scared to find out bad news. But I do need to find out sooner than later.

Sham
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  #5  
Old Sat Aug 17, 2019, 06:13 AM
Sham Sham is offline
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Join Date: Aug 2019
Location: United Kingdom
Posts: 3
Quote:
Originally Posted by GoodDay5150 View Post
Hey Sham. You stated that you never had a transplant, but did you ever receive other treatments such as ATG or did your AA go away on its own?
I am not a dr just a patient, so I am not familiar w/ all of the various treatment options and meds used for non-malignant blood diseases in the past. I have heard and met some patients w/ AA and PNH and what they have experienced.
Since diseases such as AA are not very common, I would recommend an appointment w/ a hematologist. You may or may not know that these diseases present themselves in many different ways, so an experts opinion is always the best place to start. You can also look here for more information

https://www.aamds.org/

With that, there are many people here w/ 1st hand experiences w/ these diseases.

Mario
Hi Thanks for your reply. I'm in the process of trying to get a copy of my medical record and treatments from 30 years ago to find out more of what was done during those years. I'm hoping to get answers from these records. Fingers crossed they are still available. I can only go by what I remember and what my parents tell me. All my parents kept are massive bills from the hospital. I will tell you though, all though my AA symptoms has subsided through out my adult hood, I am always prone to being sick. Flu, cold, minor infections. It seems if I'm in the room with a cold, I always catch it.

Thanks for the link.

Sham
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