My sisters aplastic anaemia

[hannah6860]

Hi. My sister has just been diagnosed with aplastic anaemia. Shes 27 and has a 6 year old daughter. She has always been a hard worker but unfortunately had to stop working due to being so tired all the time. As she has a small child we didn't really think much of it just thought she was over doing it. She started coming out in bruises and unexplained blood spots. After being made to go to the doctors she was sent for a blood test and the same day had doctors knocking on the door telling her she had to go into hospital. She had more bloods taken, 4 transfusions and bone marrow taken for testing. We've been told its aplastic anaemia but hopefully on Tuesday we should get the results on what level she has it. my self and brother are also being tissue tested on Tuesday to see if either of us are a match so we can help. Her platelet levels were 4 when she went in and we know Shes very sick. We were hoping anyone with any helpful experiences could tell us there stories

[Karenish]

very similar to me, i had the doc knocking at my door 2 am stating i was critically ill and needed to go to A & E now!! my plates were less than 10 and everything else below sustainable life level. I actually felt fine and had been in work all day and only went to the doctors because I had bruises i couldn't account for!
It was scary as hell - anyway 18 months down the line, my hb is now 11, plates 46 - neuts and whites are normal!
I had rabbit ALG and was classed as a late responder at 10 months (this is how long it took me to climb) I have had loads of transfusions and iron level is 1500, but this will come down in time (will try exjade later when we reduce cyclosporin). Ask away - remember its not terminal, its treatable. and don't let it rule you, you take control of it.
I am 52 now - was absolutely the picture of health before this, and they reckon I have had it for several years and body just kept adjusting!!
hang on in there and you will get loads of support here, and on the facebook page https://www.facebook.com/groups/YourFightMyFight/
xxxx Karen

[ssdavi71416]

Tell your sister it will be OK. This is a scary disease but it is treatable.

Many people have platelet levels around you sister's level...I did. She needs an extrasoft tooth brush and must be very careful brushing her teeth. Probably shouldn't floss either. Platelet transfusions seem to only last about three days. There are obviously issues that come up concerning bleeding. Work closely with the Dr. do not hesitate to call them. I was on aminocaproic acid to help with clotting.

There is a ton of information out there concerning AA. Be careful what you believe. Wikapedia is a good example of poor information concerning AA.

Order the information package on AA from AAMDS.org. https://www.aamds.org/patients/educational-materials

Here is an article that discuss the treatment plans and is written by true experts in the field of Aplastic anemia.

http://bloodjournal.hematologylibrar...1185.full.html

Your sister is in the age range that might perform a Bone Marrow Transplant as the first line treatment.

I was dignosed with Severe AA in March 2012. My numbers are going up slowly after ATG treatment. As Karen said just ask the questions.

Scott Davidson 51 yrs.

[BrianFlaigmore]

I would like to agree with the previous two post. I am around the same age as your sister and have just had a bmt for AA. I am now 110 days past the transplant and living pretty much normally. It's a scary and trying road, but it is very doable. Support for her is huge.

Brian

[amberb]

One big thing with being diagnosed with AA is when she does get treatment, and for her after care, it is best to be at a facility that has experience with the disease. That way they know all the side effects of the treatment, what ever coarse she takes. And things to look out for. I'm going to assume that her white count and anc are low as well, so she needs to be careful to not go around anyone who is sick or in large crowds in general, and be careful with what she eats. All meats need to be cooked thoroughly and stay away from fresh veggies and thin-skinned fruit.
Basically, you are about to learn a lot. Be prepared to take in a lot of information. For every appointment you go to, bring a notebook and paper. I've been going to Mayo clinic every week for over a year and I'm still learning new things. This is a great site to ask questions and get answers from people who have dealt with this disease first hand. Good luck to your sister!

[hannah6860]

Thank you to every one that replied to my post. Things have been so crazy since being discharged we rushed my sister back the hospital Sunday as she had another uncontrollable bleed, was very scary. The docs told us her platelets were 18 when we left Friday and they had gone back down to 6 when we arrived. After the most awful experience of being pricked and prodded trying to get a cannula in she was given another bag of platelets. Unfortunately my sister has awkward veins and after nurses and doctors they had to call the specialist to insert it, Shes now badly bruised and sore. We were back at the hospital the day after (Monday) and was given another 2 units of blood as her levels were low again. Me and my brother had our bloods taken for tissue typing so hopefully one of us will be a match as they did mention transplant. Does anyone know how long tissue typing results take to come back? well at least Shes back at home with me, and her daughter is also going to stay with me while we get her better

[ssdavi71416]

For a rush I think tissue typing can be done within a week. Ask the Doctors about Aminocaproic acid for bleeding. Platelets have a life span of 2-3 days so it is hard to keep them above 10. Your family is in my thoughts and prayers. You are a true blessing to your sister.

Scott Davidson

[hannah6860]

Been given some great advice for example brushing teeth with a soft brush. thank you so much for the extra info we may not get in hospital. Was just wondering if people could tell me more about the different treatments like Atg etc people have been mentioning. Feel very silly but it's all so new to me I like to get as much info as possible so I can help my sister understand. Thanks

[ssdavi71416]

You shouldn't feel silly. Most if not all people on this Forum never heard of Aplastic Anemia before diagnosis. In the U.S. there are 600-900 cases a year. This is a rare disease. I would recommend looking at the thread in marrowforums for more info on the ATG treatment.

http://forums.marrowforums.org/showthread.php?t=1868.
You want to be in a hospital where they are familiar with the ATG treatment. My "local" hematologist sent me to a center where they are much more familiar with the ATG treatment. The daytime nurse waited for the night nurse to start the treatment because the night nurse had completed the treatment many times.
For me ATG treatment was 5 days in the hospital. They will insert a main line of some kind (probably). I received methyl prednisone and Benadryl as pretreatment to receiving the ATG daily. These medicines will help to minimize any reactions to the ATG.
There is a possibility of respiratory issues associated with allergic reactions to the ATG so they keep a close watch on you. ATG is dispensed in an IV bag. The infusion is performed over 6 hours to 16 hours each day over four days. (I have read about some cases where the treatment took longer because of complications) The first day I had some chills so they slowed the process down. That is why it took 16 hours to receive the ATG. So the process is similar over the four days. The nurses will monitor temperature, blood pressure, respiration and other vital signs to make sure you are doing OK with the treatment. They also took blood samples very day. I also started taking the prescriptions while in the hospital.
I tried to walk around the ward as much as possible during my treatment time.
I was on a ward in the hospital for bone marrow transplant. My neutrophil count went way down while in the hospital so I was considered at risk for infection.
I felt pretty good for the first week but began to feel bad after that first week. Mainly I had no energy. This was directly related to red blood cell levels. I had levels measured every 3-4 days initially.

There is much more info but maybe others will have additional comments.
Let me know if you need more or more specific information.

Scott Davidson

[natalieianne]

Scott,
I was in the hospital in Atlanta getting treatment for AA in March/April as well. Do you go to Emory or BMTGA?

[ssdavi71416]

natalieianne

I am treated at Emory. My Dr is Arellano. How about you where are you treated and how is it going? There is an AAMDS support group meeting Nov 3rd in Marietta.

[natalieianne]

Scott,

I started at Emory in early March but switched to BMTGA. I was given two doses of ATG/Horse, nearly had a heart attack, coughed up blood and was in ICU for 3 or 4 days - I don't really remember those days at all. When I entered the hospital my platelets were at 4K, HCT was low - don't remember but white cells were normal. I was in the hospital for two weeks and received ATG/rabbit after ICU. I had to have one red blood transfusion and they gave me platelets at the same time for a boost. Haven't had any transfusions since first week of May. My counts are good. My platelets last week were at 252K (they rebounded quickly and have been doing well since) and my HCT was 35.5. At one time my HCT was 37 but then dropped to 34 and is slowing coming up. My ANC has been normal pretty much the entire time since leaving the hospital. I don't really understand the whole 13q deletion thing I have but apparently in April it was 8 out of 20 affected, 0 out of 20 at biopsy in July and now in October 3 out of 20. So I did not get to come off cyclo and get to have another biopsy in January. May have to repeat ATG if results aren't what we want in January. Where is the support meeting? I live just north of Marietta. Isn't is funny that such a rare disease and we were diagnosed at the same hospital probably within days of one another.

[ssdavi71416]

I will send you a private message with the info about the meeting. I am glad to hear you are doing so well. my numbers keep going up but not as quickly as yours. Platelets 57, Hgb 9.4 HCT 27, WBC 2.9, ANC 1970. My creatinine is somewhat high 1.52.

Scott