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APLASTIC ANEMIA: What is it, symptoms, diagnosis & ATG treatment | Jessie Lee

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What is Aplastic Anemia? In this video I talk about my Aplastic Anaemia experience, what Aplastic Anaemis is, what my symptoms were, how is was diagnosed, how it affected my schooling, what medication I was on and the ATG treatment I had.

Hey guys welcome to my channel my name is jess and today i wanted to make a video and talk to you guys about my aplastic anemia story such experience but before we get into that i’ll just explain what i place a plastic anemia is so it is a very rare bone marrow disorder where your bone marrow stops or makes an insufficient amount of cells so like red blood cells and

Neutrophils platelets pretty much just everything and as i said it’s a very very rare so i think is only like 0.4 per million people actually have the disease so yeah without further ado let’s get into my experience so i was diagnosed on the 7th of june in 2015 before i was diagnosed very like my symptoms were showing quite a while beforehand so i kind of remember

December 2014 potentially even earlier that i was being really dizzy feeling sick looking looking sick like really pale i was fatigued i was getting random bruises for no reason like i would just wake up and why i would just have like a red bruise on my arm or my leg or on my stomach or something so i was just getting friend of bruises feeling and looking very

Sick and fatigued and like whenever i would stand up like too fast or pretty much anytime at all i would just feel really lightheaded and dizzy and i would just have to like take a second steady myself before i am moved and kept doing what i was doing other symptoms include like shortness of breath bleeding fast heart rate i already suffer from asthma so i wouldn’t

Really be able to tell whether or not the shortness of breath breath thing was affecting me or not however i do feel like over those months or year i was needing my ventolin more than i was before so that was probably part of it as well i’m like whenever i got a cut it would just believe profusely and not stop for ages like i’d have to sit there with like a tissue

Or something and hold it so it would stop because it just would not like it took forever and bruises whenever i got bruises they would also take forever to yield just because like my platelets and stuff were really low so why i was diagnosed is because of my symptoms my mom took me to get a blood test and i actually remember when they did the blood test when they

Took the needle out like a massive my came out with it which is really strange to me because my platelets was so low like i had ten platelets when i was like from that blood test i had ten platelets so the fact that it came out as a massive blood clot just doesn’t make sense to me anyways that night my mum got a call when she was at work from the pathology place

Saying like look you need to take jess into hospital right now she needs a blood transfusion you know it’s like a matter of life or death really so my mum eventually came home from work and she told me you like keep in mind i as i said i have really bad asthma so i’ve been tossed at all for asking many many many times and i in a bit of a meet i was a bit of a weird

Kid i kind of enjoyed being at hospitals because people would take care of you and it’s fun and you get free food and you’d have to do anything um so when my mum came home and told me you need to pack a bag for the hospital i was kind of like what what fall she was like your blood results came back and they’re not really good i always say we need to go to the

Hospital now and they said in a blood transfusion so i also remember that night i was sitting my mum slapped when i was crying i was saying like do i have cancer what about cancer what are we gonna do am i gonna die like what’s gonna happen so we got to a hospital they put a drip in my hand they did more blood tests i had a bag of the like when i was in emergency

As well it’s just to boost me up a bit and as i said when that blood test that i first got i had ten platelets so i don’t actually have the first blood test with me like we can’t find the paper for it but i just remembered everything being solo like i think maybe my parents with 10 and my red blood cells were about 50 i think maybe 55 something like that so yeah

They were extremely low eventually they just took me into the hematology oncology ward where i stayed for a few days and the next day i went and had a bone marrow biopsy which is where they put you to sleep and they get like this big needle thingy and just take some of your bone marrow from inside your hip bone so i had that and i remember waking up from that in

My hospital room bed thingy and i was so jamie like i just weren’t being really itchy and i’m looking down and seeing all these little red dots everywhere because apparently it turns out i’m allergic to platelets and right after the surgery they gave me a bag of blood and about the platelets and i reacted to them so that wasn’t very fun but i was in hospital for

Maybe another two or three days just to let my back heel and just relax a bit so i think i went home on the sunday and then on the following tuesday i had an appointment with my doctor to find out the results everything from him so in this doctor’s appointment he basically confirmed that i didn’t have cancer it was severe aplastic anemia just because of how slowly

We had progressed and how serious it was made it severe aplastic anemia over regular aplastic anemia from then on for like the next three months following after my diagnosis every week regularly i would have my doctor’s appointments and blood tests just to see how everything was going along i remember also missing a lot of school like every other week because my

Nature fields were too lazy sorry i like if i got like just oh come on cold you know that could kill me so that were very careful was saying targeted school you can’t really care to the shops or anything um and i was basically isolated at home and i couldn’t do anything because i didn’t want to die really however whenever where i was getting blood transfusions

Or anything like that um the hospital was school and my hospital would come and help me do like any homework i had they actually teamed up with my school kind of and got a whole bunch of work for me to do so i didn’t fall behind in fair we a nine because that wouldn’t be very good yeah before i was diagnosed actually i remember i was at with a family friend and

I remember saying to her you know i could you imagine if there was actually something really really wrong with me and we had no idea also if we had waited any longer to get the blood test i probably would have died within a couple days couple weeks so yeah it’s just it was crazy to think that i came so close to dying and none of us had a clue like i could have

Woken up the next morning well actually i couldn’t awoken up next morning i might have been dead you know it’s just i don’t know it’s scary to think that yeah from then on for the next three months it was kind of just watch and see what happens while they kind of figure out what they wanted to do what kind of treatment they wanted to use and where they wanted to

Go from there so in september of 2015 i don’t remember the date but i do remember that we had gotten tickets to see lord of the dance it was like his last show before he retired and my mom and i we were there and she got a call from my doctor saying we’ve organised for jess to have this treatment and a cbc line pudding which is a central venous catheter which is

Basically instead of getting a drip in your hand or your arm every single time permanent version of a gel coat which is a little drip in your hand so what it is it’s a little like plastic tubing that goes in through your like main artery and down through and to your heart so it just sits above your heart in the artery so that they just take medicine like um they

Just take blood straight out of that and they put medicine through where instead of it going through like a needle or anything so yeah my doctor calls saying we needed to go to hospital to do that so we didn’t even get to finish watching the performance i was really excited about that but my mom ended up bringing my sister and being like hey just is to go in a

Hospital can you bring in like clothes i’m these pillows whatever kind of things i would need and i was admitted to hospital they put in the cvc like which i don’t have in anymore but i do have a skull which is that one there that little weird wrinkly scar and i’ve got this guy here so when they put it in they cut into your neck and they put a little camera in and

Then they like feed chipping in but they put the camera in there just so they can see what they’re doing so it doesn’t like go into your heart and then he died because i would do that yeah so i was admitted into a hospital the next day i had the line podían and then the day after that i started a like a drug treatment called atg which stands for i know i’m gonna

Say this wrong but i’ll put it on the screen anyway so you guys can read for yourself but it’s called an tee time mock g-god gold buin that’s my my best guy okay so eight he is a transfusion or horse or rabbit derived antibodies against human t-cells which is used in prevention in the prevention and treatment of acute rejection in organ transplant or therapy of

Aplastic anemia so that’s why 80 so basically i’ve got admitted to hospital had the line put in the next day the day after that i started this new drug so when they put the line in like they glue although i think they actually stitched up this hole and then this was really sore so like i could barely move and then they were giving me this drug which turns out i

Was kind of a little bit allergic to you so my legs started feeling tingly and itchy and they were it was just really uncomfortable and just a bad experience in general by the way i just wanted to add in every time i had treatments or every time i got really sickening to be admitted to hospital every single time it was during the school holidays i mean every single

Time every time when i was in hospital for the atd that was over the school holidays if anyone’s curious i have my medicine charts here so i’ll tell me what medication i was taking at the time so on the 2nd of the 10th 2015 i was taking two capsules of cyclosporine which is a immunosuppressant so it’s suppresses your immune system so it can’t really fight with the

Atg to stop from working so i was – taking two capsules in the morning two capsules of night i just want to add in here um the capsules were they were huge and they smell disgusting every time i would take them the tablets were like if you’re from australia it’s like the length of a 20 cent pings they were massive they were absolutely huge and they stank every time

I take them i just wanted to throw up so i was taking two of those and wanting to avoid that nice night i was also taking producer wine i was taking 25 milligrams in the morning 25 milligrams in the afternoon i was also taking and represent apple in the morning which was to protect stomach against steroids so that was to stop the predator wine from in my stomach

The lining of my stomach sorry i was also taking positive corners all which is this really actually i have this thing here that i’m going to show you it was kind of like this yellow it was this yellow liquid it was absolutely disgusting it tasted horrible every time i also check that i wasn’t going to throw up because it was horrible and it also stained it stained

A lot um so i was taking five mils of that morning evening and afternoon i was also at the time getting getting pentamidine which i would have every four weeks that was to prevent pjp chest infection which it turns out i was actually kind of allergic to that as well whenever i would have i would start to feel really really tight in my chest and i couldn’t breathe

Properly so i ended up coming off of that and having bathroom instead um which was for the same thing but it was a tablet rather than a in future so i had the battery instead and that somehow gave me nosebleeds yeah every time i had bactrim it would make my nose bleed so eventually my doctor had my nose quarter oh so it didn’t bleed anymore because obviously be

Very platelets and blood that’s not a good thing because it’s not gonna stop sorry i had my first ever nosebleed on bathroom fun fact after i had the atg basically it was just a waiting game to see whether or it worked what it was doing to see if i helped at all they kind of were contemplating if it wasn’t gonna work whether they were gonna do it again or to do a

Bone marrow transplant which i’ll talk about a little bit later so um first off like just after the atg it did not really do anything at all like my accounts we’re pretty much exactly the same and i was still getting blood and platelet transfusions every week and i was still being kept trying from school even more than usual at this time and my account eventually

Did start to get like a little bit better so that would kind of go up a bit and then they would stop and then they would kind of go down and down and down then they would just like plateau and then they would go up again it was kind of just like going down and down and down it wasn’t really doing anything so yeah eventually they did contemplate you know should we

Do it again would that be the best option what else can we do you know we don’t want to put her at risk of anything this obviously isn’t working so what is the next step and i think it was about august september of 2016 i had an appointment in my doctor and she was like okay so we’ve been thinking it’s kind of not working if this hasn’t worked it’s not very likely

That a second round of atg will work so our only other option really is a bone-marrow transplant if you don’t know what that is essentially it is just they give you really high dose of chemotherapy wipe out your bone marrow and then give you somebody else’s so yeah i think that’s it for this video if you enjoyed this video if you want to see a video of me talking

About my bone marrow transplant experience make sure to give this video a big thumbs up subscribe tell notifications and leave a comment down below telling me that you want to see me talking about my bone marrow transplant experience because if you don’t tell me then i won’t know so i won’t make the video so yeah like subscribe comment and i’ll see you in the next one bye guys

Transcribed from video
APLASTIC ANEMIA: What is it, symptoms, diagnosis & ATG treatment | Jessie Lee By Jessica Bradbury