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Help Needed: Aggressive Anemia and Possible Chronic Bleeding


Joyride
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1 hour ago, Ryan BTE said:

He can’t set up the GFM himself, and there was some controversy the last time a member did one for someone else. However if someone @Joyride trusts does it, we will also promote it. 

I'll do it but what do we need?

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Can we somehow contact Nick Jonas and tell him one of his biggest fans is battling a sever diesase?

 

I'll get my credit card in 10 days, so I'll donate then @Joyride give us un update on the amount you received already, good luck! :heart2:

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1 hour ago, Tinashegrande6 said:

Hey fyi there's a typo in your PayPal name in the OP.

 

Anyway just sent! Wishing you all the best :heart:

thank you for bringing this uo. Will fix it right away,

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1 hour ago, easy HME said:

@Joyride see with one of admins if they can set up gofound me for you. I think that way is the safest.

So we avoid any controversy

I agree, I’d really like to donate but would prefer to do it by gofundme.

 

Please tag me when it’s setup and wishing you the best @Joyride :heart2:

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It’s f*cking infuriating that a surgery (and a pretty common one at that, from my understanding) might’ve caused or contributed to all of this. To add to that, your ex employer is truly disgusting for firing you as soon as they knew you had health issues.

 

I genuinely wish you all the best and hope everything goes well. Don’t give up on your life because you’re young and you deserve to live it to its fullest. I’ll donate everything I can! 

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2 minutes ago, Hephaestus said:

It’s f*cking infuriating that a surgery (and a pretty common one at that, from my understanding) might’ve caused or contributed to all of this. To add to that, your ex employer is truly disgusting for firing you as soon as they knew you had health issues.

 

I genuinely wish you all the best and hope everything goes well. Don’t give up on your life because you’re young and you deserve to live it to its fullest. I’ll donate everything I can! 

Yes it’s absolutely heartbreaking. I’m assuming you live in the United States. I wish you lived in a country that provided healthcare to its citizens. 

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wow sounds very severe

but is it an auto-immune disease or postoperative blood loss? not sure i get what happened

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22 minutes ago, Kingfisher said:

wow sounds very severe

but is it an auto-immune disease or postoperative blood loss? not sure i get what happened

He mentioned his intestines can't absorb iron, which is iron-deficiency anemia, which isn't a fatal condition normally, but he also mentioned oxygen is failing to reach his brain, which is definitely gravely serious

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13 minutes ago, hurricane326 said:

He mentioned his intestines can't absorb iron, which is iron-deficiency anemia, which isn't a fatal condition normally, but he also mentioned oxygen is failing to reach his brain, which is definitely gravely serious

yeah absolutely, but i’m confused

(post-)anoxic brain injury is extremely dangerous and requires immediate intervention ASAP, especially if caused by acute/massive blood loss so i don’t understand how injections (?) would help

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1 minute ago, Kingfisher said:

yeah absolutely, but i’m confused

(post-)anoxic brain injury is extremely dangerous and requires immediate intervention ASAP, especially if caused by acute/massive blood loss so i don’t understand how injections (?) would help

He also mentions having had a tonsillectomy, which has nothing to do with any of that.

 

I hate to be so snoopy but @Ryan BTE have you verified this?

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@Joyride, if you don't mind, what is the exact name of your condition/diagnosis? :heart:

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23 minutes ago, hurricane326 said:

@Joyride, if you don't mind, what is the exact name of your condition/diagnosis? :heart:

they said it's "Autoimmune Hemolytic Anemia" in a previous thread. according to google this condition is treated with steroids, there's also "idiopathic autoimmune hemolytic anemia" which can be deadly if left untreated, but it's usually highly treatable with steroids or a surgery

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4 minutes ago, Young Volcanoes said:

they said it's "Autoimmune Hemolytic Anemia" in a previous thread. according to google this condition is treated with steroids, there's also "idiopathic autoimmune hemolytic anemia" which can be deadly if left untreated, but it's usually highly treatable with steroids or a surgery

Thanks! I genuinely feel horrible being so snoopy but before I donate I just want verification, I was looking various conditions up and all of them are highly treatable so I feel a little thrown off. That's all

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46 minutes ago, hurricane326 said:

He also mentions having had a tonsillectomy, which has nothing to do with any of that.

 

I hate to be so snoopy but @Ryan BTE have you verified this?

Yes I have. I saw the paperwork and believe Joyride 100%. I’ve known him for years and he’s always been truthful. I will also be donating because I believe in this cause to help. 

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6 minutes ago, hurricane326 said:

Thanks! I genuinely feel horrible being so snoopy but before I donate I just want verification, I was looking various conditions up and all of them are highly treatable so I feel a little thrown off. That's all

you and me both, i've seen enough scammers on tiktok to make me wary even if everything sounds completely legit

i'm not a doctor though so i can't know these things for sure, no one can really

i did check the injections Joyride said they need and it says this:

Ferinject is indicated for the treatment of iron deficiency when (see section 5.1):

– oral iron preparations are ineffective.

– oral iron preparations cannot be used.

– there is a clinical need to deliver iron rapidly.

but it says everywhere that corticosteroids are first prescribed for this condition and then they perform a surgery if the treatment is ineffective

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3 minutes ago, Ryan BTE said:

Yes I have. I saw the paperwork and believe Joyride 100%. I’ve known him for years and he’s always been truthful. I will also be donating because I believe in this cause to help. 

Ok, thank you!

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Im not in a finacial space to donate but sending you my thoughts. you'll get through this. bumping so even 1 person may see the thread like I did.

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guys! thanks to all of you that donated i've finally managed to reach the $450 mark - I really do appreciate this with all my heart and I will keep you guys updated. I went out on Friday to all the pharmacies here and $440 was by far che cheapest one. they told me I'd have to buy them and that they'd take 2 days to get from Santiago to where I live. this is a dream come true - but certainly not the final step. Thank you so much for your donations and to those who still want to donate - they are more than welcome, as this would help me cover my future hospital bills, doctor's visits and possible new drugs I'm prescribed.

 

I'm truly lost for words. you guys are the ******* best.

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2 minutes ago, Joyride said:

guys! thanks to all of you that donated i've finally managed to reach the $450 mark - I really do appreciate this with all my heart and I will keep you guys updated. I went out on Friday to all the pharmacies here and $440 was by far che cheapest one. they told me I'd have to buy them and that they'd take 2 days to get from Santiago to where I live. this is a dream come true - but certainly not the final step. Thank you so much for your donations and to those who still want to donate - they are more than welcome, as this would help me cover my future hospital bills, doctor's visits and possible new drugs I'm prescribed.

 

I'm truly lost for words. you guys are the ******* best.

I HOPE EVERYTHING WORKS OUT FOR YOU :heart: IM HAPPY TO HELP :hug:

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I'm financially struggling right now so I can't donate that much but my thought and prayers to you so soon you'll get better :date:

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1 hour ago, hurricane326 said:

@Joyride, if you don't mind, what is the exact name of your condition/diagnosis? :heart:

Hello there - I absolutely understand the hesitance to donate to something so unknown,  as you might've already read through both threads - I was first treated by my head doctor, which asked me to take a bunch of tests after the surgery, after getting those results back - I went to the first hematologist just to just check why my hemogram results came back so badly, I told him about my medical history (I also have a very cause of Chron's disease, treated since I was little) and he asked me to do another one. and then a second one two weeks after. they came back even worse each time.

 

I was kind of rushed diagnosed, amd I stuck with that until the day I opened the thread,, since this was a deadly diagnose, I just needed to get it out and since a lot of my friends are here, I posted it with no hesitation.

 

after a few days, I was asked to visit another hematologist that had treated two cases that were extrangely similar to mine. another set of blood tests and physical tests were performed.

 

during the physical test he took a look at my surgery, and for some reason (probably negligence) two or three blood vessels were left to exposed, causing me to bleed during the day and at night, which wasn't really helping the case.

 

The doctor also found out that because of the "weird shape" and "small size" of my red blood cells, they were not doing their job properly, and not having enough energy or whatever term was used to basically transport oxygen through my veins.

 

I was asked for a bunch of tests again, this one being the worst one as I cannot seem to absorb any Iron at all. like, at all. Not from food, not from supplements.

SoeQBq1.png

 

after this test was received, I sent them to my doctor who called me right away, as the result was really bad.

 

I'm still waiting for the most important tests out of the bunch as I took them early last week and they take up to 7 working days to be ready. included in these tests, there is one for coagulation issues, as I till have a really painful phlebisit in my wrist after the surgery.

3HU1IUM.png

 

I don't know if you guys will be able to see this at all, but i tried my best :skull:

0p4ExPD.jpg

 

trust me, I would not joke with things like these at all.

3 hours ago, Kingfisher said:

wow sounds very severe

but is it an auto-immune disease or postoperative blood loss? not sure i get what happened

as far as we know from the test, the final diagnose is still not clear. he needs to do an endoscopy to make sure there are no ulcers in my stomach and a colonoscopy to check if there are any problems to rule those out, when I get the results from the ANA and ANCA I will have a more clear idea of what is truly going on. thats why I did not want to commit and always used the word possible, since doctors aren't sure, neither can I.

 

the IV  injections are to basically help recover my iron deficiency and product better, more, and functional red blood cells.

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1 minute ago, Joyride said:

Hello there - I absolutely understand the hesitance to donate to something so unknown,  as you might've already read through both threads - I was first treated by my head doctor, which asked me to take a bunch of tests after the surgery, after getting those results back - I went to the first hematologist just to just check why my hemogram results came back so badly, I told him about my medical history (I also have a very cause of Chron's disease, treated since I was little) and he asked me to do another one. and then a second one two weeks after. they came back even worse each time.

 

I was kind of rushed diagnosed, amd I stuck with that until the day I opened the thread,, since this was a deadly diagnose, I just needed to get it out and since a lot of my friends are here, I posted it with no hesitation.

 

after a few days, I was asked to visit another hematologist that had treated two cases that were extrangely similar to mine. another set of blood tests and physical tests were performed.

 

during the physical test he took a look at my surgery, and for some reason (probably negligence) two or three blood vessels were left to exposed, causing me to bleed during the day and at night, which wasn't really helping the case.

 

The doctor also found out that because of the "weird shape" and "small size" of my red blood cells, they were not doing their job properly, and not having enough energy or whatever term was used to basically transport oxygen through my veins.

 

I was asked for a bunch of tests again, this one being the worst one as I cannot seem to absorb any Iron at all. like, at all. Not from food, not from supplements.

SoeQBq1.png

 

after this test was received, I sent them to my doctor who called me right away, as the result was really bad.

 

I'm still waiting for the most important tests out of the bunch as I took them early last week and they take up to 7 working days to be ready. included in these tests, there is one for coagulation issues, as I till have a really painful phlebisit in my wrist after the surgery.

3HU1IUM.png

 

I don't know if you guys will be able to see this at all, but i tried my best :skull:

0p4ExPD.jpg

 

trust me, I would not joke with things like these at all.

as far as we know from the test, the final diagnose is still not clear. he needs to do an endoscopy to make sure there are no ulcers in my stomach and a colonoscopy to check if there are any problems to rule those out, when I get the results from the ANA and ANCA I will have a more clear idea of what is truly going on. thats why I did not want to commit and always used the word possible, since doctors aren't sure, neither can I.

 

the IV  injections are to basically help recover my iron deficiency and product better, more, and functional red blood cells.

I am so sorry you are going through this. I will be happy to donate. We all love you very much :heart:

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