Akilah's Liver Treatment Fund

$38,717 of $40k goal

Raised by 1,141 people in 12 months
Akilah Hughes  BROOKLYN, NY
Hi friends,


I'm Akilah Hughes. I'm a writer , comedian , and YouTuber based in New York City.  Maybe you've seen my work online or on TV. Either way, I'm glad you're here.

A few weeks ago my life was completely different. My days were spent writing articles for Fusion, writing videos for my YouTube channel, making decisions about long term projects, and trying my best to work out on a regular basis. All of that felt good (sans working out, but you know), and like *my* normal.

The first signs
After working out one Saturday a month ago, I felt far more exhausted than usual. I took a shower and filmed a video about being a #millennial, and then came straight home. At some point I laid down in bed, but I woke up 10 hours later with all of my clothes on and all of the lights on. Even with that much sleep I was exhausted. I also had an itchy rash that had formed on my right arm.

I assumed it was just a new detergent I'd used for my clothes, but as the week went on I realized I was completely wrong. I went to a doctor here in Brooklyn who prescribed me a topical cream for "prickly heat" (wrong) and I decided to start taking Benadryl. A couple days later I flew to LA for a YouTube event.


The event was a success, but the rash was spreading and I started getting other bizarre symptoms: a painful stinging sensation around my neck and down my back anytime I got too hot, heart palpitations, inexplicable joint pain in my wrists, jaw, knees, and shoulders, and EXTREME exhaustion. After the event ended for the day I decided at the suggestion of worried friends to go to an outpatient center in West Hollywood. 


Upon arrival the doctor went pale and called an ambulance. The rash had spread to every part of my body and she was worried about anaphylactic shock. I was transported to Cedar Sinai medical center by ambulance a few moments later. 

The ER

My time at Cedars-Sinai was incredibly disappointing. Though they noted the heart palpitations, the high blood pressure, the full body bright red rash, and the exhaustion, the blood work they chose to do showed that nothing was wrong. The doctor gave me a prednisone prescription and a prescription for Benadryl. When I asked about pain medicine, the doctor scoffed and refused to prescribe it (I have my thoughts on why). I asked if I could have a CT scan, if there was any way we could actually get to the bottom of what felt like was killing me, the doctor refused.


I flew back to New York and felt no better. That week I woke up with all of my lymph nodes swollen and sore. The rash still had not subsided. The heart palpitations were getting scary. I decided to see another internist to hopefully actually get answers. 


I had to be my own advocate and after enough insisting the doctor decided to do blood work. The tests came back the next day and the doctor called me in. Apparently my liver enzymes were out of whack, my cholesterol was oddly high for my health level, my lymphatic system was hardly functioning, and my white blood cells were all over the place. The doctor was a little blunter than I would have liked, but she asked me if there was a history of cancer in my family. I told her yes. She scheduled a sonogram for a week later. Scared, I pushed it up to the next day.


The results from the sonogram were also bad. I have 3 benign tumors on my liver, 2 of which are classified as "giant" and are basically making it hard for my liver to 1) stay hydrated and 2) process anything I've been eating. But while going over this with me, the doctor also noticed that I had tested positive for Lyme disease.


Lyme disease is mocked in the media. When Avril Lavigne came forward,  a unanimous, unsympathetic groan emitted from the media. Here was a young, beautiful, rich woman complaining of an invisible illness. The same story was repeated when Yolanda Hadid made an announcement about herself and two of her children. Jimmy Kimmel made a joke about Lyme disease last Christmas as medical professionals reminded Christmas tree buyers that ticks could be a problem. I bought in. I assumed it was a fake disease that I never needed to look into.

Lyme disease also caused heart failure in a healthy 26 year old last year. It's caused countless deaths due to late diagnosis or failure to diagnose. The symptoms I have can be deadly if untreated. That's the reality.

After some good friends gave me their best recommendations for specialists, it became clear that I should start antibiotics ASAP to stop the effects of the lyme disease. The shocking sweats were deemed nerve damage, the liver tumors were exacerbated by the inflammation that Lyme disease causes. The exhaustion is the first sign. The rash I had wasn't just a detergent allergy. Everything started adding up.

***
I need your help. Please.
The problem, now, is that treatment and appointments have taken up all of my time and so much of my money. I only have energy to do 1 thing a day, and mostly that has been a ton of medical appointments for blood work and follow ups. At this point multiple doctors have recommended I have surgery to either remove the tumors or get a liver transplant. The Lyme treatment is tricky because antibiotics wreak havoc on the liver and could make an already horrific situation even worse. CLIFFSNOTES: I need a damn good specialist.

My medical insurance is garbage until May 1st. I had Blue Cross Blue Shield, but for some reason NY State of Health mixed up my records and I am on Medicaid until then. I never gave much thought to how bad our healthcare is, but I genuinely feel for anyone with Medicaid. So many doctors treat you poorly or refuse to treat you at all with this insurance. I've paid THOUSANDS out of pocket already in the past few weeks, and the stress of an upcoming major surgery and this relentless illness has made it nearly impossible for me to work at all. I'm scared that I'll have to leave New York.

Please share. Please give. Both help astronomically.
I would be ETERNALLY grateful if you could give $1, $5, $10, or $20. Whatever you have helps. Times are hard for a lot of us, and if you don't have money, sharing this post still raises awareness and could lead to someone else giving. It's all helpful.

I need to see a specialist who will take my condition seriously regardless of my insurance. It's urgent that I see someone who can recommend treatment that I can start ASAP. With Lyme disease, the later you treat it the worse the symptoms can get. There are people with lowered brain function, people who now are wheelchair-bound, people whose quality of life have been greatly diminished because of this illness. With your caring and generosity we won't have to worry about that. We can focus on healing and moving forward and making great videos and finishing the book and making a TV show and really doing all the things I'm so close to getting to do. I don't want to lose all this potential.

Once I have a treatment plan I need to be close to my family in Kentucky for surgery and recovery. It is so isolating being sick in New York City and I can admit I feel too burdensome to ask for help most of the time--even from my closest friends.

Together we can find a solution that leads towards good health and away from the grave. If you can give, please give today. I am hoping to find a specialist in the next week to help me out. I'm not a Lavigne or a Hadid. I can't afford to fight this on my own. 

Thank you so much for your help. The hope you've given me in the past week with just kind words and concern has really helped me in this difficult time.  xx
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Update 17
Posted by Akilah Hughes
9 months ago
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5
5
Hey everyone,

In case you didn't get the memo, I'm out of surgery and doing well. The tumors were removed in a 4 hour surgery and I should see full recovery in the next 6 weeks. I'm in the hospital until tomorrow, but I'm doing okay. Thank you so much for all of your help. I'm gonna go eat some jello. xx
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Update 16
Posted by Akilah Hughes
9 months ago
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3
3
SURGERY UPDATE: Lots of stuff happening on a lot of different fronts in my life, but these tumors are being removed Tuesday July 5th. The recovery is 3 to 4 days in the hospital followed by resting for a few weeks and slowly getting back to 100%. I'm really excited and relieved that it's finally happening. This is my last message before surgery. I love y'all! See you on the other side of this thing xx
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Update 15
Posted by Akilah Hughes
10 months ago
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1
1
Hey everyone-- liver surgery update:
Because of the pulmonary embolism I've been prescribed xarelto (blood thinners) and cannot be cut open until some time in December. This is majorly devastating as the tumors are large and painful. In the meantime I have a ton of medical appointments with hematologists and my primary care doctor to make sure nothing else terrible and unexpected happens. I'd be lying if I said this hasn't been the absolute WORST year of my life, but with your help I'm getting through it. I'm also looking into legal action against Cedars Sinai in Los Angeles per a suggestion from my medical team here in New York. I'm taking calls about it all week and raising the fundraising goal to secure time to fight this when I'm not bedridden. Please consider sharing or donating again so we can fight for better, more fair, less reactionary care in medicine.
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Update 14
Posted by Akilah Hughes
10 months ago
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If you haven't heard, last night I went to the hospital and very VERY luckily they found and diagnosed a pulmonary embolism. I am finally back home with a slew of medications, but now the liver surgery is postponed indefinitely--though I have a follow up appointment to discuss less invasive options. The bills are stacking up, but with your help I didn't worry myself and convince myself not to have it checked out. I'm forever grateful. I will keep you posted.
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Read a Previous Update
Lisa Maggart
12 months ago
5
5

Akilah, I am a volunteer health coach that works with patients who have Lyme disease, viruses, and fatigue disorders. I can recommend a couple of amazing doctors who would know how to help you and definitely think outside of the proverbial box. PM me and I will be glad to share information on the doctors and the latest treatments that go beyond just antibiotics. There is hope!!

+ Read More
Beatrice Muhammad
7 months ago

Please take a serious look at the website Resultsrna.com . A 2 minute video "Lyme Disease Treatment, L. Hanshew MD". Examine under their products items Ultimate Lyme Support. Consult a Clinician you trust to share your findings with. Trust in God and Never Give Up there is an answer.

+ Read More
Debra Coggins-Ortiz
9 months ago

You are a beautiful young lady. I urge you to research what you can do NATURALLY to heal BEFORE having surgery and other traditional treatment. thetruthaboutcancer.com has a wealth of info and a very informative video series you should download and watch immediately. Www.cancertutor.com lists specific cancer treatments for your type cancer. Look at THE DIRT CHEAP PROTOCOL. DO NOT RUSH INTO TREATMENT BEFORE DOING YOUR HOMEWORK. You must cleanse the toxins that gave you these illnesses from your body, and then live clean. Juicing, healthy ORGANIC foods, no sugar, healthy creams, soaps, shampoos, and other body products. You must be strict and consistent for two years. I am not a doctor. These are my recommendations based on a my own research. Prayers going up for you.

+ Read More
Joseph Palka
9 months ago

Glad you are making progress. You are not alone. Hope all goes well so we can see you making videos again. —Joseph

+ Read More
Jessica Anne
9 months ago

I'm so sorry to hear this about you. Hopefully, with all this help, you can finally have the specialist you need and be on the road to a stable life. I understand how life-changing something like an invisible illness is. I suffer from bipolar and have been told by many that it doesn't exist. It's tough, but I'm sure you'll be okay. Much love, Akilah.

+ Read More
Sekiya Dorsett
12 months ago

I am always soo HAPPY to receive these UPDATES!! We are right behind you always!

+ Read More
Cathline Mattews
12 months ago

hey where did you think you got the lime disease?? That scares me

+ Read More
Susan Rice
12 months ago

You should go to UVM in Burlington VT they are amazing and accept NYS medicaid

+ Read More

$38,717 of $40k goal

Raised by 1,141 people in 12 months
Created April 20, 2016
HG
$500
Hank Green
12 months ago
6
6
MO
$1,088
Matthew Ocko
10 months ago
5
5

The world needs more people with diverse perspectives and great senses of humor. Donated in honor of my Dad on Father's Day.

$400
Jacquelyn Aina
12 months ago
3
3
AS
$20
ann shoket
12 months ago
2
2

Sending you all the positivity. BTW, check out Leon Pachter at NYU--GREAT liver specialist and head of surgery there. you cant get any better.

JF
$25
Jessica Frazier
12 months ago
2
2

I once spent a few hours in the ER and left with a wrong diagnosis and a $4,000 bill. Our healthcare system is fucked. Akilah, you're awesome and hilarious and I hope you get well soon!

AA
$1,000
Anonymous Anon
12 months ago
2
2
$1,000
Anonymous
12 months ago
2
2
$1,000
Anonymous
12 months ago
2
2
$100
William Carpenter
9 months ago
1
1

Lots of love, and hopes for a smooth surgery and a quick recovery!

DD
$50
Dezzie Dimbitsara
10 months ago
1
1

Hi there, I've just discovered your work (I've been living under a really big rock for 37 years) and just wanted to tell you that looking at you all strong, smart, funny made me feel proud to be a Black Woman. I see you and I can see myself... well, I'm nor smart nor beautiful... but my point is: I feel like I can exist. I hope you'll get better and you'll be able to work soon. In the mean time, I'm sending you this small donation (as well as good vibes, prayers, virtual hugs... you get to choose) Dezzie PS: I've just started to follow you on Twitter... if I do follow you on Snapchat and Instagram... please do not fear that I am a stalker. I'm just an extremely awkward lady (but who means well, I swear)

Lisa Maggart
12 months ago
5
5

Akilah, I am a volunteer health coach that works with patients who have Lyme disease, viruses, and fatigue disorders. I can recommend a couple of amazing doctors who would know how to help you and definitely think outside of the proverbial box. PM me and I will be glad to share information on the doctors and the latest treatments that go beyond just antibiotics. There is hope!!

+ Read More
Beatrice Muhammad
7 months ago

Please take a serious look at the website Resultsrna.com . A 2 minute video "Lyme Disease Treatment, L. Hanshew MD". Examine under their products items Ultimate Lyme Support. Consult a Clinician you trust to share your findings with. Trust in God and Never Give Up there is an answer.

+ Read More
Debra Coggins-Ortiz
9 months ago

You are a beautiful young lady. I urge you to research what you can do NATURALLY to heal BEFORE having surgery and other traditional treatment. thetruthaboutcancer.com has a wealth of info and a very informative video series you should download and watch immediately. Www.cancertutor.com lists specific cancer treatments for your type cancer. Look at THE DIRT CHEAP PROTOCOL. DO NOT RUSH INTO TREATMENT BEFORE DOING YOUR HOMEWORK. You must cleanse the toxins that gave you these illnesses from your body, and then live clean. Juicing, healthy ORGANIC foods, no sugar, healthy creams, soaps, shampoos, and other body products. You must be strict and consistent for two years. I am not a doctor. These are my recommendations based on a my own research. Prayers going up for you.

+ Read More
Joseph Palka
9 months ago

Glad you are making progress. You are not alone. Hope all goes well so we can see you making videos again. —Joseph

+ Read More
Jessica Anne
9 months ago

I'm so sorry to hear this about you. Hopefully, with all this help, you can finally have the specialist you need and be on the road to a stable life. I understand how life-changing something like an invisible illness is. I suffer from bipolar and have been told by many that it doesn't exist. It's tough, but I'm sure you'll be okay. Much love, Akilah.

+ Read More
Sekiya Dorsett
12 months ago

I am always soo HAPPY to receive these UPDATES!! We are right behind you always!

+ Read More
Cathline Mattews
12 months ago

hey where did you think you got the lime disease?? That scares me

+ Read More
Susan Rice
12 months ago

You should go to UVM in Burlington VT they are amazing and accept NYS medicaid

+ Read More
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