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[Table] IAmA 20 year old male with sickle cell disease. My life expectancy is 35.

Verified? (This bot cannot verify AMAs just yet)
Date: 2014-06-08
Link to submission (Has self-text)
Questions Answers
Being in the hospital that many times, what makes the biggest difference in your perception of care that you receive? What makes the difference between a good hospital stay and a bad one? The fact that I live in Canada makes my life much easier. I really think I owe my life to free and socialized health care, I can't imagine having to pay for my stays, I'd be either broke or dead.
A good hospital stay is whenever I'm not perceived as a drug seekejunkie. A 20 year old black kid asking for heavy doses of narcotics always triggers an alarm. I've been refused care many times because of this, it sucks but there's not too much I can do about it.
Really now, You still get stigmatized as a junky even when they look at your history? Yup, it really doesn't bother me anymore. I try not to get mad over things I can't control so I just let it slide.
I've been refused care many times because of this. Can you be more specific about how you were refused care? In the US, an ER cannot legally refuse care to a patient for any reason. If it does happen, there are enormous fines and penalties. Not refuse in the literal sense, but they'd refuse to give me any medication to help with my pain.
Before you ask I do hope you mention that you have SCD right? Cause if you didn't tell me you had a disease and wanted narcotics yeah, I'd be hesitant as well.
So does that mean the 70,000 American people who are currently living with sickle cell disease are all broke and dead? Sorry for the dumb question, but by OP's logic that would be the case. Could someone ELI5 why the 70,000 people currently living with sickle cell disease in America aren't all dead or broke? Some people have scd but are rarely hospitalized. Other people such as my self can be hospitalized several times a month.
I try to hold judgement and whatever medications are ordered I will administer without any "are you sure you need that?" Or exasperated sighs but if you have any advice on better care of these people on a one on one nursing basis that would be great! And of course they know when their medication is due and they will ask for it because they NEED it. You'd understand if you knew the amount of pain they experience.
How has this changed your perspective on the world? Are there things you consider now, i.e. The meaning of life, ethical dilemmas, political crisis', etc. more or less important? What would you tell a 19 year old college student is something he should value? Also, what are possibilities of major advancements in the treatment of your disease in the next 15 years? This whole experience has really caused me to mature much faster than most people in my age group. Whenever I think about politics and international conflicts I really lose faith in humanity. There are so many things going on in the world right now that are absolutely futile and destructive towards our advancement as humans. We should be focusing on preserving this beautiful planet we live in instead of depleting it.
What advice would I give a 19 year old? Value your time. At 19 you have your whole life ahead of you and depending on the choices you make that will dictate how your future will turn out to be. Realize the outcome of your life is completely up to you and anything is really possible if you put your time into it.
How does that feel? Knowing that you have a limited life expectancy. Do you think it's fair? Fair? No.
But then again life isn't really fair at all, some people have it better than me and a lot of people have it worst. So I try not too think about it too much.
I might only have 15 years left, but that's enough time to build something that lasts forever.
Have you planned out how you want to live the rest of your life? As in, most people at 20 would look at what career they may want to do etc, but do you want to travel, work, spend time with family etc? I can't even begin to imagine what it must be like with a potential age limit put on your life. I know exactly what I want to do in life. I want to build something that will outlive me and serve other people way after I am gone. I'm a developer right now and make apps/websites for other people and get paid for it. It's amazing because I get paid very well to do something I absolutely love.
It sounds like your meds cost a fair amount, but you also get paid well, so I'm guessing you earn enough to have money left over. If that's true, it seems there is one bright spot in all of this. You don't have to worry about saving for retirement! I would be spending so much more money if I was in your situation. Admittedly, that doesn't mean your situation isn't a lousy one - it is. But, is there something you are going to do/buy, since you don't have to save for retirement?? I do make a decent amount of coin for someone my age. Then again, I don't value money or material goods as someone my age would. None of that really matters to me. I could buy a new car but yet I stick with public transportation.
Do you ever want to get married or have kids? or is that not really an option for you? I have the actual disease, most people only have the trait. However, I know its possible to live up to 50 - 60 even with SCD. My case is a bit different and severe than other people, a lot of family members died before they reached their 40th birthday, my mom being one of them.
Also I read on wikipedia that due to modern medicine people can live up to 70 years with this condition, do you have another form of it that makes your life expectancy 35? I haven't really thought about getting married yet or having kids.
Hey, just one or two quick questions! My grandmother runs a camp for children with cancer and blood related illnesses like sickle cell. Do you have any experiences with a similar camp? If so, do you have any comments or suggestions that could improve the camp experience for these children? Sorry, I've never attended any camps like the one your grandmother runs. I think it's very nice of her to do something like that. Tell her I said thanks.
How does the disease affect you on a daily basis? Are there certain foods /activities that make it better or worse? Alcohol is a huge no for me, which is fine I've never really liked being under the influence anyways. Staying hydrated is a also very important and getting enough sleep too.
Can you smoke weed? Smoke? No. But do I use cannabis? All the time, I have to actually.
It helps absolutely wonders and it's a great alternative to the harmful opiates doctors prescribe me. Cannabis has really helped me out in ways I can't describe, it's a wonderful medicine.
Thanks for the response. Which ways do you consume cannabis? Vaporizing and eating it.
Do you think it would help being implemented into your care during a hospital stay - say, in pill form? And have you brought that up with any docs? Not really, I already get judged enough when I ask for legal medications. Asking for Cannabis is a step I am not willing take.
Do you have a girlfriend? If not are you afraid of not finding love? Love is the least of my worries, haha.
Could you ELI5 how this disease affects you? Biochemically? I'm curious because I've studied it in Biology classes but only along the lines of phenotype diversity. Okay, I am not a doctor and I am horrible at science but I will give it a shot.
Also, do you just have mad anxiety about what you can do? I'm not talking about long term plans, but rather like, "Can I go do something for four hours today without something bad happening?" I produce blood cells that are hydrophobic meaning they don't absorb water as they should. This causes some my RBC to collapse on themselves and adopt a sickle shape. These sickle cells then get clogged in my capillaries, arteries, and veins and interrupt the flow of blood to certain parts in my bodies. When that happens I don't get oxygen to parts of my bodies that should and my brain signals me with pain.
Which people in your life help you the most? Friends and family help me out a lot, also business clients that help me pay the bills and the cost for my medications.
What kind of things do you build/create? Anything from short stories to Android apps and websites for my clients.
If you don't mind me asking, what are your religious beliefs and how do those reflect on your given situation or your shortened life expectancy? Not religious at all. I do believe there is something greater than us, but I do not associate myself with any religions.
What is top of your bucket list? Contribute to developing a cure for the disease.
How'd you feel about your own education, and with that pursuit of a career? I graduated high school but I decided not to pursue college. Instead I spent time learning valuable skills like programming, web development design, graphic design etc...
I make $2,500 - $3,000 every month working from home and everything I needed to learn was available on the internet for free. No crippling debts and no loans. I don't regret my decision not to attend university one bit.
Nice. What languages do you know? English, Arabic, French, and a bit of Spanish.
If you meant programming languages: Java, Javascript, Php, MySQL, Ruby, Python, C#, C++...
Are you taking hydroxyurea? If so, has it helped? If no, why not? I am taking Hydroxyurea, and yes I believe it helps wonders. It works by increasing the production of fetal hemoglobin in your body which are blood cells that don't sickle.
A medical expert would probably be able to explain it a bit better.
It's helped a lot.
Have you participated in clinical trials associated with sickle cell? Would you be interested in doing so? Sure, I'd love to participate in tests/clinical trials. Anything that will advance the medical field and help find a cure I am willing to take part ini it.
Edited to ask: Have you considered gene therapy/transplant? Never considered any sort of transplant. I hear a bone marrow transplant is a feasible option to getting rid of SCD, never really considered or looked into it.
My friend's son has a form of sickle cell and his was eventually cured through chemotherapy and a bone marrow transplant. Would something like that work for you? Is it something you're planning to do eventually? Possibly, but from what I hear it's very risky and there's several complications that come with a transplant.
I had a friend from high school a few years back who has sickle cell, I haven't talked to him in a while. Is the life expectancy generally the same for most people? Also I've never really heard him talk much about hospital visits, could he just have a milder case than you do? It varies a lot. I have a cousin that has SCD but he barely has any crises at all. Then again, I also have another cousin that's been in the hospital for 3 months now because of his SCD.
What has been the single, happiest moment of your life? It's too early to say.
Off topic question relating to your name: Are you also a FOREX Trader? Thanks for doing this AMA it's quite inspiring to see how your dealing with your challenges :) Yep, I was into currency trading a while ago. Anything that allowed me to make money without a job was in my interest at the time.
Forgive my ignorance but is the pain like say one of your extremities falling asleep, where it feels like thousands of piercing needles?? I can't really describe the pain too well. Just imagine someone putting a lot of pressure on a specific part of your body. Like a boulder on your back that keeps getting heavier and heavier by the minute.
What is your favorite type of food? 'Merican food.
What happens if you get a transfusion of regular blood? Increases my hemoglobin but can also lead to an iron overload or something like that. Transfusions aren't that practical for people like me.
Why not take lots of drugs and try to become spiritual as heck with the time you have left? I do experiment with drugs every now and then. I won't overdo it.
Would a bone marrow transplant cure you? It could, but there's a lot of things that could go wrong too.
I'm not sure if this question may be perceived as rude or not, but if there was a cure for Sickle Cell Disease, would you take the cure, and if do, what would you give to have it? I'd definitely take the cure.
Are you african-american ? Would you prefer to live longer and risk getting malaria or live to 35 and be sure to never get malaria ? Malaria isn't exactly my main problem since I'm in Canada.
Last updated: 2014-06-12 16:54 UTC
This post was generated by a robot! Send all complaints to epsy.
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