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Steve M

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@stevem

Hi everyone, I just want to let you guys know that I had my first infusion of Advakeo yesterday and I’m having another in 2 weeks and then 1 every month. I feel fine no reactions so far which is good hopefully will stay like that. I’ll give any update in the following days. View
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  • Profile picture of Steve M

    Steve M replied to the topic What do you think about the phrase "Sickle Cell Warrior"? in the forum Adults​ ​With​ ​Sickle Cell Disease 1 year, 7 months ago

    If you don’t fight you wouldn’t be here now every time you get a crisis you fight it.. how? Well you start drinking more fluids taking pain killers, using heating blankets, resting more etc… if you don’t fight you won’t make it you won’t survive try not to do all this and see what happens or try not to take care of yourself on daily basis.
    Yo…[Read more]

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    Steve M replied to the topic Pros & Cons of connecting with other SS patients in the forum Adults​ ​With​ ​Sickle Cell Disease 1 year, 7 months ago

    To be honest I do not know anyone that has SCD other than my uncle I found this group a couple of moths ago and I like reading what everyone here feels or has suffer but I wish I could know personally some other people with sickle cell idk to talk and share experiences and maybe help each other when needed because nobody knows how we feel on daily…[Read more]

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    Steve M replied to the topic What do you think about the phrase "Sickle Cell Warrior"? in the forum Adults​ ​With​ ​Sickle Cell Disease 1 year, 7 months ago

    In my case yes I’m ok with warrior because yes we fight a huge fight every day because is not like we only worry when we are in pain we have to take care of our health everyday single day…  we go through crisis, infections, organ damages, surgeries, blood transfusions   We miss family meetings important occasions etc… I think we all know tha…[Read more]

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    Steve M replied to the topic How many meals do you eat a day? in the forum Adults​ ​With​ ​Sickle Cell Disease 1 year, 7 months ago

    Oh this is a good one.
    I use to be fine before I use to eat well 3 or more times a day but now I can eat one meal (lunch) and call it a day

    morning= coffee

    lunch= meal

    dinner= coffee

    terrible my fam gets concern why I’m not eating if I’m not in pain or anything but I’m just not hungry and there is one more thing that affects my food intak…[Read more]

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    Steve M replied to the topic How have you adapted to the winter cold yet? in the forum Adults​ ​With​ ​Sickle Cell Disease 1 year, 7 months ago

    I just try to wear warm cloth and bottoms be outside if not necessary

  • Profile picture of Steve M

    Steve M replied to the topic Medical Oxygen in the forum Adults​ ​With​ ​Sickle Cell Disease 1 year, 7 months ago

    Hello, I have never used oxygen other than when in the hospital with a crisis but yes I have been adivise to carry one if I go to some places in high levels so I refuse to do that I rather not travel to places over the sea level idk if anyone has been told to stay at the sea level and warm places

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    Steve M replied to the topic When a crisis starts, how long do you wait before you start using medicine? in the forum Adults​ ​With​ ​Sickle Cell Disease 1 year, 7 months ago

    Hello Everyone, this is what I do when a crisis is going to hit I start feeling extremely tired for few days also I feel pressure on my lower jaw I know I’m going to get a crisis so I start drinking more fluids and resting a day or two this helps me sometimes but only to space it out for a few days no matter what I still get it…

    Now when I g…[Read more]

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    Steve M posted an update 1 year, 7 months ago

    Hi everyone, I just want to let you guys know that I had my first infusion of Advakeo yesterday and I’m having another in 2 weeks and then 1 every month.
    I feel fine no reactions so far which is good hopefully will stay like that. I’ll give any update in the following days.

  • Profile picture of Steve M

    Steve M replied to the topic Vision Complication in the forum Using our forums 1 year, 7 months ago

    Hi Tito I have an appointment on October 19th hopefully won’t be nothing serious I’m scared of what can it be but I’m a warrior and a survivor so whatever it is I’ll fight it.

    I’ll let you guys know what the Doctor says

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    Steve M replied to the topic A Letter to Sickle Cell in the forum Using our forums 1 year, 7 months ago

    Wow Viviane Salzman I just read your letter and I can relate all of it with my life I have had so many health issues that is crazy and yes sickle cell is a monster it’s the worst in all ways..

    Thank you for sharing this letter with us. Stay safe and healthy

  • Profile picture of Steve M

    Steve M replied to the topic What do you work as? in the forum Adults​ ​With​ ​Sickle Cell Disease 1 year, 7 months ago

    <p style=”text-align: left;”>When I was growing up I use to want to be a doctor that was my dream so I started school for it but unfortunately I couldn’t do it sickle cell was to much to handle I missed clases a lot so I failed.. Then I thought about doing nursing but been in the hospital so many times I decided not to because I knew I would h…[Read more]

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    Steve M replied to the topic What do you work as? in the forum Adults​ ​With​ ​Sickle Cell Disease 1 year, 7 months ago

    Hi everyone, I have done different jobs in my life But having sickle cell has been really hard cause when I get a crisis I missed work and had problems sometimes got fired or I just quit but now I am a barber I decided to get into this field because I can make my on schedule and I can keep up with it easier it has work for me a lot, 5 years so far…[Read more]

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    Steve M replied to the topic Vision Complication in the forum Using our forums 2 years ago

    Thank you Kisha T. I’ll look in to it.

  • Profile picture of Steve M

    Steve M started the topic SIckle Cell Crisis happening very often in the forum Using our forums 2 years, 1 month ago

    Hi, hoping you all doing well I would like to know if any of you experience SC episodes really often I am having them every 3 to 4 weeks and I wasn’t like this before I don’t think I have change anything I still take care of myself like I do but this is not letting me live I do not know how to control it or make it better I wish I could have mor…[Read more]

  • Profile picture of Steve M

    Steve M started the topic Vision Complication in the forum Using our forums 2 years, 1 month ago

    Hi everyone, I hope everybody is doing well with this covid-19 around and I want to ask if any of you have any vision problems??? I just found out in my last visit to the hospital 4 weeks ago that my eyes have some weird spots in the Iris my left eye has 3 and my right eye has 2 they do not have same shape all look different but same white/gray…[Read more]

  • Profile picture of Steve M

    Steve M replied to the topic Balancing Life With Fatigue in the forum Adults​ ​With​ ​Sickle Cell Disease 2 years, 2 months ago

    Let’s see we’ll since sickle cell talks I have learn how to listen and understand my body I used to feel tired but I kept going pushing myself basically I didn’t want to listen what my body was saying and always ending in a crisis or hospitalization so now I do listen and when I feel that way I take it easy, stay home, rest, drink lots of fluid…[Read more]

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    Steve M replied to the topic Do you have health/life insurance? in the forum Adults​ ​With​ ​Sickle Cell Disease 2 years, 2 months ago

    Yes of course it is United Health Care  (HCA) never had any problems with this insurance

    Please do if you or anybody has one of find one let us know… thank you..

  • Profile picture of Steve M

    Steve M replied to the topic Have you ever lost yourself to your sickness identity? in the forum Adults​ ​With​ ​Sickle Cell Disease 2 years, 2 months ago

    All I can say is that Sickle Cell made me a really strong guy I fight with this thing everyday sometimes I win sometimes I don’t but I never give up and I will never do it. Some days are better than others and worst too but we have to keep going we got this…

  • Profile picture of Steve M

    Steve M replied to the topic What activities/habits have you had to give up in the name of maintaining good health? in the forum Adults​ ​With​ ​Sickle Cell Disease 2 years, 2 months ago

    Hi Tito, it’s hard to give up on things we like but it’s for the best

    I had to stop riding my bike since I was a 10 years old because every single time I got on it the next day I Started feeling bad or already in a crisis. I never could play Soccer or run simple things you do as a kid or teenage.

  • Profile picture of Steve M

    Steve M replied to the topic How is your nutrition/diet? in the forum Adults​ ​With​ ​Sickle Cell Disease 2 years, 2 months ago

    Hi Rodney, well mine is not to good because idk why but I have being losing my appetite a year ago I eat only 2 times daily and sometimes only 1 my stomach gets full easy and it takes time for me to get hungry again.

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This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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