The Untold Story Of This Thalassemia Patient Would Turn You Grateful To Almighty

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All my life I never had the courage to speak up about my problem. This problem eventually started to take over my entire life and would interfere with school, friends and normal human life experiences. They tried to find a donor for me but since I am an only child, that was not possible, I was on the donor registry however but even that seemed like a long-shot. To say it was hard growing up with this disease would be an understatement. I didn’t truly know what it meant to have a life threatening disease until I was in high school and it became extremely difficult to keep up with my peers.

The first year and a half of high school were spent with me missing a lot of days and then having piles and piles of makeup work, until one day in sophomore year (10th grade) I got really sick and I had to drop out; I had no other option. I still had a positive outlook on life and I thought that maybe there was a reason why all of this happened. The whole year was just spent getting criticized by people who had no idea what was going on with me and why I wasn’t able to attend classes and I somehow felt responsible and ashamed for the way things shaped up.

The following year my parents and I had a meeting with the Bone Marrow Transplant group and they told us that they had found a match for me which was highly rare and honestly it was too good to be true. I was so happy and I thought “wow, finally my prayers have been answered and I have a way to cure this disease”. My disease is Beta Thalassemia, it’s a blood disorder in which the bone marrow cannot make its own blood cells thus requiring frequent blood transfusions. When due for transfusion the body starts to feel like its deteriorating. I’ve spent countless days where my body would ache so bad that even getting out of bed became a daunting task.

That year I went through a million different tests just to make sure my organs were good enough to endure high doses of chemo and radiation in order to get my body ready for the transplant. As the date of the transplant approached, which was around August 2011, I was prepped to get the hickman line placed which is used to insert the chemo drugs to the body, only to find out the donor backed out. I was 16 at that time and believe me, I was devastated. This one moment that I had waited my entire life for, this one chance I would have had to finally live my life like a normal human being, gone. It was the worst thing I had ever felt.

I couldn’t comprehend what happened for days, and when I finally did, I fell into this hole. Hole of darkness and sadness and there was no coming back. I was forced to celebrate my 17th birthday and I didn’t enjoy one bit of it but I had this fake smile plastered on my face and tried really hard to keep this calm facade and hide my devastation. Even if I was depressed, I forced myself to interact with people and try really hard to stay in the loop. So don’t be fooled if someone says they’re depressed but are “smiling” or “laughing” or “hanging out with people”, because they are trying to feel something real, they’re trying really hard to feel a little normal.

It took me about 8 months to get myself out of the hole a little bit and to realize what I’m doing with my life, so I started preparing for the GED (GED is equivalent to a high school diploma). Those 8 months were hell, being at home and listening to my parents lecture me on how I am not doing anything with my life. It was really hard on me because they didn’t understand my depression. They didn’t understand what I was going through. I also wanted to move on with my life and start fresh in University, so this was the only solution. I studied really hard and passed with a good score. I was still depressed but at least I was on the path that I had to be on. I mean, life doesn’t stop for anyone or anything and we just have to keep going.

A few years passed, I was hopeless and I didn’t care much for anything else. Until one day I made an account on twitter (2014), I had no idea that my experience would be like that. I gained a lot of followers in a just a couple of months and most people were extremely kind and I wanted to pursue friendships with them and some made me regret ever making an account (I promise this has a lot to do with the story). Around June of that year, I came across someone really special. We become friends instantly and I felt a real connection with this person. This person has been so lucky for me, like my own personal lucky charm.

If this person wasn’t there for me and didn’t make me believe in God again and didn’t make me believe in myself, then I wouldn’t have gotten this far in life. Whenever I would feel like giving up, this person would tell me that “You are strong”, “You are a fighter”, “You can’t let this bitch ass disease take over”. Because of this person, I gained so much mental strength and I began to believe again, I eventually found out about a trial. It’s as if as an Angel was sent from up above. Because of the care and love from this person, I fought my depression, I started to be more hopeful and I completely changed into a better person. After a very long time I finally felt what it was like to be happy.

Around September 2014, I visited the Adult Bone Marrow Transplant team and they told me about another option I had that could possible cure me. For months I was in denial and I was scared to death because this was just a clinical trial. It was terrifying to even think of being treated like guinea pig. But I also had to think about my future, I wanted to be healthy and it was just a matter of a year, so I convinced myself that I had no other option left. So I went for it. I went to Oakland, California for the first time in November, where the trials were being held. It was a meeting with the doctor and the whole BMT team that would be working on my trial.

I had already read the papers they had sent me which included all the side effects; including blood cancer and it was extremely overwhelming. But I tried my best to keep a straight face and not think too much into it. The next day all the same testing began, the same stuff I went through the first time I got my hopes up. They wanted to make sure I was still healthy and that I’d be a potential candidate for the trial. I was there for two weeks going through dozens of different tests. Then I flew back home, the results were given to me a month later and they told me to come back for stem cell retraction.

I will skip over the whole medical procedure as it is quite lengthy and all, but I do have some pictures inserted for reference on how they retract the stem cells from the body after given G-SCF shots (to produce lots of stem cells and get them into the blood stream instead of having them hide in the bone marrow). The did a small surgery to insert this temporary line into my neck which was connected to my heart so they could easily retrieve the stem cells and the machine in the first picture is what processed the blood so the stem cells would be separated into another bag. This went on for three days and I was hospitalized for all three of them. Three days was nothing compared the 45 I stayed during the trial

The trial started in September, 10 days before my 21st birthday. Fast forward 7 months post transplant and no one even knew what I went through. The struggle, the pain and the suffering. I stayed in the hospital for 45 days and they were the worst days of my entire life. The chemotherapy side effects were the worst I have ever endured and I wish it on no one, not even my worst enemy. I cried in pain every day and night. I prayed to God to ease my pain.

Even with high doses of morphine I was in so much pain and I couldn’t talk because I had a severe case of something called mucositis. The mucositis was so bad that it spread to my throat, I’d throw up blood and I couldn’t eat for a whole week and chemo didn’t allow me to eat much in the first place so the doctor had me be on that yellow bag (TPN) you see behind me for 2 whole weeks. I was on 20 different pills, 5 of them were just to keep me from throwing up. The mucositis gave me high fevers of 104 day & night. I was on 4 different IV antibiotics and IV Tylenol would be running 5 times a day.

I used to feel so lonely in the hospital, some days with no one to even comfort me and to tell me that it’ll be okay. That I’ll be better soon and I’ll get to go home. The worst part of all this was how I had to be in a whole different state and I stayed there for almost the whole year. I’m thankful that my family would periodically come visit me so I wouldn’t feel too down. I still have to fly down for frequent appointments and there were so many restrictions on my diet, the places I could go to and how I couldn’t be in crowds.

Till this day I wear this hideous black mask and people stare at me like I’m a monster. Due to this transplant, I couldn’t attend classes for the whole past year. It scarred me emotionally and physically. I didn’t even look the same until 5 months later. Currently I’m still on the road to recovery but since it was a trial, there are no guarantees that I will even be cured. My hair is coming back but I feel so embarrassed to show it to anyone other than my family so I wear this blonde wig and tons of makeup to make myself feel better and less self conscious.

I still have days when I just want to end it all. It’s as if I can’t take it anymore or that I’ve given up. I still get treatment but the duration has extended a bit which isn’t bad but I went through hell. I deserve to get better and to be happy. I deserve to live a normal life which I ever got to because of my disease. I can write about all this and the next person can read about it, but they never truly know what I went through.

Just because someone doesn’t  mention it or make it obvious that there’s something wrong, it doesn’t give one the right to say that “oh you have such a happy and perfect life” or “you don’t know what a tough life is”. You don’t know anyone’s struggle. And you definitely can’t judge someone’s life based on their social media or pictures or whatever else because you can fake a smile. You can always fake being happy and the other will never be able to tell. It’s still a journey, and I would like you to be apart of it. I will update after couple of months.

Thank you for reading this. I hope in a way, it gave you some strength or courage or helped you in any positive way.  I didn’t write this to get pity or so people will give me false affection. I had wanted to write about my experience since day one and I wanted people who may be facing similar situations as me to know that it may get better. I won’t say that it will, because that will just make me a hypocrite. It will make me a hypocrite because even I don’t believe that right now.

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