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MRN: 020342855

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  1. Hello...I guess I'll start with my name. My name is Medical Record Number 020342855. That's the number that the hospital assigns to you as your ID. People refer to me more like this than my actual name and it is starting to feel like my real name now. I am male and 19, well actually 20 because it is my birthday, and I have 6 months to live. This is really weird talking about like it is nothing, but yeah I'm going to die soon and this is my last birthday. Knowing that I just have been thinking more and more about what death will be like and what should I do before then. I have already come close to death many times so I have accepted my death and I'm okay with it. I guess I am just writing this for myself and to just to say what I feel out loud even if no one is listening. I have a rare blood disease called antiphospholipid antibody syndrome. Basically, my body clots way too much and I am susceptible to forming serious blood clots. Lucky me, I have the rarest and the most dangerous type. It has gotten to the point of catastrophic antiphospholipid syndrome (CAPS). I have not responded to any treatments known and yes I have tried them all...even chemotherapy. I've clotted over everything and nothing has significantly helped. This is why my case is so fascinating to doctors and this is how I will be remembered. Not me really...it will be the rare case that couldn't be solved. All they will see is MRN: 020343855 and that case to learn from. Don't get me wrong, I want to contribute to medicine as much as possible, but sometimes I feel like that I am just an experiment and something to study. We have even joked about it saying that I am an experiment. But I just want to be me, not 020342855. But I'm not even sure who I want to be or who I am anymore because of this disease. I'm supposed to be figuring this out by going to college and experiencing life. Kid of hard to in a wheelchair with a bunch of pain and other limitations that I won't go into. I had to take a medical withdrawal from college twice because I got more pulmonary embolisms and other clots. I had to quit all of my sports including the one sport that kept me going all of these years. I have a black belt in Tang Soo Do Karate and getting back to Karate was my motivation to get through all of the pain, physical therapy, rounds of chemotherapy, and all of the new clots that I had to deal with. Now, there is nothing anyone can do except prolong the inevitable. Physical therapy will not help at all anymore and we have no treatments left to try. All we can do is stay on the current treatment that is once or every other week that is extremely painful and hope for the best. This treatment is not a solution and I am still clotting and have clotted over it before. With all of my limitations physically, I cannot do anything that I used to love. I can't even play guitar or drums anymore because of my symptoms. I can't even teach Karate because of my limitations. This time I can't just tough it out and push and work as hard as I can and everything will get better. No, this is the healthiest I am going to be and I cannot do anything to heal and my doctors can't do anything either. This is going to kill me and there is nothing I can do to stop it and no way of fighting to get healthy anymore. I have been living at home away from college and completely isolated except from my family and doctors. Sure I'll see people sometimes, but all of my friends have ignored and pushed me away because they don't know how to react to my condition. I don't tell them much, but the things that I do scare them off. Some have been better than others, but overall...I feel really lonely. I have to put on a happy face and pretend everything is fine for people to normally talk to me. I want to tell them something besides I am not doing too great, but I'm still hanging in. Either they can't take it or I can't talk about the way I feel. I just wish I could have one person that i could be real with that isn't someone I'm paying to talk to. Because I still can't even talk about everything with my therapist. I haven't been treated right by people who were my friends and who claim to be. Now I need them more than ever and I know that won't. I just need someone to talk to and be myself around because I haven't felt like myself in a long time. I wonder if I should consider suicide because it could end all of the pain I experience everyday and I could go out on my own terms. This disease would not be controlling me anymore and I don't want to let it win. I don't want to be beaten by this disease because that means that it truly did control me and decide what I can do. However, that isn't me. I always try make my decisions based on what I would do before this all happened. I never gave up throughout all of this and I will never give up. I will do whatever it takes because that is what I would do and the medical decision that MRN: 020342855 is not always the right one. If I die tomorrow it would be fine. I just want to die fighting and not locked up in a hospital room. The problem I have is that I can't do anything really. I can barely walk across the room so what can I do for my last 6 months? I don't have many passions and the things I want to do I can no longer take part in. What can I do and what do I want to do are questions that I don't have the answers to. But right now by doing nothing I feel like I have no purpose. I want to live again and I want to feel like I am part of something. I want to be me. That's it. And I don't know how I can do that anymore. I have had to throw away everything about myself that defines me and now I don't know how to live the rest of my life. I just know that I want to stay as true to who I am as much as possible and just be me.
  2. Can't stop thinking

    I am very sorry that has happened to your family. I myself am a terminally ill patient so I think about death all the time. I understand how you feel like that there was maybe something that you could have done to help prevent this. However, this is not yours or anyone else's fault. Sometimes the pain is too much and there isn't anything you can do. Your son may have come to terms with his death like I have with mine. He wanted to go out in his own way and I respect that. He is now finally at rest and not in pain anymore. I love that you try to remember him by who he was and not who he was when he was sick. That is how I'd like to be remembered and your son will be remembered.