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What has happened over the week.

Discussion in Everything & Anything started by Kosuki, Dec 15, 2012

  1. Apr 14, 2011
    Hey friends in PF. I know I made a topic asking for removal of my admin. I dont want anyone to think that I am leaving or dont care about PF. I think of all of you as my friend and I respect all of you. I have been going through alot over this week alot that was not planned. I am not afraid to put this out their on the internet to you guys because I need to be honest so if one day you never hear from me again you will know why.

    First of all, I was born with a heart condition. A "Coarctation of the Aorta" and over the years I have had surgeries to keep me alive and keep my heart running. At the age of 16 I had open heart surgery and my aorta was repaired with a Humashield Graph".
    I also have been diagnosed with Behcets Disease Link 1 Link 2 Link 3. I have a basic case where it only produces sores on my body 90% in my mouth and 10% on my body. This is a genetic and a non transferable disease like aids or anything. What also is puzzling doctors is my disease is doing something it has not been seen doing in other people. When my behcets gets out of control and goes on a attacking spree, it 1. Attacks my weakest point my heart graph and 2. It causes waht looks to be Allergic reactions, Hives, Swelling airway, dizziness. So I never know If I am having a anaphylactic reaction or if I am having Pericarditis.

    After ruling out through tests that it was not Pericarditis and after seeing an allergist for testing that I am not allergic to anything airborne or any product I have eaten the only conclusion is my Behcets is causing these symptoms. So what do I do now. After my care at UCLA, I will get to that in a paragraph or two next, I am transferring all my care back to Stanford. Standford did my Open Heart surgery and has followed my care for 23 years. UCLA was only brought in for a laps in insurance for a few years.

    I had appointment's with Rheumatology and with Infectious Disease on December 6th. I went to both appointments and the basic ruling was I needed to start medications to suppress my immune system to stop the Behcets. We wanted to wait till Cardiology cleared me on the 7th (next day) to make sure my heart was ok. After we left the appointment with Inf Disease we got 4 blocks away looking for a hotel in Santa Monica, what happens next I cant even put into words but here is a discription.

    I was in the passenger seat and we were looking for a hotel close to Westwood for my appointment the next day. Next thing I know I feel all my energy rush out of me a feeling what can only be described as experiencing negative G's. or that feeling you get in your stomach when your topping the hill of a fast roller coaster the negative G feeling. I felt drained instantly, and was dizzy, blurry vision and my respiration's were dropping as if I was passing out due to low blood pressure. My heart beat got high 140's and my pulse was thready so basically my body was almost going into shock while having an allergic reaction at the same time.

    My mother pulled into the UCLA Santa Monica Vallet Parking and ran inside and told a security guard I was having chest pains and difficulty breathing and I was in the car. The guard got on his radio and called a Code Blue to the Vallet Parking.
    with in 10 seconds I see another guard running with a AED and then I see nurses with a crash cart, doctors, medical assistants, and other hospital personnel running out. About 15-20 people with ion 20-30 seconds of the call. I am put into a wheel chair and taken to a side door to the hospital with 2 nurses and 3 security guards opening doors and getting me in the back door and into a Trauma room. At this point no one knows whats wrong with me. I get the full work up and am loaded up on medication. I am later admitted to the hospital.

    UCLA Santa Monica is no longer a place I would go for inpatient care. The doctor the assigned me was a 1st year resident and this was over the weekend meaning all administration was gone. He was advised to call Stanford and my General care doctor because they know what I need for treatment what how to treat me. Letting his Ego and God complex get in the way of treating a patient he refused to talk to anyone about how to treat me and took it upon him self to Reinvent the Wheel. We had told him my medical history, and was has been used to treat me in the past and he chose to use his own coarse of treatment that delayed me getting proper medical treatment for almost 4 days. After we got a hold of Stanford and told them of the situation this Resident was paged my my doctor from Stanford. He is the Cheif of Pediatric Cardiology. After this resident was talked to from my doctor lets say, his tune changed and he started listening and put his ego aside and actually took help in treating me.

    I am now home taking Steroids and other medication to keep the inflammation down and the Behcets in check. This is only a bandaid till I can get in to Rhumetology for a more permanent medication. Because my immune system is over active and is attacking my body I really only have two choices both are not good choices.

    Choice 1. I do not take the Immune Suppressants and suffer with these sores for my life. These sores in my mouth cause pain and sometimes prevent me from eating, and drinking enough so I get dehydrated and stressed from the pain of them. The sores on the outside of my body leave me open for infection like in September. I had a cluster of Sores on my lower parts of my body (1st time ever) and it caused a Major Staph Infection and I was in the Hospital for 3 weeks, and I have Medical Amnesia of the event because of the Severity of the outbreak. I have memories but I swear i was only in the hospital for four days but it was really Three weeks.
    Choice 2. I take these Immune Suppressant drugs to decrease, not turn off but decrease my immune system. The benefits are no more sores and I can live a pain free healthy life. The down side is I am not open to infections, bacteria, and diseases the averaged persons immune system could fight off like the cold, or other basic things. I will not have the immune system to fight these, so for example a cold for you would make you sick, for me it could kill me because my body could not fight it off. I am more susceptible for Pneumonia and other infections.

    So here is what it boils down to for me. Do I take the drugs and get infections from the sores but have a overactive immune that is attacking tying to kill my body, or do I take these drugs and not have the sores but at the same time, not have an immune system either leaving me open to infections and bacteria...

    I am going to go on these medications because it will give me a longer life than not taking them. I want to get into spring school. I have been trying to go to college since I was 18 but always been too sick to go, now that have the chance I will start. I want to do something meaningful with my life. I am thinking of getting my RN or MD. Yes that will expose me to sick people but I want to help people at the same time. I don't want some office job sitting behind a desk answering phones, or what not. I have lived a life in the hospitals and know what its like to be a patient and know how these things feel. 90% of you doctors and nurses have never gone though this and truly don't know how these people feel that they are treating. I would and that is why I want to go down this career path. I could relate my my patients in a way other could not.

    I have yet to get my basic transferable and may change my mind what ever I choose will be my choice. I just want the chance to be able to make that choice and go to school. So this Monday I will be calling my local school and getting signed up for classes. I will try to get as many as I can online.

    This is my life, these are the cards I was dealt and I will work with what I have. I strive to become a better person each day and to better my self. I don't talk about this and how I feel with people because of reason I cant explain. But after these recent episodes that brought my so close to death I feel I should start opening up and telling people how I feel about them, how I feel about my self, and what not.

    This is my and this is who I am, I am proud of who I am and do not wish to be anyone else. I would never wish anyone in my shoes nor do I wish to be in their shoes. Remember never to judge a book by its cover, always read the story of that book before you decide your conclusion on it. What appears on the outside is not always the case of whats going on, on the inside. Give people a chance, and try to treat people the way you want to be treated. We are all human and we are all mortal, we all have our own book to write and I am starting on mine.

    God Bless and may your book be read someday.
    • Friendly Friendly x 4
    • Like Like x 1
    • Jan 12, 2011
      It's hard for me to put words to this, but I really wish you the best in your health and your pursuits, @Kosuki. I can't imagine how difficult that condition is on daily life, but you've persevered and kept yourself together. That speaks well to your character and your aspirations, and I have no doubt that you'll pull through things as long as you have the will to make them happen.

      Good luck and be sure to write back to us when you have time in the future. [IMG]
      Vadleon, Dec 16, 2012 Last edited by Vadleon, Dec 16, 2012
    • May 31, 2012
      Challenging read, my personal health has always been pretty good (enough) for me to hardly consider what it is like to be in your shoes. I'm glad you choose a worthy struggle and to move as far as you can in order to achieve your goals.

      Health stuff is very difficult for me to understand, my brother knows a lot more about it :doctor:. I am sure he is curious of your EKG if he had an opportunity to read it; from your description, sounds like some really bad and serious stuff. I wish you well.

      The school stuff, that is my strength. I, once, was pretty much a drop out and not pursuing school. Being that I already had a good job and pay, it was very difficult for me to make a decision to go back to school. I am certain that if I had health issues it would be even more difficult; I have to commend you for your decision. Even though school has been rewarding for me I still have to drag my feet to get into class. However, my new main job allows me to professionally participate in research that will help change the world too. This decision did pay off. This job is so cool that people laugh and think I'm joking when I tell them about it. I think school will pay off for you too.

      Hard to reply to these type of posts when they seem so saddening.
      But I just wanted to say, it seems like you are on the right track.
      You are going to make it happen.
      • Like Like x 1
      • Mar 4, 2012
        Spoken like a true man. Good luck to you dude.
      • Nov 6, 2011
        bro words cannot express the feelings i am feeling man hey you just earned my respect as a person and i wish yout the best in life i can only imagine what you go through in life :/ but i do know you are stronger then i could ever be :smile:
      • Apr 1, 2012
        I don't really know you but may everything in your life goes towards your favor.
        if I were you, I'd ignore the pain and agony and embrace joy and pleasure out of the things that I'd love to do! good luck with getting the medical license!!
      • Feb 11, 2012
        This has literally brought tears to my eyes more and more as i read what you wrote, honest to god truth i really hope you the best in life brother, keep your hopes high, my prayers are with you my firend.
      • Jun 11, 2012
        I wish you to return to super awesome health and getting back to your feet. I applaud for going through the hardship and never giving up. I also applaud you for being serious about learning about all aspect of your health and keeping yourself up to date with everything.

        Wish you all the best and a best of luck.