Hemangiomatosis: Have you heard of it?

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When I was 2 and a half years old my sister decided to take me on her bike when she went riding. She put me on the handle bars and expected nothing would happen. She was wrong. I slipped forward and somehow my foot was caught in the spokes and was broken. Not just my ankle, but the small bones on the top of my foot that take forever to heal. Not long after, I fell in the kitchen while helping my mom mop up orange juice and broke both legs. That act of helpfulness got me stuck in a body cast for 3 months. During this time my mom and dad were being silly and tickling my sister and I, and felt a mass. They rushed me to the ER where doctors discovered my spleen was three times the bigger than normal.
And so my journey into medical hell began. I became the doctors guinea pig; test after test, biopsy after biopsy. Finally, after what felt like years but was really only months, they determined I was the 8th documented case of a very rare illness. A disease that caused holes in my bones, fluid to build up around my hear and lungs, and caused my heart, spleen and liver to be enlarged. What felt like an eternity of pain and questions finally lead to the discovery that I have Hemangiomatosis.

The doctors sat my parents down and told them I wouldn’t live but another 4 to 6 months. (thankfully they were wrong).

Over the years I have had bouts that make me so very ill,  that I have to have my lungs tapped…. quite often actually. So that the fluid won’t cause them to collapse. My left lung has collapsed on the lower portion. I had to have it lung glued to the chest wall to prevent it from further collapse.

3.5 years ago I got so sick that the doctors had to insert a chest tube in each side of my chest. I spent 29 days of hell in the hospital. In a hospital, 2 hours away from my son. My sister and parents took care of him thankfully. My husband spent the entire time right by my side, making sure my wishes about medical care were being met.

This disease has taken away many things we take for granted. About 98% of the time when I go out into a store, church, movies, anywhere that there are people really…I catch any germ, virus or whatever anyone in the place has. My immune system is completely down and the doctors are trying to keep me out of the near constant pain.

You see my lungs are working at 50% or less all the time so it feels like I am breathing with weights on my chest. When it is humid outside, it feels like I’m trying to breathe under water.  My spleen is 3 times larger than a normal spleen and is full of hemangioma cysts. To the point that every doctor I have ever seen, has told me if I take a hit to it, I won’t live to get to the hospital. The hospital I live less than 10 minutes from.

The pain is constant, and in as much as I try to not let it show, some days I hurt so bad I can’t help but break down.

My point of this post is simple. My doctors have searched for years to find a doctor that has seen this disease. And all they have found so far are doctors that have seen this, but only in children. As of right now I am the only known person to live to adulthood with this disease.

That is a very humbling and scary thing to learn. All sorts of feelings fly through my head and my heart. Will I make it to see my son grow up?, See him walk across the stage and get his diploma, see him fall in love and get married, will I get to know the feeling of becoming a grandmother some day.

I try and stay positive even with these thoughts running and more run through my head in a nearly constant loop. When I am so sick I can’t hardly move, can’t get out of bed I try to stay positive. Not for me, but for my husband. For my son. For my friends and family.

And I will keep marching through this trial, this Hell of this disease. Because my son deserves to have a mom that will walk through hell, who fights hard, and is a good example of not giving in or giving up.

So I ask this favor. Please share this on the off chance we can find help. And because I have kept quite for years to not seem weak. But I now know it takes courage to share my fight.

Hemangiomatosis…. Have you heard of it?

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14 thoughts on “Hemangiomatosis: Have you heard of it?

  1. I can only imagine what it might be like, to be a living, walking miracle. And what an amazing gift to have been blessed with a child, when your own life was never promised. You are quite an inspiration, my friend💗

    Liked by 1 person

  2. I’m in awe of your courage, stamina, determination, and bravery to keep on fighting. I’m honoured to know you and call you my friend. I will be praying that we find someone with this disease or Dr’s that have treated it. I will share with my friends in the UK to see if they can help. ❤️

    Liked by 1 person

      1. Awe my beautiful friend you’re so positive and selfless. Praying for you I’ve shared all over my social media. I tried reblogging but I experience and error. I will try again when I don’t want to throw my phone. My love and prayers are with you always. ❤️

        Liked by 1 person

    1. As of right now they are saying that until they can find a doctor who has seen this that it isn’t idea to remove it. I have asked The doctor to find someone that will, if possible. The spleen hurts like crazy, but isn’t the only thing that hurts.

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  3. You have quite the journey to share….I never have heard of your illness but it does sound quite the load. The fact you have a wonderful family and inner circle and won’t let your illness define you speaks volumes about who you are! Stay strong

    Liked by 1 person

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