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Tese's blog: "My Heart"

created on 11/16/2007  |  http://fubar.com/my-heart/b155497

My terminal illness

I know by Gods grace and only his grace I am alive today, the thing I was immediately struggling with was why was I saved? what is my purpose? By all medical standards and reasonings I shouldn't be alive, and when I did finally go to get a second opinion from a different hospital I was given 72 hours at most to live without surgery. I was in CHF, and had a severe bacterial endocarditis (they said it was a rare Methicillin Resistant Staphylococcus Aureus bacteria) that was ravishing my heart tissue, this wasn't all though I had an enlarged heart, a fistula which is an abnormal opening from the inside of my heart to the outside made by the bacteria eating it's way through, I also had the infection in my tricuspid and mitral valves, and a burst aortic aneurysm which the doctors at the first hospital I went to (where I was working when I started getting sick in September of 2004) told me that "it was in my head", that "I was 33 I couldn't be having chest pain or shortness of breath", they put me on zoloft saying "I was depressed and imagining I was ill". I believed them.Well this went on and on, and in the meantime I kept complaining of chest pain shortness of breath and couldn't even climb the stairs to go to bed I slept on the couch alone so these doctors although they did not believe me their greed or longing to shut me up LOL did make sure I had every test available; heart cath, stress test with and without the medicene, I had echocardiograms, EKG's and blood tests everything was negative, but I was still feeling worse and worse. I quit my job, stayed on the couch no longer even eating and waited to die, finally on March 14th 2005 my father, aunt, mother, sister, cousin, husband and even the doctor of my family medical practice who was on call, insisted I go to a different hospital's ER. I being stubborn and being told for 6 months I was just "mentally ill" refused to go to the new hospital stating to everyone who told me to go, to remember... "it was in my head", "I was crazy" remember etc etc but then finally my father flipped out and said if he had to come get me and drag me there he was going to and I wasn't going to be happy about it, So you guessed it.. I did agree to go after a long days worth of arguing, because not only did I not want my dad to come get me when he was mad, but I couldn't walk 3 steps and I was Short of breath and felt as if my heart was going to explode from the racing, I was by this time turning a greyish color, I agreed finally and went to a different hospital Harrisburg Hospital where angels dwell and they immediately knew I was in heart failure, and did a transesophageal electrocardiogram or TEE for short (they looked at my heart by going down my throat with a scope) and found my heart was about to quit, and was severely infected and damaged they called in experts from other hospitals, and I remember they kept saying things like "I can't believe this", "your a miracle", "oh geez call so and so in here he/she needs to see this" etc etc," my cardiologist who gave me all the tests that showed nothing and was a normally unemotional man, & was always very professional, and upfront on my previous visits, was now gently holding, and patting my hand and looking at me with the saddest look I have ever seen! The doctors and techs kept calling more and more people in to see me, and they all looked at me that way, you know? the way you look at a dying person with sympathy and raw emotions! but really I was too sick at that time to think about it, but now it is as if I was dreaming I remember every detail it just seems unreal!. I was then taken up to a private hospital room where my entire family was gathered to see me, I remember Jamie(my husband Jim) lying next to me holding me on the bed and nobody told him he couldn't like they normally would, I mean after all they thought he was holding his dying wife what would they say? I was fading in and out of conciousness constantly as my heart struggled to survive and my spirit was fighting with it's last once of strength I do remember talking to the surgeon (whose part of my story in itself is a miracle) because he being the best surgeon this hospital has ever seen (according to the admitting doc that was talking to me and my family at the time!) this guy just recently moved back to the area or he wouldn't have been available to take on my case and I would have had to been flown out of state which would have cost time and more importantly my life, anyway this doctor who I now call one of Gods earth bound angels was Dr Mumtaz he spoke upfront and honestly never sugar coating a thing. First he said I was a miracle from God and should not have been alive this long with this severe heart infection,failure and the extras that I mentioned above, and then he told my parents, my husband and I that he gave me 3 days at most to live without the surgery, and I told him "Well Doc you do what you have to do and I will do what I have to do", we then discussed the different valves.. mechanical.. biological.. animal etc etc, I was fading in and out constantly so some of it is a blur, we scheduled it for the following morning, I do remember being surrounded by my family, those living, and those passed on, those living I asked to come in to say goodbye and ask them for forgiveness for anything I might have done or said to them to hurt them, and to let them know I forgave them for anything they may have ever said or done to hurt me, I was preparing to die. I often hear of many people saying "I wish I could have said this or done that" so I made dang sure I was not going to be one of them.My cousins, cousins children, aunts uncles, nephews, great nephews, sister, everyone it seemed was piled in my hospital room and they allowed all of them in at once because they were allowing me to say goodbye! My grandmother Ruth whom I cherish and whom had passed away years before, held my hand throughout the night standing by my bedside,(some say it was a hallucination I say it was God after all he is the only reason I was there in the first place) My grandmother stood there all night holding my hand in the dark/quiet of the hospital room, telling me she was here for me, but not to take me, I knew it was Gods way of helping me make it one more night, until his angel Dr Mumtaz could help me in surgery the next morning, and God kept encouraging me by sending her to me. I also saw but never heard any words from a few of my other family members who have passed. I remembered dreaming of them we were climbing a gigantic lush green hill with flowers, and I could hear the sound of water, the smell was fantastic funny they say you cannot smell in your dreams but I did.. I smelled the crisp freash air, the fragrant flowers, and the grass, We would rest off and on as we climbed it, I sat on a rock resting my head on my grandmother as she caressed my face, and spoke gently to me, her smile as vibrant as it was all of my life. My uncle Aaron and my aunt JoJo, my cousins Cindy, and Lisa all passed on from this life were there, they never spoke a word they just smiled, I felt safe and warm, and loved! We reached the top of the hill and there was a wonderful and beautiful view of a waterfall there was a rainbow, flowers, and a big oak tree, I could hear the water splashing, it was so soothing and relaxing, we sat, I rested my head on my grandmother and fell asleep, the next thing I remember is waking up struggling to breath wanting to rip something from my face it was smothering me, I was terrified, I heard voices but couldn't focus on anything or anyone, they held my arms down gently but firmly, I heard the words respiratory arrest, and hurry, then I just remember darkness sweet darkness once again, when I awoke I found my surgery was complete, I hurt very little, but my trouble was with my breathing tube my body was fighting it, I wanted to breathe on my own which caused me to have respiratory distress because the machine was breathing for me, they were surprised I responded so quickly after surgery. I laid there in the Cardiac care unit the youngest person at the age of 33 and looked around me,. It was like I was waking from a dream and everything was surreal, The noise of the monitors, and nurses tending patients, the doctors talking with patients, I awoke and felt so alive, no pain, My children Justin who was 15 and is 18 now and Jenna who was 13 and is now 15 were there, with my husband Jamie, they were all upset I saw the pain in their eyes the soft way they spoke as if they might hurt me with their words, but it was exactly the opposite I felt happier then I had ever been, after all they said "I should have died" I survived a 16 1/2 hour operation to restore my heart... the essence of your bodys life. I heard the tick tick tick of my mechanical valve but thankfully felt no pain and I tried to talk to my sweet family but I was so tired I nodded off. When I awoke later my husband and son were on both sides of me both were sitting in their chairs and had laid there heads on my hospital bed and slept as I did. I know because they had been so emotionally drained, we were just thankful to have another moment together. I looked at them both for a bit, then dozed back off when I awoke again it was late and my family had gone. I did not feel physical pain but I was saddened, then I peeked at my chest and could not see much since I had a surgical bra on but I did see some blue stitches poking up and prayed to God for his mercy and keeping me with my family for a time longer. I have been spending the last 2 1/2 years healing and researching my life and what it means to me and my family, I also was blessed with several new great nephews, and a beautiful niece who was born August 13th 2007 and has been living with us since she was a month old and whom I take care of daily. I know why God saved me now and what my purpose is, I am to love, and support as many people(strangers, friends, family) as I can while I am alive.This is a terminal illness for me and I was given the dreaded time line but, I also know that I not only intend to prove that wrong, but I am going to spend it being happy, and loving everything and everyone as much as a human soul can!!! I have so many wonderful goals, and a much better outlook on life. I do need to work on my self esteem as I have gained a lot of weight and now have a scar from the bottom of my neck to above my belly button, but my husband says it is beautiful to him because it means I am alive so I have gotten mostly over that part in the last 2 1/2 years LOL now for the weight part hmmm we need to talk about that another time LOL Although I still struggle with my health daily take many different meds, and have in hospital stays due to complications of my illness and bouts of heart failure on and off, My life is wonderful and meaningful. I Thank God everyday for blessing me with wonderful loving family, and friends who support me and give me a reason to keep fighting...I also praise him for blessing me with new friends and opportunities to give a little more love, kindness and laughter to those in my life...Praise God for he is good and he is always there when you need him! Love always, Tese
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