My Ordeal

pardon any misspellings or other gramtical mistakes.  It is a long story and there is no spell check.    I started getting really sick last september. It would come and go.  I woke up in the middle of the night with a pain like no other in the center of my chest. It was like a knife litterly stabbing me. I could hardly take a breath. I fell out of bed and curled up oon the floor until the pain lessened enough to where I could stand. This happened on a friday evening and I had had pizza for dinner. I had had these types of pains before but on a lesser note and I chalked it up to really bad indegestion. So I ate a few tums and sat up the rest of the night. The pain subsided a bit but my stomach was ruined and on top of it I had really bad cramping and runny stool. I then started to get queesy by saturday night. By sunday I was really miserable and thought I had bad food poisoning. I had only slept for a few hours that whole weekend. Talking to my fiance' we were convinced that something was not at all right so I decided to go to the doctors monday morning. I called my boss sunday evening and explained to him what was wrong and resolved my self to another sleepless night. Monday morning I went into the doctors office and the nurse practitoner thought my gallbladder was the culprit so they took some blood and sent me on my merry way pending the results. I rested as best I could the rest of Monday and didn't get but maybe 4 hours of sleep that night. I called my boss early tuesday to let him know that I was coming in but I was so sick at that point I needed a little leeway to get straight and get the pain under control in my chest. By this time my kidneys felt like someone was beating on them too. I finally made it into work and managed my way to lunch. I had a little to eat and then my phone rang. It was my doctor. She asked me how I was doing and I said that I was in a lot of pain. She said I would be. The blood results came back she said and I had accute pancreatitis. She told me to not eat or drink anything as of that moment because it would tear up my pancreas even more. She told me to imediately get to the hospital and that she had called ahead to admit me.Keep in mind that this was at the end of September of 2007 and it is now April 2008 and I am not completely out of the woods yet. Little did I know what was in store for me in the near future.I spent the week in the hospital on iv with no foods or liquids by mouth while they tried to get my pancreas under control. The pain subsided and they released me. Keep in mind that the pain never really went completely away just subsided. I was to go back to the hospital again before the year was out for pain mangement and more iv fluids. By December I was functioning on and off at work and I was starting to lose significant weight On December the 10th 2007 a friend of mine started work with me. We live close together so we started to carpool. One moring in in February we were driving into work with me at the wheel. We where almost to our job when a searing pain on my right hand side doubled me over and took my breath away. I struggled for a moment to keep control of the car while my friend asked me to pull over so he could drive me to the hospital. After about 10 minutes the pain subsided down to a throbbing burn but it was manageable. I decided to get him to work call my boss and let him know that I ws going back to the hospital. I drove for an hour and 45 minutes back the way I had gone to work and arrived in the emergency room. Keep in mind that at this point I had been to the hospital so much that everyone there knew me by first name basis. They admitted me promptly to the ER room and did some tests.I waited and waited and sucked down the morphine and finally slept for a bit. Then the results came back. Now not only was my pancreas out of whack but my gual bladder was killing me literaly. I had emergency surgery to get it out and while they where getting it out it burst. I spent yet another week in revovery and went home and promptly got sick again. After spending many sleepless nights and being sick and in pain I finally convinced my fiance' at about 2 in the morning as I woke her from a dead sleep that I needed to got back to the ER. She took me bless her heart. By this time I was throwing up green bile. The promptly admitted me back into the hospital and put me back on morphine and iv fluids. By this time I had lost even more weight. I was in so much pain and I was turning yellow as well as my eyes and i started itching like crazy. They took me back into surgery becoase my liver was poisoning me now. They found a blockage in my bile duct and put a stint in to open it. They day after I woke up as they were about to release me that day in so much pain all I could do was huddle on the floor and wheeze and drool. I wasn't even aware of my surroundings at that point and everything was white. I guess during that moment my relief nurse and my fiance' came in and saw me there. She berrated my previous nurse for not doing anything about the pain and promptly shot me up with a butt load of morphine I was later told to get the pain down enough to get me back in bed. Get this, The doctors were still going to release me.My nurse at this point said don't let them. She also said that the hospital I was in was not going to treat me correctly and that i needed a second opinion. Se recomended Beth Isreal Hospital in Boston. She said they specialize in pancreatic problems and have one of the best GI departments in the U.S. So I told my Doctor I wanted a second opinion and I wanted to go to Beth Isreal. He argued with me for a bit on the issue and then relented. Aftyer a day of wating they Got an ambulance called in and transphered me. As soon as I got there they ran some tests. They found that the stint that was put in had dislodged and moved into my bowels. They told me that I had made a life saving call in asking for the transfere and they imediately took me back into surgery to replace a new stint and investigate this blockage. After waiting for the results for a few days one oth the doctors came in and told me they were waiting on pathology but from what he saw it looked like cancer in the head of the pancreas. Now I was really scared. A day later the the pathology report came back negative for cancer and that evening i was visited by a team of surgens lead by a Dr. Volmer. Dr. Volmer by the way turned out to be a leader in pancreatic surgery and one of the top surgens in the U.S. Now I knew something was up but at least I had the best. He told me i had what they called a double stricture in the head of my pancreas. In laymans terms that a blockage of both the bile duct from the pancreas and the liver. That is why my pancreas and liver were killing me. I kid you not at this moment I was on borrowed time. He told me that they had put in a new stint to open the ducts. He also said that even though all the pathologies and blood work came back negative for cancer he was 97% sure it was cancer, precancer, or at the very least a tumor. In these type of cases he said he only sees about 2% of it being chronic pancreatitis or something else. Again I was scared. He told me at this point I needed to have a radical surgery to save my life. He called it the Whipples procedure. It was described as a massively invasive surgery that would take about 7 hours to complete with a loooooong recovery. My case was so bad that they scheduled it tow weeks from that moment on March 12 2008. So I was released and told to eat and gain as much strenght and get as much rest as I could becuase the surgery was going to take a lot out of me.So there I was, dying and scared and near to tears and then to tears. I cried, I called my parents, they flew in on the 11th before my big day and we all met at the hotel across the street. I woke up at 6 in the morning and was in the hospital by 7:30 and in surgery prep by 9am. By 10am I was knocked out and they went to work. When I woke up a cannot describe the pain. I was so messed up. I couldn't even open my eyes. I heard talking though. It was some doctors talking to my nurse. I had landed in ICU after 9 1/2 hours of surgery due to complications. seems my heart was not doing too well and I ws now ontop of everything else a cardiac arrest risk. I don't remember how long I was there I remeber my machines going into alarm and people running to me and working over me. I know I had a 24 hour nurse aide at my bed side. I heard the doctors whispering around me and i remeber thinking I wasn't going to make it. I heard my parents talking to me but I couldint talk back. I heard my fiance' talking to me and I heard the doctors talking to them. ( This is verydifficult now for me to relive but I will go on) Then one day I opened my eyes and I was in a hospital room with tubes down my throat, comming out of my stomach and lines in my neck amd arms. I was in pain again but not as much as before. I spent long days and nights tied to my bed being visited by my loved ones and family members.Soon one by one the tubes and lines were removed. The one down my throat being the most anticipated. I gagged constantly with it in and it cause me much pain. Finally after only one iv in I was able to walk around a bit. The dacrors were amazed at my ability to get up so soon after my surgery. I was told by my parents that they spent a very worrying time waiting through surgery. That my fiance' almost fell apart. That my pancreas was so bad that it required more work and they amputated half of it in the end and had to rework my whole digestive system. At this point now I weighed in at 114 pounds, considering I weighed 156 pounds before all of this. I was in the hospital for about a week after ICU. During that time i was continually visted by familly and friends. Most of all my fiance' stayed by my side constantly. She never really ever left my side from the start. She has been a constant companion and a source of strength. I really do love her.One of my friends came by to see me after work during that week with his fiance'. I made light of a lot of the stuff i went through and made every one laugh at my jokes. Its how I deal with pain and stress. I joke. Either that or I bottle up. Bottling up at this point wasn't an option. I don't think anyone really knows how much this mentally affected me other than my fiance'. She has seen me through it all as I woke up drenched in sweat, or I convulsed in my sleep so violently that the whole bed shook. The nightmares and the feeling of helplessness as I tried to cope with my situation.Gradually the weeks went by. I hit a few bumps in the road and landed back in the hospital a few times. Then 3 weeks after surgery I got my last drain pulled. It was my stint drain comming from my pancreas. I felt a tug and heard a pop and felt some pain. My doctor told me to stay for a while to make sure I didn't have any complication. So I did. After a few minutes I had to use the restroom. So I did. While I was sitting on the pot a burning pain started in my right hand side of my abdomen. It gradually got worse to were I couldn't stand it any more. I couldn't even finish going to the bathroom. I got up off the pot and got dressed and managed to hang on to the wall going down the hall. I finally got to the nursed desk. I remember saying something but not what. The next thing I remember was searing agonony and 4 nurses working on me on the spot. They took my vitals. My pule was over 150 and my blood pressure was crashing. There was alot of yelling and people rushing. and someone manges to get me into a gurney while the ambulance was called. After about 45 minutes of so much agony I couldn't even move my body an inch the pai started do die down to a dull burning sensation and I was able to move somewhat again. My pulse came back down but my blood pressure was still low. I was so relieved that the pain was gone I sobbed and my fiance' was there still. Again I repeat, no one has seen the amount of agony I have gone through more than my fiance'. If any one ever doubts my last seven months of agony I have been through she will probably break your nose for you. That little incident landed me in the hospital for 2 weeks. Apprently the stint line broke off in side me because the stitching had not disolved all the way. During the first few day there they pumped in four different antibiotics in my vein and burned it up. When I say Burned it up I mean its going on the third week since my release and my vein is still swollen and sore and bruised. After my release...again... I had a good two weeks. I ate well. I even gained a few cople of pounds. Now I am around 117 pounds. I eat high protein low fat foods and carbs. My pancreas seems to be healing a bit and my blood sugars are back in control. Yehaw fer me! No more insulin shots, and no more sugar crashes. Its now April 25 2008 . I have been diagnosed with a gene that causes systic fibroses. I do not have cancer. I fell into the 2 % Doc, how lucky is that? The down side is I have a disease. It nearly killed me and it could attack me again. The good news? Its treatable with steroids. I am 44 day out from surgery and still healing. I have my good days and I have my bad days. I have anxiety issues now. I wonder why*sarcasm*. I have to take my anxiety medication or I can't sleep, or if I do sleep I have nightmares, soak myself in sweat, or convulse in my sleep. I find I break down very easy now. Sad movies make me cry and seeing others in pain or near death really makes me crack. But every day I wake up is one more day behind me and and I have the love and support of so many. Its enough to make me cry yet again, and through it all my fiance' is still by my side.Today I'm having a bad day. They switched my anxiety meds. Last night I did not sleep well. Today I lost my appitite and felt sick My side feels stiff and sore and my anxiety is up. I didn't want to write this post either. Reliving this ordeal is trying and difficult to face. I did it though becuase my friend at work reads my blog. I did it becuase he asked me to write something and this story has meaning. I did it becuase I need to face this over and over because it isn't going away. Most of all I did it becuse I'm still here and I still belong to the humane race now more than ever, and along the way through this path of pain I met so many who gave so much to me. Kudos to the nurses for working so hard for me. Kudos for all the doctors and surgens who saved my life and for all the friends, family, and loved ones who stuck it out with me and lifted me up when I fell. Monday I go see the specialist for my disorder and after that. well thats another post.Be well everyone and let your family, friends, and loved ones know how much they mean to you. You never know what around the next corner waiting. Take no chances. Love each day and take nothing for granted everything is wonderful in life and I am so happy to be here.