So....I want to share my story. I don't have facebook and I'm not really a person who reaches out to others for help, but at this point.....I have a need to do so.
Where does my story start? Well....about three years ago I had a back surgery where the surgeon went through my abdomen to fuse my L5 S1 disk. Immediately after surgery, I had issues. I was hospitalized for about a week because they wouldn't let me leave the hospital without moving my bowels.....(not really something you want to go public about, but unfortunately this is my reality now).
After multiple followups and trials, hospitalizations, er visits, etc. My Lancaster Gastro doctor decided to send me to Hershey to meet with a colorectal surgeon. I met with him and after several tests and some consideration it was decided that my colon must be removed. I was diagnosed with something called Colonic Inertia. I had surgery in May of 2013 to have my colon removed. The morning of surgery we were told that it was an easy case and it would be a walk in the park.
My walk in the park ----- One of the worst walks of my life!! I awoke from surgery to find out that they had run into some complications and I now had an illeostomy. (this is a piece of intestine that is brought to the surface of your abdomen and has a "hole" which releases all the bowel movements into a bag). I was told this was temporary. After being in the hospital for a couple of days, my family and I started to notice that the illeostomy wasn't exactly giving the output that it should. The doctor ignored my pleas for help as I vomited non-stop. I went from about 150lbs to 93lbs in a matter of two weeks.
Finally an intern took the time to listen and looked over things, they catheterized my illeostomy using a long tube to release what was esentially stuck inside. The cathetar worked intermittantly. Finally another doctor came in during rounds because my doctor was on vacation. He sent me for a CT scan which determined that the illeostomy was not performed correctly and was what they claimed as "tied too tight" so the bowel couldn't release it's contents into the bag naturally like it is supposed to. They told me I would have to have another surgery to have it reversed. The next morning my doctor came in and said that he "tied it too tight" to avoid a hernia and that they would reverse it and everything would go back to "normal". I had emergency surgery the next day to have the illeostomy reversed and bowel reconnected inside.
Surgery went well for the most part. I was hospitalized for a few weeks and monitored. All the while still vomiting and now having uncontrolled pain/nausea and diarrhea. In three months time, I was only home for a total of 8 days. I was hospitalized the remaining three months. Throughout the hospitalizations, I was constantly nauseous and vomiting. The doctors started to blame my "illness" on depression and anxiety. I was then diagnosed with gastroparesis a condition of delayed emptying of the stomach. Anything I ate or took in orally, would get "stuck" in my stomach and wouldn't pass through to my intestine which in turn caused severe vomiting fits. The current physicians I was seeing throughout this ordeal started to make me feel like I was being a nuisance. I had a home health nurse visiting every other day who finally told my family to consider travelling to Johns Hopkins to the emergency room instead of Hershey the next time I was extremely ill.
The next day I was so ill that I couldn't walk. My mom drove me straight to Johns Hopkins to the emergency room. I was admitted immediately for a bowel obstruction. They treated me and I was discharged. This went on for about a year. I would get extremely ill, go to the emergency room, get admitted for a bowel obstruction; they would treat it and discharge me. Every time, the doctors would say, we need to do whatever we can not to operate again.
Throughout this time I tried alternative methods. I had acupuncture twice a week for two months with no results. We changed my diet several time, no results. My medications were being adjusted monthly. This year, I was still constantly nauseous, vomiting and in pain. The doctors at Hopkins were amazing and tried everything in their power.
In September of 2014 I had stomach pain, vomiting and nausea. The usual symptoms of my bowel obstructions that I had been experiencing. Colin took me to the emergency room and I was admitted. Once admitted the doctors had sent me for some testing. It showed that my gall bladder was full of sludge and that I had gall stones. It was about 5:30 in the evening and Dr. Chory came into my room. He explained that my gall bladder needed to come out and what his findings were. He told me that if I was more comfortable going to Johns Hopkins to have it removed, he would completely understand and that he would arrange for me to be transported the next day. He was very informative and I felt extremely comfortable and at ease with him. He said that he would give us an hour to talk it over and would come back. I called Amber (my sister) and asked her to come to the hospital to sit with Colin and I. She came in and the three of us discussed my options. (My parents were on vacation in California and on a plane headed home when all of this was going on). When Dr. Chory came back to my hospital room we told him that we would like for him to do the surgery. He had me sign all the consent forms and I was taken immediately to surgery. Everything went really well and I was back in my room about three hours later. I healed up pretty quickly and was home three days later.
Then my life changed forever.......
On December 7, 2014 I was admitted to Lancaster General Hospital for a bowel obstruction. The doctors treated me conservatively and by December 10, it looked like the blockage resolved on its own so I was discharged from the hospital. My dad drove me home from the hospital and dropped me off at my house around 10am. I went upstairs and laid down to try and get some rest because resting in the hospital is close to impossible. Around 11:30, I woke up to the worst pain I have ever been in in my life. I couldn't even walk down the steps. I called my dad's cell phone and told him what was going on. He and my mom picked drove to the house and helped me out to the car. Colin got home from work right as we were starting to leave to head back to the hospital. I started vomiting uncontrollably and the pain was just getting worse by the minute. That fifteen minute car ride was the longest car ride of my life. I was in so much pain that it felt like it was taking forever to make it to the hospital.
When we arrived in the emergency room we were taken back immediately and seen by a doctor. After much contemplation and some x-rays, they decided to do a colonoscopy to see what was going on. Before they were able to do so, my blood pressure dropped to the 70's and was slowly getting worse. They tilted me on the table so that my head was close to the floor and my feet were up in the air to try taking some strain off my heart. I was moved to a trauma room while doctors discussed what they were going to do. I was immediately prepped for the procedure and said my goodbye's to my parents and Colin. I don't remember anything else about that day.
The next memory I have is of being extremely tired, unable to speak or communicate and hearing voices. I remember hearing my husband and feeling his hand holding mine. I remember my mom, dad and sisters talking to me. I remember hearing other voices but don't remember exactly what was being said. I remember that I couldn't say I Love You back.....I thought I was dying. I would open my eyes for a minute and it was too painful so I would have to close them again. I couldn't move my hands or say anything back. I would lay there and pray to God to help me get through and that if he was taking me....to please take care of me. I wanted so badly to be able to tell my family that I loved them, but I couldn't. I also remember this one deep voice that I would hear praying for me. I had never heard the voice before. Every so often I would see my uncle (he passed away a couple of years ago) and I would feel him rubbing my head and telling me not to worry that everything would be ok.
While I was in the induced coma my family was being told by the doctors that I may not make it and they tried to prepare them for the worst case scenario. Colin slept on the couch beside me in the ICU every night just praying that I would wake up, holding my hand and telling me he loved me. My parents were by my side 24/7 and my siblings were there all trying to cope with what was going on.
Finally I woke up. I'm not 100% sure when it happened. I just know that it happened slowly. I was confused and had no idea what happened or what was going on. I was slowly given pieces of the story to put together. I was told that I had what they call a mesenteric volvulus which is a malrotation where a loop of the bowel is twisted. Most are reversible. Mine unfortunately twisted over twenty feet of my small bowel. When Doctor Johnston (my guardian angel #1) did the colonoscopy, he immediately informed my family that I needed emergency surgery and he called Doctor Chory (my guardian angel #2) who performed the surgery on me. By the time Dr. Chory was called in to operate, my body was becoming septic. He operated for over six hours keeping my family informed the whole time. He told my family that I may not make it and that the next twenty four hours were crucial. Dr. Chory had to remove all but 32 centimeters of small intestine. He also had to give me an ileostomy because the small intestine wasn't long enough to attach to the rectum. I was put into an induced coma because they weren't sure if my body would be able to handle the shock of the pain. There were complications and I was also put on a ventilator because I wasn't able to breathe properly on my own. My blood was all out of whack and I ended up having a blood transfusion while in a coma.
Just to put it into perspective.... Your digestive system is made up of several major organs: the esophagus, stomach, pancreas, gall bladder, small intestine, large intestine and rectum. I am now missing my gall bladder, large intestine and the majority of my small intestine. My rectum is now damaged and I will never be able to use it again. A small intestine is typically about twenty feet. I am now left with less than a foot.
Going back to the hospital recovery.....I was in ICU for a little over a week. A few days after I "woke up" from my coma I was up and walking from my bed to the chair in my room with assistance. I was able to have the catheter removed and was slowly starting to be able to urinate on my own. I slowly worked my way up to actually walking in the hallway around the nurse's station. Things were still a pretty good blur but I have some memories of the hospital stay. Colin slept beside every night and held my hand. He has been my rock through everything. My parents and Amber rarely left my bedside. The doctors were amazed that I was sitting up in bed and walking and talking. I will never forget that one day I was just feeling like a needed a shower. We called the nurse in and asked her if I could take a shower. She was giving us a look of shock. She told Colin and I that no one had ever asked to have a shower before and they didn't even have showers in that wing. Two nurses and Colin took me to a different floor where there was a communal shower and they helped me wash my hair and body and it was one of the best feelings ever!!
A few days later I was moved out of ICU into a private hospital room on a med surge floor. I was slowly gaining strength and doing my best to get through each day. I was walking the hallway several times a day. It was getting close to Christmas so I was working on organizing my Christmas gifts for others and making sure I had everything in order. One day, the priest from the hospital came in to visit. He asked if he could pray with me. As soon as he started praying, I knew the voice. It was the voice I heard when I was in the coma. He was talking to me and praying for my recovery. As he was praying, tears slowly started to roll down my cheeks. I knew this is the reason I am here today. God saved me, why....I am not sure, but he did. He heard the prayers of my husband, my parents, my siblings, my family, my friends and the priest. He worked hard to make sure that I would see another day. This is the reason I am here today. I will never forget that. God saved me for a reason and I am going to make him proud.
Dr. Chory came to my hospital room to visit me daily. During one visit he suggested that I meet with a gastroenterologist named Dr. Harborson. Dr. Harborson is very well known in the area and is also respected as a doctor. He came in later that day and introduced himself. He gave me his phone number and said to call or text any time day/night. Dr. Harborson put me on TPN for 16 hours a day. TPN stands for: Total Parenteral Nutrition. This in a nutshell is my food. It is given to me through an iv in at this point which was placed as a pick line in my left arm. He also reviewed with us what my future may hold. He suggested we go to UPMC in Pittsburgh for a consult and find out if there is anything they can do or suggest to make me better. He visited with me every day until my discharge.
I was discharged from the hospital on December 22, 2014. A few days before Christmas. Dr. Chory promised me that I would be home for Christmas and he kept his promise. I went home to my parent's house so that Colin could work without having to worry about taking care of me since I needed 24/7 care. My parents had vacation time and were off of work so they could take care of me. On Christmas Eve, I was really ill. I was throwing up constantly, my head was spinning, I was nauseous and couldn't see straight. The doctors sent me to the infusion center to get fluids. I was given four hours worth of fluids and felt much better afterwards.
Christmas Eve I went to my mother-in-law's house for our Christmas gathering. It was very difficult to get through but I did it. I had a lot of people asking questions and trying to talk about what happened. Everything was still fresh in my head so certain things just triggered the tears. Colin and I stayed for a few hours and were able to enjoy the gathering and seeing the kids open their gifts, hitting a Christmas piñata and just being able to be together as a family. I slept at home with Colin that night. The first time since my hospitalization. It was nice being home, with my husband, in my own bed. That night we reflected on how much we love each other and how we had a long road ahead of us but God saved me to fight another day.
Christmas morning, we woke up to start another day. I hadn't gotten any Christmas/Birthday (his birthday is Christmas day) gifts for Colin because I was in the hospital and unable to go to the mall/go shopping when I returned home. He brought me this fuzzy brown teddy bear with a little note. I read the note and looked at the bear. He was wearing a backpack. Inside the backpack was a jewelry box which had a beautiful white gold cross with diamonds. I immediately put the cross on. He said he bought it for me when I was in a coma and he would pray to God that I would wake up and spend another day with him. I haven't taken that cross off since the day he gave it to me.
We went to my parent's for Christmas morning and were able to spend time together and exchange gifts with the kids and my parents. After our gift exchange, everyone was getting ready to sit down and have dinner. Colin and I went home. We relaxed on the couch and watched movies. It was very nice to spend time together and just be together after everything that happened.
In January, I met with Dr. Chory about having my picc line removed in my arm and had a medi port surgically implanted in my left chest to use for my TPN and home fluids. I had surgery on 1/24. I was scared to death to have another surgery and was very anxious before-hand, but Dr. Chory came in to my hospital room, gave me a hug and told me everything would be ok. He said that he didn't let anything happen to me before and he wouldn't now either. It made me feel so much better. They prepped me for surgery and I was done in no time at all. I was kept overnight at the hospital and discharged the next morning. I wasn't able to use my port immediately but in a week, they were finally able to access it and let me use it. It has made a huge difference in my care. I can now set up my iv's all by myself and handle all my medications, fluids and tpn on my own.
In March, we were given the opportunity to go to UPMC in Pittsburgh for a transplant evaluation. We met a woman there named Mary Roberts. She is now my pre-transplant coordinator. My mom went with me for the two week evaluation. It was very difficult emotionally and physically. I had a schedule to follow that started us at the hospital early in the morning usually between 5am-7am each day and we weren't back in the hotel until 3pm each day. I had ct scans, bone scans, biopsy's, x-rays and more blood tests than you can imagine. The first week was extremely hard. By Friday I was in tears. I was having a horrible day and to top it all off, my ostomy bag broke. I was laying in the bathroom trying to clean myself up when there was a knock on the door. It was my dad and my sister along with the twins. It really made my day! My sister Amber helped to clean me up. Then I was able to spend some time talking to them about how the week had gone and I played some games with the boys. On Saturday, we went to the Pittsburgh Children's museum. The museum was fun. I was pushed through the entire time in a wheelchair, but it was great to spend time with my family and the twins had an awesome time. Sunday morning I had a scheduled appointment at the Montefiore hospital for some bloodwork. My dad was able to go with me. It was nice for him to hear the doctor and learn some information on the transplant. Sunday afternoon my dad and sister left. It was a nice surprise for the weekend.
The second week of testing was difficult. I had a liver biopsy and had some complications. I ended up being hospitalized overnight. I had several bouts of being dehydrated and having to go in to have extra fluids. My potassium was extremely low so I was hospitalized a couple of times to have bags of potassium added to my iv. We stayed until Friday and I was extremely happy to be headed home. While we were in Pittsburgh we learned that my only chance at living a normal life would be to have a transplant. There really are no other options for me. It was very difficult to hear.
The transplant would be one of the most difficult transplants for doctors to perform. At any given time I could be called once they find a match. I then have four hours to make it to the hospital. They will prep me for surgery. Once I am at the hospital, they send one of their transplant doctors to harvest the organ. At that point, they would be able to determine whether or not the organ is a viable organ and it is healthy enough to the transplanted. Unlike a heart or liver, there are multiple things taken into consideration when choosing a small bowel to be transplanted. The doctors have to make sure the muscle is in tact, that the coloring is good, that there is no underlying diseases that can't be seen on blood tests, that the nerves are functioning etc. It's really not a cut and dry transplant. If they determine that an organ is not viable and once they harvest it they aren't comfortable with it, they could potentially send me home. Then I would wait for the next one. If everything looks good, I will undergo an surgery of anywhere from 16-24 hours long. After surgery I will be in the hospital for about three months. After I am discharged from the hospital, I will have to relocate to Pittsburgh for six months to two years after. I have to be within fifteen miles driving distance to the hospital at all times. The doctors have received all of my testing and now we are waiting on them to meet to let us know if they will be actively listing me on the transplant list or if they want to wait a little bit until my body has time to heal before listing me. It seems as though my liver is starting show issues of fatty deposits and slow functioning due to the TPN so they may have to list me sooner rather than later.
In the months to follow........I have learned my body very well. I become dehydrated extremely easy and end up in the emergency room frequently. I spend a lot of time taking care of my iv, my ostomy and myself. It has become a full time job for me with hours of overtime. We are in a waiting phase to find out when they are going to list me. It has been very stressful and extremely emotional. The waiting has been the hardest part but unfortunately it's something that I'm going to have to get used to when I am actually listed. I think I'm ready for the transplant because I'm tired of being sick and I'm sick every day, but I'm scared at the same time. It's a difficult surgery and long recovery. I don't know what is going to happen but I know that God has a plan so I have to remember that and keep praying that it will all work out.
Now that you have my story, I will update you on a daily basis. I'm excited to share my story and only hope that it helps someone who is having a hard time dealing with something. Please keep me in your prayers.
