I started having nausea about four days after starting on these medications. I couldn't eat or drink much because of it, so I quickly became weak and was eventually unable to get out of bed. Being a nurse, I think I was a little more stubborn than most people would be, so I just attributed it to dehydration and tried to treat myself by drinking Pediatyte. I woke up at 4:00 am one morning and was unable to move. I started vomiting and Glenn called the doctor on call. He instructed us to go straight to the emergency room at Carolinas Medical Center, where my pulmonologist Dr. Dan Howard works. Glenn had to carry me to the car, and I was so sick that we both thought I wouldn't make it to the hospital in time. When I arrived, my blood pressure was only 70/40. They rushed me in and started running tests. I was diagnosed with toxic hepatitis, caused by the medications I had been taking. I was told that it would take about two weeks for my body to get over it. During that time my weight plummeted to a mere 87 lbs.
I was placed in an isolation room in the hospital, where any visitors had to wear a gown and mask before entering, because they were still unsure whether or not I had TB. After being in the hospital several days, Dr. Howard walked in the room without wearing a mask. He informs Glenn and me that the results are back and I don't have TB. He then explains that I have another mycobacterium, and even though it is not contagious like TB, it is very severe and very hard to treat. I remember him making the statement that TB would have been better. The mycobacterium that I had was not a common one, so Dr. Howard did a lot of research to figure out the best treatment plan. I was placed on an IV antibiotic that I had to use twice a day and an oral antibiotic. They put a port in since I would be receiving longterm antibiotics.
Over the next several months, I gained some of my weight back, but my lung function began to fall pretty rapidly. Even though I was being treated for this mycobacterium, it was still affecting my lungs and doing permanent damage. The usual treatment for a mycobacterium is 12 to 18 months. After being treated for one year, Dr. Howard took me off of the antibiotics. Glenn and I were ecstatic. I felt "free" for the first time in a year, so we decided to take a vacation to Maine. It was somewhere that I had dreamed of going since I was a child. When we returned home, I started running a fever again. Dr. Howard informed me that the mycobacterium had come back and I once again had to be placed on IV antibiotics. He also said that we needed to consider evaluation for a lung transplant. It was something that I knew one day would come, but deep down I had hoped I could beat this disease and not have to consider a transplant, at least not at this age.
In August, 2000, I was in the hospital for one of my regular tune-ups, and Dr. Howard came in with some startling news. He told me that my sputum culture came back and showed that I had burkholderia cepacia. This is a very virulent bacteria that some CFers get. He said that it had most likely been causing my recent fevers, and that I might not be able to receive a lung transplant because of it, because the survival rates post-transplant weren't very good for those with this bacteria. I knew at that point that a lung transplant was my only hopes of survival. No one was at the hospital at the time with me, so after my doctor left me with this devastating news, I called my old pastor in Virginia and talked with him. I then asked to speak with the chaplain of the hospital. My hopes were shattered, and all I could think about was not living to see my daughter grow up. I was told that the chaplain would be up soon to see me. About 15 minutes later, a lady walks in and sits on the side of my bed. She asked me what was wrong and began reading scripture from the Bible that she had in her pocket. She then prayed with me, and I felt so much better. As soon as we were finished praying, another lady walked in and said that she was the chaplain. I had thought the lady who had just finished praying was the chaplain. She told me that she was my nurse for the night. I had never seen her before, and never saw her after that moment. I am convinced to this day that she was an angel sent to me to comfort me. The chaplain prayed with me and left. My nursing assistant for the night came in later and saw that I had been crying. She then proceeded to tell me her miracle story. She wasn't supposed to live, according to the doctors, but after a prayer chain was started in her church, she was healed, and the doctors were stunned. I was reading a book at the time called "The Power of a Praying Woman". An old nurse of mine from another floor happened to walk by my door and saw me in the room. She came in, saw the book on my bed and began telling me about miracles that happened in her church after she and several other women came together to read that book and pray for the sick in her church. One lady, she said, was cured of brain cancer, and she hadn't been expected to live. I know that God sent all of those people to my room that night. I am convinced of that, and He gave me so much peace about the cepacia after hearing of these miracle stories. My doctor had told me that once you get cepacia, it doesn't go away. Much to the doctor's surprise, cepacia never showed up in my cultures again. That was a true miracle from God.
A month later Dr. Howard referred me to Barnes-Jewish Hospital in St. Louis to be evaluated for a transplant. At this time, we didn't know that the cepacia would never show up again, but they had agreed to evaluate me anyway. A week before my evaluation, I had to be placed on oxygen 24/7. This was really hard for all of my family, because it was kind of the point of no return. I had finally gotten to the "oxygen" stage of this disease, and there was no going back. I went to Barnes-Jewish in October, 2000 for a four day evaluation. They did diagnostic tests, I had to meet with a psychologist and I was able to meet the pulmonologist and transplant surgeon. It was a very busy four days. I was placed on the transplant waiting list after being evaluated, but was told there was a two year wait. When I came back and told Dr. Howard this, he was somewhat discouraged, because he wasn't sure whether I could wait those two years or not. He then referred me to Duke University Medical Center in Durham, NC.
In March 2001, I went to Duke to be evaluated for their transplant program. I met with their transplant team, including Dr. Scott Palmer, medical director for their lung transplant team at that time, and immediately knew that this was where I wanted to be. The normal waiting period for someone with my blood type was approximately 9 months. I was placed on the list at the end of March. They had done a lot of blood work on me at the time of evaluation, and found out that I had a large number of antibodies in my blood that made me incompatible with 96% of the population. This meant that it would be very hard to find a cadaver match for me, and that I should consider a living-related lobar transplant. In other words, they would start testing family and friends who would be willing to give up a lobe of one of their lungs. They immediately found a match with my Mom's brother Joel. All we had to do was find one more match and I could receive a transplant. About 40 family members and friends were tested. My sister Renee was a match, but after going through some testing, they found out that she had mild asthma which meant that she couldn't be a donor. We were overwhelmed at the generousity of these people who were willing to do this for me. Even more wanted to be tested, but didn't meet the requirements that were set for donors. These included being taller than me ( so the lobe would be of adequate size), being 55 or under, being in good health with no medical problems and being a close friend or relative to me (for ethical reasons).
While all of these people were being tested, I was going through treatment to try and lower the antibody level in my blood. The lower it went, the better chance I had of finding a donor in time. I had to have plasmapheresis treatments three times a week at Duke. This treatment is where they remove your blood and seperate the plasma from the whole blood to try and remove the circulating antibodies in the plasma. Each treatment lasted about two hours. I then had to get a gamma-globulin infusion which lasted another two hours. The treatment was very tiring and had to be done three times a week. I had about a two hour drive to Duke, so it took up the entire day. This was an exhausting few months for my whole family, because my Mom, my Dad and Glenn took turns driving me back and forth. The treatment lowered the antibody level some, but not like my physician had hoped. At the same time, I had to have a feeding tube placed through my abdominal wall into my stomach, because I couldn't keep my weight up. The nutritional shakes that I would put through the tube contained so much sugar and carbohydrates that I had to start taking insulin shots. I also went through sinus surgery the same month to try and decrease infection in my sinuses. Because of chronic anemia, I had to have several blood transfusions throughout the following months.
By September, only one suitable donor had been found, and Dr. Palmer knew that we needed to find a second donor quickly. My hospitalizations were so frequent at that time, that we wondered if we shouldn't just move to Durham until transplant. Since, we were running out of time, the transplant team decided that my mom should be tested. She wasn't tested before now, because she is 3" shorter than I am. She was a match. After going through all of the testing that donors have to go through, they determined that her lungs were actually large for her size. This was a blessing, because it meant that her lobe would be of adequate size.
The transplant was scheduled for Oct. 26, 2001. My mom, my uncle and I were admitted to the hospital the day before to prepare for the surgery. My mom developed a fever the night before, and after much consideration, the transplant team cancelled the surgery. They couldn't risk giving me an infection during surgery. The transplant was rescheduled for Nov. 12. We had about 24 friends and family members who drove to Duke for the "big day", so everyone was a little discouraged. My transplant coordinator, Jean Rea, came into the room after it was cancelled to help support us in this difficult time. There had been so much preparation, including securing three operating rooms beside each other, and we knew that I didn't have much longer to live. Two weeks could have meant the difference between life and death.
On Nov. 7, I started running a fever of 103 and was admitted to the hospital. When I arrived, I couldn't walk from the car to the wheelchair by myself. My Mom had to help me. They ran some tests and took some blood cultures to figure out the source of the fever. That night, my blood pressure fell, my pulse rate increased, I had blurred vision and I became very short of breath. The physician on call had them prepare a room for me in the ICU. By morning, I started feeling better, and by the next afternoon, I was up doing two laps around the hallway. The fellow, Dr. Zaas, who had been there the night before couldn't believe it (he is now the medical director for the lung transplant program since Dr. Palmer stepped down to focus on research). He said he was expecting to find me in ICU hooked up to a ventilator.
The night before transplant, the blood cultures came back and showed that I had a systemic yeast in my blood. This was so serious that they considered rescheduling the transplant again. Because they knew that I probably wouldn't make it if it was rescheduled, they agreed that transplant would take place on schedule, and they immediately started me on a medication for the infection. Casey stayed in my hospital room that night with Glenn and me, and it was a precious time for the three of us. At about 6 am, I started getting prepped for surgery, as did my mom and uncle. All 24 people had come back to be there with me as they rolled me into the OR. I had such a peace about me at that time. I remember a little about the OR, but they quickly sedated me. The surgery took about 7 1/2 hours and was performed by Dr. Duane Davis. My mom and uncle's surgeries took about two hours.
During surgery, the surgeons removed both of my diseased lungs and replaced them with my Mom's left lower lobe and my uncle's right lower lobe. They had to turn the lobes sideways in my chest cavity so that they would fit properly. I now had two beautiful pink lobes that were oxygenating my blood perfectly. The surgeons were very pleased with the surgery and informed my friends and family that everything went well with my surgery and with my mom and uncle's surgeries. I was placed in the surgical ICU. The evening of the surgery, my sister was sitting outside of the ICU and the nurse ran out and told her that I was awake. They weren't expecting me to wake up until the next day, because of all of the anesthesia, so everyone was surprised to see me with my eyes wide open trying to talk. I had a breathing tube down my throat so I was very scared. Thankfully I don't remember waking up.
My first memory after surgery is about 24 hours later when I woke up in a lot of pain. I remember pleading with Glenn to get me pain medicine. I was very scared and wasn't sure if I had come through the surgery ok or not. Glenn reassured me that everything went well, and with the exception of a fever, I was doing better than expected. 48 hours after surgery I walked from the ICU to my room on the stepdown unit without oxygen. I had about 10 different IV medications running in, so the pole that the nurse pushed along beside me looked like a Christmas tree.
I remained in a lot of pain throughout the next week. I also had hallucinations, which was a side-effect of one of my anti-rejection medications. Glenn said I would sit up in bed and start talking to Casey who wasn't even in the room. I was very bloated because of the steroids I was taking and some kidney problems I was having, and I quickly gained 30 lbs. One of the antibiotics I was taking gave me severe diarrhea, so I was up and down to the bathroom all day long. Glenn was my nurse for the next three weeks. The only break he took was when my sister Renee was there. He was then able to spend some time with Casey, since her visits to my room had to be limited due to the risk of infection. She was in kindergarten at the time, and there was no telling what type of infections she had come in contact with.
The surgeon required me to walk laps around the hallway. It started out with two, quickly increased to ten and after two weeks, I was walking about thirty laps at a time. Glenn would make me walk even if I didn't feel like it, which was most of the time. He really pushed me, so that my recovery would be faster. I thought at the time a marathon for him would have been easier than my few laps around the floor. After 16 days, I was discharged from the hospital, and Glenn and I moved into an apartment near the hospital. I had to be readmitted five days later for another surgery. Since I had reflux disease, the risk of aspiration (inhaling food or liquid into the lungs) increased. This has been found to increase one's chance of rejection of the new lungs, so they surgically corrected this by placing five incisions in my abdomen to shrink the opening from my esophagus into my stomach. This surgery was extremely painful, and I was unable to hold down anything, including liquids, for a week afterward. My medications had to be crushed and put through my feeding tube.
By this time, my Mom had recovered enough from her surgery that she was able to come out and stay with me in the apartment. Glenn went back to work and my mother-in-law was at our house to help take care of Casey. My Dad had broken his ankle right before the transplant so he was unable to be with us at the time. My Mom's best friend stayed with us the first week back in the apartment, because I required a lot of care. It was a 24 hour job, and she and my Mom shared it. I had about 20 different medications that had to be taken at certain times, including IV medications and nebulized medications. My sugar had to be checked, insulin had to be given, my temperature had to be checked, I had to test my lung function everyday, and all of my dressings over my incisions had to be changed periodically. I also needed help dressing.
I was also going through rehabilitation at Duke's Center For Living. I had to be there four hours everyday. They only allowed you to miss if you were in the hospital. I had weight training, cardiovascular training and had to do floor exercises. I thought I would die the first week I was there. Everyday when I got back to the apartment and I would take a two hour nap. When I woke up, I would start my evening meds, and would finish about midnight. The next day it would start all over. I didn't get much sleep because of the pain, and because of the discomfort from all of the swelling I had.
I was giving myself an injection of a bloodthinner everyday, because I had developed a blood clot where my IV was in my chest. I gave the injection too close to one of my abdominal incisions, and developed a hematoma. This is a very painful collection of blood at a particular site. I was in excruciating pain and had to be hospitalized for that for two days. When I was discharged from the hospital, I went back to the apartment, and started rehab again. I was still receiving plasmapheresis once a week in hopes that it would decrease my chance of rejection.
Glenn and Casey came to see me on weekends. At first, I was in so much pain that I couldn't really enjoy the visits, but eventually it became the highlight of my week. I was able to come home a few days before Christmas. It was so exciting to walk into my house after being gone for six weeks. My mother-in-law had decorated the entire house. I developed a stomach virus the week I was home, but was still able to enjoy Christmas with my family.
I had to go back to Durham to finish rehab after New Year's. My Dad started staying with me out there, because my Mom was with Casey now that my mother-in-law was back to work, and Glenn had to work. We didn't go back to the apartment (too many bad memories there). We stayed in different hotels each week, and came home on the weekends. I continued to recover and finally "graduated" from rehab in February after completing 23 sessions. I was able to come home for good. What a wonderful day that was.
A lot has happened since February 2002. First of all, my lung capacity exceeded what they thought it would, so that has been great. I have also been able to keep my weight up for the most part. I have had many hospitalizations for my chronic sinus infections, and had my fourth sinus surgery in Feb. 2009. I have also been hospitalized for my diabetes. They found a mycobacterium in my lungs 3 months post-transplant, but that seems to have disappeared with medication. I continue to be deaf in my left ear and partially deaf in my right due to all of the IV antibiotics I was on pre-transplant. They thought that after I went off of the IV meds, some of my hearing would return, but unfortunately it hasn't. Because of the prednisone that I have been taking since transplant, I have severe osteoporosis in my lumbar spine. I have had 2 more blood clots which have resolved. I had my first pneumonia in Feb. 2006, but it was acute and not chronic; so therefore, IV antibiotics and nebulizer treatments have taken care of it. Because of diabetes, high blood pressure, and the anti-rejection medications, my kidneys failed, and I had to have a kidney transplant in November 2008. The kidney was also donated by my wonderful mom! We are both doing great since surgery.
I went to a massage therapy school and graduated in September, 2003. I think that I went mostly just to get out of the house and because I enjoy school so much. Because of my immunosuppression and the osteoperosis in my lumbar spine, I am not planning on going back in to nursing and I am not practicing massage. Even though I miss being a nurse, I couldn't ask for a better job than being a Mom and housewife.
Glenn and I are divorced, and we are both remarried. I got married on Valentine's Day, 2006 to a wonderful man named Jason. We met at church and had a very short engagement. Casey is so happy to get a step-dad, and Jason adores her. Casey also adores her step-mom, and thinks it's pretty cool that she gets double presents, double vacations, and double holidays. Sometimes it's easy to ask "why" when bad things happen, but in the end, God always reminds us that He is in control and that things will work out for the best.
I know that there is a purpose in everything and that we go through adversities to make us stronger and closer to God. I can only hope that the trials that I have gone through have made me a much more compassionate and loving wife, friend, mother and daughter. God has been good to me and blessed me with so much. New lungs and a new kidney are just two of the gifts He has given me.