2nd BMT Hospital Stay, 2005

My second bone marrow transplant was a doozy. I was so sick. Weeks later, when my marrow should have been making new blood cells, nothing much was happening. I was receiving platelet transfusions every two or three days and blood transfusions every three or four days. The doctors didn’t really know why this was happening, but it didn’t take long for my genius BMT doctor to figure it out. Somehow one of the medications they were giving me with the chemo was trapped in third layer tissue. No, I can not explain what that means however, I did learn about the third space around cells in nursing school, and it was very complicated. The important thing to know is that as my marrow was regenerating and making new cells, the chemo drug was stuck in my body killing off everything that was being made.  By now, I had been in the hospital over a month, and I was not improving much at all. I was living off of transfusions and all that could be done was to let my body naturally clear out the drug.

In nursing school, I had also learned about mouth sores. You can learn about things, but until you actually experience it, you do not truly understand what it is like. I pictured mouth sores to be like a lot of ulcers. No, this was bad and very painful. It was large pieces of thick skin that shed all the way down my esophagus. I would cough up huge chunks of skin. Even the skin on my tongue came off. My tongue was completely smooth for a long time, and the tip is still smooth today. The skin on my hands and feet also peeled off. It did not peel off like a sunburn, it was thick pieces of skin. The doctor said my hands and feet peeled because of the chemo drug trapped in my body. I apologize to those of you who do not like hearing stuff like that. I had to tell it for you to get a complete understanding. LOL! Although I did leave out a lot about it.

My mouth and throat were hurting so bad from the mouth sores I could not eat for a month. The nurses were feeding me through my IV line in my chest, and I would only drink water when I could. While this was going on, I was receiving my Tacrolimus by IV because I couldn’t swallow anything. Tacrolimus is an antirejection medication that the patient usually took by mouth. After a few doses of the med through my IV, mom noticed I was acting unlike myself. The nurses and doctors said it was the morphine, but momma new it was different than the way I reacted to morphine. She noticed the nurse coming in to hang more of the Tacrolimus only a few hours after the last dose. She questioned timing of administering the tacrolimus, thinking it should only be given every 24 hours. Mom kept telling her something was not right, and the nurse finally said, “do you want me to check it?” Of course, mom said yes, and the nurse did. A little while later the doctor and pharmacist and a team of personnel came in to my room. They were filling out reports and questioning mom. The medication was supposed to be given every 24 hours, but the pharmacy had labeled it to be given every 4 hours. They had overdosed me on the medication and it was causing all kinds of side effects and reactions. I had tremors and bad hallucinations. I was seeing things that I thought were really there and happening. At one point, I thought there was a circus outside my window and people all around. I did not know what was real or fake. It was very stressful for me and my mom. Momma also said I was screaming and flailing my arms around. I was given meds to counter act the overdose and was soon back to myself.

There was about a month’s period of time that I was completely out of it. I do not remember this period of time, I was being fed through my IV, and I was very sick. Then a new problem arose. One thing a bone marrow transplant patient can get is Venous Occlusive Disease (VOD). VOD is when there is a blockage in the small blood vessels leading into the liver and the vessels inside the liver. This causes death in many of the transplant patients who develop this disease.  Mom had been borrowing the BMT unit’s patient laptop researching VOD. She saw that another hospital had been doing a study on a new medication for the disease. The study had shown some effectiveness in patients there. She asked my BMT doctor about using it for me. He said that a person in Israel had control of the drug, and, as a last resort, he would contact him. After days of showing no improvement, my doctor told momma he was contacting the person they had talked about in Israel. Mom knew what that meant – “a last resort”. Miraculously when everyone thought I was about to take my last breath, things started improving. I know it was all of the prayers that were being prayed from here to Germany. Finally, after 68 days I was being discharged.

This transplant was tough, and it is a miracle I am alive. All of these things that were happening should have caused death, but I am still here to talk about it. God can take you through rough waters, but he will also bring you out of them. These journeys only make you stronger. You can triumph through the worst if you trust in HIM!