My Platform NMO Rare Disease

Saturday, May 18, 2013

What ... back to back exacerbations?

I was told to focus all my energy on recovering, because it was very unlikely to have back to back exacerbations. Every ounce of energy I could muscle up went on recovery and the recovery required that and more, however I had another exacerbation before fully recovering. We’d enjoyed a fabulous July 4th weekend in Dallas with Roland, Rida, and Kitty my brother in law and two sisters. It was the first time my family and I were able to go anywhere since coming home and we had a wonderful time. The men (Roland and Joshua) sat around catching up, while we cooked our favorite seafood dishes, along with salad. We shared stories while we ate, and then as usual the sleep monster came and dragged the men away to the living room right in front of the TV. We quickly cleaned up the kitchen, so we could get on with our stuff. Rida and Kitty overhauled my feet (three months in the hospital did a number on my feet). Kitty did my eyebrows, and let me just say I was ready when she finished. We ended the evening like we always do when we get together laughing about our days growing up. We got up packed and went to church the next morning (we planned to come back home after service) with Roland and Rida. Walking in to church seemed so difficult, Rida noticed right away, but I convinced her that I had not had time to get my bones moving well before we were off. I think I was even trying to convince myself too because I did not want to think about having such a hard time walking after I had done so well the entire weekend. At the altar call I felt compelled to go and have a minister pray that my normal walking pattern would return. As soon as service finished we said good-bye and headed back to Arkansas. All during the trip back I found myself praying for God to continue to restore me, but could not deny the weakness I was experiencing. We made it home safe, Joshua headed to work and dropped Diana to school on his way. I’d decided to rest after therapy. I was having both physical and occupational home therapy, provided through our home health service, my vital signs was also monitored by the home health nurse. The nurse noticed my pulse, and blood pressure both to be elevated during her visit so she notified the doctor’s office. She contacted the therapist and told them to take it easy on me during my therapy. When the therapist came I asked him what he thought about it all he said it was probably fatigue from the trip. I so wanted this to be all there was to it. Well, by late afternoon I was on my way back to the hospital in Little Rock for evaluation. Turned out I was having another exacerbation and it was stronger and capable of more damaged than the first one. Initially I was so enthusiastic because of how well things had gone the first time around. However the reality of the matter was quick to surface. Upon arrival to the Neurology floor the nurses all seemed to have a sense of urgency unlike before. I noticed tests were repeated frequently, soon the doctor’s made their rounds, and it was at that point we were made aware of the seriousness of my condition. It was very difficult to accept their grim prognosis, and I pretended not to hear what they had to say. Even though I fought day and night my body deteriorated rapidly. One morning I became very disoriented, and confused. I was aware early on that there could be some mental changes, but to this point I had not experienced it, everything had been physical. Simultaneously, I began to have difficulty breathing and the doctors said that they were moving me to ICU to be intubated. I cried and screamed for Rida, and my mother not to allow that because I felt like it would end my fight. They did what they could, however the doctor was very aggressive and said she was going to do what she had to do to save my life, and that there was no way I could live if I could not breathe. I was into my fourth day of plasmapheresis treatment; and the nurse explained to the doctor that I improved after each treatment. He asked her to allow him to treat me and see what the outcome would be after treatment. She agreed, but made sure it was clear that if things did not improve I would be intubated without question. Thank God, He turned things around immediately, my breathing was better afterwards, and we received confirmation that I was going to be ok. I stayed in ICU for a couple of days for observation through the final plasmapheresis treatment and went to a step down unit when the treatment was complete. Physical and occupational therapy were both ordered, however I was not responding well so the doctors ordered the Rituxan a form of chemotherapy to try and turn things around. After my body continued to reject, and have no signs of recovery, I was released to the rehabilitation center where I recovered the first time. At the rehab center I was a familiar face and, I felt fortunate to be back where the nurses and therapists knew me and was somewhat familiar with Neuromylitis Optica. Unfortunately I was not assigned to the same therapist, and that contributed to the quick negative response the therapists reported to the insurance. The insurance decided that I was not recovering in the allotted time so they could not continue paying for therapy. The rehab center is in my opinion where the turnaround happens. However if there is no optimism on the therapist part that a turnaround is possible than no matter how much hope the patient has the writing is on the wall and it is a matter of time (in my case 12 days to be exact) before the insurance sides with the therapist and begins the transition. I was told to call in my family that the team had made a decision for me to be released. I said where to and the social worker told me I could be released to go home where I would need a caregiver 24 hours a day. She continued and said that my family could decide for me to go somewhere else of their choice. At the time I was being lifted up by the nurses, and med techs with a Hoyer lift. She assured us we did not have anything to worry about, because they could make arrangements to have a Hoyer lift for me at home to make it easier on the caregiver. They had also made arrangements for me to have a remote controlled wheelchair since I could only use a couple of fingers due to weakness in my hands. I could see Joshua and my mother’s face it was as unacceptable to them as it was to me, at the time we did not know what to do or where to turn but we were all in agreement we could not accept their solution. The following day I made several calls, one of them to the VAMC in Fayetteville, spoke to my PCP and he talked with the Chief of Social Work Service. The team had decided to discharge me within the next two days. Social Work Service called Joshua to go visit two Nursing Facilities with rehab centers. He decided on one that was approximately ten minutes from my home. Needless to say driving up to the Nursing Facility was one of the saddest days of my life, but after some time the sadness faded. I was good at knowing when a crisis was starting, and was told at the first sign to make a nurse aware of it because much of what happened next was determined by quick treatment. I was hesitant because I did not want to be going through another crisis but the symptoms could not be ignored, and before I knew it I was headed back to Little Rock for the third time. While being transported I was in the company of what I now know to be another Angel God put in my pathway. He told me about a rehab center within the area after hearing how the rehab center in Little Rock wrote me off the last time I was there. He recommended this rehab because he did some training there. I went through the plasmapheresis, and chemotherapy treatment. I was released to Health South Rehabilitation Center, the center the first responder told me about where I was given every opportunity to recover and I did. They admitted me on a Sunday afternoon, and that was an indication to me that things were going to be different. Pauline, and company reassured me that they would make sure that I would function to the best of my ability before I left, and they kept their promise. I was assigned to a Doctor (Dr. Bo) whose faith was deliberate, and he allowed the Spirit of God to direct him to take good medical care of me. From the beginning he told me he was not familiar with Devics Disease so he was going to have to rely on the Neurologist from Little Rock, but he was very confident in the therapy team and he was going to take their advice when it came down to getting me back on my feet, things worked out for my good, and Almighty God received Glory and Honor. I got there at the beginning of August unable to do much, and released October 10, able to care for myself while Joshua went to work and Dee went to school. Home health again assigned me to a nurse and I also had physical and occupational therapy again. I continued to improve and was released from the home health agency, able to drive myself to a therapy center to continue therapy. It was at this time I begin digging deeper for treatment options for Neuromylitis Optica. I welcomed the opportunity to participate in a Clinical Medical trial using Stem Cell Transplant as a treatment option. I had not been aware of any trials but I know God lead me to the web site detailing this clinical trial. I read the information on February 8, 2012 and received a response to my request for more information on February 10, 2012. Today is May 18, 2013; I had a stem cell transplant for Neuromylitis Optica also known as Devics Disease February 27, 2013. There were many obstacle along the way and I have a long way to go to recover, but I am grateful for all the things that the Lord has allowed us to come through. I am so encouraged that my trial has strengthened my family and I, and hope that it encourage and inspire you to press your way through the storms of life. God will never leave or forsake you, He will never allow anything that you are not capable of bearing. You will find discover strength to endure as you go through that you were unaware you had.

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