Saturday, May 18, 2013
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.
Tuesday, April 30, 2013
In the meantime my symptoms worsen, some gradual, however most developed rather quickly. I recall having a crazy fall resulting in a broken foot. I couldn’t believe it, there was nothing to cause a fall (I understand it to be a balance issue now) yet the fall that left me walking around for more than eight weeks in a neon pink cast(my only other choice at the time was midnight black what a large assortment huh)along with other weird happenings was a mystery. We sat down with doctors again and again to come up with answers that would help us with a plan to no avail. As time went on I got to the point in which my legs began to feel like tree logs attached to my hips I convinced myself that I was tired or that I was having a flare up from a previous back injury (I’d enjoyed my birthday weekend with my daughters) in Nashville, TN appreciating Nae’s performance onstage in a musical. Nevertheless reality sunk in after doing all the things I’d grown accustomed to doing to relieve myself. I managed to continue with my routine as if things would resolve because I was ignoring what was happening, they didn’t. By that Wednesday, I ended up in my PCP’s office having extreme difficulty walking; he started steroid injections for the next five days. Things worsened, so I called my PCP’s office this time he said to go straight to the ER. He said he would call my Neurologist and have him see me. My Neurologist happened to be out of town, so the Neurologist on call saw me. He consulted with my PCP after seeing me, and told him that I was in a serious crisis, and needed to be moved to a larger hospital capable of treating me. It took several hours get things arranged, the Lord saw fit to encourage me, with visits, prayers, calls, and texts (I had no clue the hardship ahead) but I had a peace, that everything would be alright. During the time it took to make arrangements weakness now went from my waist down, not only was I unable to walk, but I had no trunk control now. As the two medics discussed the best way to get me from the hospital bed to the transport bed, I could see my husband out of the corner of my eyes shaking his head in disbelieve being console by a minister, and deacon. I motioned for him with my head to come where I was (I was unable to use my fingers to point). We made pathetic attempts to assure each other that everything would be alright, but the fact of the matter was no one knew what to expect. The medics decided to put me in a sheet and lift me onto the ambulance bed. We yelled goodbyes and I love you to each other as the medics rolled me out to the ambulance to be transported four hours away. It was so strange that I was concerned more about my family finding out what was happening with me, and the fact I was having to leave my then my eight year old and my husband than I was about my condition. That night the grace of God was so evident, before we took off the driver came over, and got right into my face and he said “I am going to be very careful with you we are in no hurry to get to the hospital. They have been notified and they are getting your bed ready as we travel, you lay back relax let me do all your thinking.” In the back of the ambulance more of the same grace flowed through the attending medic, he told me that he had preliminary paperwork to complete and then he wanted to know all about what was going on with me. He admitted that he had never heard of NMO but he looked it up on their way to pick me up, he wanted to know more. After he finished his paperwork we talked the remaining time about more than NMO, it was very clear that God had me on a divine assignment. The medic shared some very recent painful events that he was going through, I was urged to speak a word of hope to him the grace of God again was undeniably present. We prayed for each other, and he handed me off to the nurses awaiting our arrival at the hospital. The hospital was well prepared for me so processing went very quick. Before I could get settled into my room, one of the things I wanted to prevent happening, happened Rida (my sister) appeared from out of nowhere. As I was fusing with Rida about driving five hours away my older daughter walk in after working she drove five hours, shortly followed by my middle daughter. They were just as upset with me as I was with them because even though I’d talked to them I did not let them know what was going on. The doctor finally saw me, and the diagnosis was “exacerbation” he told us the plan for treatment. Somewhat confused we decided to settle down, get sleep and regroup the next day. Continued IV steroids, plasmapheresis, MRI and therapy was the plan over the next few weeks and we would have to wait to see the outcome. The MRI confirmed the NMO diagnosis the fact that there were lesions in my spine, and brain along with my symptoms made the comformation. The Neurologists were optimistic, but made us aware that the reality was that NMO is a rare, nasty, incurable disease. After a few days we all decided that it was best for everyone to go back to their world that I would be fine. Not long after everyone left the treatment was completed and I moved on to rehab, were I begin recovering well. I saw my eight year old and husband every weekend. I received lots of mail. Once I the mail carrier asked the nurses who I was(some kind of celebrity) because I had so much mail. After three months I was released to home healthcare. I was assigned a nurse, physical therapist, and occupational therapist. Before leaving the hospital I was assured that I would recover, but it would be a long process, and not to get discouraged. Everything I was told came true. It took some time but I slowly, but surely got better. However before I could fully recover by mid-July I’d had another exacerbation, this one more powerful than the first (I’ll pick up here next time).
Friday, April 5, 2013
(2 Cor. 1:20) NIV.
In a world of uncertainty, our trust is in a faithful God who will always keep His promises.
I continue to trust the promise of God that I am healed. Recovery from a transplant is not as easy as I thought it would be. I am thankful that I have been able to put one foot in front of the other day by day I am going to recover. I am very tired and have been feeling cold this past week. The transplant team assures me that my body is still making adjustments, and it is still early. I seem to feel better later in the day than when I first get up. I try hard to stay busy during the day, but am still having to take a nap at some time during the day. I am happy to answer phone calls, emails, and other means of communication.
I thought it would be a good idea to go back and detail all that has happened leading up to the transplant. According to my medical records I was seen at Boozmanhauf eye clinic for an unexplained optic neuritis in late 2002. After many examinations locally and Little Rock, it was determined that I needed IV steroids for the inflammation in my eye. I couldn’t see in my right eye when I went to the doctor to begin with, and that did not change even after the hospital stay. A week later I was examined by a Neurologist who diagnosed me with MS, scheduled me for a series of test, but said that the treatment for MS is to treat the symptoms as they come up. At that particular time the only problem I was having was the optic neuritis. MRI, lumbar puncture, nerve conduction studies all pointed towards MS. There is not a specific test to confirm MS all other diseases are ruled out and then MS becomes the diagnosis, based on the symptoms. By this time I had begun having some weird symptoms for example my feet were numb, I was unable to grip anything with my hands, and I felt like there was a band around my waist all the time, it was very uncomfortable. Another Neurologist saw me and said he was aware of a specific test for NMO, that he thought I should have because of the symptoms, and because more symptoms were coming up even with the medication he’d prescribed for me. The test was positive for Neuromylitis Optica, (NMO) aka Devics Disease, the doctor told me that this was a very rare disease and that he could not tell me a prognosis, that we would wait to see what course the disease would take.
I did some research and found very little information on NMO. I remember thinking to myself there is no way I am the only one with this disease, I need to find somebody else who has NMO to talk to. I prayed and asked the Lord to lead and guide me to help myself, I really felt like the doctor did what he thought he could do and the disease would run its course. Every time a different symptom came up I found myself really searching for help and answers. The Mayo Clinic had little information, about treatments, however they did offer suggestions once the disease progress to a certain point. I prayed and asked God again to direct me because I did not want to get to the point that the Mayo Clinic described to me. For, a couple of years things seemed to stay the quiet, and God gave me strength to manage the symptoms I had been having. (I will pick up here next time).
Monday, April 1, 2013
I’ve been home now from Chicago for three weeks now, after undergoing a stem cell transplant on February 27, a month ago. I will admit that this is a process that is going to take time to get a routine rhythm going. My family has covered me as long as they could and now with the help of the Lord I am doing it. God bless Rida, Kitty, and Mother who put their lives on hold to be sure I could live the best life possible during this transition. Joshua and Dee unfortunately don’t get off that easy they still have to deal with me daily, they don’t seem to mind that much as long as I am home.
So much emphasis on infection and safety until there is very little time for me to blog. I felt like I needed to catch things up so that I don’t feel so overwhelmed when I have the opportunity to blog. As far as infection goes my orders are to stay away from clinics, hospitals, day care centers, and any other public places where people could be sick. I cannot be around anyone that is aware that they are ill, or has been ill. If out in public I wear gloves for my protection, I am not allowed to hug/kiss until my immune system is built up again, so hard because I am a people person, and I work hard at loving people and hugs are a part of my love language (on hold for a little). I am allowed to go out in public now, however not at peak times when there may be large crowds (Easter service yesterday an exception). I have been encouraged to slowly get back to what a normal routine is for me. The safety issue is as serious as the infection issue is because of the fragile, weakened state the chemotherapy and the transplant left my body in. It is a welcomed everyday chore to get up and get myself ready for the day whatever that day holds. I have found that every day is different than the one before, and I have to take each day for what it is worth. The first week I was home it was all I could do was get used to being home again it seemed like everything was so foreign, my bed was the first wake-up call, I was used to using the rails on the hospital beds to turn from side to side, no rails on my bed here at home slowly, I’ve made some adjustments and am doing fine at home now. The second week I spent figuring out medication, and reporting my B/P, and P to my doctors who were trying to regulate the medications. This past week, I’ve noticed I get tired very easily, so I take frequent rest breaks. What is good about the breaks is that I recover quickly. I have pinpointed the areas that I need work and what I’ve found is my overall body is weak and so I am starting with strengthening my core. I have been evaluated for o/t and p/t but I know that there is only so much they can do the rest of how well I recover will be determined by what I do.
My overall goal remains the same, to get back on my feet, bring awareness about this disease, and finally set up a foundation in which anyone that needs a particular treatment, and does not have the means there will be means to help them. While going through my process I also hope that my experience will help another person dealing with Devic’s Disease experience a little easier. I hope to encourage, and inspire others to remain hopeful and to keep searching until there is a cure.
The only way the FDA will approved this and other treatments for Neuromylitis Optica (NMO) aka Devics Disease is if those with the disease are allowed to take part in the research efforts.
Saturday, March 16, 2013
So the plan to be discharged Friday was in our favor, my white count was up and everything else was going along as planned. After the usual morning hospital routine, I told my sister I didn’t feel well. She came over felt my head and said you may have a temp, she put the nurse light on and my temperature was 101.6, from there it went as high as 103.6, there was no way I was going anywhere, until the fever subsided
My girls have all had a fever at one time or another and you know they are punie looking, whiney, and you just know they do not feel well. You do you all can to make it better but fevers do their own thing. I do not believe I have had a fever that I can recall that made me feel so bad for three days. They cultured everything they could, however they were unable to find a source for the fever.We watched online church service, and prayed to All Mighty God that the fever would go away and stay away so we could come home. God is so faithful; I do not know how people make it without Jesus Acts 17:28 declares that it is in Him we move, in Him we live, in Him we have our being, I cannot, don’t want to do anything without Him.
Dr. Burt released us Monday we came home Tuesday PTL. The recovery will be long and sometimes difficult, but I got a beautiful card that will serve as my reminder …recovery is a process. It takes time. It takes patience. It takes everything you’ve got and more to get through the process but you will get through.
From start to finish the Lord’s hand has been on this transplant. From not knowing if I was a candidate, to not having insurance coverage because this has not been FDA approved, each, every obstacle that came up the Lord made provision.
I’d like to say that because of God’s provision this was a piece of cake, it was not there were some very cloudy days and sleepless nights but I am so glad that I was able to remind myself that Jesus has already bore my sickness and disease, and by His stripes I am healed. I know that there is purpose for my life and there are those hopeless, helpless ones living with this disease that do not know about a transplant, and if they did they would not have the resources to have the transplant. From the transplant team point of view without enough of data from actual transplants then there would not be a FDA approval. As I am recovering join me in prayer for God’s direction to be the voice that cry out for Devic’s Disease and other rare Autoimmune Diseases.