- Diseases, Disorders & Conditions
CIDP Be GONE
I have written before about my diagnosis with CIDP back in January 2013 after dealing with symptoms of numbness and tingling in my feet, weakness in my legs, tripping and falling etc etc. I followed up with another blog on whether to do HSCT or not. I decided to go through it. What is HSCT? Hematopoietic Stem Cell Transplant, using my own stem cells. How this procedure became available for Autoimmune patients is amazing and it starts with one, also amazing, doctor in Chicago, Dr. Richard K. Burt, Chief, Division of Immunotherapy at Northwestern Memorial in Chicago. Here is a link to read up more on him.
This man is my HERO. He saved my life. HSCT was the best decision I have ever made. Is it for everyone? Absolutely not. It's not for the weak minded or weak of heart. My journey with HSCT started shortly after I was diagnosed with CIDP. I was on Facebook joining all the support groups I could find, because to be honest with you, when you are diagnosed with these autoimmune diseases, it's terrifying. All the research I found led me to believe i would end up in a wheelchair eventually. Of course, that doesn't happen to everyone, but it can happen. While on facebook one day, another CIDP patient mentioned SCT. I had no clue what that meant. I read that she was no longer on any medications or treatments and her symptoms, most of them, had reversed. This sounded hopeful and i had to hear more about it so, I sent her a private message. This opened up a whole new world to me. I read her blog, I joined the HSCT group on facebook and I read everyone's comments that had been through it. I asked questions and did my research. For awhile, I scared myself out of the idea because chemo was involved. Who wants to lose their hair right? Or throw up? I know I didn't. Then, one day I had several falls and my legs were just getting weaker and weaker and my life was miserable and I knew I did not want to live with this disease forever so, i sent that person another message and asked her if she would go through the transplant all over again if her disease was to ever come back and she said ABSOLUTELY. I realized then that chemo couldn't be that bad if she was willing to suffer through it again so, I sent my info off to Dr. Burt. First, let me tell you, CHEMO SUCKED, but I would do it again and this is why. Before my tranplant, my fingers were starting to curl in, my hands were so weak that I couldn't zip my jeans, ties my shoes, turn the key in the ignition of my car, zip my boots, fix my hair, put on makeup, my legs were getting weaker and weaker, I was falling more, I was ALWAYS tired and napping, I wanted to die. Did you hear me. I WANTED TO DIE. I begged and pleaded with God to just take my life. He wouldn't listen to me and that just made me more and more mad. I would scream and yell at him and cuss him out. I hated him with all I had, but in the same breath I loved him too. That's a hard one to explain, but anyone with faith would hopefully understand that one. God had other plans for me, but at the time, I did not know this.
I heard back from Dr. Burts office about a month after I submitted my paperwork. They wanted me to come to Chicago for evaluation to see if I was a candidate for this transplant. Dr. Burt sat right there and looked me in the eyes and said, "Stacey, nobody has ever died from this, but eventually someone will and you could be that person." okay, where do I sign up because I would rather die trying than to live with this disease for the rest of my life. After the evaluation, going back for pre-testing and being accepted, I heard from my insurance company letting me know they would pay for it. That was the best news ever and I was so so grateful. I remember that day like it was yesterday. December 6, 2016, I received a call from Aetna, the nurse over my case told me, "We are approving your transplant and paying for it." After hearing my news, I hung up, cried, screamed and praised God for this chance. I was finally beginning to see a light at the end of the tunnel. About a month later, reality set in and I remembered those words Dr. Burt told me about the possibility of dying. I was scared, but knew I couldn't turn back now. I was finally given this opportunity to be rid of this beast and I couldn't turn back. Dealing with an autoimmune disease can affect you in more ways than you realize, depression being one of them. Depression, mood swings, anxiety, confusion, you name it. It is devastating to not know where your life is headed. I sat on the couch that day and found my faith, and my relationship with God was that much stronger. I finally decided that all the worry and stress I was dealing with was not going to get me any better, if anything, it would just make things worse as stress can be a huge factor in causing these diseases. I gave it up to God, as a friend once suggested to me many years ago over something completely different. That day, a huge weight had been lifted off my shoulders and I never worried another moment after that. That February, 2014, I was on my way back to Chicago to start the first round of the transplant. This consists of one night in the hospital to receive a chemo treatment. The chemo of choice was Cytoxan, a.k.a. Cyclophosphamide. I felt so lost in that hospital room. I didn't know what to expect, I was pretty much alone, even though I had my mom and daughter there to visit, they didn't understand the thoughts going through my head, they didn't know what I was going through as the patient. I slept through most of the treatment and woke up, at some point, still in my clothes, lights off, tv off, all alone. I rolled over and went back to sleep. The next day, I was released and sent back to the hotel. I felt great, you would never have known I just had chemo. Five days after the treatment I had to give myself injections of Filgrastim, us patients called it Neupogen. This is a drug to help stimulate Bone Marrow, aka Stem Cells, to come out of your bones in mass production. Little baby stem cells that have no memory of your autoimmune disease. This is great, the patient does 6 days of those shots before having those baby stem cells harvested and stored for later use, except on day four, the bone pain set in. I had heard talk about this happening to others, but had no idea the extent of the pain these patients went through until I experienced it myself. You could say it is a close relation to being beaten with a baseball bat. That first night of the bone pain, I had gotten up out of bed in the middle of the night to grab some pain meds and I passed out and fell straight to the floor. When I came to, I crawled back to bed and woke my fiance up to get the meds for me. I decided the neupogen shots were going to win this fight. On day 6, I took my shots and headed to the hospital to have those babies harvested. Two million was the goal, they estimated I would get right at that amount. This process takes about four hours, but your're there all day due to blood work, prepping and then waiting forever for the stem cells to be counted. You have a needle stuck in your neck where they take out the stem cells and you can't get up and leave the room at all because you cannot be unhooked from the machine until the process is done. Once they counted my stem cells, they came back and let me know they had collected 5.5 Million. They removed the catheter from my neck and sent me on my way. I was able to fly home after that and spent the next 10 days relaxing and wondering how the rest of this journey was going to unfold. They day after I got home from harvesting the stem cells, my hair fell out. I remember standing in front of the mirror looking back at myself, sick to my stomach because I was losing my hair. I couldn't fix it because it just kept coming out. I pulled it and went about my day. That evening, I grabbed the clippers and took them to my fiance and told him I was giving him the honors to shave it off. We did have fun with it, you have to make light of something so crushing. With women, our hair is a symbol of femininity and mine was leaving me. Once we had it all buzzed off, we moved to the bathroom to shave it with a razor. I was completely bald and it felt weird. I did not recognize that woman staring back at me in the mirror, but the funny thing about it, I felt FREE. I felt EMPOWERED. This bald thing wasn't so bad afterall. It took some getting used to, but I loved it.
Those 10 days flew by pretty quickly. It was time to fly back to Chicago to finish this procedure and move on with my life. I was checked into the hospital for my 2 1/2 week stay and by that afternoon I was hooked back up to the chemo again, only this time, it was Rituxan. About an hour into it, I felt my throat was scratchy and burning. Almost like the feeling of strep throat. Soon after, I was feeling hot, clammy, my heart was racing a tad bit and I started to sound like Kermit the Frog. I told the nurse how I was feeling and she went to call the doctor. A few minutes later she came back and said she was unhooking the chemo and I would not be receiving anymore of that particular one because I was having an allergic reaction to it. Within 30 minutes, I felt so much better. The next 4 days I was put back on Cytoxan and rATG, thats short for Rabbit Antithymocyte Globulin. There were also heavy doses of steroids and fluids, I blew up like a marshmallow, my body was holding onto all the fluids being injected in my body. After 4 days of chemo, I felt like death. Someone once asked me what it was like going through chemo, the only way I can describe it is a severe case of lethargy, or maybe the flu without the muscle aches. I had no appetite at all, I was sensitive to light, and I didn't want to be bothered. All I wanted to do was sleep.
Finally, the day came to get my stem cells back, all 5.5 million of them. They call this your new birthday because it is the birth of your new immune system. This day was March 5, 2014. You would think this would be a huge event, and in hindsight it is, but in reality, it was pretty uneventful. It took a whole 15 to 20 minutes for the process to happen. I remember them asking me if I wanted my stem cells blessed. Of course I did, I wanted all the help I could get to regain a healthy immune system. That was a very emotional moment for me. To sit there and have someone pray over my stem cells, asking for them to bring me good health. Someone was listening because that's exactly what happened. The rest of the time in the hospital was pretty uneventful. Blood transfusions, platelet transfusions, high blood pressure, trouble breathing, late night chest x-rays and EKG's due to my inability to breathe while laying down, wait, did I say it was uneventful? Ok, I was wrong. The chemo, or the steroids, caused weird dreams when you could sleep and lots of sleepless nights. Finally, May 15th, I was free and able to leave. The only thing I had on my mind was going straight to the hospital and going to bed. I couldn't wear shoes because my feet were so swollen that nothing would fit so, I left in my socks. I felt so embarrassed, but I didn't care, just lead me to my bed. Once I got to my hotel room I crashed for about 4 hours of the best sleep ever. That night, my best friend came to take care of me and see me home, but home wouldn't see me for a few more days. I wanted to stay in Chicago just case there were any complications. May 19th, I flew home to sleep in my own bed and see my animals. Like Dorothy said in the Wizard of Oz, "There's no place like home."
Once I was home, I felt so lost. What now? You just kind of lay around and wait, you wait for your immune system to build itself back up and for you to gain strength. I was more weak after the transplant than I was before going in. I had more trouble walking, not being able to step up on curbs when I had to go and pick up my medications, I needed someone to hold me and guide me when walking. I spent more time at home alone and sleeping. Two weeks after coming home, I was taken to the emergency room with a fever of 103. That was the last place I wanted to be and they decided to keep me overnight. Well, that turned into 4 nights in the hospital. They never found out what was going on, I had to undergo more blood transfusions and more platelets. I was neutropenic and in isolation. Life was so lonely. My fiance would come to see me for a couple of hours in the evenings, but that was about it on the visitation.
Once I was released from the hospital the second time, I started feeling better, although my strength wasn't getting any better. I was beginning to wonder of the transplant even worked. I have since realized everyone goes through this feeling. We expect, or want, immediate results and I had to learn to have patience. After being back from Chicago for 6 weeks, I decided to go to physical therapy and occupational therapy. I knew I wouldn't get stronger or better without the help. It got to the point that I needed to start wearing leg braces. Well, actually foot orthotics, to help keep my feet from dropping. I had just survived a year or more not having to wear the AFO's and now, after the transplant, I was scolded by my local doctor to start wearing them on a regular basis to keep myself from tripping and falling. His reasoning, "After going through this life changing experience to get your health back, do you want to fall and end up needing a hip replacement?" Good point Dr, Shekarchi, I will start wearing them and I'm so glad I did. I could be wrong, but I think it helped my feet get back in the position they needed to be. Three months of wearing them and I was more stable and stronger. I took them off and never put them back on again. At this point, I could feel the effects the transplant had on me and I knew it had worked. By the time I was 6 months post transplant I was back on my bike, at 7 months post transplant I was able to run again. Slowly over time, everything was coming back and things were feeling like the old me again, the me that I was before CIDP took over. I was back at work at 4 months post transplant and I couldn't be happier.
Today, I am 3 years post transplant and recently got back from Chicago for my 3 year follow up evaluation and got the words I so longed to hear, "You're in remission." I sit here reflecting back on the journey I took, the risk of having HSCT knowing I could die from it and so many people say the risk isn't worth it to them. To me, the risk was definitely worth it because I no longer have CIDP. I am no longer on any medications or treatments and when people ask me if I would do all over again if my disease was to come back, my answer to them is "In a Heartbeat."
Is HSCT a cure for Autoimmune diseases? Maybe not, not any more than chemo is a cure for cancer, but for those of us who have gone through the procedure and had our disease halted, we would like to think we were cured. It was recently asked of me if the thought ever crosses my mind that the disease might come back, That thought crosses my mind every single day. I know it's a possibility and I am definitely not ready for it if it does, but in the meantime, I will live life as if it is my last day to live and I will love every moment of it.
To learn more about HSCT and CIDP: