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“For I know the plans I have for you”, declares the Lord, “Plans to prosper you and not to harm you, plans to give you hope and a future”. Jeremiah 29:11
They call it your Birthday – the day that you receive your Stem Cell Transplant. Although, I am turning 32 this November, I also have the esteem honor and privilege of getting to celebrate my 1st Birthday and the start of my new life – free from Antiphospholipid Antibody Syndrome and Lupus Anticoagulant disease. It’s a mouthful to say, but an even greater challenge to live with it.
My journey started 13 years ago, back in 2005 – I had just graduated High School and was ready to take on the world. One day I started to have this extreme pain in my calf and found myself in the ER with a DVT in my right leg. I was 18 at the time and I though how can this even happen?
It was a year later I found myself in the same boat – however,this was different, it was a throbbing pain in my arm and my fingers along with my hands started to become blue. This time I was found to have a DVT in my right arm. I recall strolling around the halls, joking about “breaking out” of the hospital with my friends – when it hit, it was like a ton of bricks slammed into my chest and knocked the wind right out of me, except for I couldn’t get the air back. The clot had broken off and traveled into my lungs, I was unable to support my breathing myself and a code blue was called, it was quickly identified this would be the first of many PE’s to come.
The course of treatment remained the same as there were not many treatment choices for clotting disorders not to mention Lupus – we had tried Lovenox and ended up having an adverse reaction and actually started clotting from the medication. We moved to coumadin but it seemed no matter how high my INR got – the clotting never stopped. It was then decided to add on Plavix and Aspirin in attempts to knock out different factors in the clotting cascade. We initiated Plaquenil in hopes to control my Lupus flair ups, which in turn exacerbated my Antiphospholipid Antibody Syndrome. However, one thing remained the same – my bodies inability to not stop itself from clotting. Since 2005 I have had 15 documented DVT’s, 6 documented Pulmonary Embolisms - 2 of which were large saddle emboli branching into both main pulmonary arteries that cascaded down into my left lower lobe, 1 ischemic stroke on the left side of the brain, 3 TIA’s, and 3 miscarriages. I have had surgery to implant and IVC Filter, PFO closure and eventually I was granted a power port for chemotherapy use.
During the past 13 years we have sought out many different options and opinions. My husband Jeremy, was willing to take me anywhere if it meant there was even the slightest chance we would find answers. We have forgone vacations our entire marriage, and replaced white sandy beaches - for sterile white walls and Hospital stays. We had traveled to Barnes Jewish Hospital in St. Louis, Missouri where they had recommended the use of Rituximab – a form of chemotherapy that would suppress and destroy my B-cells, the cells that were carrying these genetic mutations. To our dismay, our insurance refused to pay for these treatments- stating they were “experimental” and not available for off the label uses. The word “No” never stopped both Jeremy nor myself to continue to not only fight,but to find something or someone who could help us. We made multiple trips to The Mayo Clinic in Rochester, Minnesota. Where we were again sadly disappointed when we were toldover, and over, there were no other options besides running the Rituximab. Ultimately, there was a suggestion from Mayo Clinic that turned out lives upside down- they placed a hospice referral. Where we really here? Was this what it was going to come down too?
I remember coming home and just seeing a clear difference in how compassionate and caring the nurses were at Blessing Hospital in Quincy, IL – my hometown. I remember nurses praying with me, crying with me, making me laugh, and holding my hand tight when I was so scared at times when I felt like giving up or the end was near. I knew I had found my calling – I wanted to be that for someone else – be a rock when someone needed strength the most. I started working for Blessing Hospital in the fall of 2007 as an aide and eventually worked my way through Nursing School at Hannibal LaGrange University. Despite all my medical setbacks – I made it. It was in my Junior year of nursing school when I suffered my first stroke. I lost the function of my right side, along with temporary vision loss and was air lifted to Barnes Jewish Hospital in St. Louis, Missouri for a possible clot retrieval procedure. Some may say that this would be crushing news – enough to put your life on hold, or to forgo my dreams - my goals – but it didn’t. This stroke is what gave us the push we needed to get chemotherapy approved through insurance. That stroke changed my life for the better. It blew open doors and possibilities that we had been dreaming of for years, but we had just been bound and at the mercy of our insurance company.
During my hospital stays I refused to give up on my education – if there was something I was going to do, it was going to be ableto share my story and provide comfort to those in need; like the nurses before me had so graciously done. My classmates and teachers were amazing – recording their lectures, my friends and teachers came to the hospital to not only pay me a visit but to help me study and stay current with my classes. I graduated in 2016 and began working as a CVICU nurse, I recently just changed rolls and became a House Supervisor at Blessing.
It seemed the chemotherapy drug Rituximab was the answer – my body however, thought otherwise. That day I will never forget- I sat in a packed infusion room on the edge of my chair waiting my turn – so packed in fact there wasn’t even room for my family to sit with me, and I was alone. I could just feel the pit in my stomach drop as the nurse put on her blue plasticchemo gown and gloves, attached a pre-primed safety IV set to my IV – I thought I was going to be sick before it even began. My nurse knew right away something was wrong, she crouched down next to me and asked me if I was alright, I remember not even being able to talk to her, I knew my eyes were welling up with tears – I could only nod my head yes. She reassured me she had been doing this for many, many, years and she would take care of me. Most importantly, she asked me if she could pray for me, I will never forget her for that, she held me and prayed over me until I was calm, even amongst all the chaos in that tiny crowded room. I knew that’s who I wanted to be like – I wanted to be a nurse that made a difference to someone.
After my first infusion round we had just left the hospital and it is about a 30-minute drive back to our home town. My sister Heather drove me, we were over half way home when I turned to her and said I don’t feel well, I had broken out in hives and welts, my face was swollen and it was beginning to be hard to breath. Heather stayed calm the entire time, and got me to the nearest hospital to get help.
Despite what had happened, Rituximab was our only hope – andI wanted to run it again. This time we pre-medicated me in hopes to eliminate any reaction – however, our attempts were unsuccessful. I had an anaphylactic reaction just as it was finishing infusing, my face started to swell and the nurse called a code blue in order to secure my airway.
We took a break from Rituximab after that, strategizing a plan in order for me to be able to receive this drug, we sought out more information from multiple specialties to collaborate to assemble a protocol to desensitize me to Rituximab – and it worked, in fact it worked well for several years. I was admitted to the CVICU and would be placed on Nitro and Esmolol drips in order to control the chest pain and hypertension that now would accompany the Rituximab infusions. We did this every 3 months and I would be hospitalized anywhere from 2-4 weeks at a time.But as the years moved on, the side effects continued to get worse, and worse. I would just cry for days in the hospital or at home with such deep bone pain, my legs and joints just had this constant throbbing, that at times I couldn’t even bare my own weight on them, I was sleeping my life away, then the brain fog started to set in, and the simplest things that I had done for years were no longer so easy to remember.
However, I started clotting again, I began having issues with my heart and had collapsed several times. The PE’s in my lungs were now chronically there, or scared over with scar tissue. My symptoms were moving further away from the standard DVT and PE’s that my body had been accustomed to fighting and started morphing into more neurological and chronic issues. We implanted a loop recorder device in hopes to catch anything dysrhythmias that were now occurring.
We ran our last dose of Rituximab in April of 2018, I came into the ER with bi lateral PE’s, pneumonia, and sepsis – it was two days prior to my scheduled infusion date. We ended up infusing the Rituximab and I went into respitory distress, acute kidney injury, heart failure, pulmonary hypertension, and capillary leak syndrome. I spent 31 days in the hospital. 3 weeks of which were in the CVICU. I ended up with not only still fighting Antiphospholipid Antibody Syndrome and Lupus, but now it has damaged my kidney function to where I am in renal failure. It was time for a new plan. We consulted a second hematologist whom told us about a Stem Cell Transplant. Dr. Wesley and Dr. Jallad explained to Jeremy and I how this would “reboot” my entire immune system… and it would be like I had never been sick at all. It almost sounded too good to be true.
We went up to Northwestern University in Chicago and met with Dr. Burt who specializes with the Immunology Transplant Team. It turns out we are a candidate and were accepted into Dr. Burt’s Case Study! We will be in Chicago for 2 months, some of the time will be spent in the hospital in their MICU along with their Transplant floor. While a couple of weeks will be spent at a neighboring hotel, receiving outpatient transfusions, labs and chemotherapy. We aren’t allowed to go home due to the fact I am a high-risk patient. I will be entirely immunocompromised – Dr. Burt and his team said it is not only unrealistic, but unsafe to expect to return to work in the hospital right after the transfusion.
This is what we having been waiting and praying 13 years for – for a word that no one has ever used before – a Cure. It’s not just a band aide …. I will be a normal 30-year-old, Jeremy and I will have a normal life! The idea is just so surreal – this is something neither one of us ever thought would happen. “God has you in the palm of His hand. He sees what’s happening; he Hasn’t brought you this far to leave you. God is about to do something bigger than you’ve ever imagined”.
We need help to make it possible to get there, we are asking if our loved ones, friends, and families would help make this a reality and help get us to Chicago. We want to thank everyone from the bottom of our hearts for all the prayers and well wishes over the past 13 years, we wouldn’t be here without your continuous support – no amount of thank you’s will ever be enough to express how much this has meant to us. God Bless.
Jeremy and Sarah Campbell
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