Darlene’s Story

Site created on June 27, 2019

Up until the past few years I was a vibrant Mom, grandmother and ER Nurse. I had been diagnosed with Lupus in 1989 shortly after graduating nursing school and starting my first job. My diagnosis only came after I was told it was 99% sure I had disseminated lymphoma. I was in my 20's and terrified.  I didnt want to die.  I was eventually diagnosed with Lupus after developing multi organ involvement.  I was however,  hopeful and sure I could live with this. It was surely better than lymphoma, a diagnosis that had crushed my Mother's heart.  After a few months of being fairly ill with my first flare up of Lupus I did fairly well. I would have what I called grumbling disease but I could handle it. I always pushed forward. After all isn't that what strong people do? I now know I choose denial when faced with my diagnosis.  I didnt want to be a victim. Fast forward all these years later and I now know all the while the autoimmune disease was slowly laying down serious injury to my organs from vasculitis and inflammation.  Denial had been a poor choice. One I would regret.  After perforating my bowel in 2011 it was discovered I had vasculitis and acute on chronic inflammation throughout my retroperitneum and bowel. My mesentery and omentum were solid sheaths of fibrosis tissue. Yet no one made the connection even then that this was Lupus. I recovered and went back to my busy, stress filled life of being an emergency nurse, running my own medical- legal business and raising my awesome son. My husband had left us only months prior. My son was my rock and source of a reason to hurry up and get well after the surgery.  In 2013 just after starting a new job I developed double vision. MRI showed lesions in my brain. What? How had those gotten there and when and what was it? Well, those answers would not be answered for 5 more years. You guessed it, it was again Lupus. But first I would be diagnosed with multiple sclerosis.   In 2015 I started recognizing my brain just wasn't working right. It was like I had trouble turning my brain on. Complex tasks became more difficult to carry out in a rapid, organized fashion like I had always been able to. I would forget things, search for words, and just wasnt as quick as I always had been. I went to see Neuro and based on now worsening lesions and a positive lumbar puncture the diagnosis of MS was made. I was relieved. There were great new medications that treated MS and I had insurance so I could get them for a low co-pay. Great, no worries. I forged forward. Then i got worse. Had a seizure and was so weak and fatigued all the time. My job was less than understanding and despite intermittent FMLA i soon lost my job. It was the first time in 31 years i had not worked and did not have medical insurance.  Life got very tough.   My son took over and was soon within 2 yrs, paying to support his Mom. It had not taken long to exhaust my savings.  It was now 2018 and I was in horrible pain, loosing the strength in my legs and arms, having difficulty speaking and spent most days in bed. I considered suicide but would never do that to my son. I was finally broke enough to qualify for the free county, medical care program. The program was through the University Hospital System I had worked for over twenty years. My best job and proudest experience at a Level I, academic center. I knew the excellence of the faculty Physcians I would be seeing and was hopeful.  Finally, treatment and maybe I could get well again. The problem is the program serves so many in need patients that it is overwhelmed and very slow moving no matter how sick you are.  I did get a repeat MRI and was now discovered to have lesions throughout the white matter of my brain and spinal cord. I also had a lesion on my brainstem that was not consistent with MS instead it was consistent with Lupus vasculitis.  I had just joined the less than 20 known cases of having both Lupus and MS and I was deteriorating. University was not willing to start medication as the medication for Lupus would worsen the MS. They wanted me to be seen by the once monthly visiting Neuroimmunologist. Problem was someone made a scheduling error and I missed her once monthly visit. By the time i could get another appointment my Care Link would be expired and i was no longer qualified because i had started receiving disability. I have to admit God had been unbelievably good. I had recieved SSDI in record time. The Lord provided through these long months.  Now I was once again without medical coverage. I had been restarted on Plaquenil that helped a little. But I still had the awful intense burning, prickly feeling under my skin anytime I showered or dressed, weak extremities, joint pain, migraine and more. I was able to have about two productive days a week after which I would be unable to get out of bed for two days. God was graciously still providing legal work so I had work to keep my brain active and engaged. Everything I had learned after 31 years as a nurse was still inside my head, thank God.  Then I started researching mesenchymal stem cell transplant.  I read all the peer reviewed literature,  listened to expert conferences and learned the procedure showed remarkable hope for both Lupus and MS patients.  In Europe and England it is widely used as a nearly curative treatment regime. Here in the US it has marginal FDA approval and though supported by both the MS and Lupus societies it remains only available at a few major centers and otherwise at private very expensive clinics. I knew however, I wanted this procedure. Really it was my only hope. Otherwise I would likely not live much longer.  I currently am trying to raise the funds through Go Fund Me to get one treatment.  I am faithful God will provide.  I will get there. I will get well and make it to the Cher concert in December with my friends.  Until then I will Journal my progress towards this goal and God's goodness. 

Newest Update

Journal entry by Darlene Nelson

This is my first journal post as I start this journey of facing the reality of my illness and finding healing. I was laying here, in pain, weak and feeling as if my respiratory muscles just dont want to work. I was however,  thinking of some amazing medical miracles in my life. I want to start my journal with those wonderful stories of God's awesome power.

The first miracle was in 1989. I was admitted for a open lymph node biopsy. I had developed a huge, golf ball sized node under my right arm. I had nodes above and below my diaphragm,  night sweats, rigors, weight loss, and an enlarged liver and spleen. The presumptive diagnosis was disseminated lymphoma. 

While I was undergoing surgery my Dear Mother prayed without ceasing in the waiting room. She walked the floor rebuking cancer and claiming they would not find evidence of the dreaded disease. After the surgery the surgeon came in to talk with my Mom. What he had to tell her confirmed to her prayers answered. 

The surgeon told her he had felt the node before opening me. It had been so large it was adherent to underlying muscle. Yet when he made the incision he could find only a normal lymph node. No mass, no swelling, normal. 

The biopsy turned out negative. I believe I was healed of something that day. Though I would go on to be diagnosed with Lupus that was a prayer answered. 

The second miracle involves the birth of my precious son. I had not been putting on weight and my son not growing well. After a particularly stressful, and upsetting few days I went to my OB appointment with the nurses favorite, great OB Doc, Dr. Zenakis. I had not slept for two days and was apparently a little disoriented because Dr. Zenakis herself came to the waiting room to ask me what was wrong. My appointment was not scheduled for that day. She decided to see me anyway because she said "you dont look good."  
The sonogram revealed an emergency placing my son's life in danger. I had lost almost all the amniotic fluid. She quickly admitted me to the hospital where at only 35 weeks gestation I underwent an emergent C section. My son was born not breathing, and required brief CPR. I remember hearing them saying "his heart rate is 40, start compressions". I turned my head and prayed to God " No Lord, not my son. I claim he shall live." And he did.
Had he not been delivered right when he was he would have died intrauterine. As it was he was only 4 pounds but would come home after only 4 days in the NICU. He is now a 25 year old, 6 foot, healthy, awesome young man. Praise God. 

The third involves the again saving of my son's life. My boy was only 18 months. He had fever above 105, and a reddish blue rash. His feet and hands were swollen, and he had red lips and eyes. I took him to the ER and he was diagnosed with scarlet fever and given penicillin.  The next day however, he was barely conscious,  swollen with a much worse rash. I decided to take him to his pediatrician who was the best pediatric doctor I had ever worked with. He immediately. suspected Kawasaki's disease and had us admitted to the hospital I worked at, University Hospital. Labs confirmed the diagnosis.  Dr. Roger's from pedi cardiology met us on the pedi floor. He took one look at my boy and said "that's textbook Kawasaki's."  He told me after one bag of immunglobin intravenous my boy should turn around like flicking a switch.
Well the immune globulin finished infusing over hours and still no change. My son still lay in my  arms lifeless. He was now in renal failure with fever of 106.7. We administered a second liter of immunglobin while I prayed and prayed. And this time he woke up, fever down and for the first time in 24 hrs spoke and took fluids. He went home a few days later. 

My forth story is about me. I had developed abdominal pain while at work. I finished my shift and even when in and worked the next night. I had been having episodic abdominal pain for years and always toughed it out. By the third day I knew I has an acute abdomen.  I went to see my PCP who told me to go home and take Metamucil. I did go home but something told me to skip the metamucil. By morning I was worse. I called my Gynecologist, Dr. Vincenzo Sabella. I had worked with Dr. Sabella at University Hospital for years. He had been the Director of Ob/Gyn and was a phenomenal surgeon. I knew I needed a surgeon and I knew he would help.   He did a sono and saw a pelvic abscess. He cleared his schedule and booked me for surgery two days later after a CT scan and prep.
That night the nurse in me knew I was developing sepsis. I went to where I now worked in the ER. I told them about Dr. Sabella planning to do surgery. They called him though he was staff at another facility.  Just as I was being taken upstairs to a bed for a possible ruptured appendix with 2 abscesses,  Dr. Sabella arrived. He looked at the CT result and decided I needed to go to the OR now. He called Dr. John Metersky who had been our trauma Chief at University.  They both met me in my room. No OR was immediately available where we were at so Dr. Sabella and Metersky had me transferred to the sister hospital where they had privileges. I was in the OR within an hour. 
I had perforated my bowel and had a septic pelvis. My appendix was intact. I had fibrous tissue throughout my pelvic cavity.  Whatever this was it was bad and had been there developing for years. I underwent the removal of my distal ileum and cecum and an anastomosis.  Surgery took four hours and was beyond complicated. Later, Dr. Metersky told me once he had me wide open he looked up at Sabella with tears in his eyes and said "I have never seen such a mess. I'm suppose to be the general surgeon and I have no idea where to start." Dr. Sabella replied "well we cant close her like this. Let's dive in or else she will kill us."  They both knew me well. 
That day my life was saved by two surgeons who went above and beyond. The compassionately cared for me throughout my 10 day hospital recovery. God had come through again. And I'm believing he will again now!!  
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