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  • Christine Maynard medical history:

    History of MVA with crushing injuries, and flares (swelling, abdominal distention, difficulty breathing, and pain…which resolve, sometimes with fluid exiting orifices: vagina, navel or rectum.) When I was opened up the night of wreck, surgeons noted massive adhesions. I had no blunt trauma or abdominal surgery previously. A clue, perhaps, to the etiology of illness.
    Allergies: allergic to morphine and morphine derivatives. Also, spironolactone.

    General History: Well-nourished/obese female, multigravida, with three pregnancies full term and deliveries uneventful (midwives.) Three living sons, and three grandsons in Austin, Texas. Father died of congestive heart failure, 76. Mother died of Alzheimer’s at 90. Great niece with age 14 onset of rhabdomyolysis and kidney issues; genetic research underway. Cousin died of angioedema- weird swelling, inability to breathe (in 1950 at 26.) Cousin died of MS. Grandmother died of ascending paralysis during flu pandemic 1918, in Dallas, Tx. One son diagnosed with Crohn’s in Army but no further flares.

    Ms. Maynard has an extensive surgical history, most of it from 2000, following an MVA. A liver surgeon attempted to repair liver tears - three surgeries in five days- as he reported that it was in pieces, and artery partially torn. Ms. Maynard had an intramedullary rod placement in r. femur, a plated l. trochanter (later removed,) r. foot muscle and nerve repair, and non- removable Greenfield filter placement (removed 14 years later by Dr. Kuo at Stanford , due to complete occlusion of inf. vena cava, and bent legs sticking into spinal nerve bundles and intestines.) This was the result of an MVA where she was thrown from the crushed roof of a vehicle travelling at high speed, which rolled eight times. Her husband fell asleep at the wheel. She coded numerous times and was on life support for 23 days in a medically induced coma, employing Propofol.
    She also suffered a closed head injury, numerous lacerations to scalp, back, neck and limbs. Scapulas broken and three broken ribs. Bladder and other organs shifted slightly to right. R. fallopian tube and r. ureter entwined. She contracted numerous opportunistic infections, pseudomonas, xanthamonas, c. difficle, e. faecilis, et al. She re-habbed herself. Her r. quad’s ability to fire was at first questionable, but she was running and working, with much travel, within five months and appeared to have a full recovery, until 2003. She was uninsurable in America due to Greenfield filter, until receiving disability in 2010.

    2002 Orthopedic surgeon removed l. trochanter plate at patient’s request, and discovered IT band had never been sewn closed in surgery, and muscle underneath had herniated through and attached to skin, and that was the reason for patient’s pain and deformity of muscle. *Apparently, they got out quickly, as I was coding. This learning curve for me, personally, helped me pursue that my liver might not have been repaired optimally, either.

    Partial hysterectomy Nov. ’06. Supracervical. R. ovary and fallopian tube removed along with uterus. Lysis of adhesions. Periods continued . R. ovary regenerated ; was read on scan as highly loculated tumor. Surgery. Also removed appendix. Path revealed ovarian remnants and blood clots . HC 125 remained elevated post surgeries, at 80. *Surgeon said the worst adhesions she had ever encountered and sent me to infectious disease doc, Dr. Raymond Coglin, b/c she had read massive adhesions were present when I was first opened up, post MVA, and she felt there was some underlying undiscovered causative agent.

    Dr. Coglin stated that massive adhesions were, generally, due either to radiation, severe sexual abuse or an infection he’d checked me for, which I didn’t have an antibody against. He then felt certain my problems were in the porphyria family, test results negative, then diagnosed me with Whipple’s based on photos of Barrett’s ring like spotty esophagus, from endoscopy, but path didn’t support that)

    *I had a surgery at Presbyterian when I was 22, cone biopsy (maybe punch) of cervix following Class 4 severe dysplasia after cervical cyst was frozen and came back “worse.”

    In 2010, exploratory surgery was undertaken at Ochsner Hospital by Dr. Louis Jeansonne, IV, and a team of surgeons. They discovered that when patient was left open for 11 days and underwent 3 attempts to repair liver and stop bleeding (over 100 units of blood products) that she had, apparently, been given up on and closed up when she developed full blown ARDS, and the liver was not connected to duodenum, or able to drain properly. The liver had been draining through bilomas and this was thought to be the etiology of the flares. Surgeons noted bony ossifications in liver and elsewhere around intestines, as well as fistulas which explained the fluid coming out of navel and vagina every 3-4 months. Fallopian tube very enlarged during these periods of fluid being shunted out of body. 3.3 cm circumference or diameter? from us.

    Lysis of adhesions was undertaken and intestines were cut, accidentally, and repaired. Gall bladder removed- had been dead for a while. Lots of “empty spaces” and pockets of infection noted and cleaned up. 7 hours, 4 surgeons. They said they only worked on the top half of abdomen, and more work needed to be done, but they needed to come out.
    In 2011, Ms. Maynard contracted Hep B sexually, from her partner, and developed fulminant liver. She was in ICU at Tulane, under the care of the Abdominal Transplant Team, who were anxious to look at her liver upon her full recovery from Hep B. Her ALT and AST were upper range 2000’s. Bili 13. INR never went over 1.4. She was given IV fluids and blood thinners and vitamin K. Diastolic as low as 28. Full recovery. *I have antibodies to Hep B and a zero viral load. I had contracted a rare type of Hep Be (little e) found in pigs in n. Korea and I had Hep E but not the Hep Delta they thought I might have, since I’d gotten so sick so rapidly, which is symbiotic with Hep B.

    Liver surgeons followed her progress and operated on her in May of 2012. The famous transplant surgeon, Dr. Joseph Buell with an operating theatre full of observers from Tokyo to Oklahoma was going to remove bilomas 12 years out from injuries.
    *He told me he removed a blood clot the size of a fist, blocking liver from draining, 7 bilomas and a mixed connective tissue tumor on back of liver. This is the surgery from which I never recovered and where the story gets tangled. By this time I’d had 17 CT’s and MR’s and every radiologist read bilomas as hemangiomas. Now, whatever remains is read as hamartomas and sometimes as liver cysts.

    Highlights from doctor’s notes from Mayo (Jacksonville) to Tulane 2000-2015 and medical institutions in between:
    Since 2012, a battle has been ongoing whereas infectious disease docs wanted to aspirate liver cysts (they were larger,) as that plus the vacuum phenomenon in spine pointed to the seminal cause- infection. Tulane Abdominal Transplant blocked the CT guided needle biopsy three times, after scheduling, and insurance approval. Dr. Joseph Buell said the risk of infection was too high, and that I didn’t have infection in liver or anywhere. His nurse told me, emphatically, that he would never open me up again for a surgery or even this procedure because I’m messy in there, with pockets of infection.

    I left the Tulane I.C.U. unit with an infection. These records are in a “vault” a.k.a. dead man’s vault. I am not sure what I had. I do know that railroad tracks appeared on skin, below navel, that Dr. Buell put in a central line with multiple glass vials of liquids, that I was placed in isolation and the I.V. meds were decided upon after a consult with infectious disease. I thought it was fragilis but I wasn’t very coherent…he said it could quickly destroy tissue, and that it was serious.

    The day I was released, I was vomiting every four hours and unable to take the ampicillin to follow the I.V. treatments, and there was no post op scheduled. My friend and I removed the 70 staples ten days later. I vomited every four hours for many days, even in another ER in my hometown on Phenergan I.V.
    I never fully recovered and numerous docs think I have infection, but there has been no cohesive plan… a little Flagyl here, some Levaquin, third generation cephalosporins….

    I made an appointment with Dr. Buell three months later. He said he’d never had a patient make their own post-op. He didn’t order any tests or scans. Just said “You’re fine.” I continued to decline. Two years later I forced a meeting with infectious disease and Dr. Buell and Dr. Regenstein of St. Luke Transplant, at Tulane, to try to get to the bottom of it, in order to find out what was wrong with me- do I take the steroids or do I take antibiotics?
    Buell asked me why I thought all of those rheumatologists didn’t want me as a patient. He continued, “b/c they’d treat you with steroids and they know the infection could rage.” What infection?

    I’ve been in a triangulation of Liver docs sending me to Rheum who send me to Infectious Disease. Liver sends letters claiming it is not my liver it is auto-immune, probably lupus, signs of anti-phospholipid lupus like levado, etc… these rheums see positive ANA, Sed rate, C reative proteins and even positive RF but they say it is Infectious or that I need to go back to Liver. They also say I need an endocrinologist, who I have. Who knows something is wrong from nerve conduction study, legs (nerves intact but no signal in a couple of groups, in fib) and spinal tap with small levels of protein, white blood cells, leukocytes and rbc but not traumatic puncture. And persistent high calcium.

    Off the top of my head I’ve been diagnosed and undiagnosed with FMF, Bechet’s, Whipple’s, Lupus, hereditary angioedema, IBS, idiopathic cyclic edema, Systemic Leaky Capillary Syndrome, MS (white punctate matter in periventricular regions of brain and symptoms of suddenly losing ability to walk,) and differentials of Wegeners, gluconeogenesis, Budd-Chiari, Cushings, some weird collagen laying down disease, stiff man disease, Lyme, Acromegaly, and most of the time…the Christine disease and asked if I can live with that.

    I have had cysts all over most organs and scarring- granulomatous lesions -where cysts were. Gyn’s call them nabothian cysts, pulmonary says mediastinal calcified nodes; they have been on spleen, pancreas, liver, lungs, cervix and in skin (fingertips, path showed cascading mycin) and in musculature of abdominal wall- these bleed. I have blood vessels which rupture spontaneously- cardiologist us’d big black one on l. arm and said it was one of two main vessels off of heart and he has no idea why this happens every few months.

    I was sent for E.K.G and US which reveal grade one heart failure, docs throw that in the trash and say there is nothing wrong with my heart it is strong. Same with air space disease when I couldn’t breathe out inert gases, docs toss that report and say my lungs are great. I appear very well for a cyclicly ill person. I know.

    I haven’t had kidneys worked up except for GFR, which was low, went from 35-80. Had cysto scan or gram…tube into bladder was filled with scar tissue, more than had been seen and it made procedure unwieldy and painful. Looked liked guppies in a bag.
    Haven’t had brain scanned since MR 2008. Tests at Mayo revealed skull anomaly and that I stayed in alpha even when doing math. And white punctate matter peri ventricular region.
    Haven’t seen vascular or lymphatics doc
    I have applied for NIH’s SLCS study under Dr. Druey but was turned down due to albumin levels staying normal and no low blood pressure during flare.

    Illnesses I have had: Mother Rh neg I’m A pos., third child, and my liver wasn’t functioning properly when I was born. Docs suggested changing my blood type. Nuns named me Mary Christine as I wasn’t supposed to make it. My pediatrician gave me lots of gamma globulin shots before age 12.

    Full body rashes as a child, weeping painful sores in vagina, and from head to toe. Impetigo behind knees many summer.
    Weird mouth ulcers diagnosed as trench mouth, age 15, high fever and tongue, inner checks throat covered in yellow ulcers. Intermittent bone pain above knees as a teen.
    Did have sudden swelling age 20-22, Cushing’s like. 105 to 135 pounds, and higher. I always trained and had what I considered an impeccable diet.

    Tropical disease- 1982 living outdoors on Molokai, HI. Kidney pain, blood in urine, grey mucus lesions in labia, extremely enlarged inguinal lymph node, right. 106 fever. Developed meningitis. I was positive on the Weill-Felix, then negative. Thought typhus, then not. Two months later, my husband contracted angiostronglyosis ( maybe strongliodosis) causing eosinophilic meningo-encephalitis, worms of the brain which damage by mechanical action, in the same valley. He ate one of the four common vectors carrying rat lung worm disease larvae, actually bread that the giant African snail, Veronicella, had left residue on. He was treated at Queen’s on the main island.
    After the fever, I was no longer swollen and well throughout childbearing years, with steady weight from 105-115…until 45, three years after wreck.

    In the past year docs have diagnosed me with hyperparathyroid disease but Sestamibi revealed nothing. I have had painful infections of urinary tract, colon, gum (nothing wrong with teeth and the abscess calcified) after removal of I.V.C. filter, and was treated with Flagyl which made me much better for a while.

    For the past five years, the flares, which have lasted a week or for a couple of months made me housebound, on a walker or in bed. I would have bone pain, joints blow up, hip and knee pain, terrible shooting pains throughout body, distended, hard abdomen, ecchymotic lesions, spontaneous black bruises and sometimes fluid, not urine, would shoot out of my vagina and sometimes also leak from navel-serous fluid color of hay leaving big circles on white t shirts I slept in- and all symptoms would alleviate. MOST of these symptoms improved after IVC filter was removed. I have had fluid from vagina and navel since removal.

    Now, I have swelling, abdominal pain, colon pressure, urgency and burning of urinary tract, and fluid retention which displaces lungs ( as docs say, lungs are dry when I am seen in distress.) And bottom of feet pain, blood vessels bottom of feet like green marbles/swelling in a typical flare.

    When these stop I am well. I jump for joy, do yoga, ride bikes, feel wonderful; the swelling on top of shoulders leaves, my face is lean, my stomach is flat, my joints are all fine. I have great hope. Sometimes I’m only well 2 days. The longest I’ve been well was 3-4 months, in 2005.

    A flare began the day I saw you. That’s why I was so nervous; it is torture as I begin to swell, and I’m always in a bit of denial, hoping it won’t happen this time. Only recently do I have bladder pain and burning and urgency in a flare, and since this accompanies the breathing difficulty I think that colon and small intestine swelling could cause both lung and bladder sequestration or displacement.
    The flare goes like this: I notice I’m hardly urinating for a couple of days, even if I take furosemide. Back when I trained, I’d notice I stopped sweating. My sinuses and nostrils get bloody. By day three I begin to swell and feel as if something is backing up mid abdomen…tremendous painful pressure and muscles so painful around swelling and I don’t what it is and NO ONE else knows what it is.

    I get a humming, growl on exhalation or whirring beneath heart in rib cage, left side, where transverse colon takes a hard turn but I never know if it is that, or pancreas or ?? It hurts inside rib cage to lie on left side during this period and sometimes breathing in creates “catches” on left.
    I know once the growl sound begins that in a few days I’ll have “mush” exit my intestinal tract or possibly exit from a fistula from descending/transverse colon juncture, connecting to rectum. It will be massive. I will have been regular with bowel movements every morning until this point. The event will be preceded by a small very hard bowel movement (which I never have otherwise.) And at some time after that I will have massive- ½ gallon- burning mush exit my body. All symptoms alleviate.

    The past four days I have had muscle tension, shakiness, spasticity in abdomen, distension, great difficulty breathing while walking and esp. lying in bed. Heart pounding, carotid pounding. Constant but worse at night bladder burning and peeing a bit every 15 minutes. When I suddenly felt myself not being able to control sphincter, a lot of stuff? came out of me. It seems to have a lot of bile as it burns my skin. I’m immediately asymptomatic. I can breathe fine and I have no urgency or burning in urinary tract. Is it possibly a pocket of infection creating a fistula out of my body? What is the agent which causes body of intestines to swell?

    This recent flare, it came back on my right side a few hours later, ascending colon pain, heart banging, couldn’t get a breath, nearly called an ambulance. Severe distension on right side of abdomen and left side empty/soft. I remembered not being able to breathe like this before and it being displacement of lungs by intestines. I stood up, walked around and took 40 mg furosemide and a Xanax. After two hours I tried laying down, got back up, eventually slept some sitting up. This morning I have black/dark green bowel movements and I’m extremely sore on right posterior of torso, up to shoulders.
    Thank you for reading this. I will get whatever medical insurance will allow you to treat me. Maybe I’ve had Crohn’s all this time. Maybe it is autonomic neuropathy Bechet's or dermatomyositis? I’d like to give up thinking about it and to have my life and body back. I’d really like to know what happens inside me, and why, during flares.
    Christine Maynard

    San Miguel de Allende, MX
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