Diagnosis, treatment and support

Lidiana Flores is organizing this fundraiser.

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Hi, my name is Lidiana.

October 2021 to present:

I got what seemed like an upper respiratory infection according to doctors. During this time the COVID-19 nasal swaps were negative and the blood test wasn't performed afterward by any doctor. All symptoms started to gradually kick in and progressively get worse. I barely got to finish the school semester of December 2021, but couldn’t go back next semester due to the deterioration of my health.

Here is the list of the symptoms that escalated quickly:

fever
headache
shortness of breath
heart palpitations
abdominal pain
bloating
bowel issues
muscle pain/spasms/ twitches
bone pain
bruising
hemorrhagic episode (twice)
migraine
cough
vision+sensory issues
knee loosening/limb weakness
imbalance
Subluxations and dislocations
language/speech symptoms
genitourinary+lower gastrointestinal bleedings
malabsorption and weight loss.

Throughout all, I had been rushing to ER, being admitted multiple times and seeing multiple local specialists for help, including finally Mayo Clinic (MC). After I had exhausted all my financial resources while being in LOA trying to keep my benefits and continue proper specialized health care, the employer-sponsored health insurance stopped having MC in the network during this process. Multiple variables contributed to the current situation of great hardship:

Unable to use my paid benefits of disability due to a lack of knowledge and documentation by local doctors, while getting little to no coverage and straightforward denials of proper specialized healthcare approaches for my case from the former insurance.
Unable to get a doctor's clearance or accommodations note to go back to work, through the process I asked: (1) the Office of Patient Experience at Mayo Clinic which they don't do, then (2) a local PCP not feeling comfortable because he wasn't an expert and needed me to complete all the therapies recommended by MC but I couldn't even coordinate the services or get approved by the insurance to begin with, then (3) defaulted to an HMO PCP which his conditions where only after receiving all specialist's documentation and clearances first, but wasn't even referred to the things already recommended and established by MC. Coordinating with the systems has been almost impossible (current).
Lost the barely established health care services altogether after making some progress to get them with the former insurance (PTSD specialized therapist, specialized PT therapist, specialized physicians, medications, etc.).
Unable to get alternative help, losing my former job entry and more...

The dynamics within the health system like the lack of awareness, the level of medical gaslighting, diagnosis process, diagnosis overshadowing, denied services and biased decisions from multiple entities regarding my health journey have greatly impacted my health and overall well-being including my loved ones. Self-advocacy has been extremely challenging for me (even when I tried) due to many factors and circumstances. Unfortunately, these situations didn't get appropriately or promptly attended, creating extra difficulties and increasing the complexity of my overall health and living situation. I don’t even have the health or energy to seek accountability. I’m exhausted and don’t want those negative feelings. I trust in God with all my heart and keep trying my best. I'm experiencing great loss but hold to faith and hope that I'll reach some help or support to have appropriate health care with an action plan and treatment that will improve my overall health as I navigate this complex health journey (Dx: G90. A, M35. 7, M79. 7, G96. 8, O71.82, D06. 9, N80. 4, N85.02, J98.4, M54. 1., M54. 16, I27. 20,..)

That’s why I’m activating this GoFundMe again after all these years. Any possible help or support would be greatly appreciated (e.g. sharing posts, sharing reliable resources to aid my case, etc.). I’m extremely grateful for everything and for everyone on this healing journey. Please take good care of your health and always advocate.

God bless you all always!

SEE BELOW FOR DETAILED MEDICAL INFORMATION ABOUT MY CASE:

Findings in blood tests:

CRP positive 2017

High Lupus Anticuagulant 2017

High D Dimer (extremely frequently) 2022

Vague positive cardiolipin (2 tests and higher every time) 2022

Positive COVID-19 Antibody Test (SARS-CoV-2 AB IgG), Semi-Quantitative 9.04 index/Ref.range of <1.00 index. SELF ordered

High C19.9 tumor Marker

High Chromogranin A

Low Iron Saturation 2022-2023

Non-parathyroid hypercalcemia

Positive and negative alternate ANA test (3-4 times with different speckle patterns) last 2023

Alpha 1 Globulin high 2023

High Estradiol Levels 2023

Findings in urinalysis:

Calcium level >200 (“consider genetic hypercalciuria” by Mayo Clinic lab pathologist but NOT investigated by doctors)

Constant hematuria (occult blood in urine) active as Sep 2023

Finding in Chest CT:

Chronic inflammation changes in the lung apex area

2 nodules in the left apex lung area

Sternums compression heart and pericardial and pleural effusion (6.3mm) Dec 2022

Calcified granuloma August 2023

Liver lobe lesion unable to characterize Aug 2023

Small pericardial fluid Aug 2023

Bibasilar atelectasis Aug 2023

Findings in the head, abdominal and pelvic CTs:

⚠️ Same as MRI basically⚠️

Finding in my MRIs:

Magna cisterna Magna cyst in cerebellum brain- congenital 2017

No acute ectopic amigdalas in brain

New Pineal gland cyst November 2022

New 2mm abnormal FLAIR subcortical left frontal white matter brain on April 2022

New 3mm abnormal FLAIR right subinsular white matter Apr 2022

3mm T2 barin foci February 2023 at ER

2mm disc protrusion with posterior central annular tear effacing the thecal sac on C6-C7 Feb 2023

New cyst in C5-C7 neural foramina

T1-T2 multiple cyst on neural foramina

Levoscoliosis Apr 2023

Multiple liver cyst

3mm multiple calculi and kidney cysts Mar 2023

New Liver 3mm T2 hypertension spot Mar 2023

Small free fluid in pelvis Mar 2023

Small Pleural effusion chest/thorax Mar 2023

Spondylitis/degenerative bone changes MRIs 2022-Xrays on Sep 2023

Findings in MREs October 2022:

MRE liquid contrast Bowel - Folding pattern on jejunum and ileum

MRE Elastogram - “Layering material within the gallbladder. Most likely sludge”

Liver stiffness 2.3 kPa

New left interpolar kidney cyst 1.2 cm with thin septation (Bosniak level 2)

New subcentimeter simple left renal cysts (Bosniak level 1).

New 10 mm upper vagina cyst may be "Gartner's Cysts"

Nabothian cysts in the cervix

Dominant left ovarian follicle cyst

New focal thickening of the junctional zone in the uterine fundus versus intramural fibroid with submucosal component

Diffuse scattered small bowel dilation described by vascular expert

Findings on regular PET Scan (not specialized for carcinoid tumors):

Hypertrophic facet in lumbar spine March 2022

Uptake suggested uterine fibroids March 2022

Parotid glands uptake “physiological activity” March 2022

Small and large intestines “physiological activity” March 2022

Pelvic ascites March 2022

Head and neck "physiological activity", and "brown fat activity" at the cervicothoracic inlet April 2023

Thoracic "physiological activity" including some "physiologic" brown fat activity in paraspinal soft tissues medially April 2023

Abdomen and pelvic "physiological activity" April 2023

Liver SUV mean 2.2, max 2.3 April 2023

Findings in ultrasounds:

Bilateral calculi and cysts on kidneys

Homogeneous to heterogeneous texture in uterus

New ovarian cyst

Low volume in the abdominal vessel

Trace pericardial effusion

Mild mitral valve and tricuspid regurgitation 2023

Mild pulmonary hypertension 2023

Abnormal wall motion 2023

New bilateral hemorrhagic cyst on ovaries Jan 2023

New endocervical canal fuid Jul 2023

New cervical polyp Jul 2023

Free fluid adjacent to right ovary Jul 2023

Mild elevated peak diastolic velocity of superior mesenteric artery fasting Aug 2023

Autonomic Reflex Test:

Evidence of orthostatic intolerance 2018

Evidence of dysautonomic disfunction 2022

Electromyography:

Normal big fiber conduction 2022

Abnormal arms and legs conduction May 2023

Bladder Emptying Study:

Retention identified on ultrasound

Cystoscopy with biopsies:

Inflammation spots Oct 2022

Biopsies report chronic inflammatory changes Oct 2022

New Colonoscopy follow-up with biopsies:

Left colon edema and lymphoid aggregates Oct 2022

No significant changes in March 2023

New Endoscopy biopsies:

New polyp on my stomach was removed in March 2023

Enlarged Polyploid tissue

Gastritis

Laparoscopy surgery OBGYN biopsies:

EIN / CAH / CIS Stage 0 Dec 2022

CIN 3 Dec 2022

DIE Stage 4 extra pelvic endometriosis Dec 2022

Colon adhesions Dec 2022

LEEP Surgery:

CIN3 with no clear margins needs re-excisions Mar 2023

Colposcopy:

CIN1 in September 2021

CIN1 after IUD treatment Jul 2023

Bone Scans:

Begging of the year 2022- “unremarkable”

September 2022- “degenerative changes” “no definitive”. No malignant lesions according to the impression portion of the report.

2022 Genetic test results:

TNXB gene variant 35318 and 35318 - Possibly associated with Ehlers-Danlos Syndrome, Hypermobility Type ~ Zweers (2005), GeneDx (2017)
MTHFR single gene mutation A22V - a high-risk adverse reaction to nitrous oxide and increased impaired role in folate and homocysteine metabolism (Leclerc D., Sahara S., Rozen R. 2000-2013)
ITPA partial deficiency detected - higher risk adverse reaction to Mercaptopurine and Azathioprine
20p11.22 gene variant 68422 and AR Hebe variant 74786 Androgenic Alopecia
HBG2 gene - Hereditary Persistence of Fetal Hemoglobin
SLC44A2 gene -Transfusion-related Acute Lung Injury
Walfarine sensitive
Lactose intolerant- highly likely
Brain aneurysm - higher risk
Atrial fibrillation - higher risk
Salt-sensitive hypertension- higher risk
Coronary heart desease/heart attack - moderate increased risk
Genetically not resistant to an HIV infection
Asthma- risk detected
Osteoarthritis- higher risk
Osteoporosis- moderate increased risk
Breast cancer - slightly increased risk
Colon cancer - moderate increased risk
Melanoma - moderate increased risk

Diagnosis by Specialists:

POTS Postural Orthostatic Tachycardia Syndrome (type of dysautonomia) but hasn’t told me why or which of the 4 the type. The note states “chronic”. Diagnosed at Mayo Clinic
CSS Centran Sensitivisation Syndrome- neurological. Diagnosis at Mayo Clinic
HSD Hypermobility Spectrum Disorder- connective tissue disorders. Diagnosed at Mayo Clinic. Currently searching second opinion to discard hEDS, my Beighton scale score is 5/9 because of the lack of accessible/documented health history of my family). Genetic results exclude severe forms of EDS but hEDS doesn't have identified genes thus is being correlated with TNXB (from 2004 to 2017 researchers available).
Fibromyalgia - Rediagnosed at Mayo Clinic
Restrictive Pulmonary function unspecified- Jan 2023 it’s being associated with thoracic compression due to musculoskeletal deformity (history of severe surgically intervened scoliosis). Diagnosed at a local pulmonologist
DIE Stage 4 Extra Pelvic Endometriosis
EIN
CIN3 - all previously mentioned were diagnosed by OBGYN surgeon and oncologist at local hospital
Mild Pulmonary Hypertension- Jan 2023 echocardiogram
Radiculopathy
Neuropathy - both by local neurologist May 2023
Above umbilicus diastasis recti- by colorectal surgeon May 2023

FOR MORE INFORMATION VISIT:

Screening, Diagnostic and monitoring plan recommended:

Blood work
Imaging
Scopes
Genetic testing (DMD, etc)
Bone biopsy (completed, decreased ferritin in cells smear)
Tissue biopsies (CIN3, EIN, MCAS, etc.)

Treatment plan recommended:

Specialized specialists follow up (multiple and hard to find in or out of network)
Specialized Genetic Counseling ($200 out of pocket)
Mobility aids and joint protection accessories (denied by last insurance)
Physical Therapy (Mayo Clinic + other providers)
Occupational Therapy (Mayo Clinic)
Pelvic Floor Therapy (Mayo Clinic)
Pulmonary Rehabilitation (Institute of Advance Thoracic Surgery, decompression surgery was not advised due to possible complications considering my case)
Medications
Pain management
TPN (tentative)
Infusions (Iron, electrolytes, etc. already recommended by providers but unable to coordinate approval with local providers and insurance)
Hormonal Therapy (control EIN and DIE, hysterectomy still considered if new neoplasm grows)
Mental Health Therapy

BILLING:

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2019 Health Event:

Iron infusion

Blood transfusion after hemorrhage from tissue tearing after clip fall from small NET removal

I was recently having bad abdominal pains that resulted in some carcinoid tumor (neuroendocrine tumors NET) finding in my digestive system and further health complications(hemorrhage+anemia). This process had taken so much physical and emotional energy and I had not been able to go back to work to re-establish myself financially. After 1 urgent care, 3 hospitals, 2 hospital admissions, 2 weeks in different admissions, 3CT + 1 PET scan and 1 blood transfusion Im going to see the specialist oncologist to finally get treatment at Mayo Clinic. I hope my process helps others about the importance of listening to your body and advocating for it, while bringing some awareness about the rare NET. In medical school, many doctors learn the saying, “When you hear hoof beats, think horses, not zebras.” Most physicians are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. Any help would be greatly appreciated. Forever grateful and blessings to all.

FOR MORE INFORMATION VISIT:

2017 Health Event: