Darlene’s Story

 

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Darlene and her service dog Xóchitl (Xóchitl kept Darlene seizure free for almost 2 years J)

Darlene Fernandez is a generous, loving, kind and beautiful soul who has devoted her life to helping others. For roughly 10 years, Darlene has worked in social services providing outreach, pathways to housing, and mental health support and advocacy to those in need.  Now, Darlene needs your help.  After more than ten years of deteriorating health and misdiagnoses by scores of doctors, Darlene has finally been diagnosed as having Chronic Lyme Disease (CLD).  CLD is the result of undiagnosed or untreated Lyme Disease (bacteria) that has gone into hiding within the body, and manifests itself in very serious and debilitating health conditions.  It is extremely difficult to detect, and treatment is lengthy, very expensive, and is not covered by health insurance.   Those of us who know and love Darlene and her husband Fernando, also know how independent and self-sufficient they are.  They have resisted asking for financial help, but are unable to pay for the on-going treatment she needs.  That’s why they need your help.  

With proper treatment under the care of a specialist in dealing with Chronic Lyme Disease, Darlene and Fernando are hopeful for her recovery. The Doctor who helped diagnose Darlene has been successfully treating CLD patients for many years. He has prescribed an extensive plan for Darlene comprised of multiple antibiotics, supplements, intravenous treatments, and ozone therapy to fight and kill the bacteria and rebuild her immune system.  Although there is a long road to recovery, at least now with the help of this specialist, there is hope.  Your help is needed to raise $48,000 to get Darlene started on her treatment and on the road to recovery. 

All Donations will go directly to pay for Darlene’s Chronic Lyme Disease treatment as prescribed by her Doctor. –closed; thank you everyone that donated.


Until recently, Darlene served as Associate Director of Outreach and the Outreach Coordinator for a large portion of Los Angeles County and Long Beach, California. She helped homeless veterans and others to gain access to resources and help in turning their lives around. However, because she could no longer physically perform her duties she was terminated, which also meant the loss of her health insurance.  
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For years, Darlene had been told she had everything from rheumatoid arthritis, interstitial lung disease, undifferentiated connective tissue disease, premature ovarian failure, lupus, cognitive disorder, epilepsy, and even that her conditions were psychosomatic. All of these incorrect diagnoses also resulted in her being prescribed medications that provided little or no relief (or simply created new debilitating conditions) and now Darlene’s situation has become dire. 

Darlene’s current symptoms include grand mal and focal seizures, numbness, shingles, random muscle jerks, poor vision, poor balance, extreme fatigue and weakness, difficulty breathing, light and sound sensitivity, memory loss, difficulty speaking, tingling all over (including her tongue), trouble reading and writing, difficulty comprehending what she reads or having long conversations, erratic menstrual cycles (after 10 years of being post-menopausal while still in her 20’s), insomnia, plus anxiety and fear of having another seizure.  
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The last few years have been extremely difficult for Darlene and Fernando.  Not only did Darlene lose her job and the fulfillment of serving the needs of others, she has also lost the ability to live the active lifestyle she loved.  Darlene has always been a passionate explorer, adventurer, hiker, and lover of the outdoors.  She and Fernando have rappelled down cliffs, climbed rock faces, hiked the Grand Canyon, canoed the Colorado River, traversed and explored the beauty and power of our natural world in countless ways.

Now, performing the most basic tasks like washing dishes, or doing one load of laundry are exhausting for her.  Her immune system has shut down, her central nervous system is under attack and her body cannot fight the bacteria load consuming her.  Her lung capacity is only 80 percent of what it should be.  She has lost 25 pounds.  She has difficulty walking and no longer drives.  Darlene’s days are now mostly filled being bedridden.


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For those who know her, Darlene’s warmth and compassion are an inspiration to us all.  She has touched the lives of so many in a profound and beautiful way—now it’s our turn to help her.  Help her to get back the health that has been taken from her so she can return to a more normal life of loving and caring for others, and providing her friends and family with the warmth of her smile and the generosity of her heart.
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More on Chronic Lyme Disease:
In September 2015, the Center for Disease Control (CDC) stated that 300,000 new cases of Lyme DIsease are reported every year.   Trials and surveys found that patients with Chronic Lyme Disease suffer a worse quality of life than most other chronic illnesses, including congestive heart failure, diabetes, multiple sclerosis and arthritis.  Yet, because the CDC does not recognize Chronic Lyme Disease, insurance companies are not required to cover the cost of treatment.  There is hope that more recognition and awareness will change this in the near future.   
https://www.lymedisease.org/lyme-basics/lyme-disease/chronic-lyme/

http://www.ilads.org/lyme/lyme-quickfacts.php

 

Update 1

Posted by Fernando Vargas

November 2016

 

Thank you guys so much for all the support that we have been receiving in such a short amount of time. You have given us hope and that is the best medicine next to, of course, the healing love that you have all given us.
Darlene finds all of this amazing - especially since this is just the start.
Please spread the word so that Darlene can be out there giving you all hugs and kisses in person.

Even if you can't contribute, please spread the original post or use the one below to help reach more people.

Free Darlene from Lyme Disease
Darlene Fernandez is a generous, loving, kind and beautiful soul who has devoted her life to helping others. After more than ten years of deteriorating health and misdiagnoses by scores of doctors, Darlene has finally been diagnosed as having Chronic Lyme Disease (CLD). The Doctor who helped diagnose Darlene has been successfully treating CLD patients for many years. Although there is a long road to recovery, at least now with the help of this specialist, there is hope. Your help is needed to raise funds to get Darlene started on her treatment and on the road to recovery.

 

Update 2

Posted by Fernando Vargas

November 2016

 

Hello everyone, you are now on "Team Darlene." This is Fernando and I want to thank you all again for your support.

Thanks to all the generous donations and a hand delivery from a friend, Darlene received her first wave of medications and supplements yesterday, which included 2 subcutaneous injectables, yikes!! She hates needles. Did I mention that she hates needles? 
In the "good ol' days" Darlene would make the nurses chase her down and tie her to the chair if they even mentioned a needle or injection. Fortunately for me she is too tired to put up a good fight, so both injections went through with minimal struggle, although I had duct tape within arm’s reach just in case. Just kidding ;)

Seriously though, although Darlene hates injections and the medications take up most of her day, she does it because with all of your combined strength she is more hopeful and brave.

As we have found out the hard way Lyme disease and its nasty chronic form are no joke. Please keep spreading the word and be cautious when traveling through deer tick country.

 

 

Update 3

Posted by Fernando Vargas

January 2017

 

HERXING IS REAL: IT’S HORRIBLE, IT’S HELL.
Hello all and happy holidays. I apologize for not posting an update in a while. I was busy discovering, the hard way, how horrible and real the Jarisch-Herxheimer Reaction (AKA Herxing) is. First off a special word to anyone who thinks that I use “it’s Hell” lightly. I truly believe that there is a special corner in Hell that is just Herxing. I described it to one friend as having Mono, Eczema, and the stomach flu all at the same time. 
Herxing symptoms commonly include:
"… increased fatigue, joint or muscle pain, skin rashes, photosensitivity, irritability, paresthesia, dizziness, sleep disturbances, asthenia, muscle cramps, night sweats, hypertension, hypotension, headaches (especially migraines) and swollen glands. Also reported are heavy perspiration, metallic taste in mouth, chills, nausea, bloating, constipation or diarrhea, low grade fever, heart palpitations, tachycardia, facial palsy, tinnitus, mental confusion, uncoordinated movement, pruritus, bone pain, flu-like syndrome, conjunctivitis and throat swelling" ("Herxheimer..."). Add to all this an increase in seizure activity and muscle ticks and you’ve got how Herxing hit me. 

This is a good source for information on Herxing:http://www.lemonandlyme.com/Articles/Expect/Herx.php

In the past few weeks I have been having fun with all of this. The only way that I made it through is by family and friends bringing me meds, cleaning my house, and forcing food down my throat. My husband is a trooper because on top of all those things he kept my medications in order, called and spoke with all of my doctors because my brain stopped working again. He helped me to the bathroom, and picked up after my constant vomiting – and never complained one bit.

I don’t mention all of this to discourage you. While I have been extremely miserable and out of it, I take this all as good news. My treatment is working! Otherwise I would not be Herxing. This battle, your healing thoughts, and kind donations continue to be worth it. My doctors continue to refine my medications based off of what my body can handle and the level of damage already done by these nasty little buggers. I will post a picture soon but not now because it will not be very holiday-ish. :) In the mean time I hope that you all have a wonderful holiday season filled with blessings like you have blessed me.

With love

-Darlene (once again through Fernando because she still cannot look at a computer screen. But we will get there. We know it!)

 

 

 

Update 4

Posted by Fernando Vargas

January 2017

 

Happy and Healthy 2017! Sorry for the belatedness but I had to wait for a whole bunch of things to align to get this picture. :-) May your 2017 be as blessed as you have made me. Thank you all. <3

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Update 5

Posted by Fernando Vargas

March 2019

 

In September of 2017 Darlene developed a stomach pain that prevented her from eating. The doctors dragged their feet believing that this was an eating disorder and not a medical problem. It took months to be seen by a Gastroenterologist, who found chronic inflammation, multiple adenomas and the thinning of one of the four layers of the stomach. 

By December 2017 she was completely wasted away, critically emaciated, having lost roughly 80 lbs and spent all of December in the hospital. At this time, a PICC line was inserted in her arm and this was used to feed her with an IV solution called TPN. On January 2nd 2018 she was discharged with the PICC line still in place, she weighed 80 lbs on this day. We continued to deliver TPN every day while at home. The TPN saved her life but her stomach pain persisted. 

In April of 2018 Darlene developed Pneumonia and the doctors also found that she had developed Hemolytic Anemia (her hemoglobin was being destroyed). This battle took three months, one month of which was in the hospital again, to finally overcome. 

July 2018 thru September 2018 Darlene had much progress, she was no longer bed bound and was working with physical therapy to begin walking again, with the aid of a walker. She was getting stronger, her stomach pain was decreasing, we were lowering her pain medications, life was sprouting again. But at the end of September, Darlene contracted pneumonia again and this time it was different. Draining the infection only helped for a week or two as the fluid would build back up again. She was tested for everything that could possibly cause this level of respiratory distress. She was in isolation while testing for TB, ultimately by the end of November she was found to have an infection of Aspergillosis (a very common fungus). She was started on Antifungals and regular antibiotic. We administered these through her PICC line at home. 

By December of 2018 it was clear that the medicines were not working and the fungus was getting worse. The doctors started her on a different medicine that was extremely dangerous and toxic. The medicine was helping and the infection was getting smaller. 

In February 2019, Darlene's body began to dump potassium, a common side effect of the antifungal medication. Darlene spent all of February in the hospital as the doctors battled the fungus and her potassium issue. Another antifungal medication was given and it seemed to be slowing the progression of the infection. The Doctors now felt that surgically removing the infection, and possibly one lobe of her right lung, would be the best course of treatment. 

The day before her surgery Darlene developed pneumonia yet again. The surgeon felt that she was too weak to survive the surgery so another chest tube was placed in order to drain the infection. The hope was that this would allow the medication to shrink the fungus and would give her a chance to get strong enough for the surgery. Darlene again was making small progress during the first week of March. On March 7th Darlene was having labored breathing and her O2 concentration was desaturating. She was given a breathing treatment and put on 6 liters of oxygen at home. This momentarily stabilized her but she knew that something worse was wrong and EMTs were called. She was again admitted to the hospital, a chest tube was then inserted again in order to drain the continuing infection. Her condition continued to worsen and after three days, she was placed on a ventilator. 

Due to Darlene’s underlying interstitial lung disease (scarring of the lungs), numerous bouts of pneumonia and the fungal infection, her lungs were too deteriorated, and she was unable breath on her own. The ventilator was keeping her alive. Upon discussions with multiple doctors, hoping for any other possible outcome, and in keeping with what Darlene wanted, the decision was made to terminate the ventilator. 

Surrounded by many of her close friends and family, Darlene passed away at 2100 on 3-11-2019. She is no longer suffering, she is no longer gasping for breath, she is no longer hungry but unable to eat, she is no longer in pain. She is no longer wishing instead of being bedridden that she could scale a rock wall, hike a mountain trail, run on the beach, dance around a fire, and live fully and joyously. 

Anyone who knew Darlene Fernandez, or came to know of her through others, experienced the joy of her spirit, felt the love of her open heart, and were grateful to have crossed paths with such a beautiful soul. Darlene will continue to live on in our hearts and adventures. We know she finally has found the peace and freedom to roam wherever her spirit wants to take her.

Services were held on Sunday, March 17th 2019 at 5:00pm
La Sierra University Church, 4937 Sierra Vista Ave. Riverside, CA 92505

 

 

 

 

 

 

Goodbye and thank you Darlene! -FV