We first became aware of Shani really being ill in 1992.  She had developed symptoms that were pretty general at first, mostly flu like, and she complained of  "Just not feeling good"  in general.  Then she came down with a rash on her face.  I took her into our family doctor and he was immediately suspicious of something more going on.  He ordered an arthritis panel and when the results came back, he decided that it would be wise to send her to a specialist.  She was nervous about going and asked me to go with her, which I did.

        At the time, Shani was twenty-two years of age, with a husband and two year old son.  She had been under a lot of stress because she had been working for a local grocery chain and her manager was constantly on her to keep moving.  She finally quit the job and stayed home.  It was very hard on her because she was such a vibrant and independent young woman.  She was beginning to lose her self esteem and it took a lot of talking at all hours of the day and night to try and keep her mental state uplifted.  She even made an attempt at suicide.  That was the point when things started to turn in another direction in her life...  She became a Christian.  Later, she went to work for a Nissan dealership in our area selling cars.

        Finally feeling at peace with herself, if not those of us around her, she decided to ask my husband and I if it would be alright if she came back home for awhile and stayed with us.  It was becoming too much for her to try and take care of her home and family by herself.  Of course it was OK with us, there was never a time when I didn't want to be around her.  She was fun to be with!  She had a great sense of humor, full of mischief and gaiety.  She was also one of my very best friends, and the most talented person I have ever known.

        Shortly before Christmas of 1993 Shani came home to live with us again.  She decided to quit her job again because half of the time she was too sick to work anyway.  At first she stayed in a small room that I use for an office now.  (Thirty years ago, it was my grandfathers office, then it was a guest room, now an office again.)

        She was always physically uncomfortable no matter where she was, whether it was at home or somewhere else.  When she was at home the living room was where we spent most of our time together.  She would try every couch, chair and position.  She would settle down in one spot, but after awhile she would get up and move again.  The arthritis was becoming unbearable, and she was in constant pain.  She finally decided to just try and be comfortable on the floor in front of the couch.  One day when Rick got home I asked him to move the mattress of the bed she had been sleeping on, to the living room floor.  He did, and that was where she spent her last days with us.

        She was happiest when she was lying there and I was happy to have her there, because she was close enought that we could talk to each other when we couldn't sleep.  (Rick's and my bedroom has a door that opens into the living room.)  Also, because I could hear her if she needed me.  The first thing in the morning it was, "Morning Mom."  "Morning Shani."  and the last thing at night, "Night Mom, I love you."  I would answer back, "Love you too, Shain." (Shain was an endearing term I used sometimes.) We were happy then.

        Rick had decided he wanted us to go to Washington state that year for Christmas, to spend it with his family.  We had never spent Christmas with all of them before, so against my better judgement, we went.  (I had a 'feeling')  We never got to spend another Christmas with Shani, She would be dead before another one would come.

        Shani had insisted that she would be o.k. and that she would spend Christmas with her husband Phillip and his family and their little son Nicholas, who was three.  She did, and I am glad that her last Christmas was with her son.  Christmas just isn't the same anymore without her.  She and her sister Colleen, were the head elves in charge of decoration around here and we miss her at Christmas time especially.

        Fortunately for us we still have one very beautiful and talented young woman in our family, who has given us all another wonderful 'little gift', named Drew.  Shani and her sister, Colleen, were always together and were an 'unbeatable team', when it came to getting things going around here.  They have been my inspiration in life and have kept me from going; well, completely insane!!  If it had not been for those two babies of mine, I'm not so sure I would have made it this far in my life.  They gave me something to live for and to work for.

        We came home after spending a nice Christmas with Rick's mother, grandparents, and two of his brothers.  Fortunately for Rick, he got to be with his brother Craig for one more Christmas, before his death in 1996.  I wish we could just skip the Nineties altogether, we have had so many deaths.  My father Tex, May 28, 1992, right after the major fire in our home March 17, 1997.  My Aunt Louise, who lived next door to us, June 2, 1993, right after the fire that burned down our garage and playroom November 5, 1992.  My daughter Shani, April 25, 1994.  My step-mother Athena, October 9, 1994.  And Rick's brother Craig, July 17, 1996.  Seems like a lot of death and disaster all in close quarters.

        Back to the story.  After returning home, Shani's spirit was good, but her body kept getting progressively weaker.  I continued to take her to the Rheumatologist in Ventura, and he continued to prescribe Prednisone for her, as well as pain killers and other drugs.  I would like to note here that Prednisone can be a deadly drug, if over-prescribed, or taken improperly!  ( It is very important for anyone taking this drug to be checked on a regular basis and to not use this drug unless under the supervision of a physican. )  Of course we had no idea at the time what would happen to her and it was five months after the autopsy that we found out the she did not die from Lupus.

        The death was listed by the Los Angeles County Coroner as:

Immediate cause of death:  Aspergillosis and bleeding Diathesis, due to the use of Prednisone for Systemic Lupus Erythematosis.

The time between the onset and the time of death was listed as Unknown.  ( I should mention here that Shani also was suffering from Raynaud's Phenomenon, which is not uncommon in cases involving arthritic conditions. )

        Shani had entered the hospital in Santa Paula on April the 19th for excessive bleeding.  We were at home in the early afternoon when she had gotten up to go to the bathroom.  She had started her period, or so we thought.  She was feeling terribly weak and looked very pale and tired; more so than usual.  A friend of the family had stopped by for a visit when we heard her call out from the bathroom.  I went to see what was the matter and she had passed out on the toilet.  She was leaning forward and about to fall, so I called to David to come and help me.  He picked her up and I had asked him to put her on the bed in my room.  I asked him to stay with her for a few minutes while I ran to my mother's across the street, to call Phillip; her husband, to come and take her to the hospital right away, as our phone was disconnected at the time.

        Unfortunately, Rick was still at work and I had no way to get her to the hospital immediately.  Phillip rushed over and took her up.  She insisted that she was o.k., but after seeing all the blood in the bathroom, I wasn't going to take a chance, it was just too much.

        I went back to my Mother's house and called Rick at work and asked him to come home, which he did.  He works for the City of Thousand Oaks and they are really good to their employees in an emergency like this one.  There was no problem in him leaving early.  When he arrived home, about half an hour later, we went straight to the hospital.  In the mean time, I called everyone I thought should know that she had been admitted to the local hospital.  My best friend Charlene showed up right away and Shani's other step-father Bob, her sister Colleen and a few friends, and of course Phillip's family.  Shani's grandmother already knew. I told her I would call her when I knew what was going on, then we could come and pick her up.
 
        We were allowed to go in to see Shani for a short visit, a few of us at a time, before they would take her to surgery to insert a tamponade for a ruptured uterus.  She was not having a normal period, instead she had a small tear in the uterine wall and they thought they could stop the bleeding by inserting a device to put pressure in the area.  We waited.

        The doctor came in and said she was doing well and they would wait twenty-four hours to see if the procedure had been effective.  We waited again.

        The next day she was sitting up in bed, joking with us and the nurses.  Then something strange began to happen.  Every time they took her blood pressure or tried to give her a shot, she would get a large hematoma under the skin in that area.  The doctor was beginning to think there was something more happening then just a tear in the wall of the uterus.  The doctor removed the tamponade and the bleeding got worse.  The tissue had adhered to the tamponade and when it was removed more than the tamponade came with it.  He immediately decided to transfer her to another hospital.  After some discussion with Phillip and her family; the doctor went to make some calls to see which hospital was available to take her.

        The decision was made to transfer her by ambulance to Cedars-Sinai Medical Center in Beverly Hills.  There was a doctor there that was a well-known Lupus specialist and they happened to have a bed open in the Intensive Care Unit.

        Shain was told that they would take her to Cedars by ambulance.  She wanted me to ride with her, but I needed to go home and pack a bag and make ready for the trip.  We would be staying there at the hospital for who knew how long.  I was not going to leave her and assured her that we would be right behind the ambulance.  Unfortunately, that was the last time I was to see her conscious.  (She must have known what was coming.)  By the time we got to the hospital she was heavily medicated.  The trip by ambulance had been extremely hard on her, and she was worse upon arriving at Cedars.

        We were allowed to go in to see her for a short visit.  She moaned and groaned a little and I think she knew we were there, but for the most part she was unconscious.  I was horrified by the fact that they had left her feet uncovered.  Shani hated to be cold and when I touched her small feet, they were like ice.  She was also oozing a black substance, that I was told later was blood, from her mouth and ears.  Her sweet little hands and feet had turned blue and were badly swollen.  I asked the nurse to get her another blanket so that I could cover her.  She looked at me like I was crazy!  She said, "She can't feel anything!  It's not gonna make any difference..."  I said to her,  "Don't tell me it's not gonna make a difference!  I said get her another blanket NOW!!"  God, I was livid!  The lack of dignity Shani was suffering on top of everything else was too much!

        Shortly after the blowout with the nurse, the doctor came in and wanted to know what was the matter.  I told him Shani hated to be cold and that I felt that it was unnecessary for her to suffer indignity on top of everything else.  He ordered another blanket.  Of course they wanted to keep checking on the color of her toes and fingers, but they didn't need to keep her uncovered ALL of the time!

        That day passed.  The next day they ordered all kinds of tests.  We waited.  When the results came back, there were no answers.  We waited some more.

        Friends drifted in and out.  Some came long distances to be with us.  Aleks, Shani's best friend in the world; outside of her sister, came with her boyfriend and another good friend of Shani's - Gina.  They waited too.  Harry was there from the beginning.  He is another one of our oldest and dearest friends.  He had lived with us off and on for a number of years and is family.  He took time off from his job and stayed at the hospital with us.  Susie, one of my best friends came with her mate and they stayed one night.  Sue had to take her friend back home the next day because of work, but came back and stayed with us the rest of the time.  Phillip was there and his mother, Linda, came with Nicholas, Shani's son.  Bob, my ex-husband came and stayed when he found out how sick she was.  Too many people to mention came just to offer support and to see how she was doing.  She had all those people who cared and loved her come from miles, just to be with her.

        We talked, we reminisced, we prayed.  We held each other and cried.  We didn't sleep and hardly ate.  We walked in the courtyard and told each other it would be ok.  God wouldn't take her!  Not Shani.  She was special.  He would let her live...

The third day, they told us they were going to quarantine her.  They had drawn blood and were sending it to Atlanta, to the Center for Disease Control, to test for Legionnaires and Hanta virus.  They still had no idea what was happening to her.  We were allowed to go in if we wore masks.  They were not going to keep us out because if it was something like that; then we had already been exposed anyway.  So, it went on...

        Life had come and gone around us there in the ICU.  The woman next to Shani, passed away, silently.  All that was left was her memory and the grieving family.  We offered our condolences.

        The test results came back the next morning and it was negative.  Not Hanta or Legionnaires.  What then??  Nobody knew.  Nobody.

        Not long before she left us, they wanted to try one more thing.  A last ditch effort they said.  The doctor's asked for permission to give her something to thicken her blood.  She had been given long past the limit of blood transfusions and there were no more options.  Phillip was the one to make the decision legally, but we all agreed.  They gave her the thickener.  No good.  Even if it had worked, there was no guarantee that she would live.  If she had lived, she would have had permanent brain damage and worse, her limbs would have to be amputated, the circulation was gone and necrosis had set in.  What kind of life would that have been for someone like her... No life at all. She would rather be dead.

        Silently, at midnight, I went to the courtyard alone.  I prayed to God to release her sweet spirit and take her home.  I couldn't stand to see her suffer any longer, none of us could.  I could not hold her here, knowing that she would suffer.  Shani didn't deserve that.  She was one of the best people I ever knew in my whole life and I wanted peace for her.  God was kind and listening.  She passed into eternity at 7:50 a.m. the next morning.  We didn't have to wait any longer.

        A priest came that morning early to give her the last rights.  We are not Catholic, but I appreciated his being there for all of us.  We all spoke to her and told her how much she was loved and how we would miss her. 

It was over.

        We left, after some discussion of an autopsy.  We wanted, and needed, to know what had happened to her.  Phillip signed the paper work and we all left to go home.  I remember how bright the sunlight seemed when we were driving home and how unreal the whole scenario.  We fought and lost.  She was gone, but would never be forgotten.  She would live on in our hearts and minds; and in her young son Nicholas.  That was the twenty-fifth of April, on a bright sunshiney day.

After a few calls of inquiry, we finally got the results of the autopsy back on September twenty-sixth.  Five months had passed since her death.  The final diagnosis was; of course, death by Aspergillosis and Bleeding Diathesis.  It took that long to find out what had happened to her.  Tests and more tests.  Samples sent out and back again.  Finally, the results.  No more waiting.

        Aspergillosis is a relatively harmless fungus to most people.  It can be deadly when contracted by those with a weakened immune system.  Those who have diseases that compromise the immune system, should be aware of the risk of fungal infections, and take care to prevent complications due to exposure.  Those who are suffering from AIDS or are going through treatment for cancer are more likely to develop serious fungal infections caused by types of fungi; that seldom, if ever, inflict harm in people whose immune systems are functioning normally.  Such infections include mucormycosis and aspergillosis.  Also, corticosteroids and other immunosuppressant drugs can leave a person more at risk of being infected with a fungus.

        I think it is important to remember here that most fungi are specific to a particular area, and that some fungal infections are more common that others, depending on the geographical location.  For example, in the United States, coccidiodomycosis occurs almost exclusively in the Southwest, whereas histoplasmosis is common in the East and Midwest, especially in the Ohio and Mississippi River valleys.  Blastomycosis occurs only in North America and Africa.

        Aspergillosis, caused by the fungus Aspergillus, is an infection primarily affecting the lungs.  But, as in Shani's case, it can affect the whole system and all vital organs.  The Aspergillus fungus is commonly found in compost heaps; around the house; on food; and on the body.  Some people experience an allergic reaction to the Aspergillus present on their body surfaces even though it hasn't invaded tissues to cause an infection.

        Aspergillosis occurs when Aspergillus organisms on the body surface invade the deeper tissues; such as the ear canals or the lungs; particularly in a person who has had tuberculosis or bronchitis.  A fungus ball (aspergilloma) can grow in the lungs.  The ball is composed of a tangled mass of fungus fibers; blood clotting fibers and white blood cells.  It gradually enlarges, destroying lung tissue in the process.  In people with suppressed body defenses, such as those who have had a heart or liver transplant, Aspergillosis can spread through the blood stream to the brain and kidneys.  It is a recognized but uncommon infection in people with AIDS.

Aspergillosis of the ear canal causes itching and, occasionally, pain.  Fluid draining overnight from the ear may leave a stain on the pillow.

The fungus ball in the lungs may cause no symptoms and be discovered only by a chest x-ray.  It may, however, cause repeated coughing up of blood, and rarely, severe, even fatal, bleeding.

        Infection of the deeper tissues makes a person extremely ill.  Symptoms include fever, chills, shock, delirium, and blood clots.  The person may develop kidney failure, liver failure (causing jaundice), and breathing difficulties.  Death can occur quickly.  (and in Shani's case it did.)

        The symptoms alone provide strong clues for making the diagnosis.  If possible, a sample of infected material is taken and sent to a laboratory for culture.  it may take a few days for the fungus to grow enough to be identified, but treatment must be started immediately, because this disease can kill quickly.

        Aluminum acetate (Burrow's solution) is used to bathe an infected ear canal.  The fungus ball in th lung is usually removed surgically.  An antifungal drug, such as amphotericin B, usually is infused intravenously.  Ketoconazole and itraconazole are alternative drugs that are taken orally for an infection of the deeper tissues.  Some strains of Aspergillus, however, are resistant to these drugs.

        The information on Aspergillosis was taken from the Merck Manuel online and used for your benifit.  Please be aware that if you have any questions regarding this material, Lupus, or any fungal infection, go and see your family doctor and ask for his/her advice!  If you think you might have contracted a fungal infection then say so and have them do the proper testing to make sure.  I did not post this to try and scare anyone, but I do think that it is an issue that all of us need to be aware of.

        Cases like Shani's are rare, but they do happen.  Lupus is a serious disease and can have complications related to it.  The best thing that any of us can do is to educate ourselves and others around us about these issues.  That is my primary intention here, so that you can become aware of this issue.

                With love and respect for all of you,

                                                    Shani's Mom.
 

               Shani Delane Proctor-Viramontes was buried at the Santa Paula Cemetery, courtesy of her cousin and one of those that loved her dearly, Carol Diane Cutright.  She was buried next to Carol's mother, Louise Cutright.  Her service was held at the Pierce Brothers-Stetler Mortuary on 8th street in Santa Paula.  The service was attended by family and friends of Shani and the chapel was so crowded with those that loved her; half of those in attendance had to stand outside...