I have posted this before but am including it in my “Catch Up Mondays” because it is important for those just learning about fungal infections and/or bone infections. This was first posted in May 2012.
Shortly after my third sinus surgery on August 1, 2000 I received news that the culture from the surgery revealed Aspergillus Flavus. I was placed on an antifungal. There was still a possibility that I would have to start IV antibiotics for osteomyelitis (bone infection) in my sinuses again. I had just had the PICC line for the last IV removed only six weeks before. Everyone kept asking if I knew of anyone else like me and I didn’t. After I started searching on the internet I found a group online through yahoo groups. Not only did I find the site and a wonderful woman to communicate with who had the same fungal sinus condition, I found a great support system made up of wonderful and caring people who were suffering like I was. To visit the aspergillus support group or the fungal infection trust: www.aspergillus.org.uk/newpatients www.fungalinfectiontrust.org
In my book I write:
The more I read, the more terrified I became. Aspergillus is not something that just goes away on its own. It is extremely difficult to get rid of. There was more than one form of Aspergillosis. ABPA (acute bronco pulmonary Aspergillosis) affects the lung. There was also the Allergic Fungal Aspergillosis (allergy to Aspergillus) as well as a colonizing form of Aspergillosis (Aspergillus spores colonize in a particular area of the body). The worst form was invasive Aspergillosis (In this form, the Aspergillus spores get into the blood stream). The invasive form usually results in death. Those were not words I needed to read especially in the depressed state I was in.
Every time I saw my ENT I asked, “Are you sure it isn’t invasive?” Each time he reassured me that he did not think so. I am on antifungals pretty much all the time because if I stop, a flare up results and the fungus takes off again in my sinuses making me very sick. While I do have to deal with this, I thank God every day that it wasn’t the invasive form.
Posted in Allergic to Life: My Battle for Survival, Courage and Hope, Antifungal Treatment, Chronic Illness and Treatment, Depression, Environmental Illness, Excerpts From Book, Mold, Mold Exposure, Sick Buildings
Tagged allergic to life excerpt, aspergillus, aspergillus support group, bone infection, chronic illness, fungal infection trust, IV antibiotics, osteomyelitis, PICC line, types of aspergillosis
Ok – we all at some point we all wish we could change something about ourselves. I have never really considered changing my nose although it isn’t a perfect nose.
I am not talking about wanting a new nose because of the way mine looks. I am talking about exchanging it for a healthy nose, one that didn’t get invaded by aspergillus from my sick building at work and one that doesn’t get infected more often than I would like. While I am grateful the infections are no longer defined as osteomyelitis (bone infection) requiring IV antibiotics, they are painful and frustrating none the less.
At one point I joked about getting a silver nose like the villain in the movie Cat Ballou. Thinking, mold couldn’t grow in the silver.
Or maybe I could exchange my nose for one of these below. They are all nice looking noses if they didn’t come infected with mold.
Or maybe I would try to see about getting Elmo’s nose.
A friend back in the beginning used to joke with me about how to get rid of the fungal infection. Her husband was an AG teacher and they also lived on a ranch. She told me she would just go and get some Dursban and pour it into my sinuses. Of course we were just joking and whenever I complained about my sinuses she would offer to run and get some and then start laughing. Can you imagine putting that in your sinuses? Not me.
What body part would you like new but not for cosmetic reasons? If I chose cosmetic reasons, I would be changing out a lot of parts.
Posted in Chronic Illness and Treatment, Environmental Illness, Medical Procedures, Mold Exposure, Multiple Chemical Sensitivity, Mycotoxins, Sick Buildings
Tagged Aspergillus Infection, bone infection in sinuses, Changing Noses, Dursban, fungal infection in sinuses, IV antibiotics, molde exposure, osteomyelitis, sick building, Silver-nosed villain from Cat Ballou, Sinus infection
I have had osteomyelitis in the sinus on more than one occasion The pain was so intense and the typical antibiotics were not making me well. My ENT consulted a colleague who suggested that I have a Gallium Scan. The colleague thought that I might have osteomyelitis (an infection in the bone). This was my ENT’s first encounter with someone who possibly could have osteomyelitis. I was directed to the x-ray department of our local hospital to have the test done.
A Gallium Scan is a test using radioactive material called gallium to look for swelling, infection or cancer in the body. The scan is a type of nuclear medical exam.
I arrived at the lab and was injected with radioactive gallium into a vein in my arm. I was told that the gallium would travel through my blood stream and if I had a bone infection it would collect in the bone. I was instructed to go home and come back a few hours later to allow the gallium time to travel through the blood stream. When I returned to the lab I was placed on a table and was instructed to lie still while a special camera able to detect gallium would see whether it had gathered in my sinuses. The test took me about thirty minutes. The result was that I did, indeed, have a bone infection in my sinuses. The treatment was six weeks of IV antibiotics.
After six weeks of IV therapy I was once again sent to the lab. The best way to determine if the infection was gone was to have a White Blood Cell Scan. Again, radioactive material was used. My blood was drawn and the white blood cells were isolated and tagged radioactively and re-injected into my arm. A scan was done a day later to see if the radioactively tagged white blood cells settled in the sinuses. While the test showed I was over the infection, I was uncertain because I still did not feel great and that little voice in my head said the battle wasn’t over. I was so right!
The question of how you know if a sinus infection is osteomyelitis was a search question. I think the Gallium Scan is probably the most definitive test from what I have read and is the test my doctor used. CT Scans and MRI’s can be ordered but may not show the entire picture. I would love to show you a picture of a Gallium Scan but don’t want to risk copyright infringement. Just imagine a typical x-ray with a bright yellow glow. The bright yellow glow is the radioactive gallium that pooled in my sinuses.
This is my experience with detecting whether or not my sinus infection was a typical infection or osteomyelitis of the sinus. Only a medical practioner can make the determination of whether or not someone has osteomyelitis based on symptoms and tests that he or she chooses to prescribe.
While preparing my manuscript, photos, etc. for submission to the publisher, I was asked for additional information: about the author, about the book, and a 1000 maximum word “teaser”. I am including a portion of that teaser in my blog today. It was one of many scary adventures I have had since becoming sick and so sensitive to everything. Do you think this would entice someone to want to find out more?
That afternoon I could start my treatment using the new IV site and the pump. I began my IV in the kitchen as usual and went into the living room to place the medication bag in the fanny pack that I had received the day before. I was beginning to put the medication bag in the fanny pack when I became very dizzy and decided to read the medication sheet to see if this was a side effect of the medication. Staggering into the kitchen with my medication and fanny pack, I frantically tried to read the data sheet.
By the time I reached the kitchen my vision was going and I could not read the paper. I knew that things were not right, and I hurriedly tried to reach the phone to call for help. As I started back into the living room, I began having difficulty walking. The IV bag dropped from my hands and dragged along the floor as I tried to get to the phone.
The phone was on the table near the sofa. I lost my balance and fell onto the glass coffee table and then landed on the floor between the sofa and the table. I tried to pick up the phone but I had no control over my arm. As hard as I tried, I could not get my arm to move for the phone.
Minutes seemed like hours. I cried and prayed. An eternity seemed to pass before I managed to get the phone in my hand, but it was no use to me if I had lost my vision and could not see the keypad. I tried frantically to just push buttons in hopes of at least getting the operator but nothing happened.
My fear began to grow. I was home alone and I could not get help. Rick had left for a doctor appointment as I was starting to prepare the IV. He would not be home for a while. I could not yell for help because no one would hear me, and at this point I kept going in and out of consciousness. I was so sure that Rick was going to arrive home from his appointment at the doctor to find me dead. I blacked out for a couple of minutes and then managed to find 9 on the keypad. I worked my fingers up and across until I was able to punch the 1 key.
Hopeful that I had punched the right keys, I waited for an answer at the other end. Then there was a voice. I made it through to 911. I spoke with the dispatcher and explained my situation. I told her that I was having an allergic reaction to medication and needed help. The dispatcher assured me that an ambulance was on the way.
Posted in Allergic to Life: My Battle for Survival, Courage and Hope, Depression, Environmental Illness, Excerpts From Book, Medical Procedures, Mold Exposure, Mycotoxins, Reactions, Sick Buildings
Tagged acute allergies, allergic to life: my battle for survival, anaphylaxis, drug allergies/reactions, environmental illness, hope and courage, IV antibiotics, multiple chemical sensitivity, PICC line, sick building, sinus infections