A couple of days after the emergency surgery on 1/30/2010 to literally save my life, one of my infectious disease doctors (I had 5) asked me what I thought happened. I told her that I thought it was a “Perfect Storm” of sorts and she agreed. You may ask, what contributed to this alignment of the stars, fate or ill luck:
- Chronic Illness of Systemic Lupus and Type 2 Diabetes – both autoimmune chronic diseases (however, SLE was in remission and the A1C for diabetes at the time of surgery was 6.5 – well controlled) as well as allergies including molds, but was never told the types of molds nor how to control the environment;
- Stress in a high stress job at a major teaching hospital working sometimes 50-70 hours in a week, wife, mother and sister. Spending over 25 years in senior health care management positions in a hospital setting;
- Lab reconstruction in our department and in the research department over my head where primates were kept – many times would come into work in the AM with debris from overnight access to floors above;
- Sitting under air vent – would start to cough violently to the point of tears and losing my breath whenever it was moving air;
*Getting headaches with left sided vision flashers – was told it was “menopause” over the course of 4 months prior to home water damage with back-to-back sinus infections. I now have permanent vision loss in the left side as a result of the fungal ball and damage;
- Severe water loss at my home which required me (per the insurance adjusters instructions) to work with company to inventory wet damaged goods – was never given any personal protective equipment to wear (which I found out after wards was quite important);
- Many good well meaning physicians (Ear, Nose and Throat) and dentists (general and specialists) who for seven weeks kept pointing the finger at each other for ownership of the problem without doing any basic diagnostic work like blood work, CT scan, MRI, etc When they saw the lesion during a dental procedure, took pictures and still waited 2 weeks to send me or an oral surgeon. Multiple antibiotics and prednisone medications given – I mean many and that contributed in a big way to suppressing my immune system to the brink of total collapse or perhaps total collapse that allowed me to become a host.
All of this converged over the course of seven months prior to the emergency surgery of which the last seven weeks were spent quite ill. The date December 15, 2009 at 9:08 am, I awoke with the worse facial pain I have ever had. It radiated across my left cheek bone over and over again – it just would not stop and it did not until the surgery on January 30, 2010 – pain medication just would not touch it – I was told that I lived through my left upper jaw being eaten away from an invasive fungal ball along with several other flesh eating bacteria. I won’t get into details here, but as a patient to have to literally beg for tests and answers to todays’ world in my humble estimation is quite disrespectful. It needs to be said that if I did not, in my head and heart know that something was very wrong with me and kept advocating for myself – I surely today would be six feet underground at the cemetery in the next town over as a neighbor of the famous playright Thorton Wilder – yes, we do own a plot near Mr. Wilders’ final resting place!
What did they find/do/initial outcomes:
- Pathology showed invasive fungal ball that penetrated into the bone marrow – “highly suggestive of Mucor” along with two strains of actiomycoses and several other staph bacteria;
- As of result of the bone loss lost the left upper jaw, left maxillary sinus and half of the left side hard pallatte;
- Renal failure from Amptherican B, switched to Vfend and when Mucor was grown, switched to Posaconozole which thankfully did work; however, they tell me since the hypae was broken and there were many, I could have had aspergillus as well – they will never truly know.
*ANA’s for the SLE were positive and stayed positive for over six months after surgery;
*Had surgery 1/10/11 for early stage (Ia) Uterine cancer which they thought I probably had at the time of the invasive fungal ball which makes total sense in regards to my overall general health and immune system integritity.
Bottomline, where am I today you may ask:
- On long term disability working 20 hours a week in a computer oriented job in a library where although I was told I would not be around books, I am, but am dealing with the envioronment as best I can;
- Had allergy testing and am allergic to aspergillus, mucor, pencillium, fusarium and several other molds;
- Learning to control my home and work environments regarding daily mold exposure. That has been a work in progress, some days are better than others and I’ve learned what environments to avoid (barns, museums, antique stores, caves,etc.), walks in the woods (which I miss the most);
*Dealing with keeping my diabetes in control and trying to lose weight;
*Dealing with anxiety and depression while I get used to my “new normal”. But, I will never get used to young children looking at me and turning away in fear when I talk – those images are always with me – I do feel and am disfigured, but always have a happy upbeat front, it gives me purpose and focus on what positives lie ahead for me!
*Trying to get $25,000 US dollars to fix my mouth so I can have false teeth/jaw to help with speech, eating and general appearance – I can’t remember the last time I smiled with my teeth showing – two insurance carriers and medical/dental insurance denying coverage based on scope of services, dollar limits (total of $3K per calendar between all insurance carriers).
*Try to live eaBecome a partner with your patient – not an adversaty. It is not a question of who is right or wrong, but a greater question of what is the best, current, safe and proactive treatment for my patient to ensure a quality of life…that that is all that we want in the end…the best quality of life and a partnership with our clinicians.ch day to the fullest and give back where/when I can as thanks for the second chance of life.
However, for the record, I am so better off than many and am thankful for that and for the support of the Aspergillus Patient site, in the US we have no such program/support and many of us were struggling until we found knowledge, support and comfort from others who are meeting the same challenge to survive and I thank everyone for that…from the heart!
My wish for clinicians – Become educated in fungal related disease. Keep breast of current trends, treatment and research. Acknowledge that fungal and invasive fungal disease can and does invade the human sinuses. You have busy jobs and lives and it’s easy to get on auto-pilot and narrowminded, but so much is at stake you know and fungal related disease is increasing in the general population – I am a perfect case in point.