Sue Hurlburt
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
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.
September 2011
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Steph Smith
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content" custom_margin="8px|auto|8px|auto|true|false"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
This portrait of Steph by her mother Liz is reproduced here as one of only three recorded cases we currently know of where a healthy person has been struck down with invasive aspergillosis after an accidental exposure. We do not know if Steph accidentally inhaled a lot of aspergillus spores but it seems likely and serves to illustrate that these spores are too small to see - our best defence is to take note of the places where exposure is most likely to occur - read this leaflet for more information.
Stephs family and Lewis her partner have gone on to raise well over ten thousand pounds to help us research ways to detect aspergillosis earlier and to treat it more effectively.
Steph’s ambition, from a little girl, was to become a primary school teacher and she had strived so hard for four years for her B. Ed (Honours) Degree in Primary Teaching at Aberdeen University. A promising career which she was so suited and gifted to. She had been on her final three month placement in her former primary school in Nairn when she became unwell. At first it was thought that her symptoms were purely her asthma, and therefore this was what she was being treated for. However, on Tuesday, 31st. March, 2009, with her breathing causing her much distress, Steph was admitted to Raigmore Hospital in Inverness with a serious asthma attack and within a few days she was diagnosed as suffering from the disease known as ‘aspergillus’. This dreadful disease tragically got a hold of Steph and her immune system was unable to fight it off. The disease had become so aggressive even in that short space of time that it literally invaded her lungs and body, and antibiotics, specifically for this type of fungal infection, were ineffective in treating her.
Aspergillus is an illness, which until it touched our lives in April 2009, was unknown to us. Steph, was a beautiful young woman, in every sense of the word, both inside and out and who at the age of 21 had a tremendous life ahead of her.A vibrant, caring, thoughtful young woman with a zest for life. She was a healthy and active young woman who was an accomplished highland dancer and ballet dancer, being a former member of the Scottish Ballet Junior Associate Scheme and also a member of Ballet West. She was a Young Leader within the Girl Guides working towards her Queens Badge, a former Head Girl of Nairn Academy and as a member of the school’s Samba Band travelled to Latvia and also played clarinet in the Inverness Wind Orchestra. An extremely active young girl where the word “No” was never part of her vocabulary. She had a heart of gold, was so selfless and with her trademark ‘smile’ she was immensely popular among her peers and was everybody’s’ friend. A very mild asthmatic all her life but it was a condition which never hindered her in her activities in her all too short life. Such wonderful times lay ahead for her but tragically, just a couple of months away from graduating, she was struck down with this dreadful disease which cost her her life.
Our lives have changed beyond recognition following Steph’s untimely loss. We truly hope that through our efforts we can spare another person suffering as Steph did, and also save another family from having to go through the pain of losing someone they love to this cruel and distressing illness. A loss which goes beyond measure.
It was a tremendous privilege to be invited to attend a private Graduation Ceremony at Aberdeen University, on 7th July 2009, in Steph's honour,. where we were presented with her degree ~ B. Ed. Aegrotat Primary.
Liz Smiths tribute to her daughter - Patients Support Meeting Edinburgh 2010
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Serena Wells
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
I was diagnosed back in 2006 with Invasive Aspergillosis in both the upper lobes of my lungs. I have been on and off several different Anti-Fungal's over the last 4 years.
I am currently on Noxafil after my doctor's consulted with Dr, Denning, after a very scary time in December when I was coughing up cups of blood. I had 5 arteries plugged in my lungs to stop the bleeding. I have done very well with this medication and it beats the IV medication Caspofungin I was on for almost three years.
Thanks to Dr. Denning for his expertise in the field without it and the kindness he has shown we were not sure what medication to try next and for how long. I have a great respect for all the doctor's that have helped in my care over the last few years as they are very caring and concerned doctor's with compassion many seek.
I feel blessed to of been living in Vermont when I was diagnosed and found a great team of doctor's to care for me and help my family through all the trying times.
Thanks to everyone on this group and ours for all the support you have shown.
Stay Strong
Serena
Aspergillosis Patients Support Group
Aspergillus Association of America
I am the Founder/Executive Director of the Aspergillus Association Of America. We are a non-profit organization located in Vermont,USA. We recently celebrated our 1st Anniversary back in June 2010. Thank you to all that have supported our organization during this time.
We give many thanks to Graham and the team in the UK for all of their wonderful support they have given to the thousands of people who suffer from all forms of Aspergillosis. Without their support and knowledge we would all be feeling very alone.
Thanks to all of you who have shown support to all that have joined and helped to make someones day brighter and given them hope in their times of need. We all need each other.
Stay Strong
Serena Wells
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Roberta Bentley
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
I was 10 yrs of age with asthma, not as bad as my brother, but parents sent me to asthma clinic in switzerland. our clothes kept in damp cellar. came home after 6 weeks,having lost 2 stone (28 lbs). mum took me to gp who said "dont fuss".
Mum then took me to middlesex hospital where they kept me for 4 months in children's section. they said it wasn't pneumonia, wasn't TB, it was UNKNOWN disease, this in 1953. Gradually worse, when i was 24 taken to brompton hospital in london where they diagnosed aspergillosis. now known as ABPA. Still with Brompton, although my prof did not tell me about Itracanozole, but a dr in usa said I wasnt treated well at Brompton, i should be on itra. When i asked my gp, she laughed, "you dont need it". found out she is in charge of money at surgery, but asked the Brompton, luckily the new head of dept put me on it 11 years ago.
My regime every day, is pd, postural drainage, as suggested 40 years ago at Brompton. Without pd I would be unable to breathe. I also for 21 years go to a gym 3 or 4 times week.
Roberta (Bentley)December 2011
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Peter K
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content" custom_margin="5px|auto|5px|auto|true|false"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
March 2009
A case of surgical removal of an aspergilloma.
- History
- Treatment
- Considering operation
- Operation
- Post Operation
1. History
In 1974, I was diagnosed with a large pneumathorax, a collapsed right lung. Attempts to inflate it failed and after several weeks in hospital, with a vacuum pump attached, I was then transferred to the Copenhagen University hospital. Here, I underwent an operation that ended up in rather a mess. It appeared that my blood was hesitant to coagulate, and over a week I was re-operated four times, received much blood and ended up in a respirator where I spent two weeks while the internal bleeding slowly came to an end.
The recovery period was long. After three months I went back to work, but it was more than a year before I was physically back to where I had been.
One thing I did not know – the surgery had left a small cavity, about 27 cm in diameter, in my upper right lung lope. Apart from another spontaneous pneumathorax in my left lung, which this time was successfully fixed by another open thorax surgery in 1986, I had no symptoms to speak of for a long time. I went back to exercising, travelled and worked hard with long hours. It was not until the summer of 2004, that I received the first signs that something was not quite as it should be.
2. Treatment
I was working in California at the time, and in the late summer of 2004 I developed what I and my GP thought was a seasonal allergy. I coughed, producing greenish thick sputum. It got worse, and the colour changed slowly to brownish. Then, on Christmas day of 2004 I had my first haemoptysis. It came spontaneously; my mouth filled with blood and I had to go to the bathroom and cough up fresh blood for a few minutes. Then it wore off.
My wife and I went to the emergency reception at our local hospital, where I had another haemoptysis while waiting to be seen by a doctor. After that I was sent home and asked to see my GP the next morning. However, during
the night I had another two incidents, went again to the hospital, and this time I was admitted – to isolation in a room with elevated air pressure. When nurses came in, or my wife came in, they had to wear masks. The indication, of course, was TB. Lab tests, however, turned out to be negative, and after a few days people no longer wore protective gear when seeing me. I was given heavy doses of antibiotics intravenously for several days, and then sent home.
Things went well throughout January 2005, but then, in February, I had another spontaneous incident as I was walking down the street. This time I went straight to the pulmologist who had seen me at the hospital, and he said “it’s a long shot, but let us test for Aspergillus”. It turned out to be positive, and the diagnosis “Aspergilloma” was derived. Aspergillus Fumigatus, it was. The fungus ball was sitting in the small cavity I had in the upper right lobe. Such cavities usually come from infections like TB, which I had never had. But all the messing with my thorax and my right lung in 1974 must have left the cavity there.
I was 65 then and had been considering retirement or semi retirement for some time. My wife and I then took the decision; I left my job in California and we went back to our native Denmark, from where I continued working as a consultant and advisor , on drastically reduced hours, but travelling internationally. I signed up as an outpatient at the pulmonary infection department at a large hospital in Hillerød, north of Copenhagen. I was put on a long term mix of antibiotics and itraconazole, and a year later, in spring 2006, it really looked as if I had got rid of the infection. I was taken off medication. But late in 2006, I started coughing up red sputum and was put on a daily long term dose of itraconazole. In March 2007, I had another incident of haemoptysis, and throughout the year I had two or three other incidents. In the autumn of 2007 I travelled to Manchester, England, to consult professor Denning. He would, he said, normally have suggested surgical removal of the aspergilloma, but due to scarring from my messy lung surgery many years ago, it was not advisable. So instead, he recommended embolization if the haemoptysis’ got worse.
Indeed, an operation had been discussed during my consultations at the Hillerød hospital, but the idea was abandoned due to the presumed high risk.
The itraconazole “maintenance treatment” continued into 2008, but in the late summer the frequency of haemoptysis increased. In August, for example, I had them almost every night.
3. Considering operation
At this time I decided to consult a well known thorax surgeon at the university Hospital in Odense, Denmark. The purpose of this was to get a better understanding on my part about how he would carry out such a procedure, if he should do it. He had prepared himself well and explained how he would suggest a “keyhole” operation, performed by himself and a
colleague, to remove the entire lobe in which the aspergilloma was sitting. He even showed me a video recording of a similar removal of a lobe with a cancer tumor (with his patient’s permission).
Back in Hillerød I told the pulmologist I had been seeing for a long time, about my visit to Odense. We concluded that, in spite of the risk, it was best to have this operation done, as the long term prognosis looked a bit sinister. So, on my request, he referred me to the hospital in Odense.
4. Operation
In November 2008 I was admitted to the hospital in Odense. The operation took five hours, and the old problem with my blood being slow to coagulate arose. Special drugs, now available, were used to stop the bleeding, and eventually my waiting family was told that the operation had been successful. Meaning, that the lobe with the aspergilloma had been removed in whole and without any damage. I did, however, develop a serious bleeding stomach (duodenum) ulcer due to stress from the surgery, and lost a considerable amount of blood that way – which had to be replaced.
The cavity, it appeared, had developed a hard, almost bony, wall, but fungal filaments had actually penetrated it. These filaments were found to be dead, however, probably due to the Itraconazole maintenance doses; but I was later informed that this had been “the eleventh hour”, i.e. the infection could have turned invasive if I had waited any longer.
5. Post Operation
It is a normal procedure to have several hoses draining the thorax cavity over the first few days after the operation. Samples were taken from the drains, and no Aspergillus was found. However, blood tests taken a month later, in January, showed Aspergillus antibodies. A CT scan revealed nothing unexpected. But blood samples did indeed suggest that the fungus was still there, a rather disappointing conclusion.
However, a later CT scan and blood tests, in March 2009, showed that – apart from the missing lope – everything was normal, and the level of Aspergillus antibodies had almost shrunk to zero. The doctor’s opinion is that the first analysis showed a reaction to Aspergillus which would be found after many big surgeries – though normally not checked for. And that there is no fungus left in the Thorax after the removal of the lope.
Peter, April 22nd 2009
Post Scriptum November 23rd 2011
It has now been three years since the surgery. Over the first two years I had quarterly blood tests, xrays and consultations at Hillerød Hospital. This frequency is now down to twice a year. The last tests revealed no antibodies at all, and I am leading a normal life with no restrictions. I haven’t smoked since I was 25, but I eat normally and varied, and I drink alcohol regularly,
mostly wine with food. I lost weight during and after the operation, but it is now back to normal for my height . At 72 now, I continue to engage in several physical outdoor activities , and also travel quite often; mostly for pleasure, but at times for business.
As time passes I grow more and more confident that I am free of the infection – and…consider myself lucky that I made the right choice. I owe thanks to the surgeon and doctors I have seen during this “ordeal”. Apart from being professionally competent, they also demonstrated a readiness to discuss all the details and various options with me, enabling me to understand my situation and make the decision. I am also tremendously thankful to my wife Gudrun, who supported me throughout, without a moment’s hesitation.
Peter
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Peter Allen
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content" custom_margin="10px|auto|10px|auto|true|false"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
I am 71 years old and have had problems with my lungs since I was 15. My first experience, when I was 15, was spontaneous pneumothorax. I had several partial collapses, mostly of my right lung. At the age of 18 I was treated by having olive oil injected into the pleural cavity of both lungs. When I was about 50 I was told that this treatment was used on several thousand patients, but never worked.
At the age of about 28 I contracted TB while working in Hong Kong. It went undiagnosed for two years. When it was diagnosed the condition was well advanced. I was feeling very ill and was coughing blood almost continuously. It did not help that I was on a ship going to South Africa with a ship’s doctor who had spent his working life as a missionary in Surinam and did not believe in antibiotics. He told me to eat liquorice and plenty of oranges. When I arrived in South Africa I was so ill I could not complete my journey to Botswana, but was admitted to hospital in Cape Town. This was New Year 1970. I was there for five months before I was fit enough to travel home.
Before the drug treatment for TB was completed, in August 1971, I had a severe haemoptysis and the upper lobe of my right lung was removed.
For many years after this I was quite well and fit, though my lung capacity was not good enough to allow me to climb higher than 8000 ft in the Alps.
In 1986 or 1987 I began feeling tired doing things that hitherto had been easy, but it was not until 1988 that I started coughing blood and went to see a doctor. I was sent to QMC in Nottingham where tests showed that I had bronchiectasis, but blood tests showed that I had been exposed to aspergillus. It was suggested that I should have the expanded middle lobe, now the upper part of my right lung, removed as treatment. The operation failed because of calcification of the pleura. I then resorted to drug treatment and management for the bronchiectasis. This went on for several years. Various antibiotics were tried, but none made any impact on my condition. In general I was tired much of the time, I had no stamina and low fitness. Attempts to exercise to regain fitness took me quite early to the point of exhaustion and left me ill for days.
In 1991 a CT scan showed a small aspergilloma on my right lung, but six months later it had gone.
After that the condition became fairly benign, though my energy levels remained low and I always had a productive cough and haemoptysis from time to time. Only two or three times in several years was the haemoptysis moderate to severe, but then only for a few hours. My medication was simple. I took Serevent inhaler twice daily and antibiotics when there was an infection that needed treatment. My appointments to see the consultant became annual.
With increasing age bringing a lowering of my expectations of my physical capability I could have lived more or less contentedly like this, but in 2004 my condition took a turn for the worse. The cough worsened, the sputum became foul tasting and I became prone to severe infections, some lasting several weeks. The chest physician I saw in Nottingham put me on Azithromycin three times a weeks and tried various other antibiotics to treat the condition, all with little success.
In 2006 a CT scan and bronchoscopy found a large aspergilloma occupying a cavity in the upper part of my right lung. No treatment was given. Then in January 2008 a follow-up CT scan arranged by a junior doctor showed that the aspergilloma, measuring 68 mm across, was very close to the main pulmonary artery. He went into panic mode and told me that it was in danger of eroding the artery, which would leave me to bleed to death. Since the failed operation in 1971 I was regarded as inoperable. He prescribed Itraconazole, but I was given the wrong instructions for taking it. It made me so sick I lost my appetite and lots of weight.
I was not very happy, so I went on an Internet search and found the Aspergillus web site. I asked my GP to arrange for me to be referred to Wythenshawe, which he did and I have been a patient there since April 2008. First I was told that aspergillomas did not cause haemoptysis the way the doctor in Nottingham thought and that I was not in danger of bleeding to death the way he had described. Next I was put on voriconazole. I had stopped itraconazole myself because I was feeling so ill with it. I was also given a box of tranexamic acid in case of a bleed. I took Vfend for several months, but then I started to lose the feeling in my toes. Prof Denning stopped the drug and put me on posaconazole.
There was a three-month hiatus between Vfend and Noxafil, during which time my condition became very bad. My cough was severe and I was producing lots of sputum and mucus plugs. At times I could fill an eggcup during one cough. In August 2009, when I was now on posaconazole, I had a CT scan and found that the aspergilloma had reduced in size. What I had been calling mucus plugs were probably bits of dead fungus. The disintegration of the aspergilloma either started when I was on voriconazole or during the hiatus afterwards. It continued until January 2010 when it seemed to have all gone leaving a large cavity with no fungus in it, but which was part filled by fluid.
On 29th January 2010 I had a very severe haemoptysis. It coincided with my appointment at Wythenshawe. My wife drove me to the hospital from Nottingham with a bowl, some towels and a kitchen roll for company. Dr Felton saw me and admitted me for emergency embolizations. I had the treatment on the following Monday after another very severe bleed. I coughed up about half a litre of blood in 20 minutes. Several blood vessels were stopped off through the femoral artery, but the bleeding did not stop until the final vessel was stopped off from the upper arm. After this Prof Denning told me that I could stop taking posaconazole, but in May 2010 I was admitted for three weeks for a course of IV amphoterycin-B and tazacin.
My condition was fairly stable after that until November 2010 when I started coughing blood again with moderate, but prolonged bleeds about once a month. A CT scan showed a slight change in the shape of the cavity and in April 2011 Prof Denning decided that I should go back onto posaconazole. He thought that letting me stop it had allowed the aspergillus to recolonise the lining of the cavity and cause the bleeding to restart. Immediately the bleeding diminished, but in August 2011 I had another prolonged haemoptysis. After five days I phoned the hospital and was admitted for embolization. Five vessels were blocked off from the femoral artery. One, accessible from the arm, was left. Since then I have had one or two moderate bleeds, so I guess they are going to have to consider doing the one vessel that was left, but otherwise I do not feel too bad.
Peter Allen
November 2011
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Pat Peterson
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content" custom_margin="7px|auto|7px|auto|true|false"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
I had sinus problems in 2006 and it wasn't until I started losing the sight in my right eye that a very wonderful doctor got VERY concerned about me and made it his personal goal to solve what was happening to me. MRI showed I had mysterious fluid around my optic nerve that was crushing it.
I was given large doses of prednisone to relieve that. A biopsy was done of my sinus and Aspergillus Fumagatis was found in my sphenoid sinus. I started taking an anti fungal drug and was taken OFF the prednisone. I had a perfectly good immune system and was in excellent health otherwise, BUT the prednisone lowers your immune system. It amazes me to see that so many people with a fungus ARE taking prednisone which the fungus just FEEDS off of!!!! However, I understand with lung problems it is necessary to breathe. In my case, it was necessary to SEE. My doctor immediately referred me to the wonderful eye doctors, ENTs and sugeons at the UCSD Medical Center in San Diego. They opened a hole in my forhead and scraped out all the fungus they could find and removed some of the compromised bone where the fungus had traveled from my sinus to my optic nerve. Another surgery went up through my sinus and reamed them out! This whole scenerio happened over a 6-week period. They really did not think I would live. I started on Amphotericin B in vein, Voriconazole, and Flucytosine. I also did 30 2-hour treatments in a Hyperbaric Chamber. It is a fact that fungus cannot live in complete oxygen so the oxygen therapy was thought to help and certainly didn't hurt. I lasted on the Amphotericin B for only about 4 weeks, the Flucytosine about 6 months, but took the V-fend for a year. I had MRIs every few months to track return of the fungus. I'm still OK! This is all more than you needed to hear, but perhaps there will be something here to help someone else. Whenever I talk to someone with sinus issues I ALWAYS ask them to talk to their doctor about a possible fungus! It has been 5 years now, and I'm still perfectly healthy Not everyone is lucky enough to have all of their fungus removed surgically. I pray for good health to all. Thanks for listening!
Pat Peterson
Fallbrook, CA, USA
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Mike Firth - Diver
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content" custom_margin="9px|auto|9px|auto|true|false"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
Think twice before breathing off a bag
Appeared in DIVER November 2010
It was a cruel stroke of fate that abruptly ended Mike Firth's underwater adventures, but this UK diver is keen that his misfortune should serve as a warning to anyone tempted to skimp on kit hygiene.
Mick
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content" custom_margin="7px|auto|7px|auto|true|false"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
Hello
Here is my Aspergillosis story...
I started having problems with my health around the end of 2006. It began with problems eating then succumbing to emphysema due to smoking. I was diagnosed as having Dysphagia and I was loosing weight all the time. My family seemed to think that I simply wasn’t making an effort to eat, telling me to eat small amounts of food at a time, but they could not understand that the food was just not getting into my stomach, it was getting stuck in the food-pipe just outside the stomach and taking ages to work its way down (I later came to believe a fungus ball was lying dormant just outside my oesophagus, the doctors had diagnosed this as a hiatus hernia). As a result of poor diet my immune system was compromised.
I did stop smoking with little problem but soon I began to get one infection after another.
Doctors were often baffled as to the identity of a lot of the infections and as a result I had many stays in hospital while they constantly carried out sputum and blood tests until they could identify the offending bugs. Fortunately, they were always very determined and eventually identified most of the offending culprits and would promptly plan a medication schedule accordingly.
The first very serious threat to my health was in October 2009 when I was admitted to St Thomas’ Hospital suffering from malnutrition and lung infections which resulted in an eight week ‘touch and go’ stay in an isolation ward. I even got Swine flu during my stay. The hospital was magnificent though and an army of medical staff pulled out all the stops until they got me better again. I don’t remember the first few weeks as I was semi conscious most of the time but my wife told me later that the doctors had confirmed that I was gravely ill. Around this time the doctors found the Aspergillus in my lungs so they put me on V-Fend for that, and suddenly I was able to eat again and my weight started to slowly increase, even though I was coughing up huge quantities of thick sputum – and one consultant commented that I was like a sputum factory!
They finally got me back on my feet (wheelchair bound) and I was discharged on 2nd December 2009 – home in time for Christmas. I was discharged from the hospital with the following medications:-
Ethambutol 700mgs
Rifabutin 300mgs
Clarithromycin 500mgs
Moxifloxacin 400mgs
The above drugs (All Very Strong) were mostly for an infection they called “Pulmomary Mycobaterium Xenopi” :)
and the other bacterial infections present.
Voriconazole at 300mgs twice daily for the asper infection
Lansoprazole 30mgs for excess acid.
Carbocistiene for the mucus
Tiotriopium inhaler
Seretide inhaler
Salbutamol inhaler.
I was assigned a district nurse to help me out and monitor my progress. At this point I was unable to walk up the stairs in my house and my mother stayed at our home whilst my wife went to work for a few weeks until I was strong enough to negotiate the stairs and collect food. My health and strength soon started to improve due to good food and a healthy appetite.
Then More Problems… As a result of interactions relating to the cocktail of medication I was on, my eyes started to play up towards the end of March. At the beginning, for the first month or so, I started to see a square white light when I closed my eyes and this lasted about an hour after taking the Voriconazole. When I told the doctors about this (who quite often were registrars that changed frequently from one visit to the next) on two occasions they didn’t attach much significance to it. However, by April 2010 my eyes started to deteriorate rapidly to the point were I could no longer focus on anything or distinguish colours. As an example, if I stood face to face with someone I would not be able to see their features properly. An emergency visit to the clinic resulted and a doctor (who took it very seriously) stopped all medication and arranged for me to be seen by the eye casualty department immediately. By May I was being seen by eye consultants from all over because of the unusual circumstances and rapidity of sight loss. At one point I asked why so many consultants wanted to examine my eyes and was told the problem with the optic nerve deterioration was so unusual that they may never see it again. After the initial months, the deterioration stopped and about a year later I started to notice a slight improvement but I have now been told there is permanent damage to the optic nerve in both eyes. Just recently I was registered as partially sighted and received my CVI (Certificate of Visual Impairment) a few days ago.
I’ll now return to what happened to my lungs after I was taken off all my medications in April. During May I started getting heavy palpitations and really breathless for no reason and on 30th May I was back in hospital. When I had a chest X-ray it showed that the Aspergillus had eaten into my left lung so badly that only a small upper part is left and now that lung does not work at all. The right lung is also badly scarred and very holey.
At this point I was put on Itraconazole which stopped the rot but after a while I started coughing up blood and I was then referred to Manchester as they are the specialists in the treatment of CCPA and other Asper conditions.
I now breathe heavily all through the night and get very breathless very easily during the day. Multiple fungal balls in my lungs are also a constant threat to my health.
Best wishes
Mick
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Mary Jo
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content" custom_margin="26px|auto|26px|auto|true|false"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]
This story was sent in to the Aspergillosis Patients support group in 2001.
Mary Jo was an active member of the Aspergillus Support Group and she has suffered from Allergic BronchoPulmonary Aspergillosis (ABPA) for most of her life. This disease is caused by a non-invasive Aspergillus infection of the lungs. The fungus inhabits the air spaces of the lungs, living on the surface of the sensitive lung tissue causing inflammation but does not invade the lung tissue.
This means that although ABPA is not a rapidly fatal disease (i.e. unlike invasive aspergillosis, which needs rapid treatment), at the moment it is usually permanent.
The inflammation of the lung tissue can make breathing difficult, so steroids (e.g. prednisone) are used to control this. The antifungal drug itraconazole (Sporanox) has been recently shown to also help control the disease.
Part 1, early years, lung surgery and diagnosis
When I was a baby I had such severe eczema that my mother was afraid to even pick me up and hold me. The pediatrician told her that she could expect more problems with me later. His words proved to be very prophetic.
By the time I was 3 years old I had asthma. When I was 10 years old they took a chest x-ray and my pediatrician told my mother that I had "walking pneumonia." Naturally that was really the beginnings of ABPA. Anyone out there reading this who has ever been told they have "walking pneumonia" can rest assured that that was when they can certainly date the beginnings of ABPA. About this time my pediatrician left our clinic to go back to school to become an allergist. He told my folks to take me to a general internist because of the problems I was having. I was considered a little young to be going to an internist, and I am sure I was the youngest patient he ever had, but it was a partnership that lasted until his retirement just a few years ago.
About this time the decision was made to send me to the Mayo Clinic. They thought it was really strange that such a young child had asthma and bronchiectasis since they considered bronchiectasis to be an old person's disease. In those days the diagnosis of bronchiectasis was made by a procedure called a bronchogram as they did not use cat scans like they do now. This transpired in the late 60's. My left lung was plugged up and did not clear and they decided to do surgery when I was 12. The upper lobe and lingula were removed. Subsequent doctors have been extremely critical of the medical care I got at this time. They have claimed that at that time a diagnosis could have been made and should have been made and that the surgery should never have been done. Surgery is almost never recommended for ABPA. Mostly because the plugging can and does develop anywhere. When I was a freshman in high school I began to develop plugging in my right lung. At that time my parents began to wonder if I would live to see age 20. They never said much to me about this but I certainly knew that they were very worried. At this time I remember asking one of my doctors what they were going to do when every bit of lung I had was plugged up and they had cut it all out. No one seemed to have an answer to that. When I look back at that time when I was about 15 or 16 my sister claims that there was enormous anxiety with my parents. She claims there was extreme worry about my future or possible lack of it and terrible frustration at the lack of diagnosis and what that meant in terms of my ability to function at that time and what it would mean for the future.
I do not seem to have noticed it as much as she. My brother claims he didn't notice it either. When I was younger and they would put me into the hospital my sister would throw the most enormous hissy fits. I am pretty sure she thought I was never coming back. We would try to think of things to distract her. If I had been at the doctors while she was in school and if I had to go to the hospital my mom and I would quickly dash home to get a suitcase and then get out of the house before she got home from school because she would throw such fits it would be hard to get away from her. One year they even gave her a birthday present early but she ran after us as we drove away and chased the car down the street and threw her doll in the street and my dad had to chase her and bring her back into the house. By my sophomore year in high school the anxieties eased up because at age 16 I finally got a diagnosis. We now knew what was the matter with me. We also knew the prednisone was how it was treated. Ironically enough during these years my general internist had been treating me with prednisone. He did it out of desperation not really knowing that this was in fact the right thing to do. Probably he kept me alive. But he didn't clear my lungs either. Because he would put me on quick tapers. He was concerned because I was developing into a woman at this time and he didn't want to interfere with my growth or anything. He did it the best way he knew how to but he was really relieved to get a diagnosis too. From then on we were a little more aggressive using prednisone. This is 1972 into 1973.
Part 2 early college, inhaled antifungal drugs, systemic symptoms
By the time I was in college, fast tapers of prednisone weren't doing it for me. I was having too many plugs and we decided to put me on alternate day doses. This seemed to work better for me. But like many people with ABPA I was restless and dissatisfied with that and wanted an alternative to prednisone.
At the time there were some studies being done using antifungal drugs. This is now the middle 70's. My doctor and I decided to try inhaled Nystatin. We didn't know at the time that it wasn't effective against Aspergillus but we did it anyway. It helped a little but not a lot. It was very expensive and a lot a trouble, so eventually we abandoned it. I think it probably did help some but I didn't know at the time that in later years, tests would show a positive reaction to Candida which is the organism that it mostly works against. We later decided to try amphotericin B. This is a much stronger drug and is more broad spectrum. Again it was a partial success. We had some trouble with me tolerating it as it is very harsh and has an unfriendly pH. We took steps to try to neutralize the pH but it really didn't help. I used to get coughing jags from trying to inhale it. I couldn't use it every day because my lungs needed to settle down from it. It was sort of like trying to inhale rubbing alcohol or something similar. Very harsh and irritating. Eventually we abandoned that too.
I must say that when I was using it I felt that my lung secretions looked "cleaner" and were less brown looking, but during this time I had never really been able to successfully reduce my prednisone dose and that was my goal when I set out to do this. So it was a mixed bag. It was also a very expensive drug. Highly perishable and sort of difficult to work with. Eventually I just quit using it.
Now we are getting into the early 80's. For years I have contended with multiple symptoms i.e.:
Fatigue
Muscle and joint aches and
pains
Nausea
Diarrhea
Chest pains
Pleurisy
Pneumonias
Low grade fevers
I felt that I had exhausted everything that traditional medicine had to offer and it was time to look at alternatives.
I chose an "alternative allergist" and it was a good move. First of all he never turned out to be particularily radical. He was horrified that I had allergy shots for 10 years as a child. Yes they did make me worse, but had I had a diagnosis during those years we would never have done that either. Allergy shots are a big no no for ABPA and don't ever let anyone tell you differently. This guy did a lot of very complete allergy testing and I had been to other allergists. I found out that I cross react to every mold, yeast and fungi on the face of the earth. He seemed to have a very good understanding of mold allergies in general and I really learned a lot. He learned a lot from me too. He couldn't help me but it was a good experience. Later my other pulmonologist who disapproved of him had all the testing he did on me repeated and got exactly the same results. So everyone got educated that time around. We are now about 1985.
Part 3 ovarian cyst, and deflazacort
In 1985 I had emergency surgery for an ovarian cyst. I don't know how long I had it but I had no symptoms at all until I bent over in pain one day and did not straighten up until after the surgery. The cyst was the size of a grapefruit and I lost my right ovary and tube. I always regretted not having it cultured for fungus because you just never know. I feel that in terms of my overall health I descended into a downward spiral at this point in time. I had certainly always been in very poor health but for some reason I became a lot less functional after this incident.
As it got to be towards the 90's it became clear to me that I was not going to be able to work much longer and that I was going to have to start thinking about disability. I had always had fairly poor attendance and I could only work and not do much of anything else. My family did all my housework and shopping for me and when I got home from work I would take a bath and put on my nighttie and eat a little supper and crawl into bed. On weekends I would just vegetate.
One day in the mail I got a note from my brother along with a clipping from the Rochester paper. It stated that the Mayo Clinic was about to start clinical trials on a drug that was supposed to be "prednisone with no side effects." I decided that I would move heaven and earth to have that drug and so began one of the strangest adventures of my life.
The name of the drug was "deflazacort" and they were already using it in Europe. I already had a doctor in the pulmonary department at the Mayo Clinic. He did everything he could to get me into the study but it was in the allergy department and they did not want ABPA. Our next step was to get the FDA and the drug company to release it to us to just use individually and ignore the study. Again we hit a brick wall. To release a drug on a compassionate use basis the drug needs to be substantially different than anything else already available that is already FDA approved. We could not establish this, since deflazacort was already of the same class of drugs as prednisone. Since the drug was already being used in Europe it seemed that it would be a good idea to try to get some and bring it here. You see I was desperate. If it were everything I wanted it to be I would be able to take very large doses with little risk of side effects and probably continue working and maybe function better than I ever thought possible. Isn't that everyone's dream come true? I was ready to inconvenience anyone I had to,and I was ready to ruin myself financially if necessary. After all, if it worked it would certainly pay for itself. I hired an attorney who specialized in international law. She made a search of foreign doctors who went to American medical schools and who were now practising in their native countries. She wrote to them all. We got one response from a very kind Italian pulmonologist. He prescribed deflazacort for me. The American Express Company had it filled and it was sent by private courier to me. It was hand walked through customs by the courier. And yes. This was very expensive.
When I got the drug I had instructions for taking it. I went to see my doctor and we made the transition from prednisone to deflazcort. When the allergy dept. got wind of this they were very eager to know how much I was taking and how I was feeling etc. My doctor discussed it with them. Do you think that was the right thing for me to have ok'd that? Or should I have told them to go jump in a lake?
I stayed on deflazacort for about a year. I couldn't tell any difference at all between it and prednisone and neither could my doctor. I really don't know what happened with the Mayo Clinic study but I doubt that it ever panned out. As far as I know it never got FDA approval. Had it worked out we would all be on 100 mg of deflazacort a day and going out dancing every night and in vigorous health. This is now 1991.
Part 4 Disability
In May of 1991 I applied for Social Security Disability. I just couldn't hold it together anymore and I was nearly killing myself trying to work. My attendance had gotten bad and I was just about on the verge of complete collapse. A friend of mine who has lupus and multiple chemical sensitivities gave me the name of a good lawyer. She had already been through the process. He was a very good lawyer but it took from May 1991 when I first applied until July 1992 when I actually received some money to settle my case. You definitely need a lawyer to get you through the process. My applications, re-applications and appeals were all denied and it got so far that I actually had a hearing. What was the problem? Certainly I was sick enough and I certainly had a well documented case going back many years.
Part of the problem was that my lung functions were still actually fairly decent despite years of wear and tear. So I couldn't qualify on that alone. The problem mostly turned out to be that there is no government listing for ABPA so I needed to qualify under equivalents. The day of my disability hearing was one of the worst of my life. I was going on trial to prove that I was too sick to work. That just made me feel sicker yet. The big surprise was that it turned out ok. Right before the hearing an elderly gentleman came up to me and introduced himself. He was the doctor that SS hired to be at the hearing. Almost as soon as the judge started the hearing he stood up and announced that the judge should find me disabled. Apparantly he had already made up his mind from reading the records. He then told the judge what equivalents to use. Asthma, Bronchiectasis, and Myasthenia Gravis ( to cover fatigue etc.). One thing that my lawyer and I really underestimated was how much weight would be given to the side effects of prednisone. We had emphasized the disease mostly but the doctor gave great weight to the side effects, and that surprised us a little. Since he considered it medically necessary for me to be on it he included the Myasthenia Gravis equivalent to cover my effects from prednisone.
The hearing did not last that long. I really don't know why they bothered at all since the decision was mostly made from paperwork they already had and it costs money to have a hearing like that. After the hearing the doctor asked to speak to me. My lawyer looked a little nervous but I said ok. He then commented on some of the medical care and treatments I had received ( as always critical of the surgery I had done) and then he proceeded to tell me that most people have a lot of trouble getting diagnosed. He really knew a lot about ABPA. He told me about a medical student at the medical school where he taught who developed ABPA. They diagnosed him with tuberculosis and then proceeded to nearly kill him. So that is a sample of what can happen in an ideal setting. After all, this student had dozens of first rate doctors looking after him. Suffice it to say that I was really relieved to have this settle.
Part 5 odd rashes, sporanox and some final thoughts
In the fall of 1993 I noticed that my skin was really going crazy. I have always had skin problems like eczema and acne but this was really different. It started out as hives. Then after the attack of hives, it would subside. However a few of the welts would remain. Not all of the welts would remain out of each episode though, only a few. This happened all over my body except for my face and scalp and hands. The remaining welts then would harden and raise and they were the funniest looking nodules. They almost looked a little like warts. But not all the remaining welts turned into nodules either. Some of them turned into open sores in little red spots. I looked like I had the measles or chicken pox or something. This was not the first time I had a weird skin problem. As a teenager I began to develop funny looking blood blisters on my hands. We never did figure out what caused that and I still get them to this day. With that in mind I didn't hold out too much hope for getting answers on this situation but went in to see a dermatologist nevertheless. She biopsied two of the nodules and sent them in. They came back negative for every culture she ordered - this time including tests for fungi. She didn't know what to do. The constant itching was driving me insane. After some frustrating visits she finally told me that she was positive it was somehow connected to my disease but that she just couldn't define it and she didn't know what to do for me. She took a large grocery store sack and filled it full of samples of creams and soaps etc., and gave it to me and wished me luck. One more thing for me to have to live with.
Fast forward to winter of 1997. For months I had been looking at advertisements in magazines for Sporanox. The drug company was touting it as a cure for toenail fungus. I knew that it killed aspergillus and they must have thought it reasonably safe if they were advertising directly to consumers. My doctor and I decided it was time to give it a try. He gave me a prescription and told me to start out slowly to make sure I tolerated it. We decided to try 1 100 mg capsule a day. I regret to say that I lasted exactly 3 days on that dose. I developed severe headaches from it, so it looked like it was going to be a failure. One morning a week or so later I got out of bed and looked down at my legs. My skin had really started to clear up for the first time in about 4 years. I thought I was imagining it so I had my folks look and they both were astonished. Only 3 pills and it was really improved. I began taking the capsules apart and dividing up the beads into gelatin capsules so that I could take small doses and my skin almost completely cleared up. My doctor was surprised and continues to this day to give me small amounts of Sporanox to keep my skin clear. Unfortunately I have never noticed much change in my lungs but I doubt that I ever take enough to do much that way.
This about wraps it up but I will just say a few more things.
The most important thing is to have doctors who genuinely care about your welfare. If they don't have all the knowledge, there is nothing to stop them from looking things up, but you can't substitute anything for a caring doctor.
My mother was my best friend and biggest champion. She had a great faith in God and her motto was to trust in Him and just live one day at a time. One time when I was having a particularily bad time she told me not to live one day at a time, but rather just live one minute at a time. And I leave you with that thought.
Appendix A prednisone
Most of us have a love/hate relationship with prednisone. I think this is prefectly normal. We need it to stay alive. It reduces inflammation in our lungs, helps clear plugs and thus minimizing damage to our lungs, and it helps lower our IgE and lessen allergic reaction. Unfortunately it also has numerous side effects. It can affect any part of the body. In my case it has caused weight gain, cataracts and easy bruising. It can cause osteoporosis and other skeletal problems, high blood pressure, ulcers, thin skin, delicate blood vessels, diabetes, cataracts, glaucoma, mental disturbances and many other problems. You should be in close contact with your doctor when using this drug. It also wouldn't hurt to look up all of the side effects in a drug reference book because you may develop something unusual that it would help to be aware of. For the most part prednisone should be used as sparingly as possible. The most sparing way to use it is a quick taper, when you are on it for about a week or so and the first few days are high doses which are rapidly dropped until you go off it. If that can't manage you properly then the next thing to consider would be alternate day doses. This is thought to minimize adrenal suppression. After that, more aggressive schedules would be daily doses and divided doses, which would be more than one dose during a day. The closer the doses are together the more you have an enhanced therapeutic response but the side effects are more pronounced too. As a teenager I was always put on quick tapers because I was still growing up, but by the time I was in college we switched me to a steady alternate day dose because the quick tapers weren't doing it for me and I had grown up a little more. Now I take daily doses.
If and when you taper you should work closely with your doctor. You should be given a tapering schedule to follow. This should be done slowly. To discontinue prednisone abruptly could result in going into shock and or dying. I am not joking. If you experience severe weakness while tapering you should contact your doctor, but first bump up your prednisone dose to compensate for what might be adrenal suppression. Anytime you are on prednisone you should wear medical identification for a period of approximately 2 years after you have gone off it. For most of us that means continuously wearing medical ID. This is very important in case you are in an accident or develop a sudden illness. Medical personnel need to know if they should assume that you are adrenal suppressed. They can compensate for this by giving you IV steroids. To not have this information available could result in your death. This is all information given to me over a number of years by various doctors.
Appendix B Bronchiectasis
I suppose many people wonder how they have come to have two lung diseases for the price of one. How does bronchiectasis happen?
When we develop plugs in our lungs from ABPA they lodge in our bronchial tubes. The mucus becomes jammed in there quite tightly and this causes the affected bronchial tube to literally stretch out of shape. It can almost look like a little balloon. You may be able to clear the plugging out eventually but the bronchial tube never really resumes its original shape. It has been permanently damaged. This can happen in many different areas of the lungs and I have had many different plugs in many sections and I have fairly extensive bronchiectasis. Most people with ABPA develop bronchiectasis from repeated plugging episodes. The best thing to do to minimize this is to use prednisone as best you can to keep the plugging to a minimum. The more bronchiectasis you develop the more problems you are going to have. These problems include decreased lung functions and increased susceptibility to infection. The loss of elasticity from the stretching makes it harder to breathe efficiently. Most of us have asthma too so that is a double whammy. We also are more prone to infection because of this because the lung's ability to clean itself is impaired by the distension. That is because it is hard to cough stuff out of the affected areas and these areas are more likely to accumulate mucus.
At a certain point some people can evolve from this into pulmonary fibrosis and end stage lung disease but this is not necessarily true in any particular case. I am now 45 years old and have had bronchiectasis since at least age 10 and no one has ever told me that I am going in that direction. My lung functions are certainly impaired but I am still in an upright position most days.
I have had severe bronchiectasis going back to childhood and I am infection prone because of this. I take antibiotics approximately once a month to manage this. You may also find some blood in you sputum occasionally due to this. However any time you cough up any significant amount of fresh blood you should be seen immediately on an emergency basis since this could be something more serious than just small amounts of usually drier blood that can go with having bronchiectasis. I believe that in my particular case episodes of pleurisy and chest wall pain are also connected to having bronchiectasis as well as being attributable to the inflammation and exascerbations of ABPA. Anyone out there who has received a diagnosis of bronchiectasis can probably be certain that this reflects the disease activity of ABPA for a period of time that is probably more likely to be a period of years and not weeks or months. These are things that I have been told by various doctors over a number of years.
14th July 2002
It is with great sorrow that we have to report that Mary Jo died recently from complications of the illnesses that she so eloquently wrote about in these articles. She wrote these articles and was an active member of the patients discussion group management team in her efforts to try to help people in a similar circumstances and in that she found much success - we will miss her.
The Aspergillus website team
[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]