GAtherton

Jim Azeltine

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In the late 80's I developed a lung condition that would just not go away, every other day or so I would get this horrible lung irritation and something would be "fluttering" in my lungs when I would breathe. It cause my to practically cough my guts out trying to get rid of these little plugs. After a couple of months of this I finally convinced my primary care physician to send me to a specialist because she had no idea what it was and why it was not going away on its own.

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by GAtherton

Jen W

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My history with Aspergillosis begins about ten years ago in 2000, when I was living out in the Diablo Valley in Contra Costa, California. I began experiencing seasonal allergies to tree pollen.I can't explain why these allergic spells began, when I had lived in the same area for a decade, but I suspect it may have been because I was under some emotional stress. Who knows. The allergic reactions resulted in severe coughing fits and coughing up plugs of mucus. The coughing fits would continue until they developed into pneumonia. The pneumonia was treated by several rounds of antibiotics. The pattern continued yearly until I moved out of the valley to the coast in the summer of 2009.

My new home came with a small weed-filled garden containing two overgrown fruit trees - an apple tree and a persimmon tree - which dropped fruit and leaves all autumn and into the rainy winter. One sunny Saturday in early 2010 I got out the rake and bin and began the clean-up. The next day I began coughing and developed the beginnings of pleuritic pain in my left lung. I had experienced short bouts (an hour or less) of pleuritic pain sporadically throughout my life [my mother told me she also had experienced these symptoms, and my youngest daughter has them, too. My pulmonologist is baffled by this!] so I was not unfamiliar with the symptom. However, I had never experienced sustained pleuritic pain like this. What began as a vague annoyance eventually developed to the point that it was affecting my daily life. I went to see my doctor and he ordered an x-ray and put me on antibiotics. My doctor consulted with the pulmonology department, and I was passed on to a critical care pulmonologist, who immediately ordered a CT scan and bronchoscopy. The CT scan revealed scarring in my left lung which probably caused by years of repeated pneumonias, and the result of the bronchoscopy revealed an acute case of two types of aspergillus infection, together with multiple bacterial infections. The pulmonologist consulted with the contagious disease specialists and ordered a battery of tests to try to figure out what underlying immune weakness could have resulted in this aspergillus infection. The test did not give any answers. I was placed on a 30 day treatment with two strong antibiotics and started a course of 400 mg/day of Itraconazole. I remained on the high dose of Itraconazole the rest of the year. Over time the pleuritic pain lessened, and subsequent x-rays and another bronchoscopy showed gradual improvement.

Early this year (2011) I again found myself picking up rotted fruit in the garden - and unfortunately without the face mask my doctor recommended I wear whenever I do garden cleanup. Big mistake. The next day I began feeling the pleuritic pain again, but this time on the right side. I emailed by doctor and described my symptoms. He was doubtful. It is highly unlikely, he said, that the aspergillus infection would crop up in another location. He ordered another x-ray and, sure enough, the right lung showed areas of occlusion. This time he ordered different blood tests looking for specific antigens to aspergillus, and other things I don't remember. The results showed that I have antibodies to Aspergillus fumigatus. He suspects that I was exposed to a large amount of Aspergillus spores when I picked up the rotten fruit and leaves in the garden, and that I have developed a severe allergy to A. fumigatus (and also A. niger). I remained on high dose antifungal medication for several months until x-rays showed no further areas of occlusion in the lungs. My doctor then told me to go off the medication completely.

I wonder if this is a good idea given my experience the past three years. I wear a mask anytime I work in the garden, and take care not to expose myself to known sources of fungal spores such as compost, damp basements, etc. Although my doctor feels that my case is solved, anytime I feel run down or feel a cold coming on, I experience lung pain again. This is not giving me a lot of confidence that it is all over. I suspect I'll be dealing with this fight with Aspergillus indefinitely.

Update 12/25/2013: Got myself to the ER last Sunday with 'chest pain' right in the center of my chest and referred pain up my left shoulder. At my age (53) and with a stressful job, I didn't want to take the chance of assuming it was the lungs, when it could be a mild heart attack. But my heart is fine, and I have another pneumonia. The initial lab results turned up 'rare mold growth' and 'refer to mycology'. Looking back at my medical records I realized I've been treated for pneumonia at least once a year since 2010 (when my records with Kaiser begin).

I realize most others here and on other support groups have much more serious conditions and live with severe health issues every day. I feel very fortunate that I feel healthy most of the time, and lead an active, athletic life. I do wonder though about the state of my lungs, and the reasons for the repeated lung infections. Is the mold living in my lungs and flaring up occasionally? Is it the house I live in? The doctors are baffled. 

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by GAtherton

Greg Howard

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Hi my name is Greg and have recently gone through the experience of having a aspergilloma .The good news is my story is a success story . Im a 38 year old Australian male

10 years ago while working in PNG I picked up TB , I was treated in Australia in the QLD health system. Although I was treated and cured I remember the doctors at the time explaining that the scar tissue in the upper lobes of my lungs could latter in life cause a few problems .

This time last year that "later in life" the doctors talked about tuned to fruition . I was at work and started coughing up blood enough to cover my hands I was rushed to hospital where they monitored me an thats where the hole process started . I was introduced to the various specialist and it was determined that surgery though generally the end result was to be avoided due to the difficulty and risk of the operation.I had a bronckosopy which didn't really identify much other then identify allot of blood and scar tissue which was stuck to the chest cavity. It was determined that though probably wouldn work they would try the antifungils first so I was given sporonox and sent home .

Within weeks I was back windsurfing and things where looking very positive thinking the drugs where doing there job , the doctor gave me clearance to travel where I was to join my wife in California for Xmas, During this trip I was skiing in Tahoe and giving it all I felt great . However On the flight home I could taste blood again.

A week later i was back in hospital coughing up blood about a cup full every night the doctor told me I had to stop windsurfing and booked me to See the surgeon , I had been on the antifungals for about 5 months now and it was now time to have surgery . The surgeon made it quiet clear that i was going to be in for a tough and painful time .

The surgery took 6 hours and i lost a lot of blood I remember waking and being aware of concerned people discussing transfusion if the bleeding didnt stop. Fortunately it did had within hours i was sitting up and drinking coffee . I had eight tubes coming of me and an epidural i could stand up in the shower although it needed two nurses to move and hold all the tubes .

10 days later I wad out of hospital and 7 Weeks later i was back at work . I never really had an issue with pain because of the drugs they give you, but the drugs themselves are pretty nasty , I was on oxycontin and developed a dependency do not go off this drug overnight I had really bad sickness similar to hat you see in documentarys about heroin addicts.

I was jogging about 6 weeks after the surgery and had my first windsurf about 2 month after . The doctor no longer wants to see me and if it wasnt for the massive scar and numb left chest i dont feel any different .

One of the strange things I found was that i never really felt sick and would generally only cough blood when I would go to bed . It as very tough 7 months and the hole surgery recovery was horribly and long but there are others doing a lot tougher.
Greg HowardAustralia
November 2011

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by GAtherton

Donna Asbridge

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I was diagnosed with asthma over 30 years and have taken inhaled steroids since the ’80s. In the spring of 2004, I started having more frequent asthma attacks coupled with longer recovery periods, shortness of breath, extreme fatigue, and pleuritic chest pain. Having taken antibiotics and steroids for almost a month with no improvement, I was hospitalized for IV medication and nebulized respiratory medications. I suffered from extreme fatigue, hallucinations (most likely from a low oxygen level) and chills that caused the whole bed to shake. I was sent home after two weeks of treatment but was no better than when I was admitted. For the next six months I continued taking steroids and got a nebulizer for home use. I took 15 courses of 5 different antibiotics with no improvement. Friends told me that my skin was grey and there was no life in my eyes.

I was admitted to the hospital again. This time, in addition to a Pulmonologist I was seen by an Infectious Disease specialist (ID). After about 8 days with no improvement, a sputum culture came back positive for aspergillus. I was told not to worry about that because it was commonly found in your mouth and could just be contaminating the sample. The pulmonologist took me for a bronchoscopy and said that he removed about 60cc (2 ounces) of green pus that filled all 5 lobes of my lungs and the lung tissue looked like raw hamburger meat. When I got back to my room I discovered that I had more energy than I’d had in a long time. I actually felt like getting out of bed and friends said that the sparkle was back in my eyes! It took 8 weeks to get final results. The only thing the specimen grew was aspergillus niger.

The ID said that it was too risky to put me on itraconazole because of the risk of liver failure. I told him that if I was dead I wouldn’t need my liver anyway, I was willing to risk it; anything was worth finding a way to get better. The Pulmonologist referred me to the Infectious Disease Clinic at Washington University at Barnes Hospital in St. Louis, MO, a short 30 minute commute from home. They too were reluctant to give me the prescription. They explained that itra is labeled to treat ABPA caused by aspergillus fumigatus. They had no idea if it would help me. I left there with the script and these instructions “try it for a month or two and see if you feel better”.

Having a diagnosis does not mean having a cure. I continued to work until 2007, taking breaks for inpatient treatment and working half days when I could not get through 8 hours. Needless to say the quality of my performance deteriorated and I stepped down from being the charge nurse in a busy cardiac cath lab. I took a leave of absence then worked a few hours a week to help with ancillary duties and was eventually eliminated.

I found the aspergillus website several years ago and have learned a lot about fungal disease from the site. However, most of the info does not apply directly to my situation as most studies reflect disease caused by aspergillus fumigatus. While my symptoms and problem is more like ABPA, I do not fit the diagnostic criteria for the disease. I am treated with advair, singulair, nebulized albuterol, xopenex, itraconazole, and on occasion, antibiotics and oral steroids. Generally after 3 mo of itra (200mg twice daily) my liver enzymes climb and I’d have to stop the med to give my liver a break, so I recently reduced the dose to 100mg a day and increase when I have a problem. Oral steroids make my blood sugar very high so I use metformin and insulin when I take prednisone. I also take D3 and calcium to deter bone loss.

In December of 2011, I was told that I have very low IgG and IgE levels and have started receiving IGIV (intra-venous immunoglobulin replacement therapy). Interesting to me because people with ABPA that I have interacted with on the fungal support group website indicate their Ig’s are extremely high. The doctor hopes this treatment will reduce the number of severe infections that I experience. Now I wonder which came first the fungus or the compromised immune system.

This has been a very frustrating and depressing problem to say the least. My life has changed so much. Chronic disease sucks! I try to be very compliant and I monitor my peak flow and blood sugar daily so that I feel like I have some control. I have become very attuned to mild changes and try to get on meds early which helps but I usually get violently ill regardless. I feel blessed that I can get off the oral steroids now and then to give my body a break, though for very short periods. Of course my pulmonologist does not treat many/any patients with the problem I have, so I have provided him info on treatment, etc. and we try different things to see how they work – I feel like a science experiment. I just hope it’s a long-term study. 

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by GAtherton

Coping with Aspergillosis

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So how does one cope when discovering they have an unwanted guest residing in their air ways or nasal passages, or any where for that matter?
My own experiences most likely mirror those of many ABPA sufferers but I thought I might mention them so any newcomers to our fungal community could be forewarned of what they may expect. So here goes.

Upon being informed I had Aspergillosis, and the fact that my consultant insisted I sit down and brace myself before he told me, was somewhat disconcerting to say the least! I really thought he was going to say I had cancer or a similar life ending disease or illness! In some ways he was right, aspergillosis can be life threatening, it is certainly life changing! 
For the first year or so, my life did not change that much. I continued to work, perform (musically) and play as before. My medication had obviously changed and some aspects of my normal daily routine began to differ from the past years. But I was coping well, I was in an out of hospital frequently but that did not faze me as much of my life had already revolved round hospitals, clinics, veterinary surgeries and Shamans caves. As far as I was concerned, it was simply another lung condition that I had to adapt to and I failed to see the importance at that time.
However as time went on as it does, I became more and more aware of the issues relating to aspergillosis, my health declined quickly, my medication arrived by the truck load and finally I could no longer do my job. 
I was retired on medical grounds in 2008 and at the tender age of 50 (ish), I found myself on the scrap heap of humanity!

Being home all day and every day while my wife went off to work destroyed my composure. Suddenly I was no longer the `bread winner’, I no longer had a career, nor prospects or even hope for the future. So I rapidly sank into depression!
Prednisolone and Itraconazole did little to ease my situation as I began to suffer the side effects of these two delightful forms of marvellous, modern miraculous medication. Boredom set in soon after, along with tiredness, nausea, weakness and insomnia. I began to gain weight and lose interest in all about me as the disease drew away my strength and resolve as blotting paper draws ink! I felt alone, useless, sick and all male pride, ambition or independency slowly and finitely seeped away.
I knew of no one else with this disease, I had no one to seek advice from, nor comfort or reassurance. Thoughts of suicide drove me to riding my large powerful motorcycle fast, sizing up walls that I could possibly drive the motorcycle into without risking others! I was referred to a psychiatrist in response to my consultant recognising my mental state and a Counsellor as a back up. All to no avail, I sank deep into depression and even self pity, something I have never done before!

But there is always a light at the end of the tunnel. It took me about two years to come to terms with my condition, my disease and my future status, but I have. Several things helped me regain my life and interests, several people contributed also. My family continually rallied round me with support and love, my friends offered understanding and awareness of my declining health. I changed the way I looked at each day and found new hobbies and interests that enabled me to combat some of the boredom.
I was forced to sell my motorcycle unfortunately, so I bought a boat which my whole family can enjoy. Yep I know I can simply slip overboard during a bout of depression but I won’t, never liked cold water, with or without soap! I no longer sing, dance or perform on stage, I have taken up writing in stead and I still do occasionally play a musical instrument.
Support and guidance from the online Aspergillus site gave me the welcome information that I was not alone; there were many others just like me! My consultants and GP’s learnt quickly and were soon able to offer me the treatments and advice I needed, and so after a hellish time I learnt to adapt in mind and body.
By researching the disease I discovered vast amounts of information that helped me live my life as fully as my limitations would allow. I discovered much of the tiredness, weakness, depression and the general feeling of being constantly ill could be laid at the door of the medication I was consuming. This enlightenment allowed me to compensate and spend my days appropriately.
At last, four years after losing my job, my pride, my independence and the loss of confidence as a man, I can begrudgingly face the world and my future once more. I now know my limitations, refuse to surrender and often ignore them, I know where I am and where I travel in the universe, I think!

So anyone new to this disease of Aspergillus, please take heed. At first the situation appears dire, and then it becomes dire. It may appear to take eons before the bubble bursts and you re-enter the sunlight and warmth of a `normal’ life, but you will.
I have learnt to live with my fungal lodger and the baggage that accompanies him. It was not easy but life goes one, so live it the best way you can!

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by GAtherton

Coping from a carers viewpoint...

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Well then, This is a bright shining light in a VERY dark tunnel .....

Bit of Background first I suppose ....

I met my wife on our first day of school (we were 5 years old!!) She has always had Asthma & a "bad chest" over the intervening 51 years & of that we have bin married 39 of em!!! Marie (The aforementioned Wife/Partner/love of my life/soulmate/mother of my children & EVERYTHING IN THE WORLD TO ME) has steadily got worse & worse with her Asthma.

Recently She was provided with an appointment at Preston Royal Hospital to see a "Chest specialist" ...after much probing & Many Many Tests we "THINK" we have a solution to her "Problems" ...she was diagnosed in Jan 2013 as being allergic to Mold & put on Intraconazole I'm sure we can deduce from that she actually has Aspergillosis (although the Blood test are yet to be revealed) but reading the messages & stories on here & other places 99% of them mirror EXACTLY the things Marie has been going thru. What can I do???...Well, I have taken early retirement from British Gas (I was Regional Manager fer the North west area of England & Southern Scotland) ....I've taken over the Daily House duties Hoovering/dusting/polishing/ironing ect & can report that I'm told I do a "fair" job of ironing various things (Not quite worked out how to get the "Pointy bit" of the Iron into a Bra yet though!!!!!!)

Marie has never "worked" since we got married in 1974 choosing to bring up our children & be a "Housewife" .... To see her slowly decline in the amount she can do around the house has taken its toll on ME, we live not 100 yards from the beach on the south end of Morecambe Bay & living here has always been Wonderful, we would walk the dog (& the children fer that matter) for hours just enjoying the sea air & the Sunshine. the last time we did ANY of the above was over 4 years ago we felt trapped inside with Marie not able to walk any distance at all she reached a point where she couldn't even do the weekly shop so I took over the day to day running of our home ..... this caused its own problems as even though I was doing all the things Marie used to do she was forced to sit there & watch (In a "managerial" role) ..& lets face it NOBODY can "Do" things like "YOU" are used to doing them.

Depression set in & we were at each others throats more than we were talking to one another....Fortunately Marie likes her "Gardening" & as we have a "Seaside" type garden (No grass/Lawn ect more just raised beds made from Driftwood we used to pick up from the beach after the stormy weather) she was able to "potter" about with me keeping a close eye on her & point me in the direction of which plant needed attention & which didn't ect all this seemed to help give her back her independence & more over give her something to look forward to (at present she is eagerly awaiting the appearance of her Daffodils & watching her trees show the first buds of spring ect.

My point here is I think many people treat the Disease & NOT the person the appropriate drugs are obviously a MUST HAVE but they will have a significantly reduced effect if the patient is "Not in the correct frame of mind" to "See the Benefit of the drugs. A Positive mental outlook, a Goal to strive for, a "Mission to accomplish" are all of HUGE BENEFIT to ANY person who is suffering from ANY disease.

So My humble advise to ANY person reading this is to ALWAYS MAKE SURE your nearest & dearest who ARE suffering have a GOAL TO STRIVE FOR, A MISSION TO WIN, If Marie WANTS to "Try" to accomplish something I NEVER STOP HER (I probably end up doing 90% of it) but then I ALWAYS make sure she KNOWS just how much SHE HAS DONE towards it.

To use an old saying from a TV programme ............."IT WORKS FER ME" I Do Hope this has been of some help to you that have had the Patience to read this far.

All the Best Keith & Marie 

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by GAtherton