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National Aspergillosis Centre Doctor Livingstone Chishimba holds a Q&A session
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National Aspergillosis Centre Doctor Livingstone Chishimba holds a Q&A session

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Livingstone Chishimba specialises in aspergillosis (amongst other things) and works at the National Aspergillosis Centre, Manchester, UK. ...

Livingstone Chishimba specialises in aspergillosis (amongst other things) and works at the National Aspergillosis Centre, Manchester, UK.
This is a regular monthly support meeting held at the NAC for patients living with aspergillosis.

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National Aspergillosis Centre Doctor Livingstone Chishimba holds a Q&A session National Aspergillosis Centre Doctor Livingstone Chishimba holds a Q&A session Presentation Transcript

  • LED BY GRAHAM ATHERTON SUPPORTED BY GEORGINA POWELL, MARIE KIRWAN & DEBBIE KENNEDY NAC CENTRE MANAGER CHRIS HARRIS TALK GIVEN BY LIVINGSTONE CHISHIMBA CLINICAL FELLOW AT THE NATIONAL ASPERGILLOSIS CENTRE NATIONAL ASPERGILLOSIS CENTRE UHSM MANCHESTER Support Meeting for Aspergillosis Patients Fungal Research Trust
  • Programme
    • 1pm Introduction
    • 1:05 Livingstone Q & A
    • 1:45 (More) Questions
    • 2:00 Tea & Coffee
    • 2:15 Discussions:
      • Lewis Fraser runs 100miles around Everest, climbs 12 000 feet
      • Carers
      • EPP
      • Did we win?
      • Any Other Business
    • 3:00 Close
  • Patient meeting -Q &A Dr Livingstone Chishimba University Hospital of South Manchester
  •  
  •  
  •   Q4
    • Does climate make any difference?
  • CAUSES OF ASPERGILLOUS LUNG DISEASE
  • Q5
    • Female going through menopause does that effect Aspergillus?
    • I ask this as I am 48 years and pre-menopausal and when i have a run of hot flushes my breathing is a lot worse....and I have to put my steroids up to help...
  • Fungi are in the air
  • Exposure in the garden
  • The tsunami and Sakseniae vasiformis
  • Source of Aspergillus
  • Hospital demolition Hansen et al. JHI 2008; 70: 259-264.
  • Heavy excavation! Nihtinen et al. 2007 BMT
  • ASPERGILLOSIS
  • Q16
    • From an epidemiological perspective, do you see an increase in the number of fungal related disease - both typical and invasive and do you think that it is related to global warming?
  • EU caseload of aspergillosis Immune dysfunction Frequency of aspergillosis Immune hyperactivity Frequency of aspergillosis Subacute Invasive Aspergilloma Chronic cavitary Chronic fibrosing Locally invasive . After Casadevall & Pirofski, Infect Immun 1999;67:3703 30,000 - 70,000 cases ~7,500 cases ABPA Severe asthma with fungal sensitisation Allergic sinusitis Acute Invasive
  • Is Invassive Aspergillosis increasing ?
    • Yes but varies with regions, age and underlying conditions
    • Frankfurt German
    • The prevalence rose from 2.2% (1978–82) and 3.2% (1983–87) to 5.1% .
    • mainly due to a significant increase in Aspergillus infections
    • The highest infection rates were found in aplastic syndromes (68%), followed by AML (25%) and AIDS (19%).
  • Incidence of Cryptococcus gattii infection British Columbia, Canada Source: BC Centre for Disease Control 2007 Cases per 100,000 population Average incidence 1999–2006: Vancouver Island: 2.8 cases per 100,000 Mainland: 0.65 cases per 100,000
  • Likely ABPA caseload 1%+ of adult asthmatics attending clinic have ABPA In UK - ~5,000,000 with asthma, >3M adults In Europe - >17,000,000 adults with asthma ~ 150,000 adults with ABPA in Europe ~12% of those with CF have ABPA EU CF population ~150,000 = ~ 17,500 patients
  • Key issues
    • Air as a source of human infection
    • Water as a source of human infection
    • Other environmental sources of human infection
  • INVESTIGATIONS AND DIAGNOSIS
  • Q9
    • From the specialist level to the local consultant level (Internist in the US), how is the information disseminated and monitored?  Who is responsible to identify changes - both good or bad? How does the "team" work operationally as well as clinically.
  • Q6
    • In diagnosing Aspergillus or related fungal disease (i.e. mucor),
    • what medical tests are typically ordered (i.e. specific type(s) of blood work, CT scans, etc.)?  Are they part of a standardized protocol?
  • Q7
    • In taking a patent's history to ascertain the cause(s) is there a standardized format/protocol that clinicians follow (i.e. identify chronic diseases, cancer patient, allergy to molds, etc)?
  • Q8
    • After diagnosis and treatment has begun, is there a standard protocol of tests to monitor the progression of the disease and markers to trigger additional testing/treatment?
  • Q10
    •  
    • Is there regular fungal disease related education for clinicians on a regular basis?  If so, what are the topics?  Is this education started in medical school? Is it a requirement of the medical school curriculum?
  • Q12
    • When a patient comes to you for a new or recurrent appointment, what information can they provide that will make your job easier?
  • Q11
    • What things can a patient - or patients' family - look for to see a  worsening change in condition. 
    • Specifically related to those patients that have an underlying medical condition as well as aspergillus or other fungal related disease.
  • A.11
    • Worsening condition: depend on type:
      • Acute:
        • ↑ SOB, cough, fever,
        • Coughing blood
        • lethargy
      • subacute. 
        • Lack of energy
        • Recurrent chest infections, breathlessness.
        • Appetite
        • Wt loss
  • TREATMENT
  • Q15
    • What is your opinion regarding treatment of mold allergies for those patients that have history of fungal or invasive fungal disease?  Does invasive fungal disease differ in approach?
  • Q20
    •  
    • Other than tablets or medication or surgery can aspergillosis be lasered or frozen?
  • Q21
    • Can it be killed by radiation?
  • side effects of medication
  • Q3
    •  
    • Are all makes of itraconazole the same?
  • Q3. Itraconazole
    • capsules or a solution (liquid) to take by mouth.
    • Absorbed in different ways. Take the brand prescribed.
    • Itraconazole capsules are usually taken with a full meal.
    • Itraconazole solution is usually taken on an empty stomach.
    • Follow the directions on your prescription label carefully, and ask your doctor or pharmacist to explain any part you do not understand.
    • Take itraconazole exactly as directed.
    • Do not take more or less of it or take it more often than prescribed by your doctor.
  • itraconazole
    • Your doctor may tell you to take itraconazole capsules with a cola soft drink if you have certain medical conditions or are taking any of the following medications:
      • cimetidine (Tagamet);
      • proton-pump inhibitors such as esomeprazole (Nexium), lansoprazole (Prevacid), omeprazole (Prilosec), pantoprazole (Protonix), and rabeprazole (AcipHex); or ranitidine (Zantac). Follow these directions carefully.
  • Q27
    • Since I've been on itraconazole, I've developed a tremor in both hands.
    • Has anyone else experienced this?
  • A27. What side effects can itraconazole cause?
    • diarrhea or loose stools
    • constipation
    • Gas
    • Tremors (1.65% patients)
    • stomach pain
    • heartburn
    • sore or bleeding gums
    • sores in or around the mouth
    • headache
    • dizziness
    • sweating
    • muscle pain
    • decreased sexual desire or ability
    • nervousness
    • depression
    • runny nose and other cold symptoms
    • unusual dreams
      • Most are short lived and dissappear
  • Thank you for your attention
  • Heavy excavation! Nihtinen et al. 2007 BMT
  • Himalayan Challenge
  • Himalayan Challenge The Himalayan 100 Mile Stage Race has been describe as the 'most beautiful' and the 'toughest' marathon in the world.  The Runners Times magazine ran an article on the marathon.  Their opening line was:  "There are lots of good reasons not to do the Himalayan 100 Mile Stage Race. The first three are that it’s really, really, really hard."
  • The Location
  • The route
    • Day 1 - October 18, 2011 (Tuesday) SANDAKPHU  24 miles  Day 2 - October 19, 2011 (Wednesday) SANDAKPHU  20 miles  
    • Day 3 - October 20, 2011 (Thursday) RIMBIK  26.4 miles
    • Day 4 - October 21, 2011 (Friday) PALMAJUA  13 miles
    • Day 5- October 22, 2011 (Saturday) MANEYBHANJANG MIRIK  17 miles
  • Donations so far www.everestendurance.co.uk
  • Thank You
    • Massive Thank You to Lewis & Aaron
    • from the Fungal Research Trust
  • Discussion
      • What do you want to hear about in the next 12 months?
        • Vitamin D – Moved to New Year - Livingstone
        • Fatigue & muscle pain – Have had speaker suggested
        • Cardiothoracic surgery
        • Help at home /everyday life (Used to be FALLS service at Manchester) – have moved
        • Weight loss – Xmas ‘Party’ Debbie/Marie
        • Cleaning & freshening products – breathing problems
        • Tips for travel insurance
        • Carers – coping, impact on their lives - see website
        • Anxiety/panic attacks – psychological methods to improve
        • Practical help with preparing for end of life
        • Vaccines – why we use them (Georgina – March?)
  • Manchester Carers
  • http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx
  • Expert Patients Programme
      • Will try to get a ‘Patients Champion’ to talk to us on the benefits of Expert Patients Programme
      • Originates in 1990, Stanford University USA
      • Bad title/name? Nothing to do with being an expert on your condition & getting stroppy with your consultant (!)
      • It is about better self management , becoming aware of all the services the NHS offers you. If we want our NHS to give us what we need, we have to take a more active role in telling them what that is.
  • Expert Patient Programme
    • The aim is that expert patients should:
    • Feel confident and in control of their lives.
    • Aim to manage their condition and its treatment in partnership with healthcare professionals.
    • Communicate effectively with professionals and be willing to share responsibility for treatment
    • Be realistic about the impact of their disease on themselves and their family; and
    • Use their skills and knowledge to lead full lives.
  • EPP benefits proven in the UK
    • Research Confirms Expert Patients Programme Benefits
    • In a randomised trial carried out by the National Primary Care Research and Development Centre, researchers found:
    • Increases in people's confidence to manage their condition
    • Gains in energy
    • Improvements in quality of life
    • High satisfaction with the course
    • Improvements in psychological wellbeing
    • Improvements in partnerships with doctors
  • AOB
      • New patients information leaflets (nearly) ready to go
        • Available NOW
        • Aspergillus bronchitis – coming soon
      • Funguide Cook book – keep sending in recipes
      • Donate by mobile phone – now in operation, automatically gift aided
        • Send ASPR44 2 to 70070 to donate £2,
          • can also donate £3, 4, 5 or 10 by substituting the 2
      • Discussed emergency out of hours number – we have insufficient staffing for this at the moment but
  • Nursing Times Award – did we win???
  • Thank You
    • “ The best chance we have of beating this illness is to work together”
    • Living with it, Working with it, Treating it
    Fungal Research Trust
  • Q24
    • When I started taking an antifungal I felt worse than I did before for a while, then I improved. I have been told that this is because when I first take the antifungal it kills a lot of fungus and this initial ‘die-off’ causes me to feel worse – is this true?
  • Q1
    • Is it really necessary to stay on Prednisone so long? I'm wondering if a quick 2-3 week blast is adequate or does it really need to be months at a time?
    • Right now I feel fine yet I theoretically am going to be taking Prednisone for another 2-3 months. I do know that I need to taper off regardless of when I stop taking it to avoid adrenal issues.
  • Q2
    • Everything I read talks about all the long term side effects of taking Prednisone but I don't ever see anything that defines what 'long term' is? Is that referring to taking a maintenance dose forever? Or is having 1-2 bouts with ABPA per year that need to be treated with Prednisone considered long term?
  • Q25
    • I have been diagnosed with ABPA.
    • Is it really necessary to stay on Prednisone so long? I'm wondering if a quick 2-3 week blast is adequate or does it really need to be months at a time? Right now I feel fine yet I theoretically am going to be taking Prednisone for another 2-3 months. I do know that I need to taper off regardless of when I stop taking it to avoid adrenal issues.
    • Everything I read talks about all the long term side effects of taking Prednisone but I don't ever see anything that defines what 'long term' is? Is that referring to taking a maintenance dose forever? Or is having 1-2 bouts with ABPA per year that need to be treated with Prednisone considered long term?
  • Q28
    • I am concerned that my adrenal glands may not recover after several years taking corticosteroids.
    • I have terrible morning fatigue which I understand might be caused by this? What can I do?
  •  
  • Adrenal insufficiency.
    • symptoms
    • Extremely low adrenal activity is known as Addison’s disease. It is characterized by
    • weakness,
    • fatigue,
    • low blood pressure,
    • changes in skin color,
    • dehydration,
    • anorexia,
    • nausea,
    • decreased cold tolerance and dizziness.
    • What can you do?
    • Need to see your doctor
    • Confirm diagnosis
    • Drink enough fluids
    • Some medications eg BP meds may be discontinued by your doctor
    • Changes to some meds eg seretide may be done.
    • Keep warm.
    • Avoid standing for long times
    • Take replacements as described.
    • See a specialist endocrinologist
  • Q24
    • Bloating –
    • my medication does not help as it gives me awful headaches ?
    • What causes it and how can we prevent it/ease the problem? Is it caused by my bowels not processing food quickly/constipation?
  • A24.Bloating
    • results from excess water retention in the subcutaneous tissues of the body. This fluid can collect in a variety of areas – such as the feet, legs, thighs, and ankles – but is typically most pronounced in the abdominal region.
    • The fluid may also collect in the bowels causing indigestion.
    • Some medicines, such as prednisone or itraconazole can cause fluid to accumulate in the subcutaneous tissues of the abdomen.
  • headaches
    • Can occur with any medication though more common with some.
  • Q29
    • What is the effect of alcohol on haemoptysis – ie 1 glass of wine?
  • PATIENT-DOCTOR RELATIONSHIP
  • Q13
    • What is your philosophy in regards to partnering with your patient and how much of a voice does your patient have in his/her medical care?
  • Q26
    • Does anyone have any recommendations on how to handle a doctor whose advice I don't agree with?