Wegener's Granulomatosis Support Group Of Australia Inc.

 

CASE HISTORY

 

 

WEGENER’S GRANULOMATOSIS

__________________________

 

LILLA D FIECHTNER, Toowoomba, Qld

DOB:  28 January 1927

 

 

In September 2003, at the age of 76, I was diagnosed with Wegener’s Granulomatosis.

 

During the previous few weeks I was quite ill and my general practitioner diagnosed that over those weeks I had influenza, pleurisy, pneumonia, bronchitis and I also had a continuously blocked and/or runny nose.  Various antibiotics and inhalants were prescribed but failed to improve my health.

 

My GP ordered x-rays which revealed abnormalities in my lungs.  I was then referred to a respiratory physician specialist who ordered a CT scan.  I was hospitalised but did not respond to high doses of intravenous drugs. 

 

The respiratory specialist told me he suspected I had Wegener’s Granulomatosis but I needed further tests to confirm the diagnosis.  Blood tests were unsatisfactory.  I then underwent a fine needle lung biopsy and later that same week a bronchoscopy, neither of which were conclusive.  Throughout this time I also had shortness of breath, an uncontrollable cough and very sore, crusty nasal passages.

 

The respiratory specialist referred me to a thoracic surgeon at Prince Charles Hospital in Brisbane for lung biopsy.  This confirmed the diagnosis of Wegener’s granulomatosis.  I remained in hospital for a subsequent five weeks and was started on courses of Cycloblastin 50mg, Prednisone 40mg, Nexium, Digoxin, Astrix, Lasix and Imuran.

 

The Prednisone caused my face, neck and body to balloon and I went from 55kg to 65kg.

 

From the date of the original Wegener’s Granulomatosis diagnosis to the present date I’ve had a chest infection, cellulitis, frequent bouts of coughing and now use a CPAP machine.

 

I’m always tired and easily exhausted.  I have no energy and have frequent short sleeps during the day.  My nose is very runny but dries during the night and gets sore.

 

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CASE HISTORY

WEGENER’S GRANULOMATOSIS

__________________________

 

LILLA D FIECHTNER, Toowoomba, Qld

DOB:  28 January 1927

 

 

When I read other case histories I realise I am very fortunate as my symptoms are mild compared with others.

 

I’ve had wonderful support from my family and help from my parish church friends has been unconditional both with their prayers and practical help.

 

Following removal of several basal cell carcinomas from my legs in July 2007 which failed to heal, I was hospitalised as the pain in my legs was such that I couldn’t walk.  A subsequent bone marrow biopsy in early August 2007 showed that I had developed a secondary disease, myelodysplasia, giving rise to a continuously very low white cell count (2.4) so I have very little immunity with which to fight disease or infection.

 

Since the secondary diagnosis of myelodysplasia I’ve had four blood transfusions which give me a little bit of energy for awhile.

 

Recently I spent a further two weeks in hospital with pneumonia, was home for two weeks and then back into hospital for a further two weeks with cellulitis which is very difficult to heal as I have practically no immune system; at present a platelet count of 13.

 

Other odd things which occur are my getting clammy and perspiring and I get very breathless.  For some time I have been using a wheelie walker (I call it Matilda) which is a great help to my mobility.

 

Maybe this rambling history will be of use to others.  Don’t ever lose heart because you have a peculiar ailment.  Remember when a burden is put upon us God lays his hand underneath us so that the burden may not be too heavy.  My prayer and hope is that one day a cause and cure will be found.

 

Best wishes,

Lilla Fiechtner.