Wednesday, September 1, 2010

How did I discover that I have systemic lupus

It's been a while since I last wrote on the blog. I have decided to come back to record the feelings and the emotions that I experienced since I was told by doctor that I have lupus - a chronic condition where my immune system goes haywire and attacks my own tissues.

It started with a cough that did not go away for weeks. Since western medicine did not help, I decided to try TCM in early Jul 10. I was told that I have a weak lung and was advised to avoid cold stuff. One week after the TCM medication, I started to experience breathlessness, weakness and fatigue. I also have extremely dry throat and frequent night urination. The TCM doctor changed the medicine and I continued it for another week. But things seemed to get worse. I lost my appetite but keep thinking it was my gastritis acting up. I got tired easily and lose concentration easily.  At one time i was so tired that I even have to take a lunch nap at work, which was something that I have never done during my whole career life.  I stopped the TCM and went to my GP who could not quite pinpoint what was wrong with me since my symptoms are non-specific. He did ECG, chest x-ray and diabetic test and they were all normal. Urine test showed high level of protein and blood though. He asked me to do a comprehensive blood test and it turned out I have abnormal high level of enzymes in my liver and extremely low blood counts for red, white and platelets. Urine test continued to show high level of protein indicating kidney was not functioning well and leaking protein. He advised me to be admitted to hospital asap and fixed an appointment with a respiratory and internal medicine specialist the next morning.

The specialist saw the blood test results and ordered kidney ultrasound immediately, which turned out OK.  He also arranged for my admission - with isolation.  He was worried that I might get infection easily as my white blood cells were critically low then.  Serious infection at that moment would be life threatening for me. 

At the hospital, more blood tests, including that of auto-immune diseases followed.  They were drawing my blood for testing everyday.  On the second day in the hospital, I developed fever and was given antibiotics intravenously to treat the infection.  The antibiotics made me nausea and uncomfortable. I lost my appetite completely and could not eat. With my low blood count, I also suffered from breathlessness and body weakness.  I lost all energy in me and could not even lift my hands up.  It was a terrible feeling and at times I felt like dying. 

The specialist also got another specialist - a haematologist to see me on the 3rd evening of my hospitalisation.  He did a bone marrow test the next morning.  This was to determine whether I have abnormal bone marrow cells  - i.e. cancerous cells like leukaemia or other underlying bone marrow conditions that were preventing it to producing blood cells.  While the pain of bone marrow test was very bearable, it was not so for the wait for all test results, esp if it turned out to be bad news like leukaemia.  I started to worry a lot on both the emotional and financial strains that it may have on my family.  I also worried about my only daughter who may have no one to turn to should anything happen to me.  Not knowing what was wrong with me also frustrated me a lot.  I could not sleep - not sure whether it was due to these worries or due to my underlying medical condition.

On the 5th evening, I received news from the doctors that prelim results showed that bone marrow cells seemed normal - it was good news to me, although the bone biopsy results would still take a while to be ready.  Nevertheless,  I was relieved. The haematologist also decided to give me a HGF jab to increase my white blood cells on that evening.  This would help me to fight infection. I responded to the HGF jab very well, my white blood cells increased to the normal level the next day.
Since my fever has subsided and I could not really sleep well in the hospital, I begged the doctors to let me go home to rest.  The doctors finally agreed provided my blood counts were stable and I would go back to the clinic for blood test regularly.  I went to the clinic 2 days later and it was then the haematologist told me that my auto-immune disease test result - i.e. lupus was positive.  My low blood count was mostly likely caused by lupus attacking my bone marrow. He arranged an appointment with a Rheumatologist - a doctor who specialised in lupus to see me immediately. The Rheumatologist confirmed that I have lupus and started me with high dosage of steroids to suppress my immunity system immediately.  He also ordered more blood tests and 24 hours urine test.  And I would have to see him again in 5 days time.

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