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andrew
05-18-2008, 12:34 PM
**Gwenllian's story - relocated from the original site by Andrew**

My name is Gwenllian, and I live in Cardiff, UK.

I was first diagnosed with Wegeners when I was 14 years old, in 1995. I remember going shopping with some friends, when suddenly I noticed that I couldn't stop coughing. I could hardly speak or take breaths in between coughing fits, and so I quickly went home and went to bed.

My parents thought I had flu, but after a week of being in bed, they called out the doctor. The doctor thought I had pneumonia, and gave me some antibiotics and admitted me to hospital but I kept getting worse.

My breathing was awful, and the fits of coughing sent me into fits of panic.

After a few days, I was taken to theatre and given a lung biopsy which confirmed wegeners. I was intubated, and takent to intensive care. Here, I fought for my life. I was given Cyclophosphamide, and Prednisolone and it was a crucial 24 hrs to see if I would respond to treatment in time. My lung collapsed, and my lungs bled. My kidneys started to fail, and I was given Plasmafarisis.

Eventually, I began to improve and started to get better. It was a slow road to recovery, and I spent many months in hospital learning to walk again and regain my strength.

I did return to school, and eventually went to University. I was told that the likelyhood of my Wegeners ever returning was extremely unlikely, so I lived my life thinking that the worst was behind me. However, I never felt 'well', and struggled day to day. The fatigue was awful, and the only way I could cope was to go to bed early each night (often at 7pm), but the fatigue never improved. The worst symptom I had was breathlessness, which was unfortunately diagnosed as asthma - when I in fact had a Tracheal Stenosis, caused by Wegeners.

I fell pregnant in 2004, but developed severe hypertension and preeclampsia. My baby was small for dates, and was born my emergency caesarian in May 2005. She weighed 3lb6oz, and was taken to Special Care for 6 weeks.

I later learnt that preeclampisa with Weggie patients, is quite common.

It wasn't however, until after the birth of my second daughter in 2006, that my latest flare up was finally detected. After Christmas 2007, I started to lose my sight and my Tracheal Stenosis was becoming out of control. I was seen by a Rheumatologist consultant at the University Hospital of Wales, who immediately started treatment again and luckily I've made good progress.

Having Wegeners has taught me lately that life will never be 'normal' again, but I have to keep fighting for the sake of my two young children.

Maikeedio
09-28-2008, 07:13 PM
Wow.........reading your story is like reading my own. I too was originally suspected to "just" have the flu, was admitted and treated when they realized I wasn't responding to the treatment. After a bronchoscopy that didn't go too well, they sedated me to do the lung biopsy, and kept me sedated for 11 days so my body could heal. I ended up spending 6 weeks in the hospital, and during the first two weeks I was admitted to 3 different ones, trying to find out what was wrong with me. I also needed the plasma pharisis (every other day for 10 days). BTW, I live in the US now, but lived in Denmark when I was sick.
When my first daughter was born, I was 37 weeks pregnant, and she only weighed 4lbs 14oz, but I didn't realize WG could have had something to do with that.
I'm very tired most of the time, never feel well rested no matter how long I sleep, but that's just become a way of life now.
Anyways, just thought it was weird reading a story THAT similar to mine.

ian anderson
05-20-2010, 09:20 AM
hi gwenlilian just read your story interested in how they treated your trachea stenosis please let me know im goin through same thing go to ent fri hope to hear from youxx