PDA

View Full Version : A bit of history...



dalzielette
05-21-2008, 03:06 AM
Dare I know where to begin?
I suppose I could attempt to recount my history; alas, my memory is not that good. So, without my medical records in front of me I will simply do my best:

I was ten years old when I first fell ill. A child of good health, I had rarely been sick aside from the common cold and childhood fevers, but during the fall of 1997 I began having a perpetual cold, which led to what doctors in two states believed were intensive allergies and hypochondria, with my becoming couch ridden due to joint aches, sinus issues, and breathing problems. Now, I know I was having some of the most common symptoms of Wegeners. However, at that time they knew not what was happening, and after being given numerous medications that had little or no effect, I went to have sinus surgery in February of 1998 in hopes of relieving some of those issues. This ended up being quite a blessing as after the surgery I was not healing well, and the ENT who had performed it had taken a biopsy and decided that I had Wegeners Granulomatosis. He was quite reserved in his suggestion of a diagnosis as he had seen Wegeners once before, in a 50 year old man, and never heard of it in an eleven year old girl (I had just had my birthday the week before). I was immediately referred to a Pediatric Rheumatologist who knew little about Wegeners, but was willing to find out what I needed – I was hospitalized and placed on Cytoxan, Prednisone, and Bactrim.

They gave me three months to live. Needless to say, that didn’t happen.

My parents fought for me. They found that the National Institutes of Health (NIH) was doing research on Wegeners and we were put in contact with them. After a trip to NIH they accepted me into their protocol and I remained under their care for over 8 years, until they closed the program. During this time, I believe I had most every drug in our book: Cytoxan, Imuran, Methotrexate, Rituxamab, Prednisone, Bactrim etc. due to various relapses I had. Wegeners has been active in my Sinuses, my bridge has quite deteriorated; Lungs, at one time my lower left lung had collapsed; Kidneys; Joints; Skin; Trachea, I have had a dilitation; and Voice Box. I think that about covers it, but I am not sure.

I was in “remission,” in as much as we can be, after a treatment of Rituximab and maintenance with Methotrexate for four years during which time I left NIH and am now at Mayo Clinic.

Which leads to my current predicament. Last fall I began to lose my voice and my breathing became labored around the windpipe. However, my blood work was normal and thus it appeared I had no need to see my rheumatologist. After Christmas I had finally reached a point where my breathing had become too labored and my parents were deeply concerned so I went to see the doctor again, and he was worried. I immediately saw my rheumatologist and he was quite confused with me as my blood was perfect, my body was not. I had had yet another relapse, even more confusing than the ones before. This spring has been interesting, to say the least. They put me back on Cytoxan infusions once a month, Steroids, and Bactrim – the normal round of CT scans were ordered and a visit to the ENT. My breathing improved immediately (Oh the wonders of steroids) and it appeared as though I was doing well until I returned to the doctor in April on account of exhaustion and acute headaches: the prednisone had hit me full-force with side effects. At this time the doctor listened to my lungs and decided another chest X-ray was needed and the pictures showed that my lungs had actually gotten worse as opposed to better – the granulomas actually showed up on film, where before they had not, and I had pain in the chest when walking any significant distance. This led to another look at my sinuses that also showed little improvement, although my trachea has thankfully improved. That was at the beginning of April. I am now waiting for Rituximab to be approved for me by insurance and the company that produces the drug. I am still on Cytoxan (100mg) daily, Prednisone (60mg), and Bactrim. My body is plodding along and has continued to develop more Wegeners symptoms: in addition to my lungs and sinuses, my legs have developed lesions if I put to much strain on them and my feet are bruised causing my mobility to be limited.

I have never done support groups before. As a child I simply accepted all the doctors told me about my illness and struggled to maintain a certain amount of normalicy. But, this relapse has occurred and has forced me to alter my paradigm of my illness – I truly am sick. I have always called it my blessing curse. I have met more people and had more opportunities in this world because of it, but when ill it is… well I am sure everyone knows how it is. So, now I am here because I need to be understood. I need to relate to someone else who knows what it is like, what I am feeling, at least in a general sense. I need to know that this is normal, and yet is not.

That is a glimpse of my story. If anyone has any questions, feel free to ask. I will do my best to answer and I hope that everyone here will persevere in this… we can do it.

<><

andrew
05-21-2008, 06:23 AM
I have never done support groups before. As a child I simply accepted all the doctors told me about my illness and struggled to maintain a certain amount of normalicy.

Welcome to this support group and thank you for posting your story. We're not many in number at the moment (I'm working on that aspect!) but between us we have been through a lot. You're in the right place to be with people that understand what you're going through.


But, this relapse has occurred and has forced me to alter my paradigm of my illness – I truly am sick.

I was diagnosed at 34 so I don't know what it's like to be diagnosed at such a young age. I'm supposing that, because of that it just became a part of your life that feels like it has always been there. This latest relapse has basically forced you into, as you say, a different paradigm. Many weggies talk about a 'new normal', a new way of life that takes into account what changes the disease has forced on us and work with it rather than against it in order to improve our lives and keep us smiling.

Oh dear....if completely lost the track of the point I was trying to make :D That might be a good thing though because I was starting to sound like Dr. Phil. Maybe I haven't been having enough Omega 3 oil.

Anyway, I hope you find here a path to the new normal and all the support you need.


I have always called it my blessing curse.

Very true! I hadn't given it much thought myself but I have met a whole bunch of wonderful people that I otherwise wouldn't have met if I hadn't got sick.

Welcome again to these forums!