Vasculitis

Update

I want to give you an update on the third ct scan (scan) I had done, to find out why I constantly have blood in my urine as well as flank pain. According to the one urologist I’m seeing, it’s more apparent that the lesions on my kidneys, liver and stones are from Behcets. The lesion on my right kidney is 1 cm (9mm) and is 21-22 Hounsfield units which is just beyond normal range. I had a couple of small kidney stones which could also contribute to the bleeding and the liver has two 4 centimeter lesions. The urologist wants to continue monitoring this by scan every three months. I agree with him to an extent, with the information he gave me. Based on prior experiences with my health and this disease, I believe I need to seek out some different opinions.

I ask for my records which he gracefully gave (incase of an emergency). Upon reviewing the scan results, I noticed errors as well as findings he chose to exclude from telling me. So please, please people, always get your own copy of your scans, people are human they make errors and choices that are not always correct or good choices for your particular case for example, choosing to leave out information that could be specific to your diagnosis while unspecific to someone else.


I found the following Error and Excluded Details in my scan:

Error

• The Findings Section of my scan - Claims there is evidence of hydronephrosis (which is swelling of the kidneys).

• Impression Section – States NO Evidence of hydronephrosis in the kidneys.
  

Excluded Details

• Mild scarring or atelectasis in the left lung base - I’m not a smoker or have never been a smoker (I have never inhaled Haha!), nor have I had pneumonia. Also, keep in mind this was an abdominal scan not a chest scan or a chest x-ray so getting the full picture of the lungs has not been done and this radiologist made errors, obviously I don’t have a lot of faith in their impression of my findings. In my opinion, they have made an error in judgement; they should have ordered an MRI instead of three scans due to the limited ability to see details, the multiple findings in different organs and the risk of my disease….not to mention the cost behind doing three different scans.

I realize for people who smoke or have asthma, this is probably an insignificant finding for them, but for someone who has vasculitis its a very important finding, especially when I have been struggling with chest pain and other symptoms that indicate pulmonary and cardiovascular involvement. It’s the underlying condition causing the lesion, not the lesion itself, that’s cause for concern.

What this urologist doesn’t understand about the scarring or collapse of my lung is, I have been seeing a cardiologist due to an abnormal EKG - which read possible myocardial infract (heart attack) due to right ventricle blockage. The right ventricle feeds the cardio and pulmonary vascular system. Meaning it supplies oxygen and blood from my heart to my brain, neck, lungs, kidneys, liver, legs and feet…the whole body.

As you can see in the above diagram, the right ventricle feeds directly into the left lung. The right ventricle is what came back on my EKG as blocked and the left lung base is scarred. Can you see the cause of my vigilance and the lack of….with my current urologist and radiologist in their errors and poor judgments?

I've had an ECG and it came back normal, meaning my heart looks like a normal size as well as all of my chambers. I probably had lots of inflammation in the chest region but no damage that they can see has been done to the heart yet. When I had my dissecting aneurysm the MRI revealed both arteries in my neck were abnormally small and they deemed it as hypoplasty. But I also have narrowed blood vessels in the eyes (according to retina specialist) and narrowing urethra in the bladder (which I just learned from this urologist). Narrowing tends to be symmetrical just like arthritis. If the eyes are the window's to our health this could be an indicator of what may be happening to the blood vessels in my body.

I realize people have a difficult time grasping and understanding the process of my disease, but doctors? I can’t understand why? Since I have started this blog, I have received some great questions from people which generate new thoughts and is making me a stronger advocate towards Behcet’s. I was talking to my cousin on the phone yesterday and she said to me “Jenece, the Behcet’s website makes this disease seem so simple.” This is an important statement; it’s very true that doctors and medical professions seem to focus on what I like to call “Surface Symptoms” when treating or reviewing test which could be part of the problem. There needs to be more awareness in the different progressions of this disease. Maybe, the Symptoms on the American Behcet’s website need to be rewritten by adding the progession of a vasculitis based on the length of time one has the disease. Maybe, I should write to the President of the Behcet’s website? I don’t know what all this means for my prognosis but I’m hoping that it should shed more light once I get some chest x-rays. I made an appointment with my DO last week. But I missed the appointment because I couldn’t drive last Monday, I was unable to lift my right arm to drive…go figure.

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