This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

She’s Got Masses Part 2: Cryo-whatnow?


A few mornings after my stroll through the radiology center I was awoken early to a phone call. Well the time was actually 8am but I consider myself to be a Lady Of Leisure since I am on uni break, please don’t judge. Paddy’s receptionist was wondering what was the earliest time I could go to his suite for a consult. As a Lady Of Leisure I assured her I half an hour was enough time for a coffee and wardrobe change.

When I arrived in all the receptionists were in awe at why a simple rheumatology patient would be called in so urgently. I explained my Lupus ‘Is a little bit wonky’ and how Paddy was so good. We twittered about how strange bodies are until the man himself came to usher me away. The films and tests had all come back. There was evidence of masses growing in my brain in the right hemisphere. It is possible the symptoms I was having were a result of vascular tension, however they cannot be sure. My blood itself was looking okay, healthy and in the normal range of platelets. No more inflammation than I ever tend to show, which is different to the average persons due to the Lupus.

Paddy was concerned that my blood was actually going in the opposite direction to my past. Where once I had trouble clotting and my blood ran like water, now the worry was that my blood was too sticky and clotted too much. The way to see if this theory was right was a special blood test and a course of blood thinners. The test was Cryoglobulins and it is the most extraordinary blood I have given so far. Usually the blood is allowed to cool, or intentionally chilled, as it comes out of the body. Cryoglobulin tests require a test tube of 27 degrees Celsius (body temperature) as the blood needs to stay as warm as it was inside the body. As each vial is filled it is placed directly into a heat pack or jar of water which maintains that 27 degree temperature so the blood can be tested as its regular state to show how it clots and at what speed.

After that test I had to go direct to Evs to explain what was happening so she could plan my new medication. At this point I would like to mention that it is a sad day for a person when they are admitted in to a doctor with the ease I have. It is not something people should want and it never bodes well for the patient. Evs mapped out the first week of a n anticoagulant schedule for me. I would start Warfarin doses as specified and have tests daily, two-daily and then twice-weekly until we could get to an even target INR between 2-3. This is the desired blood thinness for someone in, presumably, my position. Evs assured me she would be in contact every evening over the next few weeks until I was on a steady pace.

The only thing to remember was to keep my INR schedule with me for when I returned to Paddy in a week.


Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

7 thoughts on “She’s Got Masses Part 2: Cryo-whatnow?

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