The field of medicine for all its advances sure hasn’t made it any easier
for us patients to understand what doctors and the labs they use are talking
about.
For example I have started to get some test results back from a series of labs I did while at Winthrop Hospital's Hematology and Immunology practice. I don't understand them...but I've gotten them back. We are looking at how my body responds to attacks on the immune system. It clear that I will need to schedule an appointment with the doctor to get the results explained. Sure they send me the results but it’s all written as high and lows with no explanation to what those highs and lows mean.
One advantage to having a rare disease is that until now I could always count one getting quick access to medical professionals. I used to be able to call up and pop in the next day. Unfortunately, the novelty seems to be wearing off and I am going to have to spend some more time waiting in doctor’s offices in the future.
Oh. I had my appointment with Dr. Diamond at MSKCC last week and Dr. Diamond told me I was probably the healthiest ECD patient he had ever seen! I feel like there should be a prize for this fleeting distinction. We did some tests and special stains that I will get the results from as they come in.
After the appointment I had to get blood drawn and I had to wait a long time....almost had a yelling melt down. Luckily DawnMarie was there...she calms me.
Dr. Diamond sent me this email today.
I continue to work on my nerves/anger/emotional outbursts. I'm not sure what causes me to flip out but I suspect it’s related to the disease process, or perhaps I'm just being a petulant child.
I am in Pittsburgh for the next two weeks by myself (I am starting graduate classes). I haven't been alone for more then a few hours since I first started to get sick....so wish me the best.
For example I have started to get some test results back from a series of labs I did while at Winthrop Hospital's Hematology and Immunology practice. I don't understand them...but I've gotten them back. We are looking at how my body responds to attacks on the immune system. It clear that I will need to schedule an appointment with the doctor to get the results explained. Sure they send me the results but it’s all written as high and lows with no explanation to what those highs and lows mean.
One advantage to having a rare disease is that until now I could always count one getting quick access to medical professionals. I used to be able to call up and pop in the next day. Unfortunately, the novelty seems to be wearing off and I am going to have to spend some more time waiting in doctor’s offices in the future.
Oh. I had my appointment with Dr. Diamond at MSKCC last week and Dr. Diamond told me I was probably the healthiest ECD patient he had ever seen! I feel like there should be a prize for this fleeting distinction. We did some tests and special stains that I will get the results from as they come in.
After the appointment I had to get blood drawn and I had to wait a long time....almost had a yelling melt down. Luckily DawnMarie was there...she calms me.
Dr. Diamond sent me this email today.
Brad, I meant to write you about your PET scan, this is important. It’s much improved from your prior one. Your initial PET from 2013 showed avid lesions in the abdomen (pancreas and around the aorta), as well as the right tibia. These are all essentially resolved on the current PET.Now I think this means that what were once active histocyte cells (caused by Erdheim Chester Disease) are now just dead "scar tissue" which is why they showed no uptake on the PET Scan. This is good news. I think.
I continue to work on my nerves/anger/emotional outbursts. I'm not sure what causes me to flip out but I suspect it’s related to the disease process, or perhaps I'm just being a petulant child.
I am in Pittsburgh for the next two weeks by myself (I am starting graduate classes). I haven't been alone for more then a few hours since I first started to get sick....so wish me the best.
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