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TrinnyLeslie – September Updates

—– 9/28/07 —– Post by: TrinnyLeslie

Yesterday I went to get the results from my Rheumatologist, and the test he did to see what stage of Lupus I have came back 1 positive and the rest negative. Which means that I have a slight case of Lupus, I am highly anemic, my thyroid level was low but not bad. But the 24 hour urine test for proteins came back as high proteins, not dangerously high to put into hospital. He put me on another medication with the others to treat the conditions of Lupus, Scleroderma and see if will stop the leakage in my kidneys. I will have to be monitored by doing future urine test, but for now I have to see him in 2 weeks to see if the medication is working. He did not want to send me to a kidney doctor to have a biopsy done yet, before the medication start to work. But he did mention if my primary care doctor wants to send me to a kidney doctor, it’s up to her.

The upside of everything is that I starting eating more since I am taking the steroids, my skin feels softer although I feel like I am always running a marathon. Now I know I have 3 auto-immune diseases and its a matter of treatment, control and adapting to my new life. 

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—– 9/25/07 —–
Leslie visted the Dermatologist today, he said that she does not need any more test to confirm about her auto-immune disease, he can tell by her skin and other symptoms that she has a combination of three auto-immune disease: Vitiligo, Scleroderma and Lupus. Other tests have been performed and we’re still waiting on results to see what type of Lupus she has. The Dermatologist did print out information on treating Scleroderma for Leslie, but as far as everything else she just has to get treatments. For now the only treatment she is receiving is a combination of medications. Leslie will visit the Rheumatologist Thursday, and depending on how that visit goes she may still keep her appointment with the Pulmonary doctor on Monday. Leslie is still experiencing much fatigue, and dizzy spells while walking. She has to stop several times to catch her breath while walking and feels the condition is worse. Additionally she is experiencing a lot of pain in her hands, swelling, and sometimes when this occurs the hands twists and she cannot turn it back without help. We believe this is happening due to the Scleroderma, but will find out more from the Rheumatologist on Thursday. On a positive note: her appitite is back!!!

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—– 9/21/07 —–
Leslie was not admitted to the hospital, although her blood pressure is still high. They have her doing a 24 hour urine test to determine how much protein is actually in her urine. The protein in her urine is causing her kidneys to leak. The hope is that the Prednisone will stop the leakage; if not another treatment plan will have to be taken – to maybe having to begin dialysis. They are still doing tests to see if the Lupus is true or if it is showing up from a combination of her having 2 autoimmune diseases. Leslie’s blood pressure has come down this evening, Thank God!!!, 113/70; although her pulse is still racing at 90.

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 —– 9/20/07 —– Email Rec’d:
“The […] hospital is not that far from where I live and my mother-in-law works there in the ER, so that is a big plus. At this time we are making arrangements for the boys and organizing stuff with Alex’s job like a family medical leave form, incase he will need to be out of work for some time. [. . .] I just check my blood pressure and its 122/73 but my pulse is 107 that is still not good.” 

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—– 9/19/07 —–
Leslie has not been feeling well at all for the past week and is still not doing well. She visited her primary care doctor and found out her blood pressure was high – 160/100 and heart rate of 108. She is continuing to monitor her pressure at home with her kit and has to have all other doctor’s check the pressure as well. Since all of this has started Leslie is very fatigued, winded, and light headed. It’s a chore to just walk to the bathroom sometimes. The will be doing a pulmonary test, because the blood pressure being high can constrict her lungs. 

Email Rec’d:
“On Monday 17th I went to see my pulmonary doctor and my pressure was still high and my heart was racing, he told me that he will have to do the lung test next Monday. Yesterday I went to the Rheumatologist to start treatment for the Scleroderma, found out that my blood test came back positive for Lupus too. I told him about my blood pressure and did check my pressure it was high too. He did an EKG that test was normal but my heart was still racing. He did another blood test and urine test, my urine shows high protein. He prescribed for me a blood pressure pill and a steroid for the disease call Prednisone. Tomorrow I have to go to his office for the results and if my pressure is not stable I will be place in the hospital. He did say that my blood pressure being high is not from my heart, it looks like it’s coming from my kidneys, that means my kidneys might be failing. I am suppose to start more treatment for the disease tomorrow too.”  

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—– 9/7/07 —– Email rec’d:
Thanks for your concern, I should be getting treatment for the Scleroderma when I see the Rheumatologist on September 18th 2007. Yesterday I went to see my Dermatologist and he did not get all the results from my biopsy he did two weeks ago, but he did get one result about the Scleroderma came back positive, that we already knew. I have to see him again on September 20th 2007 to get all the rest of the results and to get a treatment plan from him. … I am waiting today for a call from the Gastro-enologist for the result on the Colonoscopy biopsy. Although I am dealing my disease, I am still trying to get Benjamin into a school because the Department of Education having problems finding a placement for him.  

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—– 9/6/07 —–
Leslie is still in good spirits awaiting to find out what the treatments will be for the Scleroderma, enduring more tests every time she turns around. Some days she feels fine, then other days she feels like total crap. Leslie blood pressure has been remaining high and will see her primary care physician to follow up on that. Leslie sends many thanks for your continued prayers! 

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