Trying to live with lupus
Hello my name is maritza i was diagnosed with lupus in 1997 when i was pregnant with my last child. At that time my doctor said that my two daughters ages 10 and 6 had to be tested for lupus. My youngest daughter came out positive she was tested several times during a year and always the result was positive. That explained why she was always hospitalized with high fever and kidney infections. Up till 2007 my lupus just consisted of muscle spasms and i was never put on any medication for lupus. Up until 2006 i lived in Puerto Rico so I'm guessing the warm weather there is what kept my lupus under control. In 2006 i moved to florida during the winter time and for those who think it doesn't get cold in Florida you be surprised I've seen the temperature drop to low 20's. Im guessing the change in weather and working 12 to 16 hours shift with maybe one day off during the week if i was lucky sent my lupus flaring so bad that i was hospitalized for about 3 weeks. I was diagnosed with lung disease, leaky heart valve, high blood pressure, protein leakage in urine, lung embolism and a DVT. I was put on prednisone, blood pressure medication and told to drink 325mg of aspirin per day. Once i started seeing a rheumy and continuous lab works were done he noticed that my lupus never would go into remission. It was then that i was told that this was because i had double strand lupus. I inherited the disease and i carried the gene which now meant that all my kids regardless of their sex and my grandchildren had to be tested and more than probable since i have the gene all my children would result positive. This was such devastating news for me because what mother wants to pass a disease to their child. Some of my kids have been tested and they were positive the others don't want to be tested but they show the same symptoms as myself and their siblings. Out of eight grandchildren three have been tested one was negative and the other two were positive the youngest is 3 yrs. old and he already is having kidney problems his left kidney is functioning at a 46 percent and his right kidney at a 53 percent. My 5 yr old granddaughter has high fever and seizures all the time and is constantly hospitalized. Well from 2007 up till 2012 i been hospitalized many times but nothing as severe as my last hospital stay. In 2010 i had a kidney biopsy done and i had stage two lupus nephritis. I was put on various medications to treat my kidneys, lupus and other conditions related or because of the lupus. In 2008 after more labs and coming out positive for lupus anti coagulant my rheumy referred me to a hematologist so i can be put on blood thinners especially because of my history of blood clots and dvt but that hematologist was the worst uneducated professional i ever encountered. All he kept repeating was why are you here for? I kept explaining and showed him all the lab work and the rheumy referral and he refused to practically attend me all he said was i don't know why he sent you to me your wasting my time just keep drinking your aspirin. I felt lost, be riddled and confused but my rheumy suggested he's one of the best hematologist in central florida and if he didnt put you on blood thinners than lets just stay on the aspirin. In 2010 i had another dvt yet i wasnt put on blood thinners this time either. On sept 21 2012 i was hospitalized again this time because of my kidneys all the lab work came back crazy and they said they needed to stabilize my kidneys. While i was there a heart doctor was called into check my heart and i will never forget this doctor he actually showed concern for my health. The cardiologist told me he wanted to run some test on my heart and if i wouldn't mind staying a few more days i told him okay. Thats when my life changed forever. When i saw the cardiologist again he told me " we have to transfer you to Orlando Florida Hospital you need to have open heart surgery" your heart is too weak and its drowning in its own blood. I was taken the next day to Celebration Hospital in Kissimmee via ambulance to have a heart catherization prior to going to Orlando and as i returned to Kissimmee hospital all hell broke loose because as soon as the paramedics placed me in my bed i started screaming with pain i started getting a DVT plus blood clots forming on my legs and working their way up. The rescue team was called in and after over an hour of pain medications, massaging, screaming and being in so much pain the managed to break up the blood clots. That night i was transferred to Orlando Hospital. They waited over 2 weeks trying to stabilize my kidneys so they can do the open heart surgery but my heart couldnt hold any longer and they took my husband aside and told him they coudnt wait any longer they had to do an emergency open heart surgery if they wanted to at least try to attempt to save my life. Next day i went under the knife, they found a blood clot in my heart, an infection and they replaced my aortic valve with a mechanical valve but right after the surgery they told my husband im sorry but your wife went into renal failure and lung failure both organs are working less than 20 percent. I was intubated more than four times cause every time they tried to get me to breathe on my own i couldnt. After almost two months in the hospital in intensive care i finally woke up and im alive to tell my story. Im called the miracle of god by all the doctors and hospital staff. I was even approached to give permission to use my story and medical records for the college text books so they can use it for lupus textbook, which i gladly signed the release form. Im sorry for such a long introduction but i really needed to get this all off my chest. Its just a shame i had to go through all of this just to finally be put on blood thinners for life. After the renal failure im at stage 5 now.
Medications: PREDNISONE 120 mg, CELLCEPT 2000mg, PLAQUENIL 200 mg 2x day, DIOVAN 360mg, COREG 25 mg 2x a day,WARFARIN 6mg, GABAPENTIN 300mg 2x, FLEXERIL 10mg 3x a day, ZEMPLAR 1mg, DOC-Q-LACE 100 mg, IRON 325mg 2x a day, ONGLYZA 2.5 mg, ALENDRONATE 10 mg daily, AMBIEN 10 mg, PERCOCET 10/325mg, FLOVENT, FLUTICOSONE,