I feel like I've been through hell and back. I had the problem where I was just hospitalized for a total of 2 weeks due to #1...contact with black mold which caused respiratory failure and #2. A huge hematoma..called rectus sheath hematoma in my abdomen which caused a huge bleed throughout my abdomen and then pooling of blood under my skin from my center of my abdomen around the side to my back and spine and down to the groin area. Both of these situations could have cost me my life. But due to the wonderful care I received I am here today. I have some good that came out of it though. My primary care doc referred me to a specialist for my lung problem and I saw him today, he is also a Critical Care specialist who has studied at length APS. He sat with my husband and I for over 2 hours today and we talked about everything. He had most of my reports from all my dx. IE.. SLE Lupus, MS, APS, all the DVT's including the report of when I delivered my daughter 35 years ago when I had a mild cerebral hemorage, which at that time we didn't know about the APS but I was advised at that time not to have any more children. Since this last bleed due to the hematoma I have been off of coumadin and on Lovenox shots. I've had in the past a few TIA's also. Most of this has been going on with my health issues for over 15 years, excluding of course my deivery 35 years ago. Most of the dx's were made while we lived in Florida. I had specialists there..hematologist/oncologist, neuro dr, GP, Rheumy, cardiac etc. But never did they gather as a team to figure things out. All treated me for their respective fields individually. Since coming back to New England and having been in the hospital, this new specialist told my husband and I today that He will see to it that they become a team together to address all my issues and where to go from here, also stating I will also have some input in my care also. I was very pleased to hear this finally addressing me as a whole. I, t the same time did become scared with some new info I received. I have been on oxygen 24/7 since the respiratory failure and while in the hospital they realized I have sleep apnea along with something that usually only happens during sleep which is my oxygen level drops severely during sleep and now my CO2 level gets extremely high while sleeping. After testing today, he found that it is also happening now while I am awake. We found out that I indeed also had PE's during one of my hospitalizations in 2008 and that now the Lupus is possibly attacking my lungs. He did agree that MS along with Lupus and APS is very uncommon but does happen. Both my sister, my mother and I have had the same dx of all 3. He is now wondering if there is a genetic link or if there is an environmental exposure from growing up and living in a textile mill city. None the less, I will never ever be able to go unassisted without oxygen for the rest of my life. He also does not think Coumadin is the choice of an anticoagulant for me, but will keep me on the Lovenox until all specialists weigh in with their thoughts. My mother passed away due to bleeding out, She had been a coumadin lifer for many years, the last 6 months of her life was constant internal bleeding from hr intestines which was cauterized a few times and then finally removed altogether, the end was liver ischemia. I am pleased that finally here in the states we found a dr well versed in APS, but I am so scared. He made a remark today that scared both myself and my husband. He said, "There is just so many times in ones lifetime when God will cash in that check and keep you alive, there isn't many more checks to be cashed in for you. Now is the time you need to be totally compliant with your healthcare or you will lose the battle.". I am scared and really ned some support. I did talk with my daughter and son in law but trying not to show them my fear and uncertainties.
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