Still so confused

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 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.

7 Replies

  • Hi Dar I just got this now at almost 1;30 am! We texted already and I look forward to more responses from more people on this amazing site! They know more than me and a more than lots of docs I know! They give great advice

  • Thank Deb, I look forward to any advic and also anyon lse who is experiencing same or similar situations as to how to cope. Not to mention being scared as heck. Thanks for chatting with me. You are an amazing person yourself. xx

  • Hi,

    I believe you have at last found a Doctor who is willing to help you with all your problems. He sat down with you and your husband for 2 hours (!) and had collected all the papers from earlier events. He also talked about the problems in your own family.

    Take this as a chance to feel better!!

    I wish you a wonderful Christmas and a Happy New 2016!

    Kerstin in Stockholm

  • You have had a very difficult time and thankfully now your medical care is coming together with some intelligent joined up thinking which will actually make things very much safer for you. I am really pleased that the idea of team building is going on, this is what is required here, the dots joined up and a framework for the best possible care outcome for you. MaryF

  • Thank you Kerstin and Mary and again Deb. Yes I am pleased finally some clear thinking which is including a "Team". It is all so scary to me yet. Merry Christmas.

  • When your new doc made that check cashing analogy I believe he was referring more to failed medical comprehensive care in the past. Your glass may be indeed half empty, but that means it is also half full. I am greatly encouraged by this post. You finally have a doctor who is going to chart a course.

    2 hours with a doctor who is trying to give you and himself a good clinical perspective? Sounds like a great Christmas present!

  • Wow Dar58. What a situation to be in. Try and relax over the festive season and start the battle again in the new year.

    Really best wishes

    Babs xx

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