Anti phospholipid syn

At my pleading my daughter finally was tested. She, like myself both have it. She had been in a car accident and had surgery to repair her shoulder. They bridged her with Lovenox before the surgery. She came home back on Lovenox. She became extremely ill and was hospitalized. She was diagnosed with a very bad infection, c-diff colitis. Last night she felt very strange and her heart was racing. They immediately did vitals, an ekg, sent her for a test looking for blood clots after her d-dimer blood test came back very elevated. No blood clots were found. She was transferred to the Cardiac floor. About an hour ago the nurcame in to do another ekg because the telemetry monitor showed something. The ekg was sent to the cardiologist and now she is diagnosed with atrial fibrillation. They are very worried because with the heart not pumping right there is a good chance of developing a clot. I am so worried. I hate that I passed this on to my beautiful daughter.

22 Replies

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  • Hi dar58

    Sorry to hear that your daughter is having such a rough time. I hope things have begun to stabalise.

    best wishes

  • Thank you for your reply. The news keeps getting worse. Just Praying things start to turn around. They keep giving her new meds and put in a pic line.

  • Hi,

    So sorry to hear about the caraccident and what followed. They then found HS/APS and put her on Lovenox. At least they know now that she must be anticoagulated. What a shock for you.

    You will see that soon your beautiful daughter will be ok again with the right Specialist and treatment.

    I will think of you and your daughter and I hope you will let us know how she is.

    Best wishes from Kerstin in Stockholm

  • Thank you Kerstin, before her surgery, approx. a month before she agreed to be tested. Than Goodness she did, thats when she was diagnosed, so she was already anticoagulated before the surgery. The surgery went well and she came home later in the evening, then she became very ill. Fighting the c-diff infection and now the diagnosis with her heart we are scared. Her father passed away at the age of 39 from sudden cardiac death, and now I feel so guilty that I passed this illness to her. This makes 3 auto-immune illnesses for her also. The other 2 are different than mine.

  • Yes, thank Goodness she was tested before the accident!

    I am sure you have told the hospital about this and they know now. How old is she? I will be thinking of you two and please do not forget to take care of yourself now. Hope you have someone close to you to talk to.

    Keep well!

    Kerstin

  • thank you Kerstin. She is 35 but will always be my baby. I am stuck in Florida as Drs will not allow me to travel since last month's coma. She is 1200 miles away but her husband won't leave her side. They message me often and I call often, but it's not like being there. This really upsets me.

  • Sending positive comforting thoughts to your daughter. Your daughter knows that you would be with her if you were able to travel. Where does she live?

  • She is in Connecticut and I am in Florida. Thank you Jamaica.

  • Yes, you have a difficult situation and I can understand how you feel. At least i think I can.

    My daughters are a little bit older and they mean so much.

    Her husband is her best comfort and help now and I know that she wants you to take care of yourself. That is the best thing you can do as she is well taken care of. Do you have a friend or someone close that can come and stay with you?

    Kerstin

  • My husband is here but he's as much a wreck as I am. Thank you Kerstin

  • Oh Good! I thought of the father who died at 39 years of age.

    Anyway you have someone with you who knows you well. Hope your breathing is ok also.

    Take care

    Kerstin

  • Yes I think my mum felt like you and apologized (it just is was my motto) - your beautiful daughter will not blame you so please do not blame yourself. Your daughter is still alive thats the main thing and the other thing is, it is not cancer. In life I suppose I have learnt to be thankful for small mercies and always look for the positives. not the negatives. Life is what it is and your daughter will love her beautiful mum and probably be more worried about you than herself. Go easy on yourself. the last thing you need is stress. One step at a time, and thank god your daughter now knows what she is up against. On top of this she has a wonderful husband.

    Wishing you the very best

  • Thank you so much for your very kind words of encouragement.

  • Im so sorry for your troubles, its no good me telling you not to feel quilty, as its a done duty of being a mum.

    At least shes diagnosed and the doctors are looking after her. She will have you to support and guide her through, as well as her husband. She knows you love her and you are fighting with her.

    Im sure you will be able to talk to her soon, you now need to look after yourself.

    Praying for you both and wishing her a speedy recovery xx

  • Thank you Holly.

  • You are going through what we all worry about... bridging, infection. I've found better facilities in the north east, it it's any consolation. FYI, Rutgers in New Jersey/ New Brunswick has an entire heme floor with a specialized pro thrombotic diseases focus. I have a hematologist , Dr Thomas Blom in Princeton NJ that sees me when I'm there. He said when he has patients tat have complications from APS, he sends them there. It's not very far from conniticut. Let your son in law know about Rutgers university hospital in New Brunswick- very specialized wing for this. ( you will NOT need it by the way! 😇 My wise mother always said gathering too much information was like an insurance policy- guaranteed not to need it! )

  • Thank you for your advice. I did let my son in law about Rutgers.

  • Even when someone inherits a gene that makes them more vulnerable to developong an autoimmune conditions they will very rarely develop that condition. Its just terrible luck when someone does. No one is too blame imo. Not their parents and not them. Might be that they caught an infection that triggered it or breathed in a chemical duringa trip to teh city. Its not soemthing that can really be guarded against.

    You only have control over how you respond when it happens, and sounds like you are doing a great job.

    Its hard I know, but try to be kind to yourself. atm I find it almost imposible. But I know that being kind to ourselves is important if we are going to be able to successfully tackle the hand that fate has dealt us. And we have more to deal with than most people would in a dozen life times.

    Sorry Im rambling. Just trying to say thta sounds like your daughter is very lucky to have you as her mum.

  • Thinking of you x

  • I'm so sorry! Keep us updated please!

  • I probably inherited an autoimmune tendency as well as my atrial fibrillation from my father, who had lupus and an a fib. Of course, much of who I am is because I am my father's daughter. It has never occurred to me to "blame him" for these two conditions. We are only responsible for those things that we can consciously control.

  • Hi, there, hang on in there, she is in the right place, well done with the testing Keep us updated with any progress, lots of people on here have AF. MaryF

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