I'm new here and hopefully can find some helpful tips to pass on to my wife . She has a complicated health history and has been to the best the USA has to offer !! She has 2 genetic disorders that are rare and the combination is only a handful in the world ( so far ) . Ehlers Danlos type 1,2,4 & very rare (2 classes ) cross over variations & Loes Deetz . They are connective tissue disorders that deal with all tissues in the body . She dissected both corridor arteries , her aorta from top to bottom to the illeac arteries and the mesintaric to the left kidney . She was life flighted to a university hospital and underwent 10 hrs. Of open heart surgery . They replaced her aortic valve and grafted a small part of her arch . Just enough to keep her alive
The Doctors said that's all they could fix because of her disorders . They couldn't fix the rest until she was in a death situation again . ( tissues to fragile to sew ) like sewing Jello or wet tissue paper . She should be happy to be alive they say . this happened in September during covid and she is still bed ridden to this day . she is 54 years old and dealing with the fear of death at any time ( considering she is still directed 95 % of her body ) and having massive panic attacks that don't allow her to sleep anymore . Only time she gets sleep is when she goes to the ER and they give her pain killers and adavan by IV therapy . She has been on ads an since dissecting and now its backfiring . They won't put her in a syc unit to get help dealing with her situation because of her massive health conditions . She is lost and I'm looking for any insight on how to help her cope with her situation . Any help would be a blessing . I don't even know if anyone on this forum has had or know anyone in a similar situation . Thanks to anyone who reads this story till the end . sorry so long but I thought I should cut it there because this story has a 30 year length if it was complete .