My sweet little girl just turned one a few days ago. Her birth gave me terminal health issues and I probably won't be alive to see her grow up past toddlerhood. But being a mom has been the greatest blessing of my life, I don't regret it even though my life will be short now, because having a family has finally shown me what happiness and love feels like. I love how all it takes to give her the best day ever, is a $4 balloon from the store, a hug, and bites of mommy's food. She's the best! 🥰
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@Morrowind my lungs filled up with blood clots during her birth and that triggered my body to start seeing my lungs as foreign and attacking them. They've been rejecting ever since, it's very aggressive, it's completely ruined my whole life. And it's so unfair because this doesn't happen to other people after they get PE's, it's just me this has happened to. I was supposed to recover and be perfectly fine so fast but that's not what happened at all
@ExperienceDLT I'm currently on a large dose of Prednisone which is immune suppressant steroids, also am on blood thinner injections, and a diuretic to help drain the fluid from my heart failure and side effect of steroid therapy. My lung rejection is steroid resistant though the disease fights back too hard, so I will be starting chemotherapy soon
@ExperienceDLT not in my case, I have some sort of unknown clotting problem which is what lead to all of this in the first place. Surgery is what triggered my lung clots to form, which then triggered my body to start rejecting my lungs, when I had my C-section, and a double lung transplant is a MUCH more major surgery in comparison. I would most likely die on the table or during recovery from the surgery, my body isn't strong enough to handle something like an organ transplant. Aside from that, people who have lung transplants generally tend to only live for a few years afterwards, because the body WILL reject the new lungs and they begin deteriorating from day one. Lung transplants aren't very successful as of yet in terms of lifespan and quality of life afterwards. So there would be no purpose to me getting a transplant, because I would just be trading my lungs for a different set of lungs which will immediately begin developing the exact same condition I am dealing with right now. I would also be stuck on these same medications (lots of Prednisone and chemotherapy) guaranteed for the rest of my life if I got a transplant, whereas if I leave my OWN rejecting lungs inside my body instead, the chances are higher of achieving remission where I might be able to stop taking chemotherapy and steroids some day or take long breaks from it. So I am doing medication only, no transplant
@ExperienceDLT unfortunately no they do not have any information for me on chances of remission, lifespan, or anything at all. I'm the first case they have ever seen of bilateral autoimmune lung rejection that developed in response to some tiny little pulmonary embolisms. So they do not have a protocol for this and I'm pretty much a science experiment
@ExperienceDLT luckily I'm trained as a medical lab scientist and also got a degree in pharmaceuticals first so I have a lot of special medical knowledge and am able to take an active role in my treatment I'm able to help the doctors figure out what to do
