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Hello...just wanted to get some information....been in the hospital for 2weeks and diagnosed with lupus and thrombocytopenia....I'm in pain, itching, no sense of taste, hair loss, extreme low potassium and swollen groin lymph nodes.....I feel like I'm falling apart and I'm only 38...what should I expect...my sister had sle lupus but has passed on from kidney failure...I'm terrified.....advice on living with this disease pleeeeease!!!:(
QueDeePie, I'm so sorry you're hospitalized with this bad bout. In your shoes, I'd want more knowledge on three big issues (lupus, thrombocytopenia, and swollen lymph nodes), and I'd want someone helping me gather info, so at least two sets of ears hear it & read it. Are family & friends available to see you during hours your doctors are there? If not, have you connected with a "patient advocate"? Do you have access to a laptop computer, for browsing & reading, then writing up your questions?

These are only examples of what I'd want explained---

Is cause of thrombocytopenia (low platelets) known? For example, are auto-antibodies attacking platelets, or is your body not producing enough new ones? (I think platelets live less than 2 weeks, so our bodies have to keep making more.) What drugs are you getting for it? Do you need transfusions? How have your values been trending?

Which lupus autoantibodies were found? Are any blood values OTHER THAN platelets off? (For example, kidney markers like BUN & creatinine, etc.) What drugs are being administered for these issues?

What is causing swollen lymph nodes in groin?

Another thought: I'd ask friend, relative, or a patient advocate to bring me 1 or 2 books on lupus ASAP, to help me form questions and get familiar with the "lingo". If there's a local chapter of a lupus org in your area, maybe someone from it could drop in for a visit, bring reading material, and lend a knowledgeable hand? If not, maybe phone a national org, to speak with a trained person (prob a nurse)? Or a call to your health insurer? (Many of them have nurses on staff, to help in situations like this.)

I'm sorry my suggestions are so basic, but the times I was hospitalized with big issues, I was either too young (a child) or too stupid (I was clueless lupus was a possibility), so I don't have practice with asking the "right" questions in a hospital setting. So I really hope others chip in with more soon!

My heart goes out to you, and I have my fingers crossed that you can stabilize & get back into "maintenance mode" soon. Stay in touch as much as you can, OK? Sending huge hugs, Vee





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