I'm currently 7 and half weeks pregnant and I have lupus SLE. Diagnosed at 16, currently 23 years old. Have had past pericarditis and foot inflammation on top of all the other normal symptoms.
I had my first appointment last week to take my history and bloods, blood pressure etc and the nurse put me in for a dating scan at 12 weeks but said I will probably need to be seen sooner/ more frequently as I am high risk, but she didn't know so said I just have to wait to see if I get a call / letter for it... I just received in the post my dating scan for the 13th week, and not had any further contact with anyone about anything else.
From week 5-6 I have been feeling very difficult breathing, shortness of breath, right chest pain when lying down, and have formed some sort of rash/blood vessels popping up on my cheeks. So my rheumy gave me a chest x-ray, which was clear, so we went further and did a CTPA scan. Everything came back normal no clots or anything so she put my on a short burst of higher prednisone. I feel better but not completely.
Anyways, enough of my health history.....I was just wondering is it normal to wait this long for my next appointment to be seen with me being high risk? (appointment is 6th September). Also how often does a lupus patient usually get seen and starting from when?
I'm just a bit worried as the nurse that saw me for my first appointment didn't seem to know too much about lupus and was just going to pass the information into the appropriate specialist, which is in my opinion a long route and my files maybe put on held by the specialist it should be going to as I'm sure they are very busy themselves. I guess I just feel abit lost as to the next steps and if there should be a closer monitoring of me.
Thank you! X