I was just diagnosed with ITP 2 months ago now.
I’m a Registered Nurse and my training saved my life (that and comparing hair legs one night shift)! Prior to being diagnosed I suffered through two pregnancy loses. Both all doctors basically said were unexplainable. Then after my second pregnancy loss I needed a D&C and suffered endometritis (infection of the inner lining of the uterus) after several courses of antibiotics and emotional ups and downs I was working a night shift and oddly enough comparing hair legs with my coworkers. I then noticed I had obvious petechiae.
A few days prior to that I noticed a couple spots on my arms but had just done a big set of push ups so ruled it out to be nothing more than a small bruise. Then working my first night shift I ended up with two heavy bloody noses and the next night I knew something wasn’t right. As soon as I got off work in the morning I called my doctor. Oddly enough I was calling to follow up on a pelvic ultrasound I had a few weeks prior because I kept having persistent pelvic pain since the last pregnancy loss and the surgery (we were still trying to figure out why I had so much pain if it was still infection or something more serious).
So after we reviewed the ultrasound which was normal I showed him the petechiae I had. He looked in my mouth and saw them in there and we decides some bloodwork was needed. Now as I mentioned I am an RN and have a lot of experience with ITP but only with secondary ITP from bone marrow insuffiencies from certain cancers.
So my family and me were at my husbands family for dinner when I got a phone call from my doctor who said “Andrea I’m not sure what’s happening but I need you to go straight to the hospital and admit you because your platelets are 5. So go straight there and be careful not to bump yourself!”
Well I knew all that because I have delt and treated many patients with ITP from cancers already. My mind went wild thinking I had cancer now amongst everything that was already going on. My doctor said not to worry though because nothing else looked suspicious in the bloodwork. So when I got to the hospital (the day I just finished my 4th 12 hour night shift) I was admitted right away and more bloodwork was done and then began seeing internists who I knew from working there. In 4 hours my platelets dropped again the now 4,000 from 5,000. I was scared.
I knew critical low was 10,000 and anything lower could result in spontaneous bleeding. I was given high doses of steriods IV and then three doses of IVIG. Luckily I responded fast but felt like garbage! I had a reaction to the ivig that led me to feeling very sick. After three days in the hospital and nothing being delt with in regard to my pelvic pain I was discharged on a high starting tapering does of prednisone for 4 weeks. During that time my pelvic pain persisted so we then saw the obgyn that performed the D&C and he brushed me off bc he basically said he wasn’t going to touch me anything because of the new ITP.
At this point I’m getting weekly blood work as my platelets have still been going up and down but I refuse treatment of steriods unless they get to around 50. Right now they are 149 but we have been told now to not try to have children until we see more specialists. We are exhausted and worried but every day hold our 5 year old so close because we may not have anymore children anymore.
These stories be blogs have made me realize me and my family are not alone. We are a very active family and last year I ran three half marathons amongst many 10km races and places for them. Being diagnosed with ITP has without question been changed me. I want to train more but I worry the fatigue with catch up to me with shift work and family life and ITP and wanting to expand our family. I don’t sit well with not being in control of my life and maybe I haven’t grieved this well but I get angry that something so rare and random where docs seem to be so unsure of what it is happens to me!