On July 31, 2025 my husband and I met with my hematologist and he said he spoke with his colleague at UVA and I do not have MDS. I have CHIP (Clonal Hematopoiesis of Indeterminate Potential). It means I have the mutation (TET2) that can lead to MDS and we will just monitor my bloodwork like we have been doing. He suggested I go off my LUPUS meds that I’ve been on since 2006 for 4 months and have a bone marrow biopsy to see how that helps my blood counts and if it changes my bone marrow.
We will still go to UVA for a second opinion some time in August since I live in VA.
I am going to have my total right knee replacement surgery in September after Labor Day. I’ll have to have 2 days of Neupogen injections to boost my white blood cell counts prior to surgery. I have had critical low WBC of less than 2.0 for 19 years. I have Neutropenia too. I have Lupus SLE. I bruise easily and my arms and legs are always purple. I don’t wear shorts in public. I’ve battled with chronic fatigue all my life. I have Hypothyroidism. I battle with depression and mood disorders and PTSD. I lost four pregnancies before I had my first daughter who is 21. We have 21 yr old daughter, 19 yr old daughter, 17 year old daughter and 16 year old son with Down syndrome. I’m concerned that my local doctors aren’t taking care of me. I fight sinus infections, allergies, asthma, respiratory infections. I hope this second opinion will be beneficial. Any comments.