Help Jenny as she battles bone marrow failure

Hi I'm Jenny and I'm creating this go fund me to help keep up on my portion of the bills while battling thru my struggle with severe aplastic anemia and paroxysmal nocturnal hemoglobinuria. Currently im on the waiting list for a full bone marrow transplant and meanwhile will be admitted to the hospital for atg treatments.

Here is my story...

Since March I've been struggling with severe fatigue, bruising, heart palpitations, petechia and complete loss and drops in all my blood levels. This illness has been a rollercoaster of the unknown from the very start. In the beginning I was referred from er to a hematologist and went straight to my first bone marrow biopsy which came back with no answers. For months as I rapidly declined panels of doctors and specialists could not pin point my illness. At a second bone marrow biopsy it was determined that I suffered from scurvy and paroxysmal nocturnal hemoglobinuria aka PNH.

PNH is a one in a million blood disorder with the only cure being a bone marrow transplant having scurvy along with that was unheard of. At this point my medical team prescribed me a heavy dosage of vitamin C to get rid of the scurvy and after that I was started on a chemo drug called ravulizumab for the pnh. Ravulizumab was a treatment but not a cure. During all of this I still continued to do my best and work full time so I would not fall behind on bills, but unfortunately I also still continued to decline.

I was on the ravulizumab for three months at which point my specialist took me off of it due to no improvement and the fear there maybe something even more going on. She ordered a third bone marrow biopsy at which time it was discovered that along with my one in a million pnh I also had developed a 2 in a million disease called Aplastic Anemia. Aplastic anemia is complete bone marrow failure and mine is consdiered severe. By this time although still working fulI time i had also signed up for fmla to protect my job since with my declining I was slowly missing more and more shifts due to increased hospital stays. My blood levels and platelets were rapidly decreasing and I was going on 7months of being 100% transfusion dependent for both blood and platelets.

I am currently being worked up for a complete bone marrow transplant which is my only hope for survival, and the only cure for both PNH and SAA. Sadly at this time I do not have a safe match. While I wait for a match to join the registration my doctors will be preforming a treatment on me called atg treatment and tommorrow 11/3/22 I will be getting admitted to the hospital for an unknown amount of time depending on how my body reacts. I am now on fmla leave and receiving no pay however the bills will soon be piling up.

Overall from march to now I have had 3 bone marrow biopsies, 4 full body cat scans to look for clots and brain bleeds due to low platelets, over 200 blood draws, over 50 blood transfusions, over 43 platelets transfusions, 4 allergic reactions to transfusions, 3 months of chemotherapy,3 rounds of meningococcal vaccines, 4months penicillin,caught covid, 7 er visits and diagnosed with 3 rare disorders.

I am hopeful my treatment will go smoothly and I can get back to work sooner then later but even If I do I will be on very strong immunosuppressant medications for up to 6months which means I will likely continue to miss work due to other illnesses that will follow. I also will still likely be receiving a bone marrow transplant down the line and with that it includes chemo,radiation then you can not work for up to a year after transplant due to a hard road to recovery.

Any money donated to this fund will go directly to helping us pay house payments, utilities, medical bills, food, Uber rides to and from emergency medical appointments as needed and all other bills that may come up. It is for sure I will be short at least two checks this month and the future is unknown. Thank you for anything you can provide along with a share.