As many of you know, my mom has been battling an illness since the beginning of October and we finally got a diagnosis of Disseminated Histoplasmosis. She hasn’t been able to work much over the last couple months and we are not sure when she will be able to go back to work. We have been so incredibly grateful for the outpour of support during this difficult time. Many of you have asked if a gofundme will be set up and at first decided to hold off to ensure that not only us but you all had the full picture. We feel like we’ve gotten to the point where the doctors have provided us as much information as possible. Mom’s insurance isn’t the best so we have been applying for medical assistance but even if they approve her, this will only cover some maybe all of the mass amounts of medical bills she’s accumulated. She will still be left trying to figure out how to pay for everything else on top of medical costs. Mom unfortunately does not qualify for short term disability and since her work is so small she does not qualify for FMLA either. I came back from Colorado November 1st to help take care of her while all of this has been going on. I have been staying with her while she has been in the hospital every day the past week and a half, helping as much as I can. We just want to make sure mom is not stressing during a time where she needs to be focused on healing. From mom, myself, and the rest of the family, we want thank everyone for your continued thoughts and prayers. Thank you to everyone reaching out, helping in other ways and offering to come see mom. We will keep everyone updated as time goes on, lots of love! -Libby

Mom’s Full Medical Journey Overview

We are pretty certain the symptoms started at the beginning of summer around May but just slowly got much worse the last couple months. She started experiencing fevers up to almost 105 degrees every day for hours on end while no over the counter meds or antibiotics touched them. On top of the fevers she was experiencing pain in multiple areas of her body, headaches, extreme fatigue, memory loss/brain fog, loss of appetite and weight loss, among many more debilitating symptoms. After many doctors did many tests and could not figure out what was wrong, they just sent her on her way each time with no answers. Eventually we started demanding something be done and that’s when we finally got a referral to infectious disease at Carle in Peoria. However, she just was not improving and therefore the family decided we needed to bring her to the ER at Carle in Peoria to hopefully speed up the process. We brought her to the ER on the 22nd of November where she got plenty of blood tests done, a bone marrow and liver biopsy and a CT scan. Her symptoms persisted but in less than a week they finally figured out what was going on and diagnosed her with a life threatening infection called Disseminated Histoplasmosis. At this point the infection was already taking serious effect on her body and organs. Many tests up to this point showed her liver was in serious trouble, but again no one could figure out why. The infectious disease specialist assigned to mom’s care confirmed she does not have cancer but they were admitted that they worried this could have been the case with how the infection was presenting itself. He was also concerned because this infection usually does not manifest in someone who is considered to be healthy. Typically they only see this in immunocompromised patients like those with cancer or other underlying diseases. Mom is never sick, and even when she is sick she pretends she’s not because that’s just who she is. So being this sick and not getting out of bed for months was the most telling part of it all. Though no cancer, they let us know that this infection is just as serious and needed to be treated right away in order to not let it become fatal. We were told the treatment called Amphotericin B is very toxic but it is the only thing available to treat such an aggressive infection. The medicine is given through IV daily where the entire process is about 7 hours long. The doctors said that the treatment can shut down your kidneys if given for too long so they have been checking blood work on this as well as her other organ functions daily. Benadryl is given with the medicine each time as well to counteract any side effects that may happen as we were informed by doctors that a high percentage of patients in the past have gotten reactions. She started treatment for this infection on Thanksgiving where she had some pretty scary side effects including severe rigors, very high heart rate and BP, very low oxygen, and more. She thankfully got through this with oxygen and other measures and is now being given steroids on top of the Benadryl every day to counteract anything that might happen again. She has not had anymore severe reactions since the first treatment thankfully but she will be getting at least several more rounds while still admitted to the hospital where they have to monitor just in case. Reactions can happen at any time during this course. We plan to be here until the end of this week sometime, maybe longer depending on how she is responding and how her labs are looking. After the IV treatments are done and the doctors think she is good enough to go home, she will be on oral treatment for up to a year, maybe longer. They have advised that the more severe symptoms such as fever and loss of appetite will slowly get better these first few weeks however symptoms such as her fatigue and brain fog will not go back to normal for at least the time she is on the oral medication. We were also informed that she has tested positive for an autoimmune disorder called mixed connective tissue disease, but the doctors are not sure if this was a false positive due to the infection. However, if she has it, it would explain why she may have gotten the infection with no other signs of a compromised immune system. With the research we’ve done on the disease, it also seems scary but we are trying to stay positive as she cannot be retested again until she is off of the oral medication.