Hi everyone!!!
This is a huge step for me putting my pride aside and asking for help but it’s what I must do as my medical trips have depleted our cash beyond what we had!
My name is Danielle and I am 37 years old with a loving husband whom currently is in his last month of the massage therapy program and graduates in just a few short weeks. We have four amazing children ages 20, 15, 12 and 6. We also were blessed with our first grand baby last summer and she is almost 1!!
In 2013 shortly after I married my husband I started becoming sick and was constantly nauseous with frequent vomiting and stomach upset (will spare you the details) after suffering for a few months the doctors determined I was suffering from gallstones and opted to remove my gallbladder and assuring me that was the issue. So in 2013 I had my very first surgery and had a cholecystectomy. After the surgery the biopsy came back showing the gallbladder was infected along with numerous stones. Again I was reassured that this surgery would fix my issues. Unfortunately that was not the case. I continued to have chronic nausea, vomiting and stomach upset to the point I was unable to eat. By beginning of 2014 just a few short months after the surgery I rapidly started losing weight and at that point had lost 62 pounds in three months. I went into the ER with uncontrollable vomiting January 1st 2014 and the first hospital was unable to help me as it was a tiny rural hospital so I was transferred to a larger hospital of which after X-rays and CT scans and not finding an immediate diagnosis they discharged me home after two days. I continued to be extremely sick and unable to eat so my doctor in the city I worked in direct admitted me to the hospital he worked at covering his patients. I remained in that hospital under his care for 8 weeks total. So many tests, labs and procedures were done looking for anything that might explain my problems. They found minor issues such as gastritis and an enlarged liver. I unfortunately did get two DVTs while at the hospital during that stay and it was found at that time I did have a blood clotting disorder and was treated for the DVTs. Eventually I was discharged home and continued to be absolutely miserable and unable to eat. About a month later I was admitted again for exploratory surgery of my abdomen where it was noted I had Gastroparesis and was treated but no answers as to why I had developed it. Again I was discharged were of the next decade I have suffered so much and for so long when doctors couldn’t easily find an answer I was shrugged off or misdiagnosed to just get me back home. I can’t begin to count the amount of hospitalizations, hospital acquired illnesses from those stays, disorders that developed secondary to procedures, surgeries or even just the stress of traumatic events during the illness. I will give a short timeline as it would take me writing an entire novel to explain everything in detail.
2013- cholecystectomy
2014-hospitalizations and small diagnoses such as gastritis, hypertension, fatty liver, hyperlipidemia, anoxeria (from chronic vomiting and loss of appetite), gastroparesis, developed DVTs and frequent thrombosis and more.
2015- became pregnant and lost our baby to a tubal pregnancy. The Fallopian tube ruptured and had to have an emergency salpingectomy removing my left Fallopian tube. I did want to try again as I knew I was becoming sicker and would not be able to have another child much longer. Became pregnant again and ended up having a high risk pregnancy due to pre eclampsia. Multiple other health issues developed.
2016- gave birth to our last child after having to give birth 5 weeks early due to severe pre eclampsia. The doctors took me the very next morning after delivery and did a tubal ligation because they informed me the chances of me surviving another pregnancy were slim. Continued to be sick and still not finding answers.
2017- on top of the ongoing gastrointestinal issues my hypertension was worsening and getting harder to control and was causing thickening if my heart wall. Also my mitral valve prolapse with regurgitation was showing more leakage. Continued suffering but looking for help.
2018- had a hysterectomy (left ovaries)in June due to severe endometriosis and hemorrhaging. 7 days after surgery I was at home recovering and started feeling as i described a “fish out of water”. I had this severe doom feeling and my husband rushed me to the hospital. Due to me just having surgery and what I was exhibiting I was rushed to CT and not even 15 minutes later a doctor entered my room and I knew something bad was happening (as a nurse I am well aware doctors don’t come in that fast after a scan unless it’s serious). My husband and I were informed I had three blood clots in my right lung and that I was critically ill at that time. I had just had a pulmonary embolism. My heart shattered as I know the chances of death are significant with PEs. I remember apologizing to my husband and making him promise me if I did not survive to tell my children everyday how much I loved them and to take good care of each other. I was especially devastated because I had an 11 month old whom if I passed wouldn’t even remember me. I went to ICU then step down and by the grace of God i survived. I still have lasting effects from that event but it made me more determined than ever to find answers. I was referred to Mayo Clinic in Jacksonville at that time because I also had developed an autoimmune disorder that they say was probably brought on by the traumatic event with the PEs. In October 2018 a week after we had been tragically hit by Hurricane Michael we made the slow trip through the aftermath of that beast to Jacksonville. Then it all truly starts going crazy.
2019- diagnosed with Graves Disease and was being treated aggressively because I could not get my weight up and was having severe problems from that. I also was diagnosed with an OJT obstruction which was causing me to suffer from dysphagia (still do till this day) and I will at some point this year undergo surgery when cleared clinically to fix that. I was also found to have extremely severe asthma and was so grateful for the diagnosis because back home every doctor always labeled everything anxiety to include my severe shortness of breath and respiratory problems. By mid year I was being treated by hematology, neurology, gastroenterology, sports medicine (I have a condition with hyper flexibility), cardiology, nephrology, and endocrinology. I couldn’t begin to tell you all the tests, labs, medications or procedures I endured but I finally got some answers. Not all but at least some. Mayo Clinic continued treating me and investigating everything aggressively.
2020- my care continued with a weekly trip every month for the entire year managing my care. In November of 2020 I developed a severe goiter within a week that was restricting my airway and had to immediately go to surgery to undergo a thyroidectomy. I was told I had about a 1% chance of my parathyroid glands not “waking up” after surgery and that they felt I had nothing to worry about. I remember my husband and surgeon joking that they better be careful what they said because if something could go against textbook and rewrite the rules of medicine and theory that would be my body to do it. That day they jokingly nicknamed me “rareity” and it’s stuck ever since. Low and behold that surgery that I was only to stay one night for landed me admitted for almost two weeks because the parathyroid didn’t wake up and I had fallen in that small percentage just as my husband had warned. I was able to come home two days before Christmas that year and barely remember that holiday with my kids. Then the biopsy came back as papillary follicular carcinoma. I in fact had thyroid cancer that had not been caught. We knew I had two nodules since 2018 but everyone repeatedly said appeared non cancerous and due to my clotting disorder and stayed away from biopsies. Also it was noted during this time I had developed another autoimmune disorder dealing with the endocrine system which put me up to three at that point. Two within my endocrine system and fibromyalgia. I also during this year had an awful experience were I ended up having an ovarian torsion and had to have emergency surgery to remove my right ovary.
2021- Mayo clinic was able to keep me stabilized the entire year and I had few Ear trips and no hospitalizations. I for the first time in years had a glimmer of hope.
2022- mid year I started having a lot of gastrointestinal issues again and symptoms of thyroid problems again. Went back to Mayo and it was found my thyroid labs were completely out of control again and my tumor markers had sky rocketed. At first they thought it was the thyroid cancer coming back because they did find residual tissue from my thyroidectomy and also several lymph nodes showed what appeared to be metastasis. Through further scans it was eventually noted the thyroid bed was not were the cancer was. During that time I started having severe gastrointestinal problems again and gastroenterology started attacking it head on.
2023- I had my semiannual 3D mammogram (follow me close due to dense breast tissue, family hx and previous worrisome lumps). I knew something was different when the radiologist came in and had this sad look on her face and informed me that I had two lumps in my left breast (I hadn’t discovered them) and also a mass in my left armpit area that I needed a biopsy but first they wanted a MRI done to get better visualization of what is going on. Also Gastro wants an endoscopy and colonoscopy done to immediately get biopsies sent out as they have great concern there also. In the meantime I ended up in the ER there two weeks ago and couldn’t go to my scheduled endoscopy because my blood pressure was out of control and during that visit the performed an echocardiogram and found that I have a new problem with my pulmonary and tricuspid valves. So now I have 3 out of 4 valves prolapsed and regurgitating. After seeing hematology/oncology this past Friday via zoom he has ordered certain tests to see if I am suffering from a rare condition called carcinoid syndrome (look it up) of which would explain almost every issue I have to include the new findings in my echo report.
I literally could go on for weeks giving more and more details but I think I have at least shared enough to explain my exhaustive situation.
I was supposed to leave today 4/25 to head to Mayo for numerous appointments, more lab studies, radiology studies, biopsies and more on 4/26, 4/27 and 4/29 but at this moment I can’t come up with the funds to go because as we all know hotel rooms are expensive and I need one for three nights plus gas and food money for myself and my three daughters because I have to take them with me to continue their homeschool studies and also my husband has to attend school all day. I just don’t know what to do at this point because I’m unable to figure out this week but I know when dealing with cancer or finding out details and needing tests it really is a time sensitive matter. I already missed these appointments over the last month some once and some twice because after paying bills we just couldn’t come up with the funds.
So here is where I put my pride aside and mostly for my children because they need me I am asking for any type of donation that you may be able to give. Every $1 helps and I totally understand everyone is struggling financially and another reason I hate to even do this but I am beyond desperate. If you can’t donate I kindly ask that you spread and share this fundraiser in hopes maybe it can get around enough that I can come up with the funds and make it to my appointments.
i thank all of you for reading this fundraiser, donating and/ or sharing it. It truly means more to me than you will ever know!!!!
