La's Legs!!!

Please read and help if you're able. I hate asking for help but this could very well be my last chance to save my legs from the damage that this disease has caused

Amazon:

La's Legs! (And other household needs) - Amazon Custom Gift List - https://www.amazon.com/registries/custom/3P6D3QP66WWR7/guest-view

Walmart: La's Legs

https://www.walmart.com/registry/ER/4eb33a03-e4b1-493c-a24f-2cb6a31ea715

Venmo: @LFitzgerald23

The following story is giving more people an insight as to what has been going on with me these last several years. For those who don’t know, I’ve been sick and have been diagnosed with vasculitis which is a progressive disease, I’m now disabled. On good days and short distances I use a cane but mostly when I leave my house it's in a wheelchair. This is an explanation of the treatments I have undergone and my final option to save my legs. Yes, the therapy explained at the end of this story is the last resort of my doctors to save my legs. I’ve felt backed into a corner and with no other option than to ask for help my medical bills are too high and my prescriptions can cost an arm and a leg. I’ve had to overcome my own pride to even ask for help so please don’t judge me. I find I get one of two reactions when people hear even part of my story: one of disgust or one of pity and I need neither. This was, is, my journey riddled with pitfalls and loss. It’s ugly and painful but more importantly it’s mine. I know it’s long but please take the time to read this, I need your help. On top of this gofundme, I have created an amazon wishlist and walmart wishlist for medical supplies and a few household essentials I’m in need of. The “other” is mostly pet supplies as it too is an ongoing cost. I have also added my venmo in case one method is preferred over another. Please help if you can, any way would be amazing and I can’t thank you enough for even taking the time to read my story. Every dollar helps and this is an ongoing campaign as my treatment will be ongoing. I have pictures if anyone needs proof of what I live with daily. I just thought it better to not share publicly as they are quite graphic.

In 2016 I spent four days in the hospital with pneumonia. It was there I was informed about small and large blood clots in my lungs. Nothing more was discussed about it and why would it? I was a relatively healthy thirty-one year old with no previous ailments other than my Raynaud’s syndrome. Raynaud’s causes blood vessels to snap shut and your skin goes from a healthy pink glow, to blue, to white, to purple then turn red and throb with pain. It’s so cold it burns as a thousand needles jab the affected area(s) as the blood leaves and returns. My Raynaud’s only affected my hands and feet rarely and only when I was cold.

By 2017 I was working full time hours, was able to send myself back to school full-time, and planned my upcoming wedding. There was a lot on my plate and the days were long but I took it in stride. Things had to get done and expectations had to be met. Raynaud’s can be triggered not only by the cold but by stress. I noticed my feet were killing me after a long day but wasn’t quite the normal pain one feels. Then I started to notice after a brisk walk to class my fingers began to show signs of the Raynaud’s worsening. I saw my doctor complaining about the new blanching of my hands and feet. He did all the bloodwork, everything was normal. So, he began sending me to specialist after specialist. Trying to figure out the cause of the sudden worsening symptoms. Medications were prescribed, tests and scans done, all normal. At work one day all of a sudden I could feel my heart trying to jump out of my chest and I was slightly dizzy. I called my fiance, he came to get me and to the hospital we went. I was hooked up to machines which showed a low to normal blood pressure but a pulse rate 140+bpm (beats per minute). Again, all tests normal and I was released with no reason for the elevated heart rate. Every single doctor I saw and every person that saw me in that state or I spoke about it with all brushed it off as “stress”. Monitors worn, more medications and more of the same tests, all normal. Even after the wedding I was still experiencing the same symptoms as they became more frequent. By September, I was told by one doctor to stop working and as we were financially able to, I did. A piece of me was missing after taking a large toll on me mentally.

2018 hit me like a bus. I tried to hold on to school as much as I could. One night I was woken out of a dead sleep screaming because it felt like the top of my foot was broken. More doctors and no answers. I began to notice a red spot that felt like a blister on the side of my foot at the ball of my foot. That “blister” got worse and worse, larger and larger. One day I noticed the same thing had begun in the same spot on my right foot as well. In March of 2018 I couldn’t take the pain of having to wear sneakers anymore causing me to quit school. Losing more of myself in the process. I saw a vascular surgeon from arguably one of the best hospitals in the area, more testing, no answers. I was told my issues weren’t vascular and to see a dermatologist and dismissed via email by this doctor. By September both feet had wounds on them so large, tendon and bone became visible through the wound burden. That entire year I spent my days screaming with many many sleepless nights. I saw every doctor and specialist anyone could think of only to be hopeful they found something, anything. Every single one thought they had the answer, which ranged from; diabetes, to hep c, to lymes, to lupus, queue Dr. House reference now. It became a battle every single day with its very own different version of hell. I felt hopeless, no one could tell me why my body began to fail me. I felt like a failure, my husband didn’t sign up for this. This is not where I saw myself, not knowing this would only be the beginning.

My pain was not controlled, my heart rate still spiked, and my skin liquified revealing my bones. I took every over the counter drug trying to find a moment of exhausted relief. Early October of 2019 I hit a breaking point. I had been seen at every local hospital from one specialist to the next and still no help. I was exhausted, in incredible pain, and ready to give up. My wounds stretched from the sides of my feet to the middle toes and halfway up my feet. Every step was agony while my nerves were sending shocks up to both knees. The sleep I did get was few and far between and mainly from exhaustion. Never one for prayer, I pleaded with any god that could hear me “Please do not let me wake up tomorrow.” I was beaten. I felt like a burden to everyone around me and still I didn’t know why my body was failing me. I had already stopped speaking to most people, caught up in my pain and spent my days looking out a small window from my bedroom. I never left the house unless there was a doctor's appointment and even that took special planning on my part. That small window became my only connection to the outdoors, fresh air and the sun. Showers were the worst, absolutely terrified the water would hit my feet. No one should have to live this way. Who was this person looking back at me? I used to be stronger, I used to be useful now, just a prisoner in my own home. Even now trying to get these words out is sending me back down a bad road mentally but I need to share these feelings of honesty. I retreated into my thoughts, rarely speaking to friends and family, losing touch with many of them. I even did my best not to complain but that’s an impossible task in the state I was in.

One morning, I woke up and just felt off. First it was nausea, then pressure in my stomach, followed by the most intense burning in my stomach. By dinner time, practically crawling to the front of my house screaming in pain awaiting an ambulance. This was the most pain I have ever been in. I couldn’t stop crying and screaming by the time we made it to Bryn Mawr hospital. I don’t remember much from the emergency room there I had blacked out from the pain. Until the hospitalist received the results from my testing I wasn’t even given anything to make it stop. The results showed a perforated duodenal ulcer, a tear located just passed my stomach causing stomach acid to fill my abdomen around every organ. I needed emergency surgery and almost lost my life that night. During surgery the doctors also uncovered my wounds to check for infection and assess the damage. After surgery I was barely able to move due to a six inch line of staples and a drain off to the side.

My last full day there, before discharge, another vascular surgeon came into my room. He asked my husband and mother to stay in the room because he “had news to tell me”. Never expecting the next words that left his mouth. Cultures showed nothing however, suggesting amputation of both legs would “save me the hassle” and “by the way, he was free that weekend” to do it. There was a moment of pause as we were digesting the only solution he offered. I saw red. In a fit of rage I cursed him out of the room. Amputation is akin to giving up and I’ll be damned if I wasn’t going to do any and everything that I can to help myself. It was obvious it was up to me to find the right treatment plan and the right doctor. This surgeon was not it. Hearing the word “amputation” lit a fire in me all over again and I got to work. I sought out the surgeon who was a limb salvage vascular specialist. After that hospital stay not only were there wounds on both feet but the second toe on my right foot began to turn black.

January of 2020 I spent fifteen days in Temple hospital. First, IV antibiotics because I was septic, then days of receiving my first of many prostaglandin infusions. Prostaglandin is a vasodilator trying to get blood flow to my feet in hopes of healing. While there, I received an angio who showed blood clots in my feet. For those who don’t know, blood clots are generally found within the calf when it comes to the leg. Also from about the halfway point of my calf my vessels spread so much and become smaller and smaller and by the time blood vessels reach my feet they are smaller than 1.5mm. This was my first round of surgical debridement done on both feet leaving my wounds raw and incredibly painful. The debridement revealed the bones of my pinky toe and next toe, tendons from my middle toe over on the right and on the left the tendons of two toes, both a third-half way up my feet. Unfortunately the doctors didn’t want to remove the necrotic second toe at this point fearing opening another wound. This essentially meant that the toe was dead and rotting but they were letting nature take its course and they’d address it after I returned with podiatry. I was released from the hospital in hopes of returning in a couple months to address the exposed bones after meetings with several departments. Then covid hit and shut all plans down indefinitely.

July of 2020, my second toe did indeed die and fell off on its own. That was one of the strangest feelings in the world by the way. However this left the last bone in my toe attached and exposed. I was finally able to return to the hospital for not only another prostaglandin infusion but to address the wounds. After a couple days there I had another surgical debridement. Turns out my pinky toe and metatarsal attached (long bone in the foot) had a bone infection called osteomyelitis. Due to this bone infection I had broken my pinky toe and had been walking on it for months. I finally got to meet with the podiatrist and was told that I needed an amputation on my pinky toe and half that metatarsal to remove the infection and while under they were going to remove the remaining bone of my second toe. After the surgery, I was left with an integra graft which is a collagen graft and silicone top designed to prepare a wound bed for a true skin graft.

This hospital visit however would come to show yet another problem. While sitting in my bed one evening just having a casual conversation with my nurse all of a sudden five doctors burst into my room. Turns out my heart rate had spiked to 240bpm, the average adult is 60-100 beats per minute. I was given adenosine which is designed to stop the heart, essentially resetting it. Two days later, the same thing would happen again. While just sitting in bed my heart jumped to 217bpm and adenosine was administered. The scary part of all this is, I didn’t feel it, any of it. Finally an electrophysiologist caught an abnormality on my EKG which was an extra electrical pathway between chambers in my heart causing these spikes. I received an ablation to fix this issue even though to this day my heart still rests at 120bpm.

I was discharged from podiatry and referred to a plastic surgeon about skin grafts. By the end of October I was back in for another integra graft which would end up infected. Over the following eight weeks, six would be spent in the hospital ending with my first skin graft. Surprisingly, the donor site from my upper thigh was more painful than the wounds at this point. Not sure if it's because it's a “new wound” or I had just become numb and used to the expected pains of my feet. Don’t misunderstand though, all this time I still wasn’t sleeping, crying and screaming about the pain my feet were in. That pain never goes away, the attention to pain just gets diverted overtime when it’s a pain you’ve lived with for this long.

March of 2021 I returned for another prostaglandin infusion followed by another graft. This graft mostly stuck and I was elated to see progress, finally. Then one day I woke to several hematomas on both grafts ultimately causing this graft to die. Early summer, I was able to get another graft in an out-patient surgery which would die as well before I could return for my next infusion in January of 2022. This hospital visit the plastics team would perform another debridement exposing more bone but instead of repeat grafting I was denied and left that way.

Since then I’ve been busy researching more local surgeons and recently met with a new team at Lankenau hospital. I discovered they have the means for oxygen chamber therapy which had not been an option for me until now. Among the benefits of this therapy is the ability to promote new growth in blood vessels. I’m so hopeful this will work and aid my feet in finally healing, for good. This therapy is very time consuming, two hours a day, five days a week, for thirty days and even more so financially costing upwards of $100,000. The only massive obstacle I have at the moment is insurance. My one insurance will cover 80% of this however there is still the question on whether or not my secondary insurance will cover the remaining 20%. After coming this far, I don’t want to have to decline this therapy because of money. I’ve already lost so much, to have this just slip through my fingers would be devastating.

I ask for your help right now, I’ve never asked for it before, even with my already huge medical bills. I hate asking for help with anything let alone money but I need help. I know it's been a long time since I may have spoken to many of you. I’m sorry for that. That has been because of my own depression throughout these last years. My health has taken over my life and unfortunately has become all I see, an inconvenience and nothing but problems. This is my chance to regain a life I once had. I thank everyone in advance for anything that can be found within yourselves to part with, my gratitude will never stop. You have no idea what this will mean to me.

On top of my own health issues, in November of 2021, Eddie had to have his neck fused, had to leave his field of employment and still he’s unable to work. I haven’t had the chance to finish my degree even with online courses being offered. Since I left before the end of a semester my loan company recalled a portion of their loan from West Chester. Now, I’m told in order to even get my transcripts I owe West Chester University $2700. This is money I do not have and I’m lost as to what to do now.