Double Lung Transplant - The Ultimate Gift of Life
#rachelsnewlungs
Hello ~ A little back story ! My name is Rachel, mother of 3 ( My two oldest are grown and 14 year old daughter lives with me) I work full time for a digital marketing agency doing SEO and I LOVE my job and LOVE SEO. I love to read, draw, paint, treasure hunt, love music, to cook, the universe, my family and friends - not in that order.
My girls and I - Last Summer before I started getting really sick. I progressed so quickly :(
My babies
Short story version - After being sick for many years, in August of 2018, I was finally diagnosed with Interstitial Lung Disease , which was caused by my auto immune disease. I have Rheumatoid Arthritis along with Sjogren's. Basically, my immune system attacked my lungs :( I had an open lung biopsy on November 1st of the same year to find the best course of treatment. Unfortunately, the prognosis for ILD is not great 3 to 5 years is average, but everyone is different. I started treatment right away, but unfortunately continued to progress. When I started infusion therapy this year, my Dr's agreed my lungs had stabilized! This was great news! The CT scans were showing no further progression. You can see my FB blog page here. My Interstitial Lung Disease Journey I started this page to help other people who were diagnosed with the same illness and who were looking for answers, support and a friend. When I was first diagnosed, I was scared and scoured the internet looking for someone, ANYONE to talk to. My page has helped a few people and I thank my wonderful warrior friend, the beautiful and amazing Danielle, who encouraged me to start it and to openly share my journey. She and I have similar illnesses. We say, "different, but the same". There has been A LOT Of ups and downs, tears, frustrations, laughter...it has definitely been a journey! After hiding my illness and being ashamed of it, I decided to embrace it and help others.
Prednisone "Moon Face"
Back to the topic - Because this is a progressive disease, my amazing Dr's at Washington University/Barnes Jewish Lung Center referred me to the lung transplant evaluation center. So, about two months ago I was evaluated to be considered as a potential candidate for a lung transplant. I was told I was a great candidate, but not ready yet. I had high hopes when they told me it could be another 3 years before I would be listed. Unfortunately, all that changed quite quickly. 
Me in the Covid Unit - Covid LOCK DOWN!
I made an appointment to see my lung specialist on Friday and they admitted me for severe hypoxia and pneumonia. Because of COVID-19 precautions, I was whisked away to the Covid lock down until until I could produce a negative Covid test (originally they wanted two). Once determined I was Covid negative, I was finally moved to a room - but I was moved to a room in the pulmonary lung transplant unit. I am finishing up the final tests to be listed this week. They don't know what happened with my lungs, but My oxygen requirement shot up to 15 liters :( So, unfortunately, it is time. I am still in the hospital and not sure if I will be allowed to leave or if they will allow me to go home to wait for the call. So, I have my laptop and am working away , with a beautiful view of St Louis!
Although I have taken steps to prepare for this journey, it came as a HUGE surprise and I am not financially ready to move forward. I have taken as many precautionary measures as possible to help with the costs (extra policies, vacation, sick time, savings) but I thought I had more time - like years. I am so fortunate and blessed to have a good job, health insurance and this opportunity for a new life and I know so many people in my situation do not ever get this chance for one reason or another. So, starting this Go Fund Me is extremely difficult for me to do - to ask you, my family and friends( and I am sure many, strangers) for help. These funds will be used to cover my MAX Out of Pocket costs (the 20% my ins does not cover), other medical expenses I will incur, co pays, food, travel 5x per week to Dr's appointments for 3 months, my care givers expenses and to help me and my daughter get through this journey financially until I am able to work again. They say 3 to 5 months, but I am hoping I can hit the floor running and give it all I've got! I can provide an accounting of funds spent to anyone donating.
Getting new lungs is not something I am taking lightly. After all, someone has to die in order for me to live. Through my angel donor, I will be given a second chance at life. I can't wait to meet my angel donor's family as I will do so many good things in their honor! I plan to be an advocate for lung disease and transplantation as well as organ donation.
If you can please donate, please do. Any amount helps. This is all happening NOW! Copays are all due NOW :( If you are unable to donate, sharing this would be amazing. I have seen so many people benefit from the help of complete strangers through Go Fund Me. I have always been a giver - donating time, money, resources, helping the community when I can. I help the addicted, the homeless, the unfortunate. I WILL pay this forward again when I am healthy and strong again. I promise this to you and to my angel donor. Also, if you can't donate, I ask you to PLEASE consider being an organ donor. Thank you for your consideration and please, be good to each other. #rachelsnewlungs HELP ME BECOME RACHEL 2.0 - The Bionic Woman :)