Rare Lymphatic Disease and Blood Clots in lung

Hello my name is Casey. I am a 32 year old woman who was born with a rare lymphatic disease called Lymphangiomatosis. I was diagnosed in 2014, the same year that scientists and doctors finally gave this rare disease a name. Lymphangiomatosis is a rare lymphatic disease where benign tumors grow on or around any organ. It is different for every patient. Sometimes it's only one organ affected, sometimes it's multiple. This disease also can affect your bones, people with lung involvement usually have bone involvement as well. I just so happen to have the lung involvement, my tumor is connected to my right lung and chest wall. It is on the outside of it and is about the size of my closed fist. It is currently still there. I haven't been able to get treated for this rare disease, because there is no specialist that treats this in my home state of Washington. After being diagnosed with lymphangiomatosis, I ended up going to the hospital because my chest pain was becoming excruciating. I was working at a cold storage in Bellingham, where I processed fish and when I was on the salmon line pulling bones from the salmon, I remember I could not breathe when my head was down. Every split second I had to raise my head because I felt like I was suffocating. That's when I decided to go to the hospital. I rode the bus there walked in and admitted myself, told them my symptoms and they gave me a CT scan. The next thing I remember is a doctor waking me up telling me he put me on an IV drip of blood thinners because I had a large blood clot in my lung. When I asked the size of it he told me, I can't compare it to an apple or orange. What he told me was that If there was a light bulb inside my lung and he switched the light on, no light would be shining out of my arteries in my lung. He went on to tell me I was lucky to be alive because I was a walking, ticking, time bomb of death for weeks, maybe months. When I went to work at Trident Seafood I had sent my children to their grandmas so I could live at the mission and work. It was the first time away from my kids, ages 1 and 6 months. Due to separation anxiety, and lets keep it real, also due to my disease of addiction I became a full blown drunk in less than a month. The doctor had said the alcohol intake is what was probably keeping me alive. Although he did not recommend I continue to drink. He kept me at that hospital for a few days and was going to discharge me, but I told him about my rare disease and that I had a pulmonologist in Seattle at UW, and to call him first. Of course my pulmonologist said don't discharge her, send her to me. So I rode from Bellingham to Seattle in an ambulance still connected to the IV. I stayed at UW for an additional 4 or 5 days on an IV of blood thinners. When discharged they sent me home with two prescriptions of blood thinners to take daily, warfarin and cumaden. Fast forward to when I was hospitalized about 10 months ago for my second blood clot in my lung, they admitted me and told me that a surgeon was going to take a catheter down my throat and suck the blood out of my lung. The next morning the surgeon came in and said I am not going to do this procedure. Looking at your images I can see that there is old hardened and calcified blood from your first clot in your lung from 7 years prior. I discharged myself to go to Seattle where I felt more comfortable. When I got there they kept me for a few days and ended up discharging me because I seemed fine in all other aspects other than the chronic blood clot. I followed up with a pulmonoligist at Swedish who gracefully has been acting as a substitute PCP since this second blood clot, because I was moving back to my hometown once again. She supplied me with blood thinners for a year and let me know I will most likely be on them for the rest of my life. She also told me that she would order some more tests in about a year and go from there. In the last few months I have gotten these said tests done to find out that I am still walking around with a chronic blood clot filling every artery in my lung. This may sound impossible, it is difficult for me to even fathom, but it's my unfortunate truth. After my initial tests I went back to Seattle to see a Cardiovascular Thoracic Surgeon. His plan is to perform a Pulmonary Thromboendarterectomy which is basically open heart surgery where they will cut open my lung and then slice open every artery in my lung to remove the blood manually. The scariest part for me is that this benign tumor connected to my lung and chest wall is still there alive and well. it is apart of my lung and specialists have been scared to remove it and told me in 15 to 25 years they would do a lung transplant or by the time my breathing got bad enough I couldn't perform daily activities. None of us realized that I was going to get blood clots in my lung that would turn chronic and never fully go away. My team of doctors I do have thus far have been beyond helpful. Sending records all over the country about my rare disease and also sending my records to a couple other surgeons for second opinions. Now the first surgeon I have spoke with already about this surgery that I am for sure getting because I want to live, has told me that San Diego California is rated the number one hospital for this particular surgery. This particular open heart surgery is not a common one. Also I am not your common patient , I have a lot of rarities and unknowns surrounding my health. My heart is set on going to California for this surgery, because I am not a simple patient and this surgery is not a simple surgery. I feel like going to the best of the best is what will give me peace of mind. this is going to be my first surgery, other than tests and one biopsy, I am pretty scared. Funding is the only thing stopping me from doing so. I will have to travel for the consultation as well as go for the surgery. So there will be a couple times I will need to travel there. I don't want to travel alone either, so raising enough money for at least 2 of us would be amazing. I do know that, as long as surgery goes well I will be in the ICU for 3 days and the hospital for 5 days before being able to go home. I am waiting on call backs from my care team this week to update me on records being sent. When I found out about having this surgery, Aug. 9th, 2023, the estimated time until surgery was 2 months, but because I am wanting a specialist of my rare disease on board with this surgery who knows about my rare disease, it may be a bit longer. I am traveling up to Seattle in a week to get another test done to check the pressure of my heart. the longer I wait the more my heart and "good" lung will be affected negatively. So I may not have the time to get a specialist for my rare disease on board in time. I am so grateful I am clean today and want to live. I don't know where I would be if I was still homeless on the streets. It probably happens often with us addicts who get clean we start realizing health issues and become willing to deal with them. I am grateful that God is giving me a second chance to handle my business and get through this medical scare. So I can live a productive healthy life, clean and free from drugs.