I really need some help/advice for a place to go for online support for Pre-lung transplant patients. I will try and be brief..but unfortunately my history is a difficult one. I was diagnosed with Stage II Hodgkins disease at 18. Had a year of chemo and 8 weeks of severe radiation to my whole body. I went into a year of remission. But then after that year was up..I was diagnosed with Stage IV Non Hodgkins Lymphoma in my lung. I had an Autologous Bone Marrow Transplant (my own marrow, not a donors) and after 6 months in the hospital, I have been in remisssion ever since..
Over the last 15 years, I have had one health crisis after another..everything always led back to either the chemo or the radiation (gallbladder and left salivary gland rmoved, Cardiomyopathy and a pacemaker put in, Sleep Apnea, on Bi-Pap machine, way early menopause, my stomach does not digest food properly, and deterioration of my lower back..2 spinal fusions with laminectomys and in need of a 3rd!) and I am on over 15 different medicines daily to keep everything under control.
Now..I face the worse yet..over the past year I have struggled to breathe..very short of breath. I have been in the hospital twice for a total of almost 7 weeks, and up until recently, all the doctors thought it was my heart. After some new meds, I met a wonderful pulmonologist, who FINALLY took a sincere interest in figuring out my problem, and did not run, because I was "too difficult a case". (at one point I truly wished there really was a "House" that existed, like the tv show..he would have loved me!) After many scans, x rays, PET scans.etc..it has been determined that I most likely need a lung transplant. I go tomorrow to Columbia Presbyterian for my initial interview..for medical history, financials..etc...I don't really know why, with all my past health history, this time I am truly petrified! I never once ever said "Why me?" I always had a positive attitude..this is different and I cannot figure out the reason! Ever since I was told "lung transplant" and received the packet (more like a small novel) from the hospital to read before my interview, I have been scared and worse yet, very depressed. It could have to do with me worrying about my 6 year old daughter...I dont know.
Anyway..again...sorry this is so long..but any advice as to where to go for online support..I would appreciate!