Hello, I new, first day. Most of 2014 is a blur of doctors. I suddenly lost weight and was often sick that winter/spring. I chalked it up to working to hard at school, my daughter graduating high school and my husband's military retirement after 23 years. Plus my mom moved in with us that January. In June I was told that I had a partially collapsed and pinprick "leak" in my right lung. In mid July (2 weeks into his retirement) I was diagnosed with pneumonia twice. I've had it many times & felt like that was wrong because I wasn't sick. I had this pressure in my right chest. Little cough. A few days later I broke my toe. The day after that I was in the ER but have no memory of how I got there. I know that I was thinking that it was lung collapse because I made a facebook status about it not being that but that I had a PE. I had a CT & they found a large clot in my right lung as well as evidence of "numerous " previous clots. I was moved to ICU and was given clot busters. They said it was unprovoked. I had a dvt check in June. I wasn't on birth control, no long trip, etc. It's still unknown. I remember having chest pains that could only be better if I wedged my right chest into the crack of the sofa cushions so that I was dangling. I remember being restless and sitting next to my husband and asking him if I was dying, is this what dying feels like? A little later I sat on the floor by my moms feet as she was on the computer and asking her the same questions. I thought she'd know because she is a nurse. Instead I got a lecture on how I need to take care of myself better. Our relationship has never been the same.
After about 3 days I was released with a list of dr appts and a new way of life with Coumadin. Me & my surgical shoe, broken toe & cane drove myself to the base hospital to go to the Coumadin clinic and since I got done early, I decided to go to the pulmonary clinic early.. The soldier who took my vitals ran off suddenly but I didn't worry. My fast heart rate had caused that reaction before. All I remember thinking was hmm, that blood pressure is a bit low. The doctor took me right in and started questioning me. He said he had an idea of what needed to be done but would I mind letting his resident question me. Sure. Figured that nap I was desperate for would have to wait. The resident & doc agreed. While one ran off the other explained that I needed to go to the ER NOW. In comes the other doc with a wheelchair and he personally took me straight into the triage room . He spoke to them, they got a doctor and I was hooked up to machines. I had a fever. I had a very rapid heart rate. I had very low blood pressure. I was in shock. Not surprised shock, actual shock. My organs were starting to fail. My husband dashed up to the hospital, again. I had a ct and the doctors said that I had developed a large amount of fluid in my chest/lung. I had chest tubes in my right back and spent a week in ICU. The chest tube wasn't working right. My memory is very fuzzy here. I went in at 141 lbs & left at 116. I remember being woke up at 430am daily to have a heavy, cold, hard chest X-ray in my bed. I had so many blood draws that my veins were shot and they were tapping my FEET!! On July 28 it was suddenly go now time!! I was rushed into surgery with the cardiothorasic surgeon. I had a filter put in my jugular and a port in my neck. I had a severe infection in that fluid and it was killing my lung. I lost a mans large fist size hunk of lung. They also scraped off my pleural lining of the lung so that it would attach itself to my chest wall so that it wouldn't collapse. To this day whenever I take a deep breath or yawn I feel like I'm being knifed in my back. I also got a new, bigger set of chest tubes. They had to crack my ribs to get them in. I was finally put into a regular room. I was there for at least another week. It was a blur of little sleep, being awakened at 4 for daily weight, ekg and transport to radiology for chest X-ray. I was only able to lay on my left & developed a nasty pressure sore on my ear and lost cartilage. It took 6 months to heal. When I was finally released I was a walking skeleton because I had developed hyper metabolism. When I finished my antibiotics two weeks later I immediately developed pneumonia in my right lung. Through all of this I wasn't afraid, I was numb.
Because all of this happened in the middle of my packed summer school schedule I had to take incompletes in my 4 classes. In order to pass I had to finish all the coursework by midterm but completely on my own as I had missed all the class time. These were classes in my degree field so very important. I did accomplish this by the grace of God. Then I hit the wall like a runaway freight train. Something happened to me, I was having hallucinations and was just all around a mess. I began to swell all over. I was carrying around 20lbs of fluid and had to wear pants 4 sizes bigger because of it. I eventually found out that was from low albumin from not enough protein. I was severely iron deficient, B12, vitamin D, magnesium, and a few others. I was on prenatal vitamins plus individual supplements. This went back to my infection hospitalization.
I was still under the influence of the wall when my sister came for Christmas. I was hugely swollen and my abdomen looked like I was bleeding from the inside out. When they were leaving that night I went to the bathroom and was horrified to see a bowl of blood. Back to the ER. (I had also been there several times since my surgery for extreme abdominal pain). The doctors did the blood work and redid it because they thought it was a lab error until the 2nd confirmed my INR was at 20!! They were just about to release me when the results came in. Back in the hospital. I was released on Christmas Eve but for the first time I couldn't make it to Mass.
I had to drop out of school with only a semester left. I fell into deep depression that I am still in badly. Is this normal? I mean the not showering or get out of bed depression. No matter how much I ate I couldn't gain weight. I suddenly realized while I was in at Christmas OMG I could have died in July...TWICE!! In January my 18 year old daughter fell very sick with what we thought was the flu. I treated her for that but later my husband took her to the ER & SHE was in shock!! She was in ICU!! She had her organs failing! They think that she developed Toxic Shock Syndrome from out of nowhere. After that I started having anxiety attacks when I had to go to the hospital (all of the clinics, pharmacy etc are all in the 14 floor building). Is this normal? I never leave the house anymore and in the house I really never leave my bed in a dark room. Is this normal? I was on antidepressants since July but my doc took away my Valium because he doesn't want to keep his patients on it for to long. I have been having a harder time because it is the same time of year. I've been able to say "I almost died " since last fall but Holy Crap!! I Almost Died Twice, Three Times if you count my INR of 20. This realization just beat me over the head recently.
Aside from this, my problem lately is that I realized that I would not know if I had another PE because I have pain all the time because of my lung, I regularly have a racing heart. I regularly am breathless or having a hard time breathing from just talking or going up 5 stairs. I was on Coumadin for 6 months and then switched to Eliquis. It is still up in the air as to whether I'll be a lifer. I go back to the oncologist next month. I am so sorry that this is so long but this is the first time I have had the chance to talk to anyone about it. I have my husband, kids and friends but I have my poker face on most of the time. Leftover habits learned from my long career as a Marine Corps wife I guess. Anyway, if you've made it this far, thank you. Am I normal? I am trying to crawl out of my depression. I'm still so so tired. I also have two other genetic diseases that I deal with. Ok I Have To Stop!!