Jan 06, 2009 - 11:41 pm
A year ago last October I began bleeding profusely. I had bad periods all my life but recently they had been worse. I had not been to see a dotor regularly as I had some bad experiences with doctors in the past. But on this night when the bleeding didn't stop and I nearly passed out I knew I was in trouble so I drove myself to the emergency room and told the admitting nurses that I thought I was bleeding to death. I was very close and quickly admitted to ICU, given 4 pints of blood while they tried to stop the bleeding, and a nurse sat with me all night as they were afraid because of the loss of blood my heart might fail. By morning they had stopped the bleeding and I had an MRI which showed a large fibroid tumor. The doctor who admitted me the night before was a God-send. She sat on the edge of my bed and told me she had good news and bad. The good news was it was a fibroid tumor and that was the best I could hope for. The bad news was it was huge ( they estimated 10 pounds) and it was laying on my liver and kidneys and they were worried about damage to the organs. The next day they performed a partial hysterectomy. Since they saw no signs of cancer they opted to leave the ovaries. Everything went smoothly and there was no damage to the other organs. Two weeks later as I lay on the table at a follow up appointment my doctor's associate informed me the the pathology had come back and the tumor was mostly fibroid. At that moment he was called out of the room to take a phone call and I lay there for 15 minutes waiting for the rest of the sentence. He returned to tell me that there had been very early signs of endometrial cancer cells involved in the lining of the uterus and they would schedule an appointment with my doctor in two weeks when she returned from vacation to decide what to do. I cried for two weeks. When she returned she scheduled an appointment for me with the cancer clinic at the University of Iowa Hospital and told me that this was by far the best cancer to have because surgery and maybe radistion were a 99% cure.But I was scared. Years ago I watched my grandmother die a horrible death of lung and brain cancer at the U of I. I've been estranged from my family for over 30 years and while I have wonderful friends for the most part I was on my own going through this. My first appointment I sat alone and scared for hours as the doctor was late and when he did arrive I told him I was just about to leave. His response was, "Who's stopping you." He decided that they had to go back in and remove the ovaries and tubes and do biopsies on the lymph nodes. By the time the second surgery was scheduled my family whom I had not wanted to have to deal with on top of all of this were back in my life "wanting to take care of me" but really only concerned that if I had died they would feel guilty. I had the second surgery December 5, 2007. When they opened me back up they found that I had a serious infection in the first surgery which had they not gone back in and found might had killed me. Lucky for the second surgery. They also found out during the usual tests before the surgery that I was diabetic (the doctor who found this out called me and bluntly said, "You're diabetic," and informed me that he really didn't want to be my doctor but if he had to he would. I went to his office and his nurse gave me a bag with a glucose meter and a paper wih a diet plan on it and that was the extent of my diabetic training. My wonderful GYN said she would help me with that and she did her best. 2 days after the 2nd surgery I had a minor stroke with a nurse standing by my bed. Luckily, she ran out of my room and found one of the leading stroke doctors in the world standing there. I was immediately moved to ICU where they began a 3 day procedure to put a stent in my brain. 3 days in which there was an ice storm and no one ( friends or family ) could get to Iowa City and could get no information on what was going on. I went through 3 days of hell totally alone during this procedure in which I had to lay flat on my back and threw up constantly ( apparently that is your brain's response to having a line shoved through the artery in your groin up to your brain and a metal tube placed in a blood vessel.) The day I was brought out of ICU after this ordeal I had a cancer doctor walk into my room and because I was not smiling ( I didn't feel well) he got in my face and told me in front of a half a dozen students that I didn't know how lucky I was and if I didn't he would be happy to take me down the hall and show me some real cancer patients. I was home in time for Christmas. However the doctors and the hospital billing department screwed up paper work so badly that the insurance company cut off my disabiltiy checks and since I had not worked in 3 months by that time I had no money for food or rent or utilities let alone Christmas. The visiting nurse who came in every day to check and dress the wound called Iowa City several times just before Christmas and told them she thought I was getting another infection but they didn't want to do anything so on Christmas day when my temperature started to rise and I got a horrible pain in my stomach I called the doctor on call who said there just wasn't much they could do as it was Christmas and even the pharmacy was closed so I waited until the next morning in terrible pain and called Iowa City again and made an appointment to be seen as soon as possible. I was readmitted for a raging infection and my incision was opened for the 3rd and then 4th time. This time it was decided that it would be packed and let heal that way so it could be watched. I spent NYE in the hospital again alone and New Year's Day a doctor got mad at me because he wanted me to dress the 7 inch hole in my stomach myself after having it oopened 4 times in 3 months and having a stroke. When I told him I couldn't manage it he informed me that he was there on a holiday for the benefit of me and my fellow patients and that I was not very cooperative or appreciative. At that point I was leaving the hospital with or with out his approval. I spent a total of 5 1/2 half months recovering so I could go back to work and while I was lucky that there is little residual from the stroke and I am 1 year cancer free, my disability was cut off 4-5 times during this period because of paperwork snafus. The hospital billed me for the brain stent since the insurance denied it twice and I told them I would pay what I could until it was paid off but I had been off work with no paycheck fo almost 6 months. They finally admitted that they knew the insurance wouldn't pay for it and took the charge off my bill but then a mysterious charge showed up that they turned over to a collection agecy which was calling 5-6 times a day demanding payment. After some investigating I found that not only was it a bill I paid but I had over paid and it was one that the insurance would have covered if the hospital billing department had wriiten the rght refferal code on it.It's been a nightmare What good is surviving if doctors treat you like you are nothing and the hospital billing department screws up your life so badly that you nearly lose everything you had including your mind. I am back to work now but the first thing they informed me was that I had used up my family leave for the year so any doctor's appointments I had to go to would count against me and I was working 60-70 hours a week and not sleeping My family is back out of my life now as I knew they would be and which is why I didn't want them around to begin with. My father is married to a retired nurse who informed him that I couldn't possibly have had a stent put in my brain ( it's a very new procedure which is why the insurance won't pay for it) and he actually called me and told me that it couldn't be done...lovely guy, my dad. And nobody told me that while I am probably the luckiest person I know becuas things certainly could have gone a lot worse, that I would feel guilty for surviving when so many good people I know have not. Every penny extra I make goes to getting myself out of the financial hole this has put me in and all I think of is if I had managed my money better I would have been prepared for this so it's my own fault. I sit and cry because I hear the doctor who told me I didn't know how lucky I was over and over again in my head and think maybe he was right. And I am far from suicidal but I all I can think of is how much easier it would have been if I had just died that night. I know that someday I will get over this but right now it is just hard. I feel so worthless and tired and all I do is cry. I'm not asking for advice or sympathy or anything, I just wanted to talk .....