‘Here is the scoop as I have been told. The 7cm benign tumor turned out to be much bigger. The doctor tried to get it all out by using scope, but nicked an artery. She was given blood and they had to open her up to ensure that they had gotten the whole tumor. Last time I heard she was headed to recovery at 5:30pm. Mind you the surgery started at 8am. I want to thank everyone that keep her in your prayers. She will probably be in the hospital longer than expected, but she was doing fine.’ -My mom’s post on my facebook wall. October 17th, 2009
(
Warning: This post has details of my surgery and hospital stay.)
What was supposed to be a routine Laparoscopic surgery to remove a benign tumor from my liver turned into a Hellish experience. I will never forget the morning of October 16th, 2009; it was cold, raining, and still dark. The night before I hadn’t gotten any sleep, worried about my first surgery; I had made up a will on post-it notes just in case. Little did I know how close I was to death's door the following day on the operating table.
6 months prior I was referred to a liver specialist about a mass they had found on my liver during a visit to the ER. Dr. Flynn was a kind nice man who took his time getting to know me, after having a biopsy on the mass he confirmed it was FNH (Focal Nodular Hyperplasia) which is a fancy name for lesion on the liver. He said it was 7 cm, a lot bigger then I was told at the ER it was on 7mm. I told him it was causing me pain so I had planned whenever I had enough time to recover we’d do the surgery.
Long story short, the University I was going to attend did not work out; so in September I visited Dr. Flynn, we made plans for the surgery to be done in October so I could attend class at my local community college in the Spring. I had another MRI done, a gallblader test, blood drawn, etc. Dr. Flynn had gone over the surgical procedure with me saying he’d do it Laparoscopically with tiny incisions, and I’d be out of the hospital within 3 days.
Fast forward to waking up in the recovery room, nurses surrounding me ripping off patches on my chest. My dad was asking me a billion questions, meanwhile I was seriously out of it. I had heard the nurses say ‘it was the size of a Nerf football’ and my dad asking if I was supposed to look that pale. I had lost a lot of blood, I needed a blood transfusion. That night I was in and out of consciousness and ate ice chips for dinner. Things had gone very, very wrong.
That night I spiked a fever of 104.5, my body was fighting off infection. I was so alone in my hospital room, only visited by the nurses who would come by and take my vitals. I had learned the ways of the pain pump quickly, along with the pain scale. Saturday was blurry, more meals of ice chips (I couldn’t even drink water until Sunday).
Sunday I was able to view the full extent of the surgery on my body. I was horrified and shocked, the nurses continued to bath me with the sanitary wipes as I just …stared. I was hooked up to an IV, a catheter, a drainage tube attached to a bag leading out of a smaller incision in my side, and leg pumps to keep the blood circulating in my legs so blood clots wouldn’t form.
The nurses then dressed me in a new hospital robe and made me get up and walk. I stood up clutching the IV pole for dear life, gasping as if all the air was taken from my lungs. Why was this so hard? I just had to walk across the room. My legs refused to move, literally turning to jelly as I cried in pain and frustration trying to stumble forward.
Over the days I was beginning to recuperate; walking up and down the corridors, getting up to go to the bathroom on my own, and my meals of liquids turned into solid foods. Dr. Flynn came in on the 6th day and decided I was fine enough to be released home and decided to take the drainage tube out then. Oh sweet mother of god christ all mighty. Thank god he had not taken it out in his office, the pain was HORRENDOUS. Luckily I was still on the pain pump, even then it was torturous. Imagine someone pulling a plastic tube from inside of you. Yeah.
That night my dad took me home, it was quiet in the house. But I was relieved not to hear announcements over an intercom of ‘CODE BLUE’ ‘CODE YELLOW’ ‘CODE RED’. Constant buzz of the medical helicopter landing on the roof, more announcements of trauma and death. As I settled into my arrangements of pillows, I had never been more thankful to be in my own bed.
Flash forward to 3 and a half years later this nightmare was far from over, I had not thought the growth I had would come back. I had several small growths since that surgery, one caused me enough pain that I had lost my appetite, lost a significant amount of weight, and I had become so lethargic I slept all the time.
My surgeon Dr. Flynn had recommended an alternative approach to these small but painful tumors we had set up an appointment with Dr. Doherty and he scheduled me for a bland embolization, a simple out patient procedure. He had explained it in detail, but simple enough for me to understand.
The doctor made an incision in my groin, then went up my main artery with a scope and fed the tube into the smaller arteries that lead to the tumor. The process is to close off the blood supply to the tumor from the arteries so it starves the tumor to death. He then shot little pellets closing off the blood supply that fed the tumor, and within a week the mass was gone, I was pain free and happy and back to my normal self.
That was a year ago, around December I had started feeling the same lethargic, pain, and lack of appetite. By February I knew it was time to schedule an appointment get my MRI and have Dr. Doherty check up on me. He had found a couple growths had gotten bigger in size and one was pressing against the capsule of my liver, like the one he got rid of before. So I scheduled to have them embolized again so I could get back to school and get back on track.
A few days before surgery I received a letter from the insurance company saying my procedure was denied and it wasn’t covered under my mother’s insurance policy deeming it was ‘an experimental procedure’. They sent a letter stating the appeals process, the initial doctor said ‘no, it’s experimental’, well then we waited for word from the Interventional Radiologist (peer review) to say about the procedure. We were supposed to hear something from them April 27th, well that’s when we stopped hearing form the insurance company and no one was giving us answers.
This was when we sought help from the Florida Insurance Commissioner to have the company release the information, United Health Care had up until the end of the month, 2 business weeks to give us the information on what the Radiologist said or they’d be fined and in big trouble. At this point we thought the radiologist had approved my surgery hence why they had not given us the information.
Lo and behold middle of May my mother who was at her wits end, after going to the hospital three times with me because of my level of pain and countless specialists who couldn’t figure out what was wrong besides me liver and dismissed my case. She called United Health Care for the status of the appeal, they had informed her it was closed.
Long story short, they had come up with some form I had not filled out to proceed with the second appeal. Well, the next day we were informed that they Interventional Radiologist has reached his conclusion and pronounced the bland embolization ‘experimental’.
The doctor’s office then referred me to a surgeon, since the insurance company had said ‘we’ll pay for the surgery, just not the procedure’.
Fun facts I learned:
- The bland embolization is cheaper than the surgery
- The surgeon informed us from the locations of the tumors he cannot get to them via laparoscopy or with general surgery without causing major damage or, death.
- Previous internal liver scar tissue plus the pain from the current tumors is probably why I’m in so much pain, so doing surgery would make it worse.
- The locations of the tumors are in dangerous spots as well to get to surgically, through the bland embolization it’d be perfectly safe because it’s internal and relies on the veins to maneuver to get to the growths they’re feeding, cut off the supply and the growths die off and disappear as proven by the first procedure I had done a year previous.
So now the surgeon I saw today wants to fight the insurance company because the bland embolization is my only option. He’s a liver surgeon and he’s not comfortable doing the surgery that United Healthcare covers. So now the surgeon and my doctor are going to fight till the tooth and nail for this to get appealed again.
What if that isn’t enough? What if the insurance company still deems this procedure an experiment they’re not willing to pay for? Am I to live out the rest of my life on Percocet in and out of pain management? A 20 year old girl should not have to live off Percocet to get through her day, and not even Percocet is helping at this point.
So what I’m going to do now is fight. I’m going to fight to have my case heard. NPR, NBC Nightly News, I don’t care.
I’m tired of being swept under the rug. I’m tired of having to live this way, this is no way to live. In pain every day, hospital ERs not caring and specialists suggesting pain management because they don’t even know what wrong with you and you know more about your condition than THEY do.
I don’t want comments of ‘I’m sorry I understand’ or ‘I hope they figure out a way and help you!’, no I want people who will promise me to stand by my side and help me fight this. I want people to write letters like I will to NPR, MSNBC, news networks, medical sites, insurance sites, ANYTHING, EVERYWHERE.
As you can see from
these pictures there's a huge difference between the surgery the health insurance covers and the 'experimental procedure' that has been proven to work before, with less visible and internal scarring
So please SPREAD THE WORD and stand beside me and help me FIGHT AGAINST UNITED HEALTHCARE. I will dedicate my time to help others that also have trouble, if I have to I will be the spokesperson for those have been denied procedures that are less invasive, medicines that are more costly but more effective for treatment, and people who've gone through countless doctors trying to find a clear answer for their problem without being jerked around by the Insurance company.
Thank you for taking the time to read and understand my frustrations, and thank you even more to those who spread my message.
Sincerly,
Courtney Rose
