I have been on the phone with Nebraska Med setting up dates for surgery. No, not Vanderbilt! 🙂 I’ve got it straight now. Any way, I’ve been on the phone with them setting up dates for all of the procedures they have been telling me that I was going to get. Yeah, not gonna happen. That’s right, the whole thing fell through. I want to share with you my experiences with Nebraska Medical in hopes that it might help you navigate through this insane healthcare system that knows nothing about our cancer.
My Experiences With Nebraska Medical
This all began when I started looking to find an alternative to the chemotherapy that I am currently on. You see, I know it will stop working and so, I am trying to find “plan b” before there is no longer a “plan a”.
Because I am currently going to a hospital that does not specialize in carcinoid cancer I have been looking for one that had a special carcinoid clinic or specialists who have dealt with this type of cancer before. All I can say is, here we go again.
A few months ago, I dropped a pretty penny getting myself to Nebraska Medical to seek surgery on my tumors. I was hoping for a debulking. They had me fly all the way to Nebraska from North Carolina to tell me “no”. They could’ve looked at my scans and told me “no” over the phone. Instead they insisted that I make an appointment with the “liver team”.
OK, I kind of understand but my wife and I were pretty upset when we left. After all, getting to Nebraska was not cheap and they really didn’t tell me anything new. They told me that the liver metastasis were too large and numerous and that they could not de-bulk. They could’ve told me that on the phone.
They suggested surgery that would have left me with a colostomy after removing tumors in my intestines and then embolization of the liver. We left off with the idea that they would look at the scans, meet with the “carcinoid board” and get back to me. Well, if you’ve read my recent post “Radical Surgery To Fight My Cancer” then you know that they fell off the face of the map. They did not return calls, they did not email and they did not call. They were gone.
I Moved On
I had to move on. I couldn’t wait for them any longer. I gave up on them…..and then they called. Literally, out of the blue. They said they needed more information and that they had been reviewing my records and decided to go ahead with the debulking surgery after all. My wife cried like a baby and I stood there holding my phone in silence. They had made a total “180”.
The woman I was speaking with on the phone (The Liver/Intestinal Transplant Manager) on the “liver team” said that after reviewing my records that they felt that this would extend my life and that I was young enough to go through a major surgery like this and do well.
I asked for the details and she said that the doctor would get as much as he could but there were no guarantees as to how much. She said that he would probably only remove the largest tumor or tumors and that I would still have cancer when he was done. We were so thankful. The idea was to work on my intestines (leaving me with a colostomy) and then de-bulk the liver after I recovered from the first surgery.
Time To Set A Date
So, I should have known from the amount of pressure that I was getting to set a surgery date that something was wrong. That exact thing happened to me in the beginning of this fight. You can read about it here in my post “Learning From My Mistakes”. You see there was an opening in the surgery schedule. God forbid somebody’s not getting cut and generating money for the machine.
I began to get pressured to have surgery within 2 weeks. My instant reaction was to say “No” but instead I asked them to allow me to check my schedule and make arrangements if I could. It seemed too “fishy” so, I said “No”. I guess I did learn from my mistakes. I scheduled the surgery for a month later. That date has not yet passed. I decided to go the Cancer Treatment Centers of America first. You can read about that experience here. I wanted to get as much information as I could before I let them cut me to ribbons.
3 Questions Saved My Butt, Literally
Now that I had scheduled the first surgery for a month from now I felt that I had time to ask a few more questions. You see, there were some doubts I was having and I wasn’t getting answers from the “Liver/Intestinal Transplant Manager“. Now, don’t get me wrong, she called but wanted to talk about the Devils winning the basketball tournament and other mundane things. I don’t get it. I’m trying to find out if I”m going to have chemo after surgery and she’s talking sports. Other times, she just rushed me off of the phone.
She called again and I finally pressed her regarding the remaining three questions that I had.
1. Would I still be on chemo after the surgery?
2. Who would remove the lymph nodes that were diseased?
3. Would I be able to have a follow up surgery to remove the remaining tumors in my liver?
She refused to answer and insisted that the doctors would refuse to answer as well. These 3 questions saved me from getting a colostomy for no good reason and “saved my butt”. Get it?! Get it? OK, I apologize for that one! 🙂
I Was Up All Night
So, her final statement that the doctors involved in the surgery would refuse to answer my questions kept me up. I knew it wasn’t true. What bothered me the most was that not only did she refuse to answer the questions but she refused to even ASK the doctors. How can I go through such a life changing surgery without some of these answers? How can I trust a hospital that won’t answer my questions. I was up all night and so, I took my own advice and wrote an email.
I copied every doctor involved in the decision making process, every nurse, every receptionist and anyone else whose email I had obtained in this situation. I laid out my case and told her, and them, that I was up all night with worry and felt that I was owed these answers as a patient. All of a sudden she was willing to ask the doctors. Then the hammer fell.
No Surgery Was Planned At All
That’s right, no surgery was planned to debulk my liver. The plan was the original plan. Colostomy bag and embolization. HUH?!!!! How did we get here? Thank God I asked and pressed for answers to my questions. You see, once she asked the doctors they corrected her. She got it all wrong. How? I do not know but this whole thing has been a nightmare. So, here comes the big apology, right? Nope. She talked over me, interrupted me and tried to save face. As it turns out, she has only been there a few months (at least that’s what she told me) and I guess did not fully understand the doctor or misinterpreted him. Either way, this has caused my family quite a bit of pain. My wife was in tears, I was crest fallen. How is this possible?
Here’s the crazy part. She didn’t understand what embolization was. She is on the phone trying to explain herself and starts to explain to me that I will be getting bland embolization with chemo. I shook my head and asked her to repeat herself thinking that I had heard her wrong. You will be getting bland embolization with chemo.
Here’s the problem…..those are two different things. There is chemoembolization and bland embolization which has no chemo. I explained that to her and asked her if I was misunderstanding. Hey, I’m just a guy trying to figure this out so I try to stay as “humble” as possible and always assume others know more. She said she had just been through a PowerPoint presentation that day and I had it wrong.
Well, that did it. I knew I wasn’t going to Nebraska for surgery unless I was sedated, kidnapped and forced….and I would still run away when I regained consciousness. A PowerPoint presentation?!!!! OMG!!! I’ve given those and sat through them. She’s just learning this now??!!
I Am Planning A Formal Letter Of Complaint
I’m not a complainer. Never have been and never will be. My friends always laugh when I get served the wrong food in a restaurant because I eat it anyway. It’s just my nature. Here’s the thing. In cases like this you must go against your nature and complain formally. Why? Because some other patient is getting bullied off of the phone, ignored and may end up with a useless procedure that changes their life and not always for the better. I’ve never written a formal letter of complaint before so, if you have tips on getting heard by the important people in a hospital then please share them. I don’t want to ascribe any motives to these behaviors but I feel a need to be heard.
I hope my honest account helped you in some way,
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