My Experiences With Nebraska Medical

I have been on the phone with Nebraska Med setting up dates for surgery. No, not Vanderbilt! πŸ™‚ 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 thatΒ  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! πŸ™‚

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?!!!!Β  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. Β  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,
Ed – Use my images on your blog for free – Click Here

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21 Comments

  1. This is a truely UGLY STORY! I’m so glad you’re complaining about her. She needs to be fired! NOW before she does anymore damage!

    • You know, I would like to blame her but I’m not sure it’s all her fault. After all, I wasn’t on that side of the situation. There is one thing I learned when I got my MBA and that is “If there are employees making mistakes like that then the SYSTEM IS BROKEN.” Any way, I don’t plan on complaining about individuals but I do plan on writing a clear account as to what happened. Let the cards fall where they may.

  2. Hey man, sorry you had to go through this. I read a out so many problems wuth tbe US system, I feel so helpless, wish I could do more. Hope to hear better news soon.

      • Don’t be silly….speeling is not a problem. πŸ™‚

        I have to tell you Ronny, I’m getting frustrated.
        I don’t know what to do any more.
        I guess I could try another doctor but I’m starting to think that there is no longer any point.
        Maybe I’ll just stick with my Oncologist.
        Maybe I need to try another country?
        I keep reading about DCA working on various neuroendocrine cancers.

        I started reading your post on the heart but was pulled away.
        I think I might have that but they keep saying that I don’t have carcinoid syndrome.

        < > I need a break…..gonna monkey about with my son for a week or two. If I can force myself to do that. Stopping is against my nature. πŸ™‚

  3. So sad to read all this, I had thought they knew more about the condition in US. Every one must question medical decisions in case this type of lack of education and misunderstanding is occurring. It seems all to be money driven in your case. Thank God you have had a near miss, you could have been far worse off. Try to keep positive under this dismal cloud.

    You need to write same letter to several of the top people at the hospital, as this way it is harder to hide / hush up what has happened. Don’t forget to include the nurse manager as if problems stem from the medical staff, they will jump on it to prevent blame being laid on nurses. Think politics when you write. Briefly list your complaints so they can be read out directly from your letter at a meeting, this will increase dissemination. Then you can go back and enlarge on each issue if you wish further down. Don’t say anything about money or sueing they will all be aware of the possibilities and wish to prevent the complaint escalating. State what you would like as an outcome. i.e. Better training, communication, more staff meetings, an apology, what ever you think is appropriate. I do think you should complain you will help others by doing so. Hope thhis helps a little. Stay calm and try to be positive prayers and love to you and your family. Christine

    • I think I might have the worst luck with the medical system. Yeah, a near miss is a good way to put it. I do plan on writing a letter of complaint and thank you for such good advice. I might just fire off a draft for you to read to get your opinion.

      Regarding their motives, I really cannot ascribe motives because I wasn’t there to hear the conversations. It feels like it might be motivated by money but I hate to assume. I worked in a hospital for a bit and I do know that they are ALL money motivated.

      Thanks for all of the good wishes, Christine. This last week has been a bit depressing. I need to find a way to get the stress out. I used to have a glass of red wine (or two) but I cannot drink wine any longer because it makes me sick. That wouldn’t be the best choice with liver tumors, right?! πŸ™‚ I’m sure that I’ll shake it off…I usually do but I’m just so frustrated.

      Good news….my son graduates from Kindergarten tomorrow!!!! πŸ˜€

      • Maybe take your son fishing, good relax and a great laugh when they are little. My son was frightened of his first catch and dropped the rod with fright. Fish was about three inches long. We used to use very small hooks and put every thing back. You could always use a net if you think a rods cruel. He will learn a lot and you should get to zone out you will be too busy waiting for him to fall in water, to worry about treatment. As another alternative pond dipping. He needs a reward for his graduation doesn’t he?

        I am same with wine, I didnt have it often but enjoyed it, I have alcohol free sometimes now but its just not the same.

        Yes send the letter. In England the problem is about not spending the money. NHS restrictions. I don’t have the money for private, few do here. Mostly those who do go private end up back with the NHS after a while anyway.
        They say here in NE England: Don’t let the buggers grind you down. We all need that attitude. keep looking for fun in life, good luck Christine

        • Thanks. That an Rx for a good life, right?
          I think I’ll fix my bike and go riding with him.
          I love fishing but too. Good ideas!

          Thanks for being so caring,
          Ed

  4. Ed, thank-you for sharing this story. It reminded me of my experience a bit in terms of being pressured to set up an immediate date for surgery in my liver and when I questioned why, I was told my very survival depended on it. The reality I later found out was that the surgeon was going on vacation and wanted to get one last surgery in before he left. You did well to question. Knowledge is power.

    • OMG! That is insane. I swear, if I were healthier…..grrr…..we will leave that unsaid. πŸ™‚
      Are you setting up a blog? It looks pretty slick from here. Any posts yet?
      If you need ideas, go to my links section. I have a ton of links from fellow carcinoid bloggers (not assuming you have carcinoid cancer) to inspire you.
      http://www.carcinoid-cancer.com/links/
      This is my favorite so far: https://bridget158.wordpress.com/ She is very creative….poetry, free style writing…..I really like it.
      I might actually try my hand at some creative writing because of her. πŸ™‚
      Have you had surgery? Are you ok, now?
      Thanks for commenting,
      Ed

      • I’ve been thinking about setting up a couple of blogs. I had liver resection at memorial-Sloan Kettering and surgeon did not find the primary. It still has not shown up 3 years later on scans. It was determined from genetic/ molecular testing done on the tumor by BioTheranostics laboratory to be pancreatic islet cell in origin.
        I’m hanging in there. Love your sense of humor in your writing and telling about the good and the bad. Good job!!

        • You love my sense of humor?!
          I’m gonna print this and show it to my wife!!! ha ha ha!!!!
          Seriously, thanks. If you need any help with the blog I would be happy to lend a hand if I can.
          I’m assuming you neuroendocrine cancer? I don’t know a lot about pancreatic cancer but I know that there is a neuroendocrine cancer that is pancreatic islet cell in origin. You have a lot of choices in meds. They are all directed at pancreatic neuroendocrine tumors for the most part…not sure why. I think most of the metabolic drugs like everolimus are directed at pancreatic tumors. I think CapTem was as well. They don’t work too well on me but they’re not growing right now as far as I know.

          • Yes I have neuroendocrine islet cell and it is non-functional … Meaning all blood markers are normal. Currently all my scans post surgery on liver have been clear. And then I decided to do the Netest at Wren Laboratories which tests neuroendocrine cell
            Activity on Molecular level on scale from 0-100. My result was 80 ( not good).
            I will be starting Metformin which is a drug used for diabetics ( I am not) because it is also an Mtor inhibitor and several people taking it have experienced reduction in NETs (carcinoid and others). I will then use the Wren test which is only one I can rely on to see if this drug works.
            Have you done the Wren test?

          • No, I haven’t. Can I just ask my oncologist for it? I’m still confused about all of the markers, hormones and such. I just learned about the KI67 marker but I don’t really get it. I have to read about it more. I think my oncologist is good but he doesn’t tell me things that I think he should.

          • Google Wren Laboratories. They have their own web site and there is a requisition form that your doctor needs to sign. You or your doctor can contact Wten labs and ask for the special kit that will be required for the blood. dr Modlin developed this test and you can read about it on web site.
            As to Ki67% … That should be a part of your pathology report and can vary from tumor to tumor. I have had the same tumor evaluated by top pathologists at different hospitals and got differing KI67%. Just goes to show that you can’t believe just about anything. I find myself scouring over CDs of my scans and spending hours everyday researching every possible treatment.
            By the way there is currently no charge for the wren test.

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