This is usually a tech-related blog, but sometimes, things just need to get personal. I know, the business blogging rules are “stay away from religion, politics, personal issues”. I don’t mention politics on here, but I’m not afraid to mention that Jesus Christ is the only way to heaven. And well now, something seriously personal must be posted. It is not just that I am angry, but people who get counseled into having all of their medical records handled through the Duke University Medical System need to be cautioned. Please, for your health and sanity, stay away from this conglomerate known as Duke Medicine. I will first give a synopsis of Duke for you ADD folk, and then give you our story. If someone at Duke who can make a difference actually reads this, instead of helping or offering an apology for the way we’ve been treated throughout the years, I’ll probably be threatened with a lawsuit… just like a scorned spouse. I will attest that my statements are true. I may have missed a hospital stay or three, and it would be impossible to remember every single ER visit we have had. I have touched on the highlights, and what has stuck out in my memory the most. Names have been changed to protect the guilty (and hopefully my pocketbook)!
Duke is one of the three large hospitals and/or universities in the North Carolina area known as the Triangle. The Triangle consists of Raleigh, Durham, & Chapel Hill as well as their suburbs. Duke is big and growing. The main hospital and university is based in Durham, NC. It has medical centers across the neighboring county as well as a two smaller hospitals it has purchased. One is the Duke Raleigh Hospital and the other is Durham Regional Hospital which is also located in Durham. My wife was counseled to keep all of her medical records within the Duke system for convenience. We weren’t happy with the idea, but thought it would make seeing the many doctors easier. Here is the truth of the matter: Once a patient does this, you are stuck. If you are seeing Doctor Y and don’t like/trust him, you are not allowed to see another doctor within the Duke system for the same issue until Doctor Y “releases” you from their care and OKs it for you to see another physician. They call it “professional courtesy”, but all it’s really just DUKE RED TAPE. But that is not the best part. If you are seeing Doctor Y for issue Y, and are in the hospital Y, but are seeing Doctor Z for issue Z, and Doctor Y is not covering the Z issue while you are admitted, you must suffer! That’s right! You see, Doctor Z does not work with hospital Y, only hospital Z. So even though you still have ailment Z, which Doctor Y refuses to treat you for, Doctor Z will not see you, send some one who treats ailment Z to see you, nothing. You must suffer in a hospital! I must say that this is where the Duke Medical system really shines! I know what you’re saying because I said it too, both hospitals Y & Z are Duke, and Doctors Y & Z work for Duke. It doesn’t matter. The glorious DUKE RED TAPE strikes again! These hospitals are Duke only in name. Got a couple of problems? Too bad. Pick the one you want to deal with and go to that hospital. Your other problem will have to wait. Let’s hope you’re not in pain and the pain is shooting your blood pressure up because Doctor Y won’t cover your pain because it is Doctor Z’s job. Doctor Z won’t do anything, and neither will Doctor Y, so you’ll end up having TIAs (transient ischemic attacks, or mini-strokes for us lay people) — good luck with that; they’ll just note it in your medical record. Oops! I think I’ve said too much. If that was a little confusing, I understand. It’s been a long ride. You might want to read the details that follow.
And now for the feature presentation… Those who know me know that my wife has been ill, they may not know that she’s been ill for over 5 years, and they probably don’t know why she has been so ill.
My wife is ill and she sees a doctor at least once a week. She is overweight and various organs are threatening to fail. She wants to have gastric bypass surgery, commonly known as weight-loss surgery, to save her life, but it is dangerous. Doctors cut away the top right portion of one’s stomach that is connected to the esophagus, creating a “pouch”. The cut seals off the now-called “old stomach”. The intestine is split, and brought up to the “pouch”. The insurance company does not want to pay for the surgery. I sell my truck to hire a lawyer to “convince” the insurance company to pay. They pay and the surgery is performed by Doctor A at Hospital A. My wife is immediately nauseous, more-so than other patients. She is unable to drink any of the required protein drinks because of the nausea and lays around in pain. We are told various things at various times by Doctor A. Things like: It’s all in your head. Nobody has ever been this nauseous for this long before. And, the nausea will only last a couple of weeks at the most. We have lost trust in Doctor A.
Getting no help from Duke Heath Care at this point in time, and my wife unable to eat or drink, Doctor Primary Care put her in the hospital on TPN (total parenteral nutrition aka IV nutrition). Having no trust in Duke Medical, she starts to see some very smart people at UNC hospital. Doctor UNC prescribes her some drugs that help her to eat a little, but she still vomits almost daily. A pain develops in my wife’s stomach area, Doctor UNC does an upper-GI (which takes a camera down one’s throat to look in the stomach). He notices ulcers around the surgical site and can also see the staples from the surgery. Unfortunately Doctor UNC doesn’t do surgeries, and the surgeon that does is booked for months. Doctor UNC encourages us to return to Duke who can do it quicker. We grudgingly return to Duke, absolutely refusing to see Doctor A again, who thankfully has retired. We see Doctor NoName at Duke who introduced us to Doctor B. We have a love-hate relationship with Doctor B for the rest of the current story.
Doctor B goes in and performs what is called a gastric bypass revision. Doctor B cut away the ulcers, removed the decaying food that somehow entered through the bottom of my wife’s unused “old stomach”, hooked everything backup up, keeping the bypass intact. Additionally, due to bad heart burn, a nerve was cut that makes the body make acid. My wife exits the surgery with a G-tube, a feeding tube connected directly into the “old stomach”. The nurses do not pay attention and begin feeding her protein drinks through this tube in her stomach. I will spare the details, but the protein drinks contained lactose & my wife is lactose intolerant. I will just say that she was severely bloated.
More ulcers. Many ER visits to various hospitals around the area, multiple times per week at some points; if she lasted 3 days between ER visits, it was great. New pain in the side (where the G-tube) was! Malnutrition is becoming evident. Hospitals think that she is drug seeking. She needs greater and greater amounts of morphine to kill the pain. Still unable to eat or drink much, she is put on IV fluids at home. Doctor B referred us to Duke Pain Clinic, but at first, not to the side that handles pain, only the side that deals in psychiatric stress relief. What a crock! After jumping through those hoops, and REDACTED, she is allowed to see someone for pain. Doctor C begins treating her for Fibromyalgia. This helped most of the pain, but not all of the stomach pain.
More malnutrition, even though she is given medicine to make her want to eat. It helps, but not enough. She begins falling quite often. She tells every doctor she sees that her leg is getting weak & tingly. Doctor Primary Care: Nothing. Doctor B: Nothing. Doctor C: it’s weak from malnutrition, exercise. One day my wife wakes up, her leg is killing her, and it won’t move. She goes to the ER again and after a few hours they try to get her to walk… and she falls to the floor. They transport her to Hospital B where Doctor D performs an emergency surgery for a herniated disc in her back. All of the other doctors had no clue of the warning signs! After the surgery she is able to lift her leg once again. She is still falling after she is home. Doctor D tells her to stop falling. Two months later, we go see Doctor E who says it is common for scar tissue from the disc surgery to push out the other side of the remaining disc, and he performs a disc fusion. While he is in there, he notices that my wife had actually broken her back in two. One wrong move could have paralyzed her.
New year, new beginnings, right? Wrong. Stomach pain is very bad. Wife is still not eating and is constantly throwing up. Doctor B says we need to “take down” (reverse) the gastric bypass. It is called a take down because they can’t really reverse what has been done to one’s stomach. What they do is, remove the piece of intestine that is connected to the pouch. They staple the pouch on top of the “old stomach” and then cut a hole in between the two, forming a new single stomach. This surgery is as dangerous as the original bypass surgery. The surgery is deemed a success although she is still having a lot of pain near her stomach. Before the surgery my wife makes Doctor B promise that her pain will be managed. This is a lie. My wife is in a Duke hospital, crying & rolling in her bed because the doctors refuse to manage her pain. Thinking logically, I begin telling the doctors to contact Doctor C at the pain clinic to figure something out. If they won’t manage her pain, let Doctor C do it. I make multiple calls to Doctor C. I shouldn’t have to force this! Doctor B’s “team” should be taking the initiative. Doctor C refuses to advise said team, refuses to come to Duke Hospital A because he works out of Duke Hospital B, and the best part, won’t even get a hold of someone within the Duke system that can handle my wife’s pain while she is admitted to Duke Hospital A. My wife’s blood pressure is so high from the pain that she begins having the above mentioned TIAs, which the doctors just add to her medical record, and refuse to take any blame. They ask, do you have these often? Um, not until you refused to treat her pain. Thanks for damaging my wife even more, Duke! I yelled at my second set of medical professionals.
Now out of the hospital, Doctor C has been giving her a certain amount of pain medicine and finally performs a diagnostic test that takes her pain away. She was pain free for 3 days. The procedure she needs for longer term care isn’t available for 6 months we are told. Meanwhile, Doctor B says that another surgery is needed because my wife’s stomach isn’t emptying correctly and it is also what is causing the bad heartburn. My wife makes Doctor B promise that her pain will be managed, again. And again, this is a lie. We beg & plead that while she is hospitalized, and the pain relief procedure isn’t available for six months, to work with Doctor C, have her transferred over to Duke Hospital B, and perform the procedure while she is admitted. After all, it’s all the Duke Health Care System, correct? Doctor B and team say that they have contacted Doctor C multiple times and no one over there will budge, help, or otherwise. Thanks Duke! Again Doctor B says that the procedure won’t be performed for 6 months.
Fast forward nearly to weeks to yesterday. My wife tells Doctor C that she needs pain medicine to cover the stomach pain until the procedure can be done. She has been taking “X” to cover the pain. Doctor C prescribes her one-third the dose, but says since this is a new, long-acting drug, it will work. Instead of “X divided by 3”, we will call this amount “Y”. Well, this new drug at “Y” does not work! We called Doctor C today and was told we could bring in the drug & prescription, and Doctor C would write a new one, of the old pills, for an unknown dosage. We thought this fishy, but went along anyway. We arrived and was made to wait to see Doctor C’s assistant. When we looked at the new prescription, it was written for 1/2 of “Y”! Now how can Duke, or any doctor possibly believe that this is acceptable? It is not only unacceptable, it wasted my time, my wife’s time, my mother-in-law’s time, and their time! It is completely insulting to first write a prescription for 1/3 the strength and then when we come in for help, the new prescription is 1/6 the strength of the original! HOW IS THAT LEGAL? IT IS RUDE AND COMPLETELY UNPROFESSIONAL. Is this how Duke expects their doctors to treat patients? And at this time, I must declare that Doctor C is a weasel. He hides behind nurses and assistants. He wouldn’t even face us. This is the second time he has done that to me personally.
We still can not even confirm that the scheduled procedure, has been moved up to next week, or if it is still 6 months away. We can’t get a hold of anybody! And, after the two voice-mail messages I left Doctor C’s assistant this evening, Doctor C might not even see my wife again. There is another pain clinic in the area that we are looking into. It has a good reputation, comes recommended, and has promised to do said procedure in less than 6 months. The downside is that Doctor C would need to refer my wife to them. If he refuses, perhaps we can have hope in Doctor B, since Doctor B is the one that referred us to Doctor C.