SERIES: Journey to Transplant in the U.S.
Part #3 — Diagnosis: At Last, An Answer
Note: I published Parts 1 and 2 on Medium (goo.gl/ogSrN9 and goo.gl/cjNxGe), Twitter and my own blog, danabeesvoice.wordpress.com. These are chapters for the book this will become, A Transplant Guidebook, a working title.
Diagnosis took a whole lot longer than I thought it would. Along the way were four procedures, three of them under anesthesia. Eight months passed before there was a declared diagnosis. It was defined at last in the fourth procedure.
The first procedure was done in my hepatologist’s office (Dr. Lisa Forman) with just a tranquilizer and xylocaine. She performed a liver biopsy, and I was plenty nervous about it. I knew more anatomy right then than most patients — barely. Just enough to make me worry. I knew good skills were needed for the relatively small and moving target.
The liver is almost right completely under the ribcage, and it’s the largest organ in the body. Yet between the liver and the ribcage is the right lung. You know, one of those two things that regularly expand and compress so we can breathe? There’s a tiny sliver of liver hanging below the right lung. Hence the shooter’s need to be quick with its nearly constantly moving target.
Dr. Forman had a little ultrasound machine to see where things were hanging out in my body. That gave me a tiny bit of comfort. But mostly she was very calm and seemed self-assured. She was after all a board-certified gastroenterologist before she did a hepatology fellowship.
The whole thing was done in a flash. With a gigantic, long needle that looked like a straw! I had to look, of course (I was becoming a total nerd). My friend, though, left the room — she didn’t get the tranquilizer. They already had their suspicions, and she told me the biopsy confirmed those. So far.
Next, I was referred to an endoscopist. I won’t name him, and you’ll learn later why. I’ll call him Dr. E for Endoscopist, and also for Ego. I met him briefly in his office before the procedure when he gave a brief description of what he was going to do and be looking at.
The procedure I was to have is called an Endoscopic Retrograde Cholangio-Pancreatography (ERCP). The “Cholangio” part is the main tipoff of what an endoscopist is looking at. The term refers to the bile ducts that wind all through the liver, capturing toxins, delivering them bile to destroy them, then dump them into the intestines. If all is working properly. I would eventually over 11 years of illness have 25 ERCPs, and no, that is not a record.
An ERCP provides a view, through a camera (plus some magic and high degree of skill), of the inside of the liver, and inside the bile ducts. There is full-on anesthesia (or supposed to be) then the endoscopic tube is introduced through the patient’s mouth, down through the esophagus, stomach, out through the duodenum, some complex maneuvering through complex anatomy and finally into the liver’s bile ducts. It’s all highly technical and technological. Sometimes the endoscopist goes through the pancreas at a target the size of a pencil head then into the bile ducts. There are risks, though most of them are comparatively low. At a certain early point following anesthesia, the patient is turned over onto their stomach for most of the procedure.
My first ERCP was done on my birthday, July 7, 2005, when I turned 58 years of age. My first cousin and her husband were visiting and drove me to the hospital, stayed until I was gurneyed off. I did meet with the endoscopy fellow and he asked many questions, though no medical history. (I do remember that clearly.) A nurse started an IV with just a bag of saline solution. No relaxing drugs — I remember that, too.
When I arrived at the procedure room, I was alert and by then wily and more than a little apprehensive. I had lots of questions that no one answered to my satisfaction.
Here were my questions:
1. Does anyone here know I have a seizure disorder? (No one had asked my medical history, remember?) No clear answer from anyone.
2. Who’s doing the anesthesia? One nurse mumbled, “I guess I am.”
3. Are you a nurse anesthetist? No.
4. Is an anesthesiologist coming? No.
By then, I was very, well, best word would be kerfluffled. Pretty upset, anxious and very confused. But people were moving in on me, and also pushing the gurney I was on closer to a very large machine with a couple of computer screens on it. No one was describing anything at all to me, just ordering me around and stuffing in a mouthpiece to shield my teeth, then clamping a mask over my nose and mouth. I went under and that was it for me — for awhile.
I woke up, just barely, during the procedure and tried with one hand to get The Thing out of my mouth. I clearly recall that brief view of light and accompanying terror. Dr. E later denied that happened.
He might or might not have been there. I believe the endoscopy fellow was in charge and solo once my lights went out. Besides, grapevine in a hospital — efficient.
Note To Any Patient or Caregiver
If anything like this confusing scene, including the pre-procedure business without an anesthesiologist present and asking many medical questions of the patient, whether you are the patient or the caregiver, this is the time to ring the bells. Long before the patient is carted off to a procedure or surgical room.
If you’re the patient and alone, it’s perfectly fine and reasonable to get up, get dressed and leave. I regrettably stayed, but I don’t blame myself. There should be a Patient Certificate you should be required to earn by attending online or in-person classes on appropriate steps the medical team need to take prior to any anesthetized procedure. It’s a big deal. This story turned out badly, and I lost any control I ever had. But I never lost control of the situation after this first one.
I woke up and I was somewhere in the hospital. I was unable to speak or move even my pinky, much less my whole body to get up and leave. There were medical personnel on both sides of the gurney I was on, asking, “Dana, can you move over to the bed?” All I could do was groan. The team picked up both sides of the sheet under me and moved me to the bed. The next thing I knew, I was waking up, sort of, and knew I was in a hospital room. Alone.
I’m pretty sure I didn’t have an IV because I recall getting out of bed to use the bathroom, but not having to drag an IV pole with me. I learned that skill much later on. The point I’m making: I had clearly been overdosed by whatever they were giving me. Underdosed first because I woke up mid-procedure. Then the whole thing lasted about three hours, instead of the usual 1–1.5 hours. So, overdosed.
When I wrote this whole scenario out recently, for the first time since it had happened 13 years ago, I had a lot of questions. The big one: If I had been overdosed on any drug (I think it was Versed, you know, what they use to execute prisoners), why wasn’t I in ICU being closely observed? But I didn’t ask that back then. The doctors had that information, and weren’t sharing.
The Lesson I Learned
After I returned to my usual feisty self (for a couple of days I was a good Handmaiden), I asked for help to find an anesthesiologist myself. I wanted one because this ERCP was inconclusive, so more were to come. The anesthesiologist checked me out in the all the ways that they do (heart, lungs, allergies, other medical conditions, family medical history), and I was bulwarked for the next ERCP. Still Dr. E. But he had to behave this time. My rules.
Okay, this makes me angry even to write this. I’m going to jump right to the end of the relationship between Dr. Ego and me. The second procedure, also inconclusive. There was a third one on February 1, 2006. After that one I had a major migraine going on, just like I’d had after the second endoscopy. This time I had come armed with Imitrex. I was in the first phase room post-procedure — barely awake and not too alert.
Dr. Ego strolls in and turns on a light. I told him to turn it off. Not “please will you.” And that I had a migraine. Then he smiles at me real big and says, “We have a diagnosis. You have PSC, Primary Sclerosing Cholangitis.” Still smiling. So freaking proud of himself. Because how could he be happy for a patient who just had confirmed for her that she had a really devastating disease? I looked at him, didn’t move, and said, loudly, “Get out.” I couldn’t stand one more second of looking at his egotistical face.
The next week day I called his office, talked to his assistant and asked for an email address for him. Told her what I was doing. She wasn’t surprised, and was very nice to me.
I fired him in writing because that’s the legal way to end a relationship with a doctor. I was so done.