This is a good time to remind everyone that my posts are not intended to provide medical advice. I do not have any medical training. My purpose is solely to provide a firsthand account of what I’ve experienced, what I’ve felt, what I’ve been told, and what is available to all on-line. While there are many studies that talk about the outcomes for groups of patients who have a certain disease or condition and undergo this or that procedure or treatment, firsthand accounts are far harder to find.
My story is just that — my story. Whether it has any applicability to anyone else remains unknown.
At the end of my last post, My 13th — and Perhaps Final — Portal Hypertension Bleed, I was on my way to Birmingham for a repeat endoscopy at the University of Alabama-Birmingham’s (UAB) Liver Center.
When I left for the clinic Monday morning, I insisted we bring my suitcase. I had a feeling I would not be leaving UAB after the endoscopy, and I was right.
Years ago, when I started having repeat portal hypertension bleeds, I asked my hepatologist why he didn’t put a stent in my liver. He said, we do not want to go there until we have to because of the risk of hepatic encephalopathy. Now we were there. My hepatologist, Dr. M., was going on vacation that week, but came in Monday morning, did the endoscopy, came to the same conclusion as the gastroenterologist in my hometown, and admitted me to the hospital at UAB for a TIPS – a Transjugular Intrahepatic Portosystemic Shunt.
A TIPS is basically the last resort for cases of varicies bleeding that can’t be controlled otherwise. Here’s a good summary:
A TIPS procedure involves creating a pathway through the liver that connects the portal vein (the vein that carries blood from the digestive organs to the liver) to a hepatic vein (one of three veins that carry blood from the liver to the heart).
A stent placed inside this pathway keeps it open and allows some of the blood that would ordinarily pass through the liver to bypass the liver entirely, reducing high blood pressure in the portal vein and the associated risk of bleeding from enlarged veins.
A cut is made into the neck, allowing access to the jugular vein, and then a plastic tube is threaded through the vein.
Access is then gained from the hepatic vein into the portal system using a TIPS needle (a special long needle extending from the neck into the liver). A stent is then placed under fluoroscopy extending from the portal vein into the hepatic vein. Once the stent is in the correct position, the balloon is inflated, expanding the stent into place.
Fortunately, all this takes place under general anesthesia. You can find videos on youtube, but by this point, my curiosity had been squashed by the sheer too-muchness of the week. My TIPS was installed one week after my mother died. I had internet access, but I knew I had no choice but to have the procedure, so why bother considering its nuances. I was emotionally exhausted at this point: a major bleed at my mother’s death bed, her death, two endoscopies, and a six-hour trip.
Arguably, I may be doing a disservice to describe the experience further, but I will because you have the option of not reading further, but from my internet searching, if you do want to know, your chances of easily finding another firsthand account are slim. I haven’t found one.
Prior to the procedure itself, I had some tests done the next two days, including a CT scan, and a long and at times mildly painful ultrasound.
I didn’t know quite what to expect to feel following the procedure. It isn’t performed by the hepatology unit but rather by interventional radiologists whom I saw for the first and only time briefly in the procedure room, which looked a bit like a torture chamber with these strange long things hanging about. Only after reading about the procedure later did I realize these were needles.
This is a non-invasive procedure, and, according to the US National Library of Medicine’s Medline summary, “There is usually no pain after the procedure.”
I, of course, would have to prove the exception.
I had pain in the recovery room extending from my waist to my neck. It seemed to me when I asked for pain meds that I was never given enough to be pain-free, but rather, that the pain would be controlled in waves: now near my waist, now across my chest, now up to my collarbone — but meanwhile, the pain around my waist had restarted. Of course, it is very hard to be either accurate or certain about anything when you are coming out of general anesthesia.
When I made it back to the room, I hurt — a lot. And I wanted something to drink, or just ice chips. It had been close now to 14 hours without either. I got the one — ice, but not pain meds that were effective.
This is why: the most frequent and potentially serious complication of a TIPS is hepatic (caused by liver) encephalopathy (abnormal brain function). Morphine and other opiates have as their common side effects behaviors that are indistinguishable from encephalopathy.
All seemed surprised I was in such pain. I have heard before that I am “hard to image” — hard to get a decent ultrasound from or CT scan, and imaging is essential in guiding the radiologists in directing their long needle and boring into the liver, so maybe that was the problem, maybe they had to back out and restart or something. Since the hepatologists weren’t there, and the radiologists don’t follow-up at the bedside, I couldn’t ask.
Or maybe it was just my rolling, tiny veins — the bane of so many phlebotomists — that led to this procedure being harder on me than most.
Referred pain was another theory. My pain, after all, was not in the area of the assaulted organ, my liver, but in my entire chest.
Finally, I asked my husband for hot towels, and that helped a lot. Then the nurses started bringing me chemical heat packs.
I hope, of course, if you are in for a TIPS, that you are among those who have “no pain.” But if you do, ask for heated towels or heat packs.
I also plan to ask my hepatologist next time I see him why in such cases nitrous oxide (laughing gas) could not be used. I have had great success with it for pain during dental procedures, and it can be neutralized so easily with pure oxygen. It isn’t like you have to bring someone with you to drive if you get nitrous when you have a tooth pulled. It’s a clean and effective pain killer.
So we’ve gotten my TIPS installed. The story doesn’t end there — there are still things that can go wrong.
But that is enough for now.