ERCP & Surgery

This is Part 4 of the Gallbladder Saga

This part starts on the Friday. The day after the Hyda scan and eating delicious popsicles until midnight. The day after finding out the gallbladder was for sure a problem.
ERCP day. This day wound up being a bit of a fiasco. First of all, ERCPs are not performed much or at all at the hospital in which I was staying. That meant I had to be transported to another facility by ambulance.
Then, the most important part of getting an ERCP was that they had to coordinate my HAE medication. Before ANY procedure, especially those with sedation, I am supposed to receive a prophylactic IV infusion of Berinert (and have more on-hand should there be an issue). See, even with dental cleaning, it is common for HAE patients to suffer a throat swell that mimics anaphylaxis - except it cannot be treated like anaphylaxis. So, for a procedure that inserts a massive tube down my throat, that infusion was absolutely essential. I asked my doctor if I needed to bring my own stock of C1-Esterase-Inhibitor, and he said that my Hematologist had already contacted the other hospital and it would be taken care of there.
So transport comes to pick me up, but they had to wait until my nausea was taken care of. I had already been vomiting throughout the morning (likely because I was on Doxycycline but could not eat or drink with it), and the EMT's wanted me feeling a little better before transport. So I was given Gravol and a few more minutes, then they strapped me onto the gurney and went into the ambulance.
I spent the whole ride trying not to vomit. I succeeded, though, mostly because of the EMT. She was watching closely and blasted cold air and kept me distracted. Phenomenal EMTs, both of them!

We get to the other hospital's day surgery prep & recovery area, and it is evident that the entire day for them has been hectic. They may have even been understaffed. One poor nurse seemed to be doing the jobs of four people and the surgeons were behind. Way behind.
Technically, my 'appointment' was at 12:30pm, but the man to go in right before me did not go in until about 3:30.
I am usually very patient when I wait for procedures. What other options do I have?

I knew that I was supposed to receive my HAE medication approximately an hour before the procedure.
As it came time for me to be prepped, though, I had to ask when I would be receiving my injection. It was getting down to the wire and I had not seen anyone preparing or mixing the medication. I was even really nervous to ask (I did not want to seem like I didn't trust them). When I asked if I should be infused soon though:

Blank faces.

There was clearly a communication lapse. There was a missed fax in my chart that was not read carefully enough. They had no clue what I was talking about. Some of them (including the surgeon) did not even know what Hereditary Angioedema was, let alone that I suffered from it and what the implications might be.
So I am sitting there, already 3 hours later than my scheduled procedure, unable to take any pain or nausea medication, and no one had any clue what the C1-Esterase-Inhibitor plasma actually was, let alone how to order ir, get it, and administer it.
One individual asked if I 'really needed it'. The answer: a resounding yes.

After about 20 minutes of trying to give them space to figure it out, I began to lose my temper. I eventually had to go to the nurse's station and explain that it is a blood product (one nurse gave a snide look that told me they already knew that part), but they kept calling around to different pharmacies. So, in a similarly snide tone, I said:
"It is a blood product. Administered like a blood product. Which means it comes from the blood bank and not from any pharmacy."
I did apologize for being rude, but I did mention that this should have been organized before I arrived and that that was why I was so upset...
Well, let me tell you, after that - none of them would even look at me. Only one of them ever came near me (and she was kind), but none of them actively checked on me. I had to call the one's name once my pain reached a 7 and I could not take anymore.
What was worse is that they continued to have issues, but instead of asking me anything at all, they Googled, which (of course) gave far too much conflicting information. I even called my husband to bring in some of my own stock of C1-Esterase-Inhibitor in case they still could not figure out how to order the medication. Even after he arrived, the nurses were actively avoiding me.

They did eventually figure out how to order it and it arrived before my husband got there.
They did not, however, seem any more enlightened on the administration procedure. They had been reading for an hour by this point and had already brought in the patient that was scheduled after my appointment.
When they had all agreed they would do it sub-cutaneously, I had to intervene and explain it could not be done that way for a procedure. When they were confused about mixing the product, I mentioned that I mix it twice a week at home and could show them (or just do it myself). When one nurse said that the 'mixing was the easy part' with a roll of her eyes, I explained that I have also infused myself before in an active IV and could also do that if it was such an issue.
The pamphlet is so long and so confusing, and they refused to speak to me, so another two patients went ahead for their procedures before they even got the medication figured out. Hours later. Not to mention that they did not infuse it long enough before the procedure, but by that point I had no fight left in me.
After the painful procedure was over (of which I remember fairly vividly - including inserting and pushing the tube, pushing further, cutting and widening the sphincter, and vomiting as they removed the tube), I was not given the proper amount of time to wake up before they had me on a gurney and back into an ambulance to be transferred back to the other hospital. I could not talk. I was not awake. I had not yet gone to the washroom. And I vomited all the way back. I was the last patient to get the ERCP, which was not the issue, but it did mean that they were all in a hurry to go home from an extremely long day.

Had I not stood up for myself, perhaps they would have been kinder. If I had not intervened, maybe my pain would not have gotten out of control. Had I not spoken up, perhaps they would not have actively ignored me as much as they possibly could. Maybe they would have let me recover for longer. Maybe I would not have been puking the whole ride back. Maybe I would have received better treatment. But maybe they would have skipped over the injection entirely. Maybe there would have been a serious emergency because of the tube, or because of the epinephrine they injected to keep the duct sphincter widened for a few days.
It's true, being 'difficult' (I resent that term) meant that some of the nurses treated me with blatant disrespect. It also meant that I received the proper pre-procedure medication that could have saved my life.

**This. This is exactly the reason why I am usually too afraid to complain or to make a scene or to stand up for myself even when when mistakes have been made or when there have been misunderstandings, or even mistreatment. This is when they may say that I was a difficult patient.
I am at the mercy of these healthcare professionals. If they want to, they can make my medical experience a lot worse, so I find it hard to make complaints. I am so afraid to contradict a nurse or a physician, almost 'walking on eggshells' because I am so often ill that I cannot afford to be treated worse or to be ignored. This is why it is so hard for people like me to speak up, but often vital to do so.**

The truth is, they should have ordered the medication hours before I arrived. Even one nurse should have gone over the procedure of infusing my medication long before I got there. It was all there, in black and white, in my chart. It had been faxed at least one day prior from my Hematologist. Someone should have had that organized. It should not have been ME to have to question why I had not received the medication yet, but if I had not said anything, it could have been a disaster, and a potentially fatal one. I should not have to explain to 5 nurses that the blood product needed to come from the blood bank (which was also explained in the fax). But most of all - because miscommunications and lapses happen to everyone - instead of ignoring the patient, someone should have asked me what the usual protocol is for giving this medication when it became confusing and overwhelming. I KNOW it is not a common disease. I KNOW it is not a medication these nurses - or even the surgeons - were familiar with. I know it is a perfect chance to learn. I know that you cannot have all nurses focused on one aspect of one patient's care. So why not ask the person who deals with this on a regular basis? Why not simplify the stress - why make it more difficult and wind up feeling overwhelmed and rushed? Why assume that I have no valuable input? Why treat me like I am unworthy of a conversation? If there is some confusion, why not ask for clarification from someone who deals with the disease daily? Because I am just a patient....?

So that was likely the most stressful day of the entire week, apart from the reaction to a medication in the ER.

The ride back to the original hospital was not fun. I was really out of it, really sore, and vomiting. It is really too bad, too, because I love having conversations with EMTs. They often have great stories and they are kind and knowledgeable. Not to mention both were very attractive (which is a nice perk when you are puking and feeling horrendous).

Fortunately, after being back on the surgical floor of the main hospital for half an hour, I came to and was doing much better. The vomiting had halted and I was left only with an incredibly sore throat and a mild headache.
I would like to point out here that my care at this hospital was above and beyond. I felt awful a lot of the time, but it was as pleasant of an experience as it could have been. The nurses and physicians, surgeons, porters, and cleaning staff were all wonderful. Other than regular medication schedules, I did not require much help. I could get to the washroom on my own, I was not allowed to eat so there was no trips to get food, and I had either my parents or my husband there to help get warm blankets if I could not do so myself, as well as do other small favours. Here, I felt exceptionally cared for.

The next day (Saturday) was supposed to be the Cholecystectomy. They, of course, also had to administer another IV infusion of C1-Esterase-Inhibitor (even though I had had one for the ERCP AND my usual sub-q prophylactic the Friday night), so that took some preparation. I was very pleased to see them getting it organized hours before it needed to be infused. They also approached me with questions when they needed to. (Amazing!). All of the nurses went over the particulars in the pamphlet, then went over them with me, asked questions when they were confused, and then started a new IV to administer the medication half an hour before being taken down to the surgical intake room.

After the infusion, I was brought downstairs for surgery, spoke with the Anesthetist, the Charge Nurse, and two surgeons before it all got started. I was not as nervous as you might expect. Gallbladder removal surgeries are so common and I was feeling so awful that I was looking forward to the recovery process.
I had been very clear early on in the week - if the gallbladder isn't working, take it out, let me get started on recovery as soon as possible. I have had three other surgeries on my abdomen, two of which were fully open surgeries, so I had a good idea of what recovery might be like. It is much less unnerving when you have been through something similar beforehand.

I asked my standard strange question - I asked for a photo of my gallbladder once it was removed - and then they wheeled me in and put me to sleep.

When I woke up, I felt sore but in less pain. My pain from the past week was different now. The pain was in the same area but it wasn't the same type of pain. I felt hopeful. Now it was recovery time.
I spent the rest of the evening going for small walks around the unit and trying to go to the washroom (and pass gas).
I always forget that when they put air in your abdomen to see better, this build-up of air can cause severe pain in your shoulders, neck, and chest. So I woke up with this brutal shoulder pain.
Walking was my best bet for helping me recover quickly and reducing my post-surgical symptoms.

I got to EAT the next day (Sunday)!! (You have NO idea how badly I was craving Cream of Wheat the entire week). I was allowed popsicles after the ERCP, which were so heavenly we bought the same kind when I got home. After 4 days of no food (and an extra 5 days of barely eating because it hurt to do so), eating cream of wheat, toast, popsicles, digestive cookies, and a white hot chocolate was absolute bliss.

Since I was able to go for unaccompanied walks and because I was able to go to the washroom three times overnight, I was allowed to be discharged to recover at home.
A few more scars, really sore, countless needle marks from daily bloodwork and three separate IV ports, iodine still on my abdomen, and a little worse for wear, but I was going home!
My parents stopped at the coffee shop downstairs for a white hot chocolate for the ride home, and my wonderfully patient husband came to pick me up with a bouquet of red roses. The most thoughtful family ever.
The drive home was a little uncomfortable, but placing a comfy pillow in between the seatbelt and my abdomen made all the difference. Plus, Rj took less busy roads and avoided pot holes and man holes as much as he could.

I have now spent 9 days at home and I am thrilled to say that I am recovering well. By Monday I needed no extra pain medication (not even Tylenol), by Thursday my bathroom breaks were almost normal, and I have been able to resume some normal household activities. I cannot lift over 10lbs for another 7 weeks, but that's okay. I have to be careful, I cannot resume my usual yoga practice or workout for at least 6 more weeks, and I am more worn out by doing fewer things, but I am thrilled.

This surgery was definitely much easier to go through. It was higher up on my abdomen, so there was no need for any catheterization. It was done laparoscopically, which also accounts for a faster recovery. There is also something to be said for a surgery that 100% has to happen. When there is no room for doubt or another real option, it steels your resolve. When you have to go through it, you just kind of do it.

P.S.
***
I would also like to mention a few things here. This was my experience in one week. One week. I have relayed the events that include mistakes made by others and those made by me, myself. These things happen. Mistakes are made by every one of us. My annoyance on the ERCP day was less about them not reading a fax and more about how I was treated thereafter. The mistake could have been disastrous, which is why I spoke up, but the behaviour is what was the most upsetting. I hate the feeling that if I point out a mistake I might be mistreated; that if I speak up, I may receive sub-standard care, or be ignored entirely.

This was also a very routine, very common experience, overall. Other than the HAE medication, allergic reaction, and a few subjective experiences, this was one simple week in my life. Writing about it, though, makes it a story.

This entire surgical event, though, was absolutely NOTHING compared to my other previous surgeries. This was a blip, a speed bump, compared to a Total Colectomy & Ilestomy, a Reconnection & J-Pouch, and the Hysterectomy & Bi-lateral Oophorectomy.
It was even easier to recover from compared to the sweat gland removal surgery under my arms.

I was not writing anything like this blog when I was 16-17 and going through the open abdominal surgeries. I was just trying to survive (and blogs weren't exactly a 'thing' yet). This Cholecystectomy was, by far, the easiest procedure to handle and to recover from.

I am looking forward to getting back into my old routines.
Thank you so much for reading and going through this experience with me!

The Lighter Side of Gallbladder Removal is:
1. It wasn't my liver!!! *happy dance*
2. Morbidly, I lost 6 pounds within a week
3. I feel better
4. It was easier than all of my other previous surgeries
5. It forced me to take a break