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

Ultrasound to Emergency

This is Part 2 of the Gallbladder Saga

We left off having gone to Urgent Care, being told that my liver enzymes were elevated and that I might be looking at a serious liver disease.

The Urgent Care physician had booked an early morning ultrasound to take a look at the gallbladder and the liver. So I took some extra medication to try helping me sleep, and waited.
The ultrasound itself was fine. A little painful, really nauseating, but fine. The technician gave nothing away, really, other than being confused as to what exactly she was looking for. I try not to read too much into these if I can help it, especially since I would be getting results later that day, which is fast.

At Urgent Care the night prior, the physician suggested that I call to book an appointment with my GI specialist (who would also look after me for a liver disease if I had one). So, after a couple hours of waiting until the results had likely reached my GI's office, I called there first - before going to Urgent Care for the full results from the physician who saw me the night before. 

I called my GI.
Away on holidays. (I seem to have a lot of flares and episodes when people are out of town. My illnesses like to be inconvenient for everyone haha). My GI is kind of a superstar. He heads a ton of different research projects and speaks at conferences all over the world because of his expertise in Inflammatory Bowel Disease. I am especially fortunate to have him as my specialist.

The problem with not having him to look at the results is that sometimes the nurse or fill-in has no clue about my history.  When I spoke to the nurse, she said that nothing showed up on the ultrasound and that she was not at all concerned about my liver enzymes. She would not book an appointment.
I did mention my symptoms were worsening, but she continued to say that my ALT enzymes were not concerning.

Okay.
Here I am on one side being told that I may have a serious liver disease OR gallbladder issue (plus the threat of Primary Sclerosing Cholangitis making a comeback), AND evil Google reminding me of that 6-months-to-live doozy it so valiantly offered up onto my screen, and then on the other side,  this nurse saying it is absolutely nothing and not even booking an appointment....

I decide to still go back to Urgent Care for results from the physician from last night (since they were expecting me anyways). Apparently there was some 'Sludge' in my gallbladder, but no visible gallstones that he could see. He still felt that liver disease was the likely culprit, suggested I take a bit more pain medication, see my GI (I didn't bother to mention that they wouldn't book an appointment), but watch for any further symptoms of gallstones (not really understanding what that meant at the time).

Hmm.

So I planned to make some calls, book an appointment, and rest at home.

But the symptoms became worse. A lot worse. Every time I tried eating it would feel so much worse. This constant pain deep in my abdomen, nausea along with it, radiating pain to my back (kind of wrapping around my right side), and SO much nausea. Then, when I tried sleeping on my stomach I thought I was going to crush something valuable.
By the time midnight came around I was sobbing uncontrollably and doubled over in pain.

Well sh*t. Now what?
I have already been to Urgent Care TWICE, I have had an ultrasound, my own specialist's nurse said she was not at all concerned and would not book an appointment, but I keep getting worse. And worse. Randomly dry-heaving with no real substance, nausea, pain, and so much sobbing.
Plus, there is the complication of my illnesses and medications suppressing fevers. I don't really get fevers. I can feel like I am feverish, but the numbers rarely (if ever) show it. HAE is partly to blame, but some medication I take can do the same thing. It is a good thing overall, but when there is a question of infection and there is no fever, it takes longer to figure it out. I didn't have a fever with any of my severe UTI's or kidney infections, I didn't get fevers with pancreatitis, mono, colds, bronchitis, or any other infection.
So, as usual, I didn't have a fever either.
So what do I do? Is it nothing? Is it a chronic liver disease? Is it an acute gallbladder problem? Is it an HAE attack? Is it just a blip that will settle on its own?
How do I know how serious it is and whether or not going to the ER is warranted?
All I knew is that I could not handle the pain at home anymore. I was barely able to function because of crying from the pain and nausea. But was it really worth going to the hospital?

So I do the only thing that comes to mind from my more severe health days:

Why not call the GI on-call to ask if it is serious enough to go into the ER??

This is something I have been told in the past to do if I am scared but unsure of the severity.
THIS WAS A HUGE MISTAKE. I will explain why later. The conversation was short, not helpful to me, and definitely harmful when it came to having a rapport with this GI.

With no real advice on the direction we should take, and no improvement, we decide to take me to the ER anyways. A different ER from the GI on-call I had just royally pissed off.

The second I got in line for the triage nurse, now feeling horrendous, dizzy, faint, and kneeling down from pain, I vomited ugly brown sludge into the puke bin I brought from home.
They definitely got me in shortly thereafter.
Following immediate bloodwork, a doctor came to speak to me looking a little misty. My ALT enzymes had doubled since the night before.

It was looking more and more like liver disease. They decided to have me stay at the hospital and be monitored until they could figure out what the exact problem was and where to go from there.

As it turns out, the ER is exactly where we should have gone. At least I know we made the right decision.
That's a relief.

Common Questions About Pain

If you are thinking about going to see a doctor about a specific pain or new symptom, it is best to be prepared to answer some common questions. If you are in such pain that you are thinking of going to Urgent Care or the Emergency Room, here are some questions to think about before you leave:

• Where exactly is your pain?

• When did the pain start?

• What were you doing before experiencing this pain?

• What kind of pain is it? Does it come and go or is it constant? Does it feel sharp, stabbing, dull, achy, burning, cramping, tightening, crushing, throbbing?

• What makes the pain worse? What makes the pain better?

• Does the pain seem to spread anywhere? To your back? Down your arms or legs? To your flank? In your chest?

• Does it improve with activity?

• Does any medication seem to help?

• Does eating or drinking make it worse?

Then The Basics:
- What medications, vitamins, illegal substances have you taken? (Please remember that doctors are not there to get you in trouble. If you HAVE taken something illegal, TELL THEM. Knowing what you have taken is vital for a proper diagnosis and treatment as many medications will interact with these substances).
- Did you do or eat anything unusual today?
- When was the last time you went to the washroom?
- What is your medical history?
- Have you had any surgeries?
- Do you have any allergies?
- What are your current medications and what are they for?

If you are a chronic illness patient, like me, I would highly recommend having The Basics on paper in your wallet or purse with easy access. If you are ever in a situation where it is difficult to speak or you are in so much pain that you may forget some important details, you can just hand them this piece of paper with all of the pertinent information.
I have had something like this since I was in my teens. I cannot tell you how many times this has saved all of us a lot of time and struggle.
I recently had to be taken in by ambulance and the EMTs raved about my informative paper and stated that all people - complicated medical history or not - should carry something similar.

It helps to be as prepared as possible.
Trust me.

Feeling Pain

I have had more than my fair share of doctors appointments, trips to Urgent Care and the Emergency Room, and diagnostic tests because of something that hasn't been working right.

There is one aspect that I will never really understand, and because of that I cannot really offer any advice on what to say when this comes up.

When I have a new pain, or a pain that sometimes happens but is not one of my constant symptoms, sometimes I try to find relief but sometimes I ride it out.
Recently, with this new bladder pain, when I thought it was bladder swelling or a bit of inflammation, I took a specific medication that numbs the pain.
I believed to know what the problem was, so I took something mild to combat that problem.

When the results came back that it was inconclusive, a potential UTI, or something entirely different, I stopped taking that medication even though it would continue to provide some pain relief.
Why?

Well I have experienced two types of situations when it comes to pain relief with brand new inexplainable pain.

First:
I take what I can to reduce the pain and then go see a doctor or go to an urgent care or ER. I get there and they ask me:
• How severe is your pain?
• Where is your pain?
• Does it spread to anywhere else?
• What kind of pain - sharp, dull, intermittent, burning, stabbing, throbbing, etc...?

Well, if I have taken something to take care of this pain, I can't necessarily answer these questions. Then they become frustrated and start to question whether or not I actually WAS in pain at all. I start to wonder if I was making a big deal out of nothing (because I can no longer feel what is going on with my body), and I leave with no answers, only to be bombarded by severe pain later on.

Second:
I refuse to take this pain-relieving medication until after I see the doctor. I wait so that I can answer their questions clearly and precisely.
They ask another question:
• Has anything helped to reduce the pain? Medication? Activity? Voiding?

Of course, I tell them what helps, and they look at me as though I am a certified lunatic. They begin to ask why I am not taking that medication if it helps the pain. I try to explain that I want to be able to tell them exactly where the pain is and how bad. But, of course, who just sits with pain when they have pain relieving medication at their disposal? So then they question my motivations, they question the severity, and they start to treat me as though I am faking the whole thing because I MUST be crazy to WANT to feel the pain to try and figure out what the hell it is.
*Sigh*

It's a lose-lose situation in most cases.

The truth is, there have been more situations that I can count where I have taken pain meds, or been given pain meds by EMTs, before I see the doctor, and then I am sent home because the pain does not seem severe enough to be treated, only to be in excruciating inside-ripping pain later.
I would rather feel my pain enough for doctors to SEE me in pain so that they take me seriously rather than skip the pain but wind up in a much more dangerous situation later on.

There is another reason I choose this route.
This week, for instance, I was on a specific antibiotic for a UTI. I did not take that numbing medication at all this week. Not because I did not have symptoms. Not because I was in less pain. I decided to forego the numbing medication because I want to be acutely aware of whether not the antibiotic is working.
Which it wasn't.
If I had been numbing my bladder, I may not have noticed, and whatever this is could have turned into a dinosaur-level monster by the time I finished the course.
As it turns out, because I decided to suffer, I knew the day before my last dose that I was not getting better. That gave me time to see my family physician - before the weekend - to try something else or investigate further.
If I had not done that, I would have been in Urgent Care tonight. No question.
And with this new medication, I want to be aware of how well (or not) it is working so that, on Monday, if it has not resolved the issue, I can clearly tell my doctor and go another route.

I am not saying that it is easy.
It is brutal.
There have been several times where I have been lying in bed or punching the wall or even screaming into my pillow from this damn bladder pain. I know that there is a bladder-numbing medication within arm's reach. But if I cannot feel the pain then I cannot know if I am getting better or worse.

My only advice: write down all of your pain, every symptom, every discomfort, no matter how graphic. Then, if you do get a doctor who does not believe you, you at least have a written record that they can refer to.
Try to prepare your answers as best you can to the most common questions - written in the following post.
Good luck!!

First Month of the Year

Well...
Within the first month of 2019 I ended up in the Emergency Room.
Over one day I wound up going to Urgent Care, going home, having Rj drive us to the hospital, only to be met halfway by an ambulance.

Here is how it all went wrong:

After a specific activity, I wound up with what I thought was some swelling and inflammation in my bladder.
Since my hysterectomy and oophorectomy in 2017, bladder swelling and inflammation has been a fairly common occurrence, so it was a natural assumption.
So I took my usual bladder-numbing medication to help me get through the pain and left it for a day.

That was my first mistake.

It was not just swelling and inflammation, it was a full-blown Urinary Tract Infection (UTI).
The problem with such an infection is that, because I am immunosuppressed, infections go from 0-100 quickly. Really quickly.

By the next morning I was in so much pain that I knew it was likely a UTI and that we needed to get in to Urgent Care.
Due to my history and huge list of allergies to antibiotics, the physician asked what medications I have previously used to tacked UTIs. I was in so much pain and got so confused that I suggestion a certain antibiotic.

This was my second mistake.

The antibiotic I suggested, although was one I have taken in the past, was not a medication used for urinary tract infections. Furthermore, it is in a class of antibiotics to which I am severely allergic, so our pharmacist advocated strongly against taking it. The problem was - it was the weekend so my prescription did not come from my family doctor, but an urgent care physician who may have not even been on shift anymore.

About two hours after getting home - after being in the bathroom nonstop, losing control of my bladder a dozen times, and thinking the pain was improving, something happened.
When I went to the washroom again, not only did the pain become excruciatingly sharp, but I had some pooling blood from a place I should not be bleeding from anymore.
I walked out of the washroom and asked Rj to get dressed so that he could drive me to the hospital. I grabbed my Berinert (expecting a full on throat swell and assuming there was swelling in my bladder), and I had Rj drive us.

This was my third mistake.

Only four blocks into the drive and I was so freaked out and in SO much pain that I wished we had simply called an ambulance.
So that's what we did.
An ambulance met us at an intersection.
This was a much better idea.
With the high level of pain (8/10), my mind running wild with fears of tearing at the previous surgical site or envisioning my bladder exploding, and my inability to communicate properly through the tears, the expertise of two incredible EMTs was absolutely necessary. They were able to not only to calm me down and sufficiently distract me, but also ease my worst-case-scenario fears. We were all joking around (I make stupid groaner puns and jokes when I am in that much pain to distract myself and just get through it) and getting through the booklet of information on current medications, allergies, medical history, previous surgeries, and diagnoses. (One EMT remembered previously picking me up a few years ago too!).
They immediately started an IV and attempted to get the pain lessened enough to calm me down just a little bit.

A nice little bonus: I got to ride in one of those new fancy Comfort-Ride ambulances. The back of the vehicle just glides. Apparently it is harder on the shocks, but for a patient in the back who is getting jabbed with needles and who becomes nauseated, such a better ride!

I was extremely well taken care of at the hospital. The ER doctor was beyond compassionate. The infection warranted IV antibiotics, pain medication, and they even showed me how to give myself my IV Berinert into the IV they had started. They did cultures, a urine sample, bloodwork, and a pelvic exam. The consensus was a really bad UTI, bladder swelling, bladder inflammation, tearing in the pelvic region but no severe damage, followed by a throat swell that required intervention.
A simple UTI turned into a damn monster!

This particular episode was, by far, the most amount of pain Rj has ever seen me experience. I am lucky to have him as my husband.

Here are the extra plus sides:
• I was taking a medication to numb the bladder, which turns my urine a bright orange, so when the first doctor saw it, his response was: "Is that really your pee?"
I thought it was funny.
• Comfort Ride ambulance trip.
• Incredible EMTs, doctors, and nurses.
• Lots of funny jokes.
• Sufficient distraction.

Here is what I learned:
• The moment I feel the slightest tinge of a potential UTI, go and get checked and get a prescription so that, if it goes south, I have the right medication.
• Write down the medication I take specifically for UTIs.
• I learned how to give myself IV Berinert once the IV itself has been started.
• I have the most caring and compassionate husband in the entire world. Honestly. There were things he had to be there for that were thoroughly embarrassing and he took it all in stride.
• There is nothing ANY patient can say anymore to 'prove' they are not drug-seeking - EMTs and physicians now have to go into every situation assuming drug seeking behaviour.
• Being kind, making jokes, trying to be as patient as possible, and trying not to scream or cry out, are all effective ways to receive kind and compassionate treatment. (Just always leave enough of the curtain open so they can see you crying and writhing in pain - so you can avoid complaining but they can see how severe your pain is).

I am still recuperating (obviously) and have several more days of this course of antibiotics, but the worst of it *should* be over.

Thank you Rockyview Emergency Staff and EMTs from Bannister Road. That was the best worst experience I have had in a very long time.

An Evening at Urgent Care

Today was an interesting day that took an unexpected turn.
So many different mini-dilemmas coursed through my mind as we dealt with a situation that could easily be considered an emergency situation.

Things happen so quickly that it is difficult to always make the right decision, or a fully-informed decision, and I am just grateful for the positive outcome.

To start off this little story, I have to go back to this past Friday afternoon. See, my Berinert prophylactic sub-cutaneous injections happen twice a week - Tuesday and Friday mornings - and they help tremendously in keeping my HAE swelling episodes milder. Friday afternoon, however, I received a phone call that COMPLETELY stressed me out. Stress contributes to these HAE swells. After crying and pacing and trying to do damage control and, let's be honest, freaking out, I was able to calm down and avoid a trip to the ER or Urgent Care. There was a subtle tickle in my throat that suggested a potential throat swell, and I thought of going in, but since it did not seem to progress, I opted to 'wait and see'.

That was mistake number one.

See, it was the start of the weekend, I just wanted to stay home and relax, I wanted to avoid hospitals due to this awful flu virus and recent Measles case in the area (since I am immunocompromised), and I tend to be stubborn and downplay my symptoms. I also only had two vials of my Berinert left, was picking up more this coming Friday, and so if I used one for an IV treatment, I would not have enough for both of my sub-q injections this week.

Fast forward to Thursday. (Today for me, as I am still awake).
I get up, slowly get ready, make my way to a Dentist appointment, grab a couple items on the way home, drop off wedding invitations to be sent out at Shoppers, then head home. As I am sitting at home, I noticed a sore throat and a tickle. I thought nothing of it. (Idiot). I relaxed at home after what is ALWAYS a painful appointment, watched some tv, but my throat was really bugging me. I kept feeling like I needed to clear my throat but it never really worked. I sipped on water, had some apple cider, but nothing seemed to help. I began writing out my appointment details in my medical journal, and as I realized I was having difficulty speaking, I remembered one very huge clue that I had utterly missed:

Dental work is one of THE MOST COMMON triggers of throat swelling episodes for HAE patients.

In the past it has not been one of my telltale triggers, so it had not crossed my mind. Until it did.
A big 'oh sh*t' went through my mind as I realized I needed to go in for IV treatment. It was a throat swell alright, and it turned out to be THE worst I have had to date.

We grabbed everything we needed. The first plan is always to go to Foothills. But it was 5pm... it would take an hour or more just to get there. Same with Rockyview at this time of day. So where to? Do we risk getting stuck in rush hour traffic? Do we try an urgent care centre? Should we have called an ambulance? I can still breathe, it is just some mild swelling at the moment so an ambo is too dramatic... but which facility do we go to? Do we opt for the preferred choice of Foothills or do we find the closest place?

In my mind - I am bringing the blood product they need to use. I am trained in how to mix the product, to draw it out into a syringe, and the injection rate (60-90 seconds for sub-q, 10 mins for IV). So the only part I cannot do myself is start the actual IV - I have not been trained on putting a needle into my veins for an IV infusion.
By the time we got on the road (fiancé driving), my breathing was noticeably labored. It was progressing much more quickly than my previous throat swells. The closest facility was an Urgent Care centre down the road. In my mind, this was perfect!! All I need is an IV started, it will be much less busy than a big Emergency Department, I would be seen  rather quickly, it was very close, parking is better, and they are equipped similarly to an ER save for a few machines - or so I thought.

This was another mistake. A big one.

What I was unaware of - which I know now - is that Urgent Care Centres do not have direct access to a Blood Bank, nor are they equipped to administer blood products.
So they had no experience with Berinert, if I needed any extra they could not access that, and they did not know how to infuse the product. What was worse -> This was not all clear until my breathing and speaking was noticeably and frighteningly affected. Not only that, but by the time I found out that I was not supposed to have gone there, I had already been admitted, had ECG stickies all over me, AND my Berinert (which I had brought in a cold pack since it needs to remain refrigerated) had already been taken out of its package to be looked at. So, at this point, my blood pressure is super high (for me), as is my heart rate, I am having major difficulties breathing normally, my voice is now a near whisper, the medication (blood product) had to be administered within the hour and could not be replaced at this facility, and the situation was freaking everyone out. There was no precedent at this facility for this treatment. There were no protocols in place. So they were trying to get faxes of the proper consent forms, trying to figure out how to handle and administer the medication (not yet knowing that I knew how and could guide them through it), and (fairly) they were all pretty upset that I was even there in the first place. I should have gone to a hospital Emergency Department.
My belief was that Urgent Care was a slight step down from ER and that by bringing my own treatment it would be a simple process of putting an IV in and me administering the medication.... but, as one of the nurses put it, Urgent Care is more like a "glorified walk-in clinic" and is not equipped to deal with such emergencies - especially ones that require (or may require) blood products.
So should I stay and guide them through the treatment protocol? Should I leave and hope I reach a hospital in time? Should I take an ambulance to a hospital? Should I do a sub-cutaneous injection myself and then make my way to a hospital hoping it would settle the swell enough within a couple of hours to get me the IV treatment elsewhere? What are my options? And let's not forget that I am trying to decide this while struggling to catch my breath at every inhale...

I have to say, after all of the confusion, not only was I treated, but everyone was exceptional. Granted, I think I pissed off a few nurses, along with other patients who waited longer because I kind of monopolized the area (which was not my intention and was completely out of my control), but that treatment works SO quickly that within half an hour of receiving treatment my breathing and my vitals were back to normal.

I understand entirely the frustration of the medical staff. I also understand that when you are a patient waiting for treatment and you are waiting, and waiting, and waiting, that it is more than irritating.

In my defense, however, I was a little panicked. You know, because I COULD NOT BREATHE PROPERLY!!!

My throat swells usually progress very slowly over hours and hours, sometimes even days. This was the worst one, and progressed MUCH faster, but only once we were actually IN the urgent care facility did it progress to a point where sending me away to try and get to another facility in time was a HUGE and DANGEROUS risk.
And, unfortunately, as a chronic illness, chronic pain, inflammatory illness patient, I have experience in the "damned if you do, damned if you don't" department. People are always telling you that patients with chronic illness and chronic pain never belong in the ER. That because our issues are so complicated, most ER doctors don't always know what to do or don't want to do something that will step on the toes of our specialists. That if we aren't actually dying right at that very moment, then it is more appropriate to go to Urgent Care. But then in Urgent Care, those same patients are told that their charts are so complicated that they should be going to the ER because at least in the ER they have specialists available in the building. Plus there are some imaging equipment that is not available at Urgent Care. And now that I know that Urgent Care does not have access to blood products, that is an entirely new issue!!!!
Either way, chronic illness patients are blamed constantly for tying up the lineups and for not going to the correct place or for not being 'emergency' enough to be in the ER but then for being too much of an 'emergency' for urgent care.

My point is -
I learned a very valuable lesson today. That if I have an HAE throat swell episode and require an IV blood product, that I absolutely 100% need to go to a hospital emergency department -> even though I am not 'immediately dying'.

In all sincerity, I do apologize for any confusion and extra stress or strain I may have put on the health professionals and/or other patients. It was a decision made under frightening circumstances that had me panicked (a decision that will not be repeated), and had I known about the rules regarding administering blood products, I never would have gone there in the first place. I am appreciative of the medical staff and I hope that the suffering of other patients was not completely unbearable while the doctor was providing the necessary immediate assistance due to my inability to breathe properly.

I am thankful that I received prompt treatment despite my mistake. Another 30 minutes of that quickly progressing tightening of my throat could have been even more intensely terrifying.

And, as always, a huge thank you to Ryan for always being there and supportive and for his efforts to stay calm in order to try and keep me calm.

Just a regular Thursday night. ;)