Part 1: Trip to the ER

After I was taken up to my room, the nurse came in to ask 101 questions, including all about Lyme.  Then she said I needed to wear a heart monitor that would be monitored by the cardiac unit. They apparently heard the same abnormal rhythm as my Lyme doctor did. After that was finished, I thought I was going to get to go to sleep. No luck.

The Next Interrogation

A few minutes later, the door opens again. By this time, it’s almost 2am. A woman comes in and introduces herself as a nurse practitioner who works in the hospital. She said she was sent up by the ER doctor to evaluate me because of my Lyme disease and learn more about my meds.

I thought oh crap, here we go. So it’s now after 2am, I’m coming up on 24 hours with no sleep, I’m starving because I threw up my dinner but I’m not allowed to have anything (even water) because of the surgery and I’m on morphine. Now, have I mentioned all my neurological issues and not being able to recall things, mixing up words and just all around not being able to carry on conversations well at times? Let’s add to that no sleep, no food and morphine…..

So, yes, strange lady, let’s take this time to go through my entire medical history as I struggle to stay awake! Geez!

She wanted to know everything I was taking including supplements so I did my best to go through all of that. As we were talking, I kept remembering other ones I hadn’t told her (or I would tell her the same one multiple times). Then she wanted to know about my diagnosis, what else had been considered, what my treatment had been, who was treating me, what all of my symptoms were, how much longer I was going to have the PICC line and on and on and on….

I was like get out of my room and let me sleep!!!

She finally left and about the time I was falling asleep, the nurse comes back in again about the heart monitor and putting those compression contraptions on my legs that squeeze them every 30 seconds or so. I just gave up and figured I could sleep during surgery! haha

Let the Interrogations Begin Again

So by this point, I have been questioned about my Lyme diagnosis by the person who checked me in at the ER, the triage nurse, the ER doctor, two different ER nurses, the radiology tech, my surgical floor nurse (and the new one at shift change) and the nurse practitioner.

Now the next morning in walks another doctor. I was actually in the process of arguing with the nurse about my meds as he was walking in the door so he wanted to know what was going on.

I gave them all of my meds the night before. With the adrenal meds, they have to be taken when I wake up in the morning and again around mid-day. You cannot skip a dose of the medication as it can be very serious and send you into an adrenal crisis. Your body becomes reliant on the medication.

She had ordered my meds in the correct dosages but was going to give it to me at 9am and 9pm. I was explaining to her that’s not how I take it (and she was basically telling me tough!) when the doctor walked in. So I tell him about the Cortef.

He tells the nurse that it’s essential that I have the medication but I need it by IV in a stress dose….or it could be very bad during surgery. I asked what that meant and he just told me it was necessary to have stress doses for 24 hours for any traumatic event. I looked it up after he left and if you don’t get it, you can die. Nice, right? Essentially, if your body is under a lot of stress from an accident or surgery with general anesthesia, it can’t produce enough cortisol to keep major bodily functions going. Basically, you can die from the stress overload. Comforting tidbit before you have surgery, don’t you think?

After that part was handled, he introduces himself as a hospitalist and gives me his card. He says he was referred to me by the ER doctor because I have Lyme. Hmmm…sounds familiar. That’s the same thing the NP said the night before. So he starts going over all the same questions.

Finally, he says what kind of Lyme do you have? I said neurological, I had Bell’s Palsy from it as well. He paused, said I agree completely with your treatment and never said another word about it. So weird.

He said they would have to continue monitoring my heart and would decide after surgery when I could go home but it was possible I would have to stay the night again.

Surgery Time

They came to get me to take me down to the OR not too long after lunch (or what would have been lunch – I still wasn’t allowed to eat or drink). By the time we got to pre-op, my parents had arrived as well. More questioning about Lyme from the OR nurse, the surgeon (who I finally got to meet) and the anesthesiologist.

I told them repeatedly I was allergic to ChloraPrep and adhesive. Then they came in to prep me for surgery and started to use the ChloraPrep – I’m like once again, I’m ALLERGIC. Then they wanted to know about what types of adhesive I was allergic to and I said all of them. They told me to make sure I told the people in the OR. So from that point forward, I literally told every single person I saw! haha

When I got into the OR, a new nurse anesthetist came in and said she would be in to monitor my surgery along with the anesthesiologist. I let her know about my allergies and also that anesthesia generally makes me sick. They had already given me a patch behind my ear and she said she would add extra meds for nausea and have them available when I woke up too. I also made sure to let her know about the heart rhythms and she said they were monitoring me for that already.

She also started asking questions about Lyme. By this point, I was like I’m going to have a Lyme 101 conference in my room, everyone is invited!

My surgeon came in and asked me if I was ready. I told him I really wanted to see what my gallbladder looked like. He said they didn’t have a camera in the OR and just laughed at me! 🙂 Then they asked me about the adhesive and if I had ever had glue used on an incision. I said no and they said they would try that instead.

Then I remember the nurse anesthetist putting the oxygen mask on me and telling me she was giving me the relaxation cocktail and I would be going to sleep soon. She was kind of rubbing my hair and then apologized because she said it was going to cause an uneasy, dizzy type feeling in my head. As soon as it hit, I said oh, I’m used to this…this is what Lyme feels like when it flares up.

She said I’m so sorry….and the next thing I knew, I was in the recovery room.

The rest of the story: Off to recovery

On Tuesday, the chest pain and pain in my stomach came back and was the worst it has been. I did all of my normal tricks of a heating pad, ibuprofen, taking a hot bath and trying to distract myself. After several hours, it was minor enough for me to at least be able to go to sleep.

Now, I have been following this low fat diet ridiculously strict. I haven’t had anything that had more than 3 grams of fat per serving and have been eating things with no fat as much as possible.

The very few times we’ve been out to eat, I’ve asked for grilled chicken or fish with no seasonings (and not cooked in anything) and plain potatoes. Sounds really appetizing, right? But this pain just kept getting worse. And I thought well, if the pain is going to be there regardless of what I eat, I may as well at least eat what I want!

What a bad idea that was….

To Our Favorite Mexican Restaurant

On Wednesday night, I ordered nachos – which with my restrictions of gluten and just how picky I am in general, it was just the chips, chicken and queso (no jalapenos). As we were finishing, I could feel the pain starting to settle in and thought great, here we go again. By the time we got home, it was pretty intense. I went upstairs to get in the tub and after that, grabbed the heating pad while I curled up in the fetal position on the bed.

When that didn’t work, I finally gave in and called the doctor’s answering service. By the time she called me back, I was crying from the pain. It felt like a kidney stone. I told her what was going on and she said it was probably my gallbladder (and the pain was still concentrated on my LEFT not my right – remember when she said it couldn’t be my gallbladder?!). She told me to try to take Tums and if it wasn’t better within 15 minutes, go to the ER.

So I took 3 Tums. I knew I needed to go ahead and start my IV meds because who knew what would happen if I had to go the hospital. The treatment is so controversial, they were liable to not let me have them at all.

By the time 15 minutes was up, I was doubled over and thought I was dying. I started screaming for my husband and told him he had to take me to the ER. He called a neighbor who came to sit with our son. About the time the neighbor walked in the door, I started throwing up. And I mean throwing up like I never have in my life. It was disgusting. Not to mention, I’m a huge baby about throwing up at all.

I’m sure the fact that I had just eaten didn’t help. But I just kept throwing up over and over again. It finally stopped long enough so that I thought it was safe to leave. Suffice it to say, I rode to the hospital with a trash can in my lap. My meds finished infusing on the way to the hospital so I was at least able to be done with that before I walked in the door.

Arriving at the ER

When we got to the ER, it was packed – of course. I went up to registration and I think seeing my PICC actually helped to get me to the front of the line. They took me back to triage and the questions began….first about the current symptoms and then about my PICC line and why I had it.

I felt like I was in a very odd position. There is so much controversy around Lyme and especially with the treatment. I really didn’t want my doctor to get into trouble but at the same time, I had to have some explanation for why I have a PICC line! And they obviously needed a full medical history to be able to treat me.

So I told them all about the Lyme but didn’t tell them who was treating me, at least at first. They drew blood (from my PICC!), had me give a urine sample and then led me back to an exam room. The doctor came in a few minutes later and said it could be a number of things including my gallbladder, pancreas or something with “lymph” in the name related to Lyme. My husband and I neither one can remember what he said.

He wanted to know about my Lyme, how I was diagnosed, who was treating me, etc. After trying to skirt the “who was treating me” part, I finally gave in and told him when he asked again. He made it pretty clear he didn’t agree with the length of my treatment but then left it at that.

Testing

He said he was going to order an ultrasound but if it didn’t show anything, I would need to have a CT scan done. He also sent in the nurse to give me Zofran and Morphine. Thank goodness!! It hit my head quick but in a very good way. Within minutes, the pain was tolerable again, whereas in triage, I told the nurse I would rate it as being in labor when she asked me to rate it on a scale of 1 to 10.

A bit later, the tech came in and performed the ultrasound. I tried to get her talking but she wouldn’t do it. So I just had to wait for the doctor to come back in to get the results.

Drum Roll…..

The doctor stuck his head in the door and said “it’s your gallbladder” and then disappeared again. I was like where did he go? Surely I get more than that as an explanation!

A few minutes later he came back in and said my gallbladder was full of stones and sludge and the opening was enlarged which could mean I have been passing stones. He said the “cure” is surgery to remove it. I asked if there was another way to deal with it and he said no, in the south, when you have gallbladder attacks, it comes out. I never did quite figure out why “in the south” was added to that.

I asked about what happens after it’s removed and he said most people have to go easy on foods for a few weeks and then they can eat whatever they want. He said less than 10% will continue to have issues with certain foods but for most, it turns into a free pass.

I was secretly relieved. Not only would the pain go away but I had also read numerous accounts from people with Lyme who had a big turnaround in symptoms after their gallbladder was removed. All of that sludge in there could also be home to a lot of Lyme toxins and bacteria…and that could be why I’m having a hard time recovering.

Of course, it’s hard to say if the Lyme caused my gallbladder issues or if it was the Rocephin. If you browse around Lyme communities online, there are a lot of people who had gallbladder surgery. But some of them were never on Rocephin, or IV antibiotics at all. So I guess I’ll never know the real cause. But ultimately, in my mind, it’s still Lyme. Even if it was the Rocephin, I was on it because of the Lyme.

Admission

He told me I would be admitted and the surgery would be the following morning. Because of the Lyme and my medical complications, it was possible I would have to stay longer than normal but that would be the surgeon’s call. Apparently, it’s typically an outpatient procedure and you go home basically as soon as you wake up from anesthesia.

So some time around midnight, my husband headed home and I headed up to my new home for the next few days.

Part 2: The Surgery