After Friday's blog post, I got to visit the ER again, for the second time in the past 2 months.
I continued to have chest tightness and pressure, and I didn't think anything of it. It wasn't until I mentioned my problems to a friend of mine, that she suggested I call my Humira representative and let them know what's going on.
I had Googled Humira and chest tightness as a symptom, and it didn't seem to be a rare occurrence, but mine had been happening for days. It felt like more than just chest tightness, it was feeling like someone was standing on my chest, and it was making it hard to breathe.
I tried to call my personal Humira representative, but it being after 4 o'clock, she was unavailable and gone for the weekend. I could have texted her but I decided not to. So, I had to call the Humira main line instead.
I spoke with one of their Humira hotline nurses and they suggested that I go to the emergency room. Had it just been that I was suffering from some injection-site swelling or something minor like that, they would not have requested me to do so, but because I was having trouble breathing and it had been happening over the couple days since the injection, they thought it was best I go and have myself looked at.
Great, just great, another night in the ER. But, thankfully, it wasn't a Monday, their busiest day.
So, our Friday night changed from planning on sitting on the couch and doing nothing, to heading to the Lexington VA ER, an unexpected evening for sure, but I did get another medical bracelet to add to the collection! That makes 15 now.
I will note that I have never been seen so fast in my life at the VA, let alone in the ER. My last visit in August took hours. We sat in the waiting room hours until we were even seen, but since I was having chest pains and newly on Humira, I was almost immediately taken back, given a room and given a fun gown to wear, but I did get to keep on my shorts underneath. (See Frankie, Myrtle, and, the Double Balloon)
Within the first hour, I had already had an EKG done, to check my heart, a urine sample, to check for pregnancy (that was never done, my sample sat there on the table until I left the ER), and all my blood tests were taken immediately and labeled STAT. I had a multitude of little stickers stuck to me for the EKG, and I am allergic to adhesives, but oh well.
Do you want honesty? I hadn't shaved my legs either. Not even knee cap down. So, that was fun having people up close and personal to my hairy legs, and even more fun trying to remove the sticky tabs on them. Ouch.
I also got an impromptu rectal exam from the doctor, to check for melena and blood in my stool! What fun that was! I got to lie on my side, rear exposed, with a little old man and his finger in my bottom. It was no fun for me or the doctor.
After all of THAT was done and marked somewhat unremarkable, I then had X-rays done on my chest. To rule out everything, I had a CT scan done on my abdomen, both with and without contrast, looking for any abnormalities, stones, etc.
Remember, this test makes you feel weird like you're hot or wet, or like you've peed on yourself, so I thought the things I felt during the test were bizarre, but I thought it was supposed to happen. I felt water like something was running down the back of my ears to my spine, and I even commented 'this feels weird' to the tech.
Turns out, the CT Tech who hooked up the contrast, he didn't twist the lid tight enough and CT contrast had leaked all down the back of my neck and the back of my shoulders. That stuff is extremely sticky and it made my hair bleed green color on their sheets. Enough had entered my IV to complete the test, but he had to get me a wet towel because it had leaked all over me. I was feeling water because it was really there. I found it kind of funny.
The hardest part about these visits are the waiting times I have found. In between each of these events, the scans, changing, bathroom, I was hooked up to the saline drip, and I'll remind you that I can taste it every time they flush the needle. Even the smell of the saline gives me chills now because I loathe the taste so much.
My nurse in the ER was shocked I had gotten CT scan contrast all over me because the X-ray tech blamed the IV, and she blamed him, so I got another flushing of the needle for her to prove a point, and a rush of saline taste to my mouth. Ew.
Her needle did not leak at that time, it showed all blood, a 'perfect IV' is what she said, but it began leaking toward the end of it, so I don't know where the problem was.
Something was leaking, dammit. I had saline dripping on me after the contrast fluid had already leaked on me, so I was sticky and tired and chilled to the bone at this point, and I was ready to go home.
When the CT scans came back, there was inflammation in my 'transverse colon to the distal sigmoid colon'. Pretty much, that means the bowel area underneath my rib cage and down the left side, towards the rectum, had 'diffuse wall thickening'. This is usually where I have the majority of my pain, my cursed left side as I call it, so it would make sense that this is where my inflammation lies.
The scan showed thickening of the bowel walls in this area and the doctor told me to follow up with GI on Monday about the Humira, the inflammation, and the chest pains. It may just be something I have to live with as a side effect; I even still feel a distinct pressure on my chest today. And where is my appendix?!
It is a good and bad thing about this inflammation, a blessing in disguise. It helps the doctors see my Crohn's disease, which is a BIG deal, as it has never been seen in a CT Scan or scope before, so we are happy it is 'seen' in this scan versus nothing but Myrtle being seen in August. But, it also means I am still not getting relief, that my Crohn's is probably worse. The vomiting cannot be helping.
Now that we see the Crohn's in scans, we need to fix it.
Well, come Monday, I tried to call GI, but it was Columbus Day, and so no one was in the office. I left a voicemail for GI Joanna and I hoped she would return my call by Wednesday. So instead, I finished another week of class on Monday.
Columbus Day really threw off my whole day because I kept forgetting. I would call the VA, or call to reschedule an appointment, or I tried to get other things done and I kept being reminded that it was a holiday and I would have to wait.
On Tuesday, GI Joanna called me back, but neither she nor Dr. S had gotten to my message about the ER yet, she was, in fact, calling just to schedule a follow up for my 3-month checkup. Had it been 3 months already? I've only had Humira for 5 weeks, the Imuran for 2?
That just proves the VA is slow to get things moving forward, it has taken this long just and it is already time for a check-up.
Anyway, I filled her in about Friday's ER visit, I asked about the details of my inflammation, because at this point I still didn't know, and I asked about the Humira, and about my blood tests due this week. She told me she'd call me back, and she went to speak with Dr. S, since she was in the clinic.
When she returned the call, Dr. S still wanted to see me for the 3-month follow-up, but there was not much else she could offer. I'd have to continue to live with this chest pain until I see GI, but of course, I should go to the ER if I feel worse...I will have Humira Wednesday this upcoming week. Will I have more chest pain?
We scheduled for the 25th and added another appointment to that week's chaos.
As you can see pictured, during the week of Oct 24-28 I have 5 appointments, so far. I will 3 appointments due on Tuesday, the 25th, and 2 appointments on Thursday, the 27th: Mental Health and GI, Blood Draw, Dermatologist, and Neurology.
Then for this week, instead of giving blood on Tuesday, we did that on Wednesday since I was going to be in Lexington anyway. I didn't know I could give my blood samples at the other VA location, so we went to the Leestown lab instead and I got my samples taken there.
Remember, I will have to do this bi-weekly for a liver and kidney panel, to check them for my Imuran use and how my body is handling the medication.
This is convenient because I can give my blood at that lab location on the same days I have my mental health therapy because my therapy is at the same place. And we don't have to go onto campus as often, another bonus.
On Wednesday after blood draw, my parents, brother, and nephew were in town for an event, so Philip and I got to see them for a few hours before, and we got to take them out to dinner. They had not seen my home yet, and I have lived here a year, and they never really got to see UK campus, so it was a nice trip for them to see us and for them to see my city.
We took them around campus and to Joe Bologna's, the best place to eat in Lexington if you are ever in the city. I got to vomit while my family got ready for their event and after dinner, how wonderful, but it was so nice to see them regardless.
I always hate watching them leave, I wish they could stay up here or visit more often, but that is an extreme rarity. It was nice to see Richard and my nephew, I never see either of them enough.
Otherwise, this week has been filled with stomach pains, and major chest pains, bowel pains that feel like something is boiling on my insides, all mixed with insomnia, nausea, and hand pain. Go figure. There were a few times puking I thought for sure I was gonna rupture something in my eyes, but thank heaven's I haven't.
I have 5 days until Humira Wednesday #4, and considering the chest pain and other issues, I am not looking forward to this one. I have a nice bruise on my stomach from the last injection, still. I am very surprised at how bruised it turned out.
This weekend is my last weekend doing nothing for a couple weeks, so I am going to relish in doing nothing. Halloween is about to take over and we have events and house parties to attend, granted my bowels cooperate with me, and I have costumes to make, but that stuff is easy. You guys can expect a plethora of pictures soon!
But, it is Friday, and I am not planning another ER visit tonight, so It Could Be Worse.
I'd also like to give a shout out to Lisa, Stephie, and Heather. You guys have been such a great support system through all of this. Thank you guys for thinking of me, I appreciate it, even if you do send me to the ER and I don't wanna (LISA!). You guys are true Warriors!
And as always, any information you’d like to offer up about Humira or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!
For those of you who are continuing to donate to the Cure for Crohn's and Colitis, I encourage you to donate towards my team page with CURE for IBD - where 100% of the funds We raise will be allocated to IBD research for a cure. That's right, 100%!!
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