[Image shows three spoons on a laptop keyboard. Overlaid is clip art of white torn notebook paper with a red paper clip. On it in black texts reads “Holiday Update: Tilt Tables and Ports” and has a red heart rate line below and below that in reddish brown text reads “Thee Crohnie Grace”]
Since Summer I had been trying to get to this point, for many years I have had low blood pressure and tachycardia, only more recently had it become more of an issue with pre syncope (tunnel vision/near passing out). As many people know, getting a diagnosis takes a lot of effort. You cannot just call up your doctor and get an answer that same day.
In July, I had came in to my PCP (Primary Care Physician) and express my concerns. She took my blood pressure, did an EKG, and said, “Well it looks like it has to do with your orthostatic pressure. I will make you an appointment with a cardiologist, we will have to get an ultrasound of your heart and you will need to wear a halter monitor until you go and see him.”
It took a few weeks to set up the other tests, almost three weeks before my heart monitor arrived which I was supposed to wear for 2-3 weeks, and only finally at the end of August did I get an appointment with a cardiologist.
I wore the monitor, got the tests, everything showed that my heart looked good, but was definitely working overtime. Anytime I stood up my heart would go up to 150-190 and even on occasions reaching 200+ beats per minute. My cardiologist said that it looked like Postural Orthostatic Tachycardia syndrome but that he couldn’t diagnose that. He put me on Cardevilol (a betablocker to lower blood pressure/heart rate) and told me to come back in a month and see if that helped.
On such a low dose there was no noticeable changes, my heart rate was still high and I was still dizzy and sick when I stood up. After a month passed I went back, he decided to make an appointment with an electrophysiologist who could run more tests and diagnose POTS (Postural Orthostatic Tachycardia Syndrome) but he told me in the meantime I should stay on the beta blocker.
It was two-three months before I heard back with an appointment date for the electrophysiologist, this was in early November. He agreed that is definitely looked like POTS and would want to do a tilt table test to be positive. He told me to continue the beta blocker as well until then.
When I was in the hospital the day after Thanksgiving for kidney stones, they took me off the beta blocker because my blood pressure was 70/50 with a heart rate of 194 and they didn’t understand why I was put on one in the first place. Luckily after I was released from the hospital upon passing two kidney stones, dealing with hydronephrosis and sepsis, I finally got a call for the tilt table date: December 30th.
Finals ended, winter break started, things passed by quickly and before I knew it, December 30th finally came around. I was told to be there at 8:30am despite testing not taking place til 10:30am.
Two lovely nurses took me back to their waiting room where they would hook me up for IV fluids and take vitals and monitor me for two hours prior to testing.
[Image on the left shows me in a light blue gown with dark blue and maroon diamonds on the hospital gown, I have my hair pulled back into a black beanie, I have make-up and glasses on and my NJ tube taped to my face with two pieces of plastic tape. Image on the right shows my foot hanging off the bottom of the bed I have black, grey and white leggings on and socks. On the bed is orange IV3000 dressing and a flush along with a paper to mark vitals on.]
I informed the nurses I had a port and they began to look for RNs who could access it. The first RN came in and immediately began to suggest that if she couldn’t access my port she would have to try an IV, and reached out to grab my hand. I pulled my hand back. If a nurse comes in and starts suggesting alternatives, I think it shows she’s not confident in her abilities, which means she is already thinking she is going to miss. I didn’t appreciate the lack of confidence in herself and her talking to me like a child.
Her lack of confidence showed as she attempted to access my port and missed completely, sending me into a meltdown as I was already stressed and overwhelmed.
A second RN who seemed to know what she was doing came in and was far more confident in herself which made me feel a lot better. She reswabbed the area and tried, but she too missed and as she pushed the needle it made an audible popping noise. She thought that meant she had gotten it in, as typically when you place the needle properly in the port it makes a similar noise, but I could tell from the pain that she had not gotten it in the port either.
So finally they gave up and called in VAT and started an IV, which thanks to my chest still throbbing from the missed attempts at accessing my port, I didn’t even feel the IV stick.
They started fluids and we headed to the testing room to wait for the doctor.
I laid for probably 30 minutes because the doctor was late, I was still anxious and overwhelmed and now in pain as my chest was still hurting and my back as well from laying on the hard metal table, causing my blood pressure to be what most would consider normal.
Finally the doctor came in and I was raised upward, my heart rate went to 156 and my blood pressure went down a little but still was not at my normal due to my anxiety and pain.
For twenty minutes I stood and my heart rate stayed about the same within a few beats of 156. I didn’t pass out, just felt dizzy and a bit sick. So then they gave me nitroglycerin to lower my blood pressure and boy did it kick in quick.
Within seconds of putting it under my tongue it felt like someone just took my oxygen out from under me, my blood pressure dropped to 90/70 which is about my normal most of the time. And my heart rate jumped to 198. Still I didn’t pass out. I just slumped a little bit and felt exhausted and sick and dizzy.
The nurses were amazed I hadn’t passed out. After twenty more minutes my heart rate was still 190+ and they laid me back down. The doctor left without allowing me to ask any questions or even checking to make sure I was okay after the test. I began to get a bit emotional because I had been extremely overwhelmed and the heart rate also has a tendency to make me anxious or jittery when it gets that high.
The nurses took me back to the room I was in previously and pumped me with some fluids til I felt good enough to leave. They gave me a paper saying I needed to rest the rest of the day and to follow up with my electrophysiologist which was already scheduled for later this month.
[Image shows me on the couch with a brown blanket covering me, there’s a red checkered blanket behind me. I’m not wearing my glasses.]
I slept the rest of the day. And planned on calling my doctor Monday to get my port checked out to make sure it wasn’t tilted or flipped as it has happened in the past when nurses miss the port.
The rest of the weekend went smoothly, I played games with friends for New Year’s, spent New Years Day at home resting because I had a cold. And then called the doctor Monday, but they were closed. So I called yesterday and they scheduled for me to go get my port x-rayed today.
We did that earlier today and are awaiting results because since I have my Entyvio infusion this weekend I need to know whether or not the port is accessible and if it’s not I will need to schedule with Cincinnati to get it fixed or replaced again.
[Photo of me from earlier today wearing a black and white stripped dress with pokemon on it. My chest has a Phoenix tattoo in orange and gold, you can see my port scar. I’m wearing a blue tattoo choker and my glasses are pushed up on my head. My makeup is done and my NJ tube is taped to my face with clear IV 3000]
I haven’t updated in a while, but I plan on updating more. After I got out of the hospital with kidney stones I wasn’t able to take my mood medicine because the only syringe I had that fit my NJ tube connector broke and it put me in a bit of an emotional funk for a few weeks before I got it back in my system. But I’m still kicking. The new semester is upon me and I have more doctors appointments coming up. Hopefully this new year will bring lots of good things.
I should be getting a new rheumatologist locally and a referral to genetics, hopefully I will be getting a GJ tube and put my nose hose days behind me. Whatever the future holds I’m prepared to take it on. Happy New Year, I hope you all have a healthy and happy one!
Thee Crohnie Grace