Heart monitor activity
** marks when I pressed the button on the heart monitor (I have to add those moments into the diary)
I’ll probably finish up the heart monitor activity tomorrow morning, since I’m going to see Dr. Chang in the morning, it will bring the journal full circle.
I didn’t write everything down, especially after the port came out and I started to feel better,
but one thing I did notice is how much my cough has improved since the port came out of my arm — I still have a it a little bit, especially when I lay down, but the cough has improved a lot since the port came out —
| 2:20pm 10/9 | Put on heart monitor in Dr. Chang’s office |
| 2:43pm 10/9 | Waiting for blood draw at Plaza lab |
| 3:06pm 10/9 | Getting blood drawn |
| 3:20pm 10/9 | Eating Tomato Basil soup on walkway between towers |
| 3:30pm 10/9 | Went to Wells Fargo Bank in East Tower |
| 3:41pm 10/9 | Coughing fit. I’m sitting outside the towers by 3rd street. |
| **3:45pm 10/9 | Still sitting outside, feeling a little dizzy |
| 3:48pm 10/9 | Started walking to Trader Joe’s |
| **4:01pm 10/9 | Walking around Trader Joe’s. Dizzy and lightheaded. I feel like I need to sit down |
| 4:12pm 10/9 | Sitting outside Trader Joe’s, waiting for an Uber |
| 4:36pm 10/9 | Home from Trader Joe’s |
| 4:40pm 10/9 | Yelling at Noah — discovered he lied to me about submitting a government assignment |
| 5:05pm 10/9 | Ate an Orange |
| 5:12pm 10/9 | Lying down in bed to rest |
| **5:28pm 10/9 | Chest pressure. Light tightening in the chest |
| 5:33pm 10/9 | Nurse (Dalmar) arrived to put needle in the port |
| 5:40pm 10/9 | Needle in, Dalmar flushes port with saline |
| 6:29pm 10/9 | Feeling a little warm and slight chills. From the port flush (?) |
| 5:45pm-7:08pm | Talking on phone with Cousin in Canada 🇨🇦 |
| 7:05pm 10/9 | Been coughing with some phlegm the last hour. It’s enough phlegm that I can actually spit some out. |
| 7:10pm 10/9 | Ate some homemade chicken and potatoes soup a friend made (gluten and dairy free 🙂 |
| 7:20pm 10/9 | Used the bathroom. Pee but too constipated to poo. Had coughing fit, almost so bad I vomited my soup (I’ve had coughing fits that bad over the last few weeks from time to time). |
| 7:23pm 10/9 | Still on toilet. Vomitted a little after coughing, mostly mucus came out, mucus I’ve been swallowing over the last couple of hours. I was able to hold in most of the soup. |
| 7:25pm 10/9 | Finally a little nugget of poo came out. Definitely need to take the Miralax… |
| 7:28 10/9 | Taking Cookie out for a walk. Brought my portable chair with me in case I need to sit and rest. |
| 7:32pm 10/9 | Too cold outside for me(temp 66). I was freezing and shaking and I couldn’t stop coughing. Had to stop and cough every few feet. |
| **7:39pm 10/9 | Back inside the apartment. Vomitted everywhere. Still shaking. Coming to conclusion port is a problem. |
| 7:50pm 10/9 | Took some liquid Tylenol PM cough medicine. First time I’ve tried a cough medicine for my cough. |
| **7:54 10/9 | Fluttering in my chest. Maybe my stomach because I just vomited everything? |
| 7:55pm 10/9 | Starting drinking spearmint tea with raw honey |
| 8:12pm 10/9 | Feeling warm |
| 8:40pm 10/9 | Was drifting off into a ligh sleep with a super hot electric blanket on me. I was having severe chills, keep waking up and dosing back to sleep. |
| Around 11pm | Woke up really hot, the chills had past and now I was really hot. |
| **11:55pm | Heart palpitations. Still feel very weak, like my blood pressure could be low |
| 12:40am 10/10 | Checked blood pressure. Readings varied, but pulse consistently 120-130 |
| 12:50am 10/10 | Ate a Hagen Daz frozen ice cream bar. Very rough night. |
| 12:58am 10/10 | Resting again. Going to try and sleep. |
| **1:21am 10/10 | Chest tightening |
| 2am-ish 10/10 | Fell asleep |
| 1:15pm 10/10 | Woke up — feel a little better than last night. Really tired though. |
| 1:20pm 10/10 | Texted with Dr. Sherman. He got my email about the severe chills. He was checking in, wants me to go to the procedure center stat Monday morning to discuss removing my port. |
| 2:23pm 10/10 | Got up to use the bathroom |
| 2:27pm 10/10 | Eating a Coconut popsicle |
| 2:34pm 10/10 | Laid back down in bed. Might take a nap. |
| **3:38pm 10/10 | Woke up drenched in sweat. Heart palp? |
| ~4pm 10/10 | Drifted back to sleep |
| 7:01pm 10/10 | Woke back up again. |
| 7:07pm 10/10 | Got a popsicle |
| 7:08pm 10/10 | Went to bathroom |
| 7:51pm 10/10 | Eating another popsicle |
| **8:31pm 10/10 | Dizzy. Slight headache. |
| 10:20pm 10/10 | Eating bean and onion soup |
| 10:53pm 10/10 | Took Augmentin |
| 11:20pm 10/10 | Coughing fit (one of many today) |
| **11:52pm 10/10 | Some mild chest pressure |
| 11:58pm 10/10 | Vomited a little. Mostly mucus that came out, stuff I’ve swallowed from coughing so much |
| ~12:30am 10/11 | Walked Andrea (Noah’s tutor) to her car with Cookie. Stood and talked by her car for a few minutes. |
| 1:15am 10/11 | Back home, finishing reading a play to help Noah with his schoolwork. |
| 2:45am 10/11 | Started 4g of IG |
| 3:20am 10/11 | Finished injection |
| 2:30am-5am | Watched TV |
| 5:19am 10/11 | Eat small Dove ice cream bar |
| 5:22am 10/11 | Bad coughing fit. |
| ~6:30am 10/11 | Drifting to sleep |
| 8:50am 10/11 | Woke up from a really bad dream. Noah and I had been kidnapped from a Mormon cult. I tried to get them to let Noah go by talking about his immune deficiency, but once they realized he was expensive to treat they killed him instead. What they did was they told the followers they had transformed Noah back to a baby status to adopt him out, but instead they found babies that looked like Noah to ‘prove’ it to them, but they weren’t Noah. I was so upset, I kept saying “he was so smart, he was going to cure so many things in science”. |
| **9:30am 10/11 | A little bit of chest tightening. |
| ~11am 10/11 | Fell back asleep. Woke up again around 1pm, then went back to sleep |
| ~4pm 10/11 | Woke up again |
| Spent the day helping Noah with his homework. Didn’t walk cookie or do much, felt too tired to do that. | |
| ~1:30am 10/12 | Had to take some Tylenol PM try and sleep. Having problems getting to rest. |
| **2:45am 10/12 | Strange chest spasm |
| ~3am 10/12 | Finally drifted off |
| 12:30pm 10/12 | Woke up. Need to go to Procedure center today |
| 1:30pm 10/12 | Left to go to Procedure center |
| 2pm 10/12 | Begged the nurse to squeeze me in today…they weren’t super happy “you should really call before you come”, she said she had to clear it with Dr. Ng |
| 2:10pm 10/12 | Wow — Dr. Ng approved squeezing me in!! I’m so grateful |
| 3:45pm 10/12 | Left Procedure Center, went to Judy’s Deli and got a bowl of Tomato Basil soup |
| 4:10pm 10/12 | Back at Procedure Center |
| 5:25pm 10/12 | Port came out of my Arm |
| 5:35pm 10/12 | Left Procedure center |
| 5:40pm 10/12 | Noticed a beautiful Seagull flying over the plaza level and resting on the water foundation. Took some photos. |
| 6pm 10/12 | Walking to Trader Joe’s |
| 6:45pm 10/12 | Home from TJs |
| 7-10pm 10/12 | |
| 10pm 10/12 | Went to ride Aid |
| ~10:30pm 10/12 | Walked Cookie a little bit |
| 12:05am 10/13 | Took Augmentin |
| 12:38am 10/13 | Playing with Cookie |
| ~1:30am 10/13 | Walked Andrea to her car with Cookie |
| 2:45am 10/13 | Getting ready to lay down. Arm burning from port being removed. |
| ~4am 10/13 | Fell asleep |
| ~1pm 10/13 | Woke up briefly, then went back to sleep |
| 3:30pm 10/13 | Woke up again, made some phone calls |
| 4:30pm 10/13 | Ate some mushroom ravioli |
| 4:45pm 10/13 | Took Augmentin |
| 5pm-11:30pm | Helped Noah with school work |
| 11:59pm | Getting ready to take Cookie out for a short walk |
| 12:03am 10/14 | Walking around with a cookie a little. Walked a little quickly at times, I noticed my pulse wasn’t going as high as it did the other day. |
| 12:35am 10/14 | Took Augmentin |
| ~4am | Drifted off to sleep |
| 5:40am | Woke up, had to pee, back to sleep |
| 11am | Woke up |
| 1pm | Ate a Breakfast Sandwich |
| 3:20pm | Took Augmentin and cod liver oil |
| 11:16pm | Took Augmentin and Cod Liver Oil |
| ~4am | Watched TV for a few hours, then fell asleep |
| 1:20pm 10/15 | Ubering to Cedars |
| 1:40pm | Procedure Center — they took Bp and pulse. Removed packing from port. |
| ~2:10pm | Walked from Procedure to West Tower to see Dr. Artal |
| 2:45pm | My bp and pulse were taken again. Spoke with Dr. Artal about publishing this port infection as a case study with Dr. Chang. It’s important because it helps doctors justify to insurance companies why patients can sometimes need treatment and help for conditions even when the patient doesn’t present with all the normal symptoms for a medical condition. (In this case, because of my immune deficiency I didn’t have a fever or an elevated wbc, and my arm was slightly red but not as a red and pus like that a normal person would have. |
| Dr. Artal wants me to follow up with Dr. chang since my heart rate problems might be connected to the port infection, to make sure there isn’t any lingering issues that need attention. | |
| 3:05pm 10/15 | Walking to Trader Joe’s from Cedars. |
| ~4:30pm | Eating Indian food with Cookie ❤️ |
Hope for Answers 