The burning in my arm is better today, thank you ❤️

The burning where the port was taken out of my arm is better today. I think your instincts were correct, the burning was caused by the cholaprep I rubbed on it on Saturday that was stinging the wound. From the looks of the gauze that’s currently over the wound, perhaps I didn’t let the wound dry completely after I put on the chloraprep, and it probably causes the wound to sting by sitting moist in there all day…

Because it was feeling better, Noah and I didn’t take the dressing off and flush it…now it’s only stinging a tiny bit, but it’s mostly gone, so I’m hoping by tomorrow there’s no stinging at all. ❤️

Thanks again for everything, and I’m sorry for bothering you so late. I was worried that it was getting infected in a different way, I’m relieved it’s looking a wound care issue…

Warmly,
Tara 🙂

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Bad burning in my arm where my port was


Hopefully it will be a little better tomorrow, but the spot where the port was in my arm has burning pretty badly tonight, the pain starting to go up to my armpit.

The packing came out on Thursday and a bandage was put on. The instructions were to leave it on until next Thursday, then take it off.

The problem was last night the bandage came off when I was sleeping.

So Noah and I put on masks, and took a dressing change kit to put new dressing on it. We cleaned with the the cholera-prep (the same thing they used at the procedure center), and it stung a little. The wound had partly closed but not all the way closed. Noah seemed to think I accidentally ripped it open when I was disinfecting myself.

So I patted it, then we put the dressing on. It seemed ok, after the stinging wore off.

But tonight the burning is bad and I’m not feeling so good…I’m hoping tomorrow it’s better, I’m not sure what to do. Im pretty sure the port was infected in my arm for a few weeks, it might be festering in there pretty good. I’m not sure not sure to do another this burning.

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Heart monitor activity 10/9 to 10/15

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 ❤️
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Wow— so my port is infected — Proteus Mxxxx

Whenever you have a chance, could you call me when you have a second. It turns out my port is infected!! I’m so grateful Dr. Ng took it out!!! ❤️❤️❤️

Dr. Ng asked me to contact you about what antibiotics I should do to make sure the infection gets cleared. 😍

I’m so happy he took it out, I couldn’t thank him enough. Many doctors wouldn’t have touched my port because it wouldn’t have looked infected enough for them. Even the nurse when I got to the procedure center was dismissing my concerns that it could be infected “it doesn’t look like it has any pus to me”.

And when I tried to explain to the nurse that I get infections where I’m not going to have pus or a lot of redness or a fever, she gave me that ‘what kind of craziness are you talking about’.

This moment with the port is such a case study in why doctors need to be paid to think, why clinical history of a patient is so important…

Thank you very much ❤️❤️❤️❤️❤️

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Can I use the heart monitor a few days longer?

I was wondering if I could leave the heart monitor on a few days longer. I had the port in my right arm removed at 5:25pm on Monday (yesterday), and I’m curious to see if my heart rate improves now that the port is out of my arm.

If my heart rate improves, then that will help Dr. Pitchon assess the extent of any infection from the port, or maybe give us some kind of information (?)

I’m hoping my Sed Rate and CRP will improve in a few days as well.

There’s always a chance the root of my current issues is something else, but I’m actually hoping the port is the problem of my recent health struggles, so I can recover and be over it by early next week 🤞🤪👍.

I’ve been keeping a diary of sorts every day wearing the monitor, when I hit the button, but also just a general diary of events in case we need to it to try and determine what’s going on. Hopefully my heart rate problems will resolve now too, and over the next couple of days they’ll be signs of improvement. 🙂

Thanks for everything. It was really nice seeing you again after all of these years, it felt like getting a fresh perspective on my case while having the added bonus of having known me a long time ago, so there’s a point of comparison too. It was a rare experience for me, the first time I’ve had something like this with a doctor, and there were moments it felt like the best of both worlds.

I’m glad you’re doing well, and I look forward to talking with you in a few weeks.

Warmly,
Tara

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Me and Mr. Seagull posing on the PL at Cedars ❤️

Me and Mr. Seagull are out posing on the PL at Cedars 🙂 Just got port out, yea. I’m very grateful the Procedure Center squeezed me in today. ❤️❤️

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Current state of the port on my arm: red, burning.

This is what my port currently looks like. It burns really bad. I took out the needle that Dalmar put in Friday yesterday afternoon since I knew I wasn’t going to flush it again, and I’m surprised by how much worse my port looks today then yesterday.

Tomorrow, the plan is that I’m going to go to Cedars first thing in the morning (hopefully as close to 8am as possible when the procedure center opens) — I’m going to go to the procedure center, beg them to squeeze me in tomorrow. I’m going to bring a lot of stuff to do in case I need to hang out at Cedars all day, phone chargers and everything thing, but I’m not leaving until someone takes out my port.

If the procedure center absolutely says no way, they can’t squeeze me in, then I’ll call you and talk about going through the ER, to be admitted and have it done that way, but I only want to do that if there’s really no other way to get this port out Monday or Tuesday.

I guess I’m just wondering if there is something the procedure should do once they take it out, can they send the port to pathology to be cultured? Is there a way to write the procedure center a note so they don’t have to call and bother you? They may want to talk with you about my case 🤔.

I’m really hoping that once this port is out of my arm, that my arm rate will improve and I’ll start feeling better too. I’m glad we did everything we could to try and save the port, since I desperately need vein access, because now when the port comes out I won’t have any regrets about it. Cuz no matter what happens in the future, this port had to come out of arm right now…

It burns really bad 😢.

Thanks again for everything ❤️

Tara

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I’m going to call you tomorrow — I was severely ill with very bad chills all night after my port was flushed —

So my port was flushed with saline yesterday around 5:30pm, for the first time in a few weeks, and about two hours later I had severe chills all night.

I was really really cold, even with an electric blanket on me, then I got very hot around 11pm.

I am also feeling extremely weak, like my blood pressure is probably low. I don’t know where my machine is right now and I’m too weak to get up to find it.

The entire two weeks I didn’t flush my port, I didn’t have chills like this the entire time, then tonight they came back with a vengeance.

My cough was also severe about an hour after my port was flushed.

While it’s not a 100%, I really feel this port needs to come out as soon as possible. If it is infected, my heart rate problems might improve too once it comes out.

Since it’s the middle of the night, I’m trying to lay in bed and hang on until morning, not to bother you and Dr. Sherman. I’m hoping like the other times I had severe chills, by morning they’ll be a little bit better, but it still needs to come out.

My question is — once the port comes out, do I need to do some IV antibiotics go make sure the infection is gone? Is there any way we can culture this thing when it comes out, to see what kind of bacteria is growing in there?

Thank you very much for everything, I am scary ill right now. I’m overdue on my IG and I haven’t even taken any oral antibiotics for a few days. Clearly it was a receipe for cooking up something bad in there…

Thanks again ❤️❤️❤️

Tara

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What do you think of this bump on my elbow?

What’s interesting about the bump on my elbow, is that it doesn’t hurt or have liquid in it, I can’t pop it or anything like that. It seems pretty solid. Just because I’ve had squamous cell, do you think I should have it cut off? What else could this be?

Dr. Chang put the heart monitor on me today, I’m supposed to mail it to Texas in three days then we will get the report after that. He jumped a little when I told him my heart rate up to around 190 when I took Cookie out for a walk the other day. I’m guessing my heart rate is high probably due to stress…or maybe it’s all part of my feelings like crap all the time, lol…or my cough…I guess we’ll see ❤️

Look at how tiny this heart monitor is! I can’t believe how small heart monitors have gotten. Last time I did this (ten years ago?) it was a much bigger ordeal…

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The burning in my arm is almost gone

I kinda feel like an idiot about this now,

but after the needle came out of my portacath in my right arm, about 24 hours later the burning around it dramatically improved,

and now a couple days later the burning is almost completely gone…it will definitely take a few more days to completely heal, but it’s almost gone.

(I just feel like an idiot because I hate to waste people’s time, Dr. Kim was so nice, and taking the needle out as a solution to the burning seems so elementary, I probably should have thought of that myself by now after my years as a patient…)

Everything else in my body is a mess. I’m still coughing a lot, sometimes with phlegm I can actually spit out,

and lately I’ve developed weird chest pain/pressure, like a vaccum is sucking in my chest. I check my oxygen level, and that’s fine, but the feeling isn’t good. It started a few weeks ago, I’m not entirely sure, but I thought it was stress about the trip, now I know it’s not. It’s related to the coughing.

I’ve recently realized the couch I’ve been sleeping on for weeks is covered in mold.

It’s been smelling funny, I ignored it cuz I thought we were leaving, but I finally flipped the couch cushions over and it’s covered in mold. Cushions are going in the garbage and I’m getting a cot, but now I’m wondering if breathing in on a moldy couch for a few months could have caused this cough (?)

Between the moldy couch and my bad vaginal yeast infection (I’m about to finally start that ointment…), maybe what I’ve been coughing is a fungal infection (?)

My lips are still strangely chapped, ointment Dr. A gave me is actually an anti fungal ointment. I’m about to try it…

My jaw/inside of my lower mouth hurts and still feels slightly swollen and tender, ie the actino infection. I’m hoping, like Lyme, eventually, somehow, miraculously, it will just go away…

But the good news, I finally started a novel, lol…finally….I need a writing project right now, I’m really depressed about a lot of things. I’m usually an isolated person anyway but the pandemic is really starting to get to me…it must be so much harder for normal people…what did people do in previous generations to get through their pandemic, we have phones and zoom and Facebook and texting and it’s still really hard?

I’m still exhausted for overdoing it last week…my bones ache again and it hurts to walk…I need this week to rest ❤️

Thank you 😍.

Happy New Year 🙂 I hope this is a wonderful year for you 🙂

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