Saturday, October 12, 2024

Coming home from the hospital and the road to recovery

 In the previous blog post, I explained my experience of being hospitalized for jaundice, high liver enzymes in the bloodstream, and a blockage near my pancreas.  I went through an ECRP procedure where a stent was placed from my liver to my pancreas. 


https://pablowegesend.blogspot.com/2024/10/my-experience-with-jaundice-and.html


In the afternoon of Wednesday October 2, 2024, I was discharged from the hospital.



The following social media post describes my feeling post-release from the hospital.


I'm back home after 6 days at the hospital (for jaundice, high level of liver enzymes in bloodstream due to blockage near pancreas). It feels good back on my own bed, without all these needles on my arms, and without the constant, unpredictable interruptions. Seriously though, the health professionals are hard working, accommodating, and deserve all the benefits they're fighting for. While I'm now home, I'm still dealing with the after effects of nausea and fatigue. It'll be a while before I'm back to normal (or maybe this is the new normal)






As mentioned in that post, I was experiencing high levels of nausea and fatigue when I returned home.

Return to work? That would have to wait!

The first few days home, I wanted to vomit but nothing could come out except a few spitballs.  

Meanwhile, all stools were wet for the next few days.

It was only a few days ago when I finally had more solid stoools.

And just like the last few days at the hospital, my appetite really decreased.

In the first few days at home, I could barely finish 1 small can of soup, whereas under normal circumstance, I could easily chow down the contents of 2 cans of soup. 

Or my some of my meals could only consist of leftover baby carrots and raisins that I couldn't finish at the hospital.  

It would be days before I was able to finish 1 can of soup in one sitting. 

It was only today (10 days after discharge) that I am able to finish 1 can of chunky chicken soup in 1 sitting. 

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Add to that,  I experienced upper abdominal pain due to the pancreas inflammation that was expected to occur after the ECRP procedure.

And sleep?

Due to the upper abdominal pain, I was too distracted to fall asleep. 

I would literally be up for hours, tired enough to sleep but feeling too much pain to sleep. Some days, I would only catch 1-2 hours of sleep at night.

It was 10/7/2024  (5 days after discharge) when I finally took an afternoon nap, where I was able to make up for lost sleep time of previous nights. 

I also took afternoon nap on some of the following days, which I was able to catch up on sleep.

The last 2 nights, I was finally to get a few more hours of night-time sleep. 

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And through all this time, I had to fill out documents to ensure I can get the benefits to help me through this tough time.

Yes, my family was able to help out with some things, but my family isn't rich. 

Meanwhile, every document I have to complete and/or submit has to be correct and error-free. 

At the same time, the institutions reviewing those documents work at a slower pace than they expect us (the general public submitting those docs) to.  Meanwhile, bill collectors aren't as patient. 

Luckily, I have a computer, scanner, and printer at home, but some people can't afford that stuff. And they're the ones who need help the most. 

It's experiences like these that remind me that we need a more humane and stronger safety net system. You can't "work hard" or "bootstrap" your way out of every problem.

 


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I do have a follow up procedure  scheduled later this month.


I'll explain more when it's time. 

Thursday, October 10, 2024

My experience with jaundice and the hospital

 Something that seems benign can be a sign of something much worse.


About a month ago, I noticed my urine was becoming more heavily yellow, and even dark-yellow (like amber).   Whereas before, my urine is usually light-yellow or clear.

The week I first noticed it, I had garlic bread that mom bought for me.   So maybe the heavy yellow urine is from the yellow of the garlic bread.

But the following week, I had no garlic bread, but still had heavy-yellow or amber colored urine.

I still had chicken soup, which I've been eating for decades.

By the 3rd week, I noticed yellowness in my eyeballs.



At that point, I knew it was time to call the doctor.

Even then, I doubted that the yellowness of my eyeballs and the amber-colored urine were mere coincidences.


My usual primary-care physician was booked that week so I booked my appointment for another one that worked with my insurance (Kaiser Permanente)

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Thursday, September 26, 2024. 

As I talked with the doctor, I mentioned all the symptoms I've been noticing. He mentioned that the yellowing is a sign of jaundice. He also ordered a blood test to check for liver enzymes.

Only hours later, he left a voicemail and an email urgently telling me to go the emergency room to get a liver imaging.  My blood had way-above-normal levels of liver enzymes.

By the time I got the message, it was circa 17:45 (5:45 pm in the evening).

The nearest emergency room that took my insurance (Kaiser Permanente)  was the Kaiser Moanalua Hospital.  It takes 2 buses to get from my home to there. 

I got there circa 19:15 (7:15 pm).

When I first entered, I talked with the security. As part of the entry procedure to the emergency room, he asked if I had any vapes, knives, pepper sprays, needles, scissors, etc? Well, I did have a pepper spray and a scissor so that got confiscated. He placed it in a bag only to be returned when I leave. 

Then I checked in, with a printed copy of the email from the doctor telling me to go to the emergency room for liver imaging.

The nurse asked a series of questions, took my blood pressure (slightly above normal) and weight (less than I expected but still more than my ideal).

And it was to go a room where I lie down, wait, talk to a bunch of medical professionals, wait some more. More waiting and more waiting.

Then it was time for the liver imaging, then back to my room.

The liver imaging showed a tumor blockage near my pancreas.

I will have to stay overnight.

Then circa 23:30, I was transported to another care unit within the hospital.

When there, I was bombarded with questions which I thought Kaiser already had answers to (meaning I could find them myself when I log into my account).

IT was questions after questions. They also inspected my belongings, confiscated the meds I had in my bag (presumably so they don't interact with whatever meds they will provide during my stay).

Presumably to cover their end, they also asked what's in my wallet, how much cash I had, and what's in my bag. 

I'm sorry but being that I live alone, I'm not accustomed to people being all up in my business. But Kaiser has to cover their end, so that they don't get accused of losing my personal possessions. 


Friday, September 27, 2024

By the time the check-in and the questions were over, it was already Friday.

By 0:30 (12:30 am), I could finally rest and go to sleep.

5am, it was time for vitals (blood pressure, temp checks).

So much for getting a long period of rest in the hospital. 

My parents came by to visit. We talked with medical professsionals about the plans.

The plan was for me to have an ECRP, a procedure where they put tubes through my esophagus, one tube with a camera, and another tube to chip away at the blockage at my pancreas.

There are only a few doctors in Hawaii that know how to do the procedure.

And to have that procedure done, I couldn't eat or drink anything for hours. So I was hooked on IV's nearly all day.

By the time late afternoon came, I was told that they didn't time for me to get the procedure for that day.  I would have to wait for Sunday morning.

Meanwhile, I could be unhooked from the IV's and I could eat. 

I had chicken soup and rice :)

Luckily, I bought my smartphone and charger.

I notified my social networks about being in the hospital.


I got jaundice with unusual yellowness in my eyeballs and skin. Did a blood test and found high level of liver enzymes. Did a scan and found a small tumor near my pancreas. Will have to wait until Sunday for the procedure to remove the tumor. That's all the details I'm willing to share for now. I'll provide updates when I'm ready to do so!

 

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Saturday, September 28, 2024


Basically a day of waiting.

Being that procedure was on Sunday morning, I could eat all I want on Saturday, all the way until midnight.

Living it up with
  • breakfast (rice, turkey sausage, toast, applesauce)
  • lunch (rice, shoyu chicken, toss salad, corn, raisins)
  • dinner (chicken soup, rice, roll, raisins)

I also spent some time watching TV (college football, news) and taking naps throughout the day

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Sunday, September 29, 2024

There would be no eating or drinking from midnight being that the ERCP procedure required hours without food or beverages.


My parents came to visit circa 7:30 am.

Dr. Wong (who was going to do the procedure) came circa 7:50 am. 

It was time to transport me to the surgery room.

At the surgery room, all the health professionals there introduced themselves and talked about the procedure.

The anesthesiologists put the needle in me to get me to fall into a deep sleep.


Then hours later, I woke up and the procedure was over.  The blockage was removed!  They placed a stent from my liver to my pancreas.

I was on IV's for a few more hours, 

I could only eat a clear liquid day for the rest of the day.

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Monday, September 30, 2024

Woke up with nausea (vomiting, liquid stools) and heavy hiccups!

Was on IV's all day.

The IV machine makes irritating noises when my arm isn't positioned the right way. 

In the afternoon,  it was time for liver imaging again.

IT confirmed that the blockage near pancreas has been removed. But now the pancreas now has inflammation (an expected side effect). 

could only eat a liquid diet.


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Tuesday, October 1, 2024


1st of the month

Started with a liquid diet. When my parents visited while "eating" my liquid diet.

The IV's were removed circa mid-day.  

Still had nausea (liquid stools) and upper abdominal pain (from pancreas inflammation). 

Took a nap

Watched the vice-presidential debate (will comment on politics in a future blog post). 

For dinner, I could have a solid diet. I ordered chicken noodle soup and rice

Under normal circumstances, I could chow all that down easily,

But normal circumstances are OVER. I couldn't even finish

This was merely the beginning of my decrease in appetite


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That evening I posted this on social media

Update on my hospital stay. Sunday, i had a procedure where a blockage (noncancerous) was removed from my pancreas. A stent was placed to flow the bile from my liver to my pancreas. There was some expected inflammation of the pancreas, though that's an improvement from having all those liver enzymes flowing to the wrong places. I'm still in the hospital for rest and recovery. That' all I plan to share for now




Then, I just went to sleep.

Circa 20:15, this weird nurse named Nelson came in, saying I didn't have to wear my shield or mask, and attempted to remove my face shield. I told him off!  He backed off! 

Nurse Nelson is one of those people who think we should act as if we're in 2019 again. Everyone else I  met in the hospital knows better. 

Especially since every night I was there, I kept hearing the same guy coughing really loud over and over again.




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Wednesday, October 2, 2024

Woke up early. Read the Sunday newspaper which I couldn't finish earlier. 

Still had nausea (feeling of wanting to throw up; still had wet stools).

Still had low appetitie. I couldn't even finish a toast I ordered for breakfast.

Health professionals still nag on me to eat every meal

For lunch , I ordered baby carrots and raisins (usually just a snack for me) and I couldn't even finish that! 

But because I can walk,  no longer needed IV's, and I wasn't dying,  I could go home. 

I got all my confiscated items (pepper spray, scissors, meds)

That afternoon, my dad drove me home.

I could finally lie down in my own bed and I no longer had needles in my arms.

But this was merely the beginning of my recovery 

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Other Reflections on Having Jaundice

As mentioned earlier in the blog post, the first signs were my urine getting more yellow and even amber-colored.

Then my eyeballs were getting yellow.

AT that point, I couldn't notice it on my skin so much being that my arms are exposed to the sun and therefore brown colored. Makes it harder for jaundice to be noticed.

But when I was at the hospital, I noticed the skin on my hands, feet,  and chest was getting more unnaturally yellow. 

Based on my experience, I highly suggest that if you notice your urine is changing color (even if it's a slightly different variation of yellow) to contact a doctor ASAP.  Ask about blood tests for liver enzymes.  The sooner you ask, the sooner you'll be on the road to resolving this issue before it gets worse. 

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Other Reflections of being in the hospital 

As mentioned earlier in the blog post, be prepared to be asked about the belongings you bring.  The hospital has to cover their end. 

Leave anything that could be used as a weapon at home.  Hospitals tend to have a worst-first mentality when it comes to stuff like that! 

But definitely bring your cell phone (if you're into that kind of thing) and a charger with you.  You'll have a lot of downtime, and you can use it to entertain you while you are waiting. Plus, you can still communicate with the world. You don't have to be in pure isolation.

Also, bring dental floss. My hospital provided toothpaste and toothbrush, but not dental floss. Just bring them all just in case. 


The room I was in could fit 2 patients, but luckily I had it all to myself.

But definitely expect a lot of interruption from the medical staff while you're there.

Be prepared to be flexible. They may say they'll come back in 20 minutes. Don't take it too literally. There is constant change of events in the hospital, and emergencies can happen at any moment. 

This can be hard for those who are more accustomed to a regimented living. Being that I work in schools, my daily work schedule tends to be regimented. Life in the hospital is NOTHING like that! 

Expect lots of questions! Hospitals want to know as much about you so that they can best care for you.  Some of us don't even share intimate details of our lives even to closest friends or family, making it feel like a shock when hospitals ask all these questions. Be patient with the medical professionals, they have to follow guidelines and ask those questions even when patients are annoyed by them,


Anyways, that's all I have to share for now. My next blog post, I plan to describe my life at home recovering from all this.