This blog is the third part of my Pancreatitis Series. If you haven’t, you should read Part 1 and Part 2 first to get caught up. I have explained the start and the beginning to my time in the hospital. Now is all about the final days of my hospital stay and the confusing conclusion to my diagnosis. (Warning: This blog is a little longer than normal.)
October 12, 2018 (FRIDAY cont.): Finally, Things Start Looking Up
Today was full of surprises. My stay here so far has been absolutely horrible, painful and terrifying. I was lonely and scared. I moved to Oregon from Illinois with nothing but my dog and whatever would fit in my Saturn Ion at the time. When coming here, I knew that I was going to be alone, but I also have never been really sick before. I’ve never spent time in a hospital so I didn’t know the feeling of lonely you get from being there.
When I found out my mom was blessed with a gift to come out here, I was so thrilled. I hadn’t seen my mom in almost a year. She said she was going to be there around 3 pm. It felt like time was going so slow, even through the narcotic daze.
Her arrival was the highlight of this entire experience.
I truly believe that our time spent together in this hospital helped heal what was once a damaged relationship. We talked about some really deep things, and I learned more about my mom than I have yet in this lifetime. Everything has a blessing in disguise, and this was definitely it.
When my mom was there, she noticed how much pain I was in and how little it was being managed. Luckily, that night, I had my favorite nurse, Eli, and he was the best at explaining things, and getting me to calm down. She asked Eli that night if it was possible to have a chart showing when I get my medications.
Eli, being the cool dude that he is, made a chart of every medication I was on, and what times and how often I take them.
This medication chart became the saving grace of my pain management. Instead of waiting until I was in excruciating pain to ask for medications, I now had specific times to take them. From then on, my pain was managed in a smart and easy to follow manner. I didn’t have to cry first to get the medications given to me. Plus, this made my OCD very happy.
Thank you, Eli, for being the coolest, nicest and funniest nurse. I wish anyone who gets put on floor 8 gets the pleasure of having you as a nurse.
October 13, 2018 (SATURDAY): Pain Management Blessings
My mom said she noticed a huge difference in me, just from the one day of being in control of the pain medications. Writing down this schedule was the smartest thing we could do. I started setting alarms overnight and stopped missing my meds. This seriously made a world of a difference for my pain and overall feeling.
That would be my little piece of advice for someone who has to be in the hospital for a long period of time. Especially if you were on 7-10 medications like I was. The nurses sometimes have 10-12 patients at once they’re managing, they’re not going to remember that you need Dilaudid shots every three hours, or an Oxycodone every four.
I had Dr. Nelson at the time as my main doctor. He was the one who made the calls on what happens next with my stay here at the hospital.
Originally I had a woman doctor the first couple of days. I didn’t remember much of my first few days here, but she was saying the same thing as Dr. Nelson. “Don’t eat or drink anything until the pancreatitis calms down and the inflammation goes down. Then we can talk about surgery.”
Dr. Nelson suggested today that I move around a little. He said this would help with the constipation I was experiencing (Seriously the worst, and still not completely better.) I could still barely walk at the time, so we asked for recommendations. He suggested that my mom push me around the floor in a wheelchair.
So that’s what we did; We got a wheelchair, which was surprisingly comfortable to sit in even though it was hard plastic, and we wheeled around floor 8.
It was the first time I got to see the view from another area. They had two seating areas with large glass windows. One that overlooked the river and the hills I see from my room and the other side was a view of the front of the hospital. There was tons of trees of bright fall colors and a beautiful fountain. At night time, there were tons of “city” lights because the hospital is close to a main road in Springfield.
October 14, 2018 (SUNDAY): A Relaxing Day With Mom
Nothing super crazy and exciting happened today. My mom and I hung out, we wheeled around the floor a few times, and just talked. We pressed the nurse button when my meds were due, and even played cards and had a good laugh. It was a pretty relaxing day, as far as days in the hospital go.
October 15, 2018 (MONDAY): News That Made Me Cry
I’m feeling a little better today. I don’t know if it was all the rolling around, the milk of magnesia or the Miralax, but I pooped for the first time in days today. (TMI?!) Whatever, it was an awful experience, to be honest, and because I wasn’t eating anything I really didn’t have much to let out, but I was still so excited that it happened. I was feeling grateful of Dr. Nelson’s recommendation of cruising around.
Today, my roommate messages me and tells me that I have mail that looked pretty important.
She said she could drop off the mail later that evening after she gets off of work. The mail she drops off to me made me cry! It was my acceptance information from Medicaid in Oregon. I was officially on Trillium insurance. Since I had applied even before I had the gallstone attack and went to the ER, I was covered from the day that I applied.
For those who are wondering, Trillium is insurance you can get through the state if you are low income. My hospital stay, which ended up being 16 days long, would normally cost tens of thousands of dollars. I was even told that it could have been up to a hundred thousands and could bankrupt a normal human. Being accepted by Trillium, because I’m poor, means that my stay here is absolutely and completely free and paid for by the wonderful state of Oregon.
The financial side of my hospital stay was like a bee buzzing in the back of my brain at all times. I could try and swat it away, but it was always there.
I already have my own fair share of debt and financial struggles. The fact that I had to be in the hospital, not working, for over 2 weeks was weighing down on me like no other. How does anyone afford that? But now, I don’t have to worry about that. All I have to worry about it how I’m going to pay rent and my bills for the next month or so, and hoping that my job is going to wait for me. My mom tells me I have some angels of my own that are going to help me with rent and my bills this month.
Today was filled with many happy tears and many blessings. Thank you, Universe, for the abundance I receive daily. My life is full of love and the universe will always supply you with what you need. It might not come to you as you’d expect, and it might not be in the way you want it, but it will be what you need at the time. Karma is real, guys.
October 16, 2018 (TUESDAY): A Day Filled With Anxiety
So today I was filled to the brim with anxiety. I got a new doctor again. No more Dr. Nelson. Now I have Dr. Gunasekara. The two doctors have two very opposing ideas of what should happen with my stay here. Dr. Nelson’s plan was that I don’t eat or drink anything because starting the digestive tract could cause the pancreatitis to get worse. So I had that engraved into my brain.
This new doctor is calling for me to start eating solids in the next couple of days.
This made me anxious immediately. In response, I actually had a full blown panic attack the minute he told me. I started hyperventilating and crying. I was shaking and rocking back and forth. He told me he wanted to start me on liquids immediately. He told me that usually pancreatitis should start getting better after 5-7 days, and because we were going on day 10 without any luck of it getting better, then we needed to change the game plan.
I didn’t like this new plan. I was still so scared to try to eat anything. After he left, I just couldn’t shake the anxiety, so the nurse gave me some Klonopin. (This was my new anxiety med since I told them I would no longer take the Ativan.)
After I calmed down a bit, my mom suggested we go for a cruise. I obliged to her offer as I drank my first cup of hot peppermint tea in ten days.
We cruise around the floor and what I consider a full-on sign from the universe happens. I find a painted rock by our big windows we like to sit at. Here in Eugene, we have a community of rock painters (which I’m a part of and you can see some of my painted beauties HERE.). So people will paint rocks and hide them in public places. When you find a rock, you can keep it or rehide it. However, it is always greatly appreciated that if you find one, you put a picture of it on the Lane County Rocks Facebook Page. #LCR
This rock, in particular, was painted red with simple blue lettering that said: “Don’t Stop Believing.” It had little music notes drawn on around the letters and #LCR written on the back.
This rock find gave me hope. It let me know that everything was going to be okay, even if it seems like everything was starting to crumble. I posted this picture to the Lane County Rocks page and got so much love and well wishes. It turned my entire day around.
October 17, 2018 (WEDNESDAY): When I Thought I Couldn’t Be Shocked Anymore…
Today was a very eventful day! It was my first full day on “clears.” This just meant I was drinking liquids again. I think I drank 3 or 4 cups of black coffee this morning with my mom. I also drank more peppermint tea and tons of water. I’m not going to lie, it felt really good to drink liquids.
I had been on TPN for about a week now; just over. They wanted to weigh me today, which I thought was weird since they haven’t asked for my weight ever. I asked them for a scale my second day here (10/7/18). I wrote all about this and that my weight that day was 267 pounds. Not a shocking number because I’ve been stagnant here for about a year. What was shocking was the number on the scale this day. I was expecting my weight to go down because I wasn’t eating anything. Because I was sitting or laying down most of the day and not walking around, I really hadn’t noticed how much I was growing.
My weight on this day was 313 pounds.
I cried in the bathroom for 20-30 minutes. Honestly, I didn’t understand how that was possible. I wasn’t eating anything and I was barely drinking fluids. I was attached to their stupid TPN fluids. They told me it was common for people to gain weight with the TPN. I literally whipped my head at her and said: “It’s common for people to gain 46 fucking pounds?”
All of the work I put into losing the first 50 pounds was gone. I changed my life around 180 degrees and lost this weight for nothing now? Seriously, I was devastated; I just cried and cried, as I stared out of my window to the beautiful landscapes below. I couldn’t believe that this happened. Also, I could see the pity in everyone’s eyes which didn’t make me feel any better. This was probably my lowest point during my stay at the Riverbend Suites.
October 18, 2018 (THURSDAY): A Busy And Distracting Day
A lot of things happened today. Today was the first day they were going to have me try to eat solids. I was so nervous. Honestly, I wasn’t able to eat more than 3 or 4 bites of the vegan meal they gave me. I didn’t die, and it didn’t start up another gallbladder attack, or put my pancreas on the fritz. I was also impressed by the fact that this hospital had an ENTIRE vegan/vegetarian menu. Everything was labeled and whether it was gluten-free or not. I’m not gluten-free, but they had the option! Because of this, I was also taken off the TPN for good.
They also found out that my hemoglobin was down and decided I needed a blood transfusion that day!
Also, I pooped again! This time they had me excrete into a bucket that they collected a sample from. It was a very embarrassing and disgusting experience. Just trying to be transparent with you all.
They were waiting for me to go again because they wanted to test my stool. (sorry if this is too much for anyone. Might want to skip the next paragraph because I give details.)
Ever since I had my procedure done, it was pure black liquid, which they said was most likely blood. After the testing, they confirmed it was blood, and until last week (10/26/18) I am most certain that I was bleeding internally. They said if it was red, that would mean the bleeding is lower like the colon. Because it is black, that means it is happening somewhere near the start of the intestinal tract. They never came up with a definitive answer as to why I was bleeding internally, but at least I knew it was happening?
In order to find out completely as to why I was bleeding internally, they would have had to do an endoscopy. However, they said the risk would be too great because of my pancreatitis. They said they could do one after the pancreatitis calms down. Now that my poop is back to normal, I’m sure I’ll never know why I was bleeding internally. Hopefully, that didn’t cause any issues or infections I’ll have to deal with later.
My social worker came up to see me today.
She told me a bit about how Trillium works. I have a service available called ride source. Basically, this means that I can get a ride to and from appointments or anything medical related for free. That is super awesome since I’m not able to drive because of all of the meds I’m on. They also told me about different pharmacy options. I chose Hirons because they offer a delivery service. However, as you’ll find out in the next part, it isn’t that simple and I should have picked something closer to home. (Another tip for anyone dealing with hospital stuff. Choose a pharmacy close to home.)
It was honestly just a day full of new stuff. It was so busy and distracting from the fact that I had gained 46 pounds. When they weighed me today I was 312. I wasn’t thrilled with the one pound weight loss, but they said it was a good sign.
October 19, 2018 (Friday): A Day of Pain and Anxiety
Since the stool sample fiasco yesterday, I was in and out of the bathroom all day this day. Common to heavy narcotic use, I had bad diarrhea and it was awful and painful. I blame it on eating food, even though every meal was 5 bites or less.
I walked for the first time today, and even though I only walked down to the first big set of windows, I was proud of myself. Ultimately, I was weak and it hurt to even go that far, but I did it.
I also got a new doctor today. New doctor, new plan; New plans came with new anxieties.
This doctor, Dr. Anacious, cause an earthquake inside of me when she said her plan was to discharge me and have me rest on medications for up to 4 weeks. I, once again, had a full blown panic attack. I had just started eating 5 bites of food per meal and I could barely walk. This news scared me, and I didn’t understand how so much could change in such a short amount of time.
She told me that they couldn’t keep me there under their care forever. That I will be on bed rest until I am feeling better. Then I will get surgery. After surgery, the recovery time is very short and I’ll be back to normal in no time; So they say. She said she was thinking Sunday would be a good day. I was crying and having trouble breathing as she’s telling me this.
I’m thinking of having to be at home, alone. I wasn’t going to have anyone to help me do anything. My mom leaves tomorrow.
How was I going to get groceries? Or cook dinner? How was I going to do laundry? I was worried about how I was going to sleep! My bed is not on a frame and is just on the floor. It’s extremely low. My roommate said I could sleep on the sofa, but I’m still worried about having to get on and off of it. Thoughts like this swam through my mind for the rest of the evening.
October 20, 2018 (Saturday): Back To Being On My Own
My mom left this morning around 7 am. We woke up around 4 and drank way too much coffee. We took our last stroll around the wing, and I actually walked the whole thing all on my own; A small moment of pride. We said our goodbyes with tears on our faces and I was back to being on my own.
I was 304 pounds this morning.
While I was happy that nine pounds have come off, I was still depressed that I was over 300 pounds. Especially after “working so hard” to get under that number. When I stood on the scale in March of 2016 and saw the number 319, I cried for so long in disbelief. I knew that I wasn’t losing weight, but the last time I knew my weight I was at 285. With my depression at an ultimate low, I knew I had to make a change immediately. I told myself I would NEVER be 300 pounds again.
I went vegan that day. (Blog Coming Soon!)
Okay, back to the hospital where the universe was giving me a lesson to never say never. My weight gain happened because my body was holding on to excess fluids from the TPN. I was told that weight gain was normal. Due to gravity, a lot of the fluid was in my feet and my legs. My shoes didn’t fit me and I lost my ankles. The weirdest part was that you could push down on my legs or on my feet, and the indent would stay there for at least 10 whole seconds.
I was put on Lasix pills days ago to reduce the fluids. I hated these. They make you pee every three seconds for a couple of hours. The scheduled me an ultrasound on my legs because the fluids weren’t leaving my body as quickly as they’d hoped. They wanted to make sure I didn’t have any blocked arteries or anything.
The ultrasound came back clear, even though the experience of it was rather embarrassing. They had to put that jelly topped rolly-thing in uncomfortable places. The worst part was that he kind of had to fight layers of fat to get to said places. It was cringe-worthy. But at least with the results, I have “nothing to worry about.”
Steph and Mo came to visit me today. It was really nice having friends come to see me and take my mind off of things for a bit. We ended the night playing Dos and sharing some laughs.
October 21, 2018 (SUNDAY): Not Going Home Today
I woke up at 297 pounds. I lost seven whole pounds overnight. This gave me hope, and even though 297 is nothing to celebrate, I found myself smiling at the number. There’s no longer a three in front of two other numbers. Somehow this makes me happy.
I’ve gotten into the habit of waking up at 4 am and drinking black coffee until 6 or so. I would enjoy this time of the day as nothing medical is really happening. They come to take vitals around 6 and then after that is when everything else starts.
Today was my first day completely off the Dilaudid.
They had been slowly decreasing my dose every day to ween me off of it. I’m not going to lie, my pain did worsen, but at least it was manageable. Not even 10 days before this I was screaming and hurled over in pain, thinking I was going to die. I was still on the oxycodone, but it wasn’t as fast acting and noticeable as the Dilaudid. Yeah, it is definitely addictive. I’m happy they slowly weened me off of it.
The doctor told me I was going home tomorrow!
She said that Dr. Cruz (my psychiatrist at the hospital) was going to come to talk to me at some point to set up something for after the hospital. This was one of the main reasons I didn’t want to leave today (Sunday). Dr. Cruz was only here on weekdays, and we were scheduled to meet and talk tomorrow. I’m happy she listened to me about that and didn’t discharge me this day.
October 22, 2018 (Monday): My Last Day
Today was bittersweet. A part of me was ready to go home, and get out of the hospital. I wanted to cuddle with my dog and have more than three pajama outfits to choose from. The other part of me was scared shitless. (Literally, because I’m so constipated.)
How was I ever going to get through this on my own? I was still pressing the nurse button many times throughout the day to help me with things. I was getting used to the remote control, electronic bed. This bed allowed me to sleep at a comfortable incline, raise my feet above my heart to “drain them”, and raise or lower me when needed.
However great my anxieties were, the thought of going home made me happy and confident in my healing.
I sat around a lot of the day just waiting. Today I weighed in at 290 pounds and I was happy with another 7 pound weight loss overnight. Hopefully these increments continue.
I waited for the doctor until about 5 pm to come explain my discharge. Then I waited for the psychiatrist who said he was going to grab another psychiatrist who was going to explain my aftercare to me. They never returned. I was waiting for my social worker and my case manager to come to talk to me, which they never did. Ironically, I was waiting for the actual discharge which I guess I was allowed to leave as soon as I had the talk with my first doctor around 5, but I didn’t know that.
I ate dinner, and then I was told that I could fill out these papers for certain nurses, and they will receive some sort of recognition and get a pin. Then one of them might be chosen for “nurse of the month” or something. Of course, I had to fill those out. I ended up filling out 12 different recognition forms (I forget what they were actually called. I want to call it the daisy award, but I think that’s the one Eli made for CNA’s and nurses who haven’t received recognition yet. It had some flower associated with the name.)
Around 7:30 p.m. as I am filling out these forms, unaware that I could leave any time that I wanted, my nurse came in and sai: “Just so you know, the pharmacy’s don’t stay open that late. You can probably still make it to Walgreens if you leave now.”
I was taken aback by the fact that I was a free woman, and no one let me know until right now.
So I asked her when was I able to leave. She told me that she had the paperwork ready shortly after my meeting with the doctor. I was so confused and panicky. I was waiting for the social worker because she was supposed to call ride source and have them arrange a ride for me to go to the pharmacy and then take me home. That never happened, and I ended up paying almost $40 in Uber fares.
I was waiting for the case manager to come to talk to me about aftercare and what I should expect for healing. She was also going to give me some resources because she knew that I was going to be alone and would need help.
All in all, my discharge was a complete disaster.
I was in my Uber around 8 pm heading to Walgreens since they’re the only pharmacy that stays open until 10 pm. When I get there, the pharmacist tells me, “Just so you know, this could take up to two hours to fill.” I almost had a mental breakdown right there in Walgreens. I started crying. I had to tell my Uber driver to leave, which is why I had to order a second Uber, raising the price even higher.
It was honestly just a nightmare.
It only took them around 52 minutes to fill my prescriptions and I spent that time roaming the aisles of Walgreens. I was still on some pretty heavy doses of narcotics so I was buzzing a little while doing this. It was painful, but there was a man and his child near the pharmacy that smelled of pooped pants. The pain of walking was worth not having to smell that accident.
I got home around 9:15 pm and it took all that I had in me to bring all of my sleeping stuff into my living room. Immediately, I set up the couch (since it reclines) as my sleeping area for the night. I cuddled with my dog and drifted off.
To Be Continued…
Xoxo
Thank you so much for being here. Also, thank you to everyone who has been following along with this story. My next installation might be the last part of the pancreatitis series. It all depends on how the next couple of appointments go. Thank you, everyone, who has helped me heal in some way, even if it was a simple, “Hey, how are you feeling?” Those little moments made a whole difference in my day sometimes.
I also want to send a big thank you to some of the nurses of Floor 8 Medical in Riverbend Hospital of Springfield, Oregon. Eli, Sara, Pam, Katy, Diana, Liza, Lisa, Karen, Judi (who is not a nurse, but actually the housekeeper who befriended me and made it a point to come see how I was doing even if she didn’t have my room that day.), Savannah, Megan, and so many others. Thank you! Thank you for treating me with kindness and trying your best to keep me comfortable and happy. I wasn’t the easiest patient to deal with and even went head to head with a couple of them, but they were trying their hardest to heal me ethically. Thank you for your efforts and I really have learned to appreciate those who work in the healthcare industry a little more.