Hospital Readmission (Days 34-48)

It’s hard to believe that today is day 55 since transplant and it’s the middle/end of July, mainly because this whole month has been an utter blur. After my IVIG on June 27th, I went home pretty fatigued, but nothing out of the ordinary. I’m usually pretty tired after a 5-hour infusion so I thought I could just go home and sleep it off like I normally do, just this time without Ms. Maple snuggled with me. Unfortunately starting that night, I kept waking up every hour having to pee. It turned into pain with urination, frequency of urination, and eventually clots of blood with urination as the weekend continued. I also started having these intense hour long spasms that would occur 4-5 times a day where I would curl up in fetal position on the toilet crying. I didn’t sleep from Thursday to Monday. I was on the toilet so much that the skin behind my thighs eroded off. Sunday (6/30) was my 37th birthday so while it wasn’t the most exciting birthday, it definitely was a memorable one.

BK Virus

When I got to clinic on Monday (7/1), my team let me know that I most likely had something called BK virus. BK virus is a virus that is common in most people, and in healthy patients, causes no problems. Unfortunately for immune compromised patients, it can cause these uncomfortable urinary symptoms. For the most severe cases of BK virus, patients can bleed so much that the patient needs a blood transfusion, they may need a foley catheter, and something called continuous bladder irrigation to help flush things out. While I was not at this point, I was in extreme pain.

I felt like my team at this time did not think my symptoms were severe enough so they sent me home with fluids and said to just “wait it out” because there’s “nothing we can do for you.” Monday night was horrible as I spent the entire night on the toilet peeing and crying.

Hospital Readmission (July 2-July 16)

By Tuesday morning (7/2), I texted my team asking to come in, I begged them to be admitted to the hospital, and Gordon was advocating for a hospitalization by letting them know that my mom and him could not handle the pain and how often I was soiling myself at the apartment. I was disappointed because I feel like my team didn’t think I needed to be there even though I expressed that I hadn’t slept in 5 days, that I was in so much pain from hour long spasms that I was crying, and that I was eating lunch on the toilet because the longest I could hold my pee was 14 minutes.

I was re-admitted to the hospital on 7/2, and I am so glad I was because while there is no treatment for BK virus, there are a host of supportive care measures that could be done to make me feel more comfortable. However, the minute I got to admitted, my primary team made me feel like I had no reason to be there and already were talking about this being a short stay and that I’d be discharged pretty quickly. This gave me a ton of anxiety because what I felt symptomatically was not aligning with what I felt like were realistic expectations for discharge. The nice thing though was that all the nurses believed me, because they would be the ones in my room seeing me spasm for an hour and a half while they were giving me pain medication. 

Over the next several days, (again, a big blur), I was able to get these measures to make me feel more comfortable:

• IV fluids: I was started on 4-5L of IV fluids. I was also drinking 3-4L of oral fluids myself. Counterintuitively, the more fluids I was consuming, the more I was urinating a steady stream of urine. If I wasn’t as hydrated, it would be extremely painful because I would be urinating clots of blood. Staying hyper hydrated was also important for just general flushing all the things out.
• Fentanyl PCA: I was put on a continuous pain pump that would allow me to push a button every time I had pain. They put me on a basal rate of pain medications, meaning something continuous that was dripping into me constantly, plus a bolus amount that I could push a button for every 15 minutes. If I was in a ton of pain, I could ask for a clinician activated bolus (CAB), where the nurse would come in and authorize an extra dose of pain medication. I used the CAB a lot, almost every time I was able to get it.
• Oxybutynin: I was also given an anti-spasmodic medication that helped with the spasms.
• Diazepam: I was also given an anti-anxiety medication that also helped to relax some of my muscles.
• Purewick: this was probably the biggest lifesaver that allowed me to get some rest. A Purewick is a device that looks like a giant tampon that you put over your underwear and it’s hooked up to a suctioning device. Instead of having to get up to pee every two minutes, I could pee while lying in bed and the urine could be suctioned into a carton. Because I could also lie down in bed, it helped let the skin behind my thighs heal.

Over the course of the hospital stay, I got higher doses of pain medications and diazepam. I was still waking up every hour for the first several days, but later during the week, I would be able to sleep for a few hours at a time.

I did also have two episodes of intense chest pain during my hospital admission. They did an EKG but it all looked normal. The two episodes of chest pain lasted for about an hour each and felt like someone was pressing on my chest. My heart rate went really high, my breathing increased, and the chest pain lasted for about an hour to an hour and a half, but eventually resolved when I fell asleep.

Hospital Discharge (July 16)

I was finally discharged from the hospital on 7/16. Things weren’t fully resolved, but I was able to wean off of IV pain medications and felt that I could manage a lot of my symptoms at home. I’m still having a lot of incontinence and wearing a diaper and having a hard time sleeping. Plus I’m still having menopausal symptoms from chemotherapy killing my ovaries. But luckily, adult diapers are awesome and I have chucks lining my bed in case it leaks.

They also sent me home with an at-home Purewick. The machine is incredibly loud, but I was able to use it the first two nights in case I had an accident. It wasn’t working very well, but luckily, I’ve been able to hold my urine better at this point.

I’m still on a lot of oral pain medications (oxycodone ER 10 mg in the morning and 20 mg at night, with oxycodone IR 5-10mg throughout the day), and it’s helping me stay comfortable, but one of the downsides opiates is opiate induced itching. Unfortunately, I’ve scraped off all the skin on my legs from scratching unconsciously while I sleep. We’ve taped up my legs and I’m wearing socks as mittens on my hands when I sleep, but I usually remove them at some point during the night.

The Art of Medicine vs. The Science of Medicine

Emotionally, this has been a really challenging hospital admission. The tension with my primary BMT team was really highlighted this admission because I felt like from the very beginning, I wasn’t being heard. I was made to feel like I had no reason to be in the hospital. I was made to feel like my symptoms weren’t that bad. It didn’t feel great to hear comments like “there’s nothing that can be done for BK virus” or “you just have to wait for it to pass” when the lived experience is no sleep for 5 days and eroded skin on the back of your thighs from sitting on the toilet for so long. I even expressed that my symptoms felt worse than the mucositis that I experienced when I was in the hospital the first time, when they told me that I had a severe case of mucositis. I was even told by the pain team during my mucositis experience that I needed to press the PCA pump more, that I wasn’t using it enough even though they knew how much pain I was in. So when I was expressing that this BK pain was worse, I’m not sure why I wasn’t being heard.

I think it was also interesting what the physicians focus on. They would keep reminding me that my “numbers” looked great, which I know are so important when looking at graft success, but it felt really kind of silly to highlight that while I was withering in pain. It felt like such a huge disconnect.

The first day I was admitted, when the NP said I’d be in and out of the hospital in a day or so, Gordon started speaking on my behalf because I was clearly in a lot of pain and unable to speak for myself, the NP put up her hand and silenced him while he was speaking.

Another time, when I finally got some sleep for three hours one night, I asked the pain team on rounds the next day if we could keep the pain regimen the same for one more day so I could get another “good” night’s rest. The pain team agreed. However, the pain team is only a consulting service, so the final decisions are still always made by the primary BMT team. When the primary team came to round, the NP told me “no,” that we would be transitioning the pain regimen to an oral regimen instead, which is another way of saying we’re trying to discharge you as quickly as possible because you can go home on oral pain meds but you cannot go home on an IV pain pump. I was completely stunned when she responded with an adamant no, because I felt like my patient autonomy was completely violated. I felt like I wasn’t given a choice or a voice and the situation turned very tense and affected my emotional state for the entirety of my hospital admission. The next day, when they rounded and I clearly had a bad night and was sobbing (and there were nursing notes to verify the bad night), they were then more amenable to listening.

My mother even advocated that day and asked that singular changes be made at one time so we can accurately track what is helping vs changing multiple variables at one time and not knowing what change is the cause. They simply ignored her suggestion.

I think this whole situation just mirrors a lot of other people’s healthcare experiences where physicians dismiss how you actually feel because you’re young and you can’t possibly have some serious issue or you look “fine.” I am so thankful that my mom and my brother were HUGE advocates for me during this admission, because to be honest, there were moments where I could not advocate for myself. Yet, even when my mom and brother were advocating for me, the team seemed to dismiss their concerns.
My brother, a physician, my mom, a retired nurse, and me, a pharmacist, three healthcare professionals, trying to seek care but were still getting our symptoms dismissed. It makes me sad because if we can’t navigate this, how can other people?

Clinic Follow Up (July 18)

I went back to clinic on Thursday (7/18), and unfortunately had another episode of chest pain when I arrived. They immediately did a EKG again, and luckily showed nothing important. Because this is the third episode of chest pain I’ve had, they plan to get an ECHO and CT of my chest in the coming weeks.

I also had to do something called a fibroscan, which is a scan of your liver. My liver panel tests have been higher than normal, and the fibroscan provides additional information on the health of the liver. The fibroscan was a little bit abnormal but not so wildly abnormal that it was very concerning. Unfortunately, we’re not quite sure why my liver function tests are high. They have come down a little, but definitely not in the range of normal yet. The increase in liver numbers could be due to infection, medications, or GvHD. We’re not sure which one it is right now, but time and additional tests will help elucidate what’s going on. But in the meantime, we are also slowing down the steroid taper and waiting to see if things will normalize. We are also restarting a drug called ursodiol which I had stopped around day 30 previously. If things don’t and the numbers keep going up, I’ll have to do a liver biopsy to confirm the GvHD.

Clinic Follow Up (July 22)

I did start to wean my pain medications over the weekend (7/20 and 7/21) but I don’t think I did it slowly enough because I felt terrible. Opiate withdrawal comes with symptoms of cold, flu-like symptoms, fatigue, nausea, diarrhea, so when I went to clinic yesterday (7/22), I was incredibly fatigued, had a runny nose, and just felt incredibly run down. They did do another nasal swab because COVID cases have been very high, and it did come back again for rhinovirus, but it could be from my original rhinovirus back in June.

Work

Adding fuel to the fire, on Friday before I was discharged (7/12), I received a call from PARS, the company that manages all of J&J’s company cars. They called to ask for the company car back, and when I told them I was in the hospital, physically not in the state of Washington, and would not be returning until September, they responded with “well is there a friend that could help you return the car to us?” I told them they needed to table this discussions because it was incredibly insensitive to ask when I’ve already disclosed that I’m in the hospital.

I also had a follow up call the next day after discharge (7/17) with employee health at J&J. I’ve been working with this woman to help figure out how to get ADA accommodations for when I return to work and what happens when I go on long term disability. It turns out there was a meeting with legal, HR, my boss, and it was decided that they would backfill my position due to business need at this time. Promptly on Friday (7/19), a one sentence email was sent out by my boss that my job was posted. I’m not sure what the rules are for employees on leave, but this whole situation has left a really negative taste in my mouth. I’ve heard you’re not allowed to reach out, but I think there is still a way to be a kind human and show that you care without breaking policy.

You hear about those situations where someone dies, their cubicle is cleared the next day, and a new person starts the next week. It really felt just like that. Just a reminder that work doesn’t care about you.

A small handful of coworkers have been wonderful so to those of you who have been on this journey with me, cheering me on, thank you.

All the Feelings

Overall, I’m struggling a lot right now. The second hospitalization felt worse than the first. I think getting struck when you’re already down makes getting back up just that much harder. After getting out the first time, I’d go to the gym everyday and walk on the treadmill for 25 minutes. Since getting out, I haven’t been able to go on walks. I’ve been bed ridden many days, and it’s taken a big toll on my mental health. I told Gordon today that I felt like the first hospitalization I got into a really good groove. It would be busy during the day with people coming in and out, and then when my family would leave after dinner around 6PM, I would get ready for bed and FaceTime friends or my family and that would bring me joy and get me through the hard stuff. But with this second hospitalization, I was in so much pain that I would be knocked out on medications that I wasn’t able to talk to anyone.

Today (7/23) is the first time I’ve logged onto my computer in weeks. I can barely respond to text messages. There’s a list of things I need to do – call J&J benefits and figure out what it means to be an inactive employee (because no one has told me anything), follow up with my boss, make doctor appointments in Seattle for September – but the sheer energy to do all of these things are exhausting and I simply can’t do any of it.

Since being back home, I eat breakfast, I go lie down, I eat lunch, I go lie down, I eat dinner, I go lie down. Rinse and repeat. I don’t actually even want to get up and eat. I’m having a lot of nausea still and nothing excites my appetite, but I know I need to eat so my family is force feeding me. It’s really hard to see the light at the end of the tunnel right now.

I think this second hospitalization has also been really hard on my family. My mom stayed overnight in the hospital the first two weeks I was there and then Gordon stayed the last 5 nights. It’s been incredibly taxing on everyone emotionally, mentally, physically. The guilt that I feel for having my family here for 4.5 months is indescribable, and I know we’re not even close to being near the “end” of this. I just want things to go back to normal.

I go back to clinic a several more times this week – ultrasound of my liver tomorrow (7/24), blood draw and clinic visit (7/25) and CT scan of my abdomen/chest (7/26). If it weren’t for these appointments, I don’t think I’d leave the apartment, so it’s good that I am forced to leave. 

Here’s to hoping my liver stuff is just a random blip, my diarrhea resolves, and my chest pain is just from anxiety.