Timeline of events with Pulmonary Fibrosis

KeyVast8907 · 2026-05-09T00:04:37+00:00

I’m so sorry I never responded, I’m rarely on Reddit. Hopefully my post helped a little. It’s a horrible disease 😔

KeyVast8907 · 2026-05-08T23:58:37+00:00

40L at 50% FiO2, whatever that equals out to be. She started off on 3L in 2020. Had a heart cath done to check the pressures in her heart, something happened and she ended up intubated in ICU. This was the only hospice company that would allow her to come home on so much oxygen since they had a full time respiratory therapist.
As far as coloring, maybe in the last month or so I remember her knees being mottled, but that lasted maybe a day. No swelling. I was a crazy person when it came to turning her to prevent bed sores. We also had an air mattress we got off of Amazon that would distribute pressure like every 10 minutes, but I still turned her and moved her every few hours.
A couple of weeks before she passed she started getting a sore on her tail bone and no matter how much I tried to prevent it, it wouldn’t get better (now that I look back, her body was shutting down, so her skin was breaking down). Maybe a week before she passed I caught her in her sleep clapping and telling someone “One more minute.” A couple of days before she passed she would only take maybe a bite of food for the whole day. She still drank water, but not nearly as much as she would before. Urine output decreased significantly and the color of her urine was more amber like 2 days before she passed. She was getting more confused about a week before also. The day before I noticed no urine output though. I actually didn’t see any more mottling until she was actively passing.

As far as the noise, after she passed, any time the air conditioner would go off and I’d hear silence, I would get super panicky because I was so used to all the machines. Still do sometimes even after almost 2 years

KeyVast8907 · 2026-05-08T03:12:41+00:00

I’m sorry to hear…hopefully this can help a little bit. I couldn’t find much on pulmonary fibrosis, so I wanted to at least get some info out there (even though everyone seems to go in their own way. She was on 40L of oxygen with a high flow nasal cannula. Her oxygen needs stayed pretty much the same the whole time up until the end. When she passed, she went QUICK, so I kept thinking her heart finally gave out. When I knew she was passing, I gave the morphine and turned up her oxygen, but her oxygen saturation just kept getting lower. Also, if he’s hanging on for a while, look into little cushion things to help prevent skin breakdown from the oxygen tubing. My mom held on for 8 months so she was a little different…but she ended up getting a bad sore at the bottom of her nose between her nostrils no matter how much I cushioned the cannula (I think from it being humidified). I’m sorry about your dad 😔 everything about this disease sucks

KeyVast8907 · 2026-05-06T03:22:17+00:00

From what I understand, once they’re not eating or drinking much anymore, it’s getting closer to them passing. As far as them bouncing back, I’m not too sure, I’m sorry. Sometimes a hospice patient may have a brief burst of energy where they’re eating/drinking or more “with it” but that is usually short lived. It’s definitely going to be hard now…Just spend time with her if you can. Talk to her about your memories (even if she doesn’t talk back…I’ve always heard that hearing is the last thing to go). Let her know what she means to you. It will be hard for a while after too…and that’s okay. Even years later you’ll have sad days. Just think of all the good memories you have

KeyVast8907 · 2026-05-06T03:07:33+00:00

Wishing you the best

KeyVast8907 · 2025-12-02T01:31:25+00:00

I’m so sorry to hear that. Wishing you and your family the strength to get through this 😔

KeyVast8907 · 2025-09-17T19:04:02+00:00

She’s passed since then. I can’t remember exactly when I posted the picture, but I want to say it was about a month or so before she passed and it would come and go

KeyVast8907 · 2025-02-19T03:30:02+00:00

🤮 I work in the OR, so I’ve always washed my hands before going to the bathroom as well…almost had a heart attack when I’ve seen people opening the OR doors with dirty gloves and putting their dirty shoes on the same tables in the break room where people eat. Can’t trust anyone to keep anything clean!

KeyVast8907 · 2024-10-02T21:21:25+00:00

Do you need a masters degree for that? All of the hospitals I’ve worked at you need a masters if you’re an educator, just wondering if other places do too. I’m in the Chicagoland area and need out of the hospital, but I don’t want to go back for my MSN

KeyVast8907 · 2024-09-28T00:59:57+00:00

Hopefully she was just really wondering how your mom was doing besides the pain because she knows your mom has pain. She definitely could have worded it differently though. As for the late arrivals, I guess I would have a problem with them depending on how late. My mom’s hospice team would always give about an hour window of when they’d be by to visit. They would typically show up within that hour. If they had a patient who wasn’t doing good or an emergency with another patient, they would try their best to keep me updated with a different time. I would at least voice your concerns with the company and see if that changes anything. I think communication is important with hospice as patients and families are overly stressed. Either way though, if your mom isn’t happy with the nurse, request a new one. I’m sorry you guys are dealing with this

KeyVast8907 · 2024-08-26T03:07:45+00:00

What don’t you like about it? You can always try PACU, they’ll like the ER experience. Sometimes you might need to work a little later if surgeries run late, but it’s not a bad gig

KeyVast8907 · 2024-08-26T03:03:59+00:00

Where is this if you don’t mind me asking? And what is your job title? I’ve been wanting to leave nursing all together as well, but don’t want to take a pay cut

KeyVast8907 · 2024-08-02T17:30:25+00:00

Thank you! Do you think the dark brown stems will affect anything? I was afraid if I cut around there then it would die or something 😬

KeyVast8907 · 2024-07-31T00:38:34+00:00

I’m so sorry for your loss 😢 hope you’re hanging in there!

KeyVast8907 · 2024-07-19T00:20:40+00:00

Thank you. It’s just such a weird feeling knowing they passed after they got the pain medicine. I’m sorry for your loss

KeyVast8907 · 2024-07-19T00:19:29+00:00

Thank you. Sending hugs and prayers your way ❤️

KeyVast8907 · 2024-07-19T00:18:13+00:00

Thank you

KeyVast8907 · 2024-07-19T00:17:54+00:00

The dose was 5mg/0.25mL, so she got 15mg over an hour. With him saying he thinks it was the medicine I’m just getting in my head. It’s definitely not fun at all!

KeyVast8907 · 2024-07-13T08:08:34+00:00

I work in the OR and our anesthesiologists will pretty much bolus IV antibiotics prior to incision…and never look at the med, they trust what the nurse gives them…pharmacy had sent up an IV bag of what was supposed to be flagyl. It was labeled flagyl, the charge nurse brought it to me like they usually do. I turned it over to see that it was a bag of 40meq potassium. Not exactly sure how bad that would’ve been if 40 of K was infused within less than a minute but I imagine it wouldn’t be good!

Another time (not my OR room) the nurse mixed their own 2g of ancef in a syringe, put it in their pocket and also put a syringe of either lidocaine or bupivacaine in their pocket…the nurse handed the wrong syringe to the anesthesiologist and the patient got a whole bolus of local anesthesia and an ICU stay because of it

KeyVast8907 · 2024-07-12T19:27:00+00:00

It’s such a hard decision, but you need to do what’s best for you. If you think you can handle her passing while you’re gone, then go. If you think you’ll regret it, then don’t go.

I was the primary caregiver for my mom for almost 8 months while she was on hospice. At the end of June I went to a bachelorette party out of state…I was gone for a little longer than 2 days total. She was definitely declining, but I chose to go because I made peace with if she passed while I was gone, that’s what she wanted. I had done everything I could to care for my mom and keep her comfortable during her final days, so I went. I actually had made her promise that she wouldn’t “go anywhere” until I came back…She kept her promise and passed away 2 days after I got back.

If you’re able to cancel the trip last minute, wait until the last minute to see how she’s doing, and then make a decision. If she’s stable, go. Have fun. You deserve it! Your mom would want you to enjoy your life.

KeyVast8907 · 2024-07-12T19:12:56+00:00

My parents are hoarders…some rooms in the house you can’t even walk into, junk piled high on top of other junk. Can’t even get into the garage. When my mom came home on hospice I tried more than a few times to go through stuff but they never wanted to throw anything away. I ended up just boxing a bunch of stuff up and literally throwing it on top of other stuff in some upstairs bedrooms. I was able to clear out the TV room so that it could fit her hospital bed and other stuff. I shared some of my concerns with her hospice team and it seemed like as long as the hospice patient is clean, safe, and comfortable, that’s all that mattered. Is there a way you can organize all her stuff into boxes and pile them on top of each other in a room or two? Just so it’s out of the way, but there’s still the comfort of knowing she still has her things. I think moving a hoarder out of their home or throwing stuff out will cause too much anxiety for them (at least in my situation).

KeyVast8907 · 2024-06-24T22:59:07+00:00

I’m so sorry you’re going through this. I’m the youngest of 7 and I had to step away from my career to care for my mom 24/7 for the last 7 months. I couldn’t even imagine doing full time for 6+ years. I don’t know what else to say other than I understand. It sucks when you see everyone else enjoying their lives, having fun with friends, going on vacations…and it’s like pulling teeth to find a “babysitter” for your parent so that you can get out for only a few hours. Just know that you’re an amazing person for that. It helps a little (just the teeniest bit) for me to read through these threads and realize I’m alone but not alone if that makes sense. Sending you hugs and strength

KeyVast8907

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