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PBC Foundation
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Mother may have PBC & I’m scared + I need advice on her situation

Hi I’m new here but I’m hoping to get some help & learn about PBC.

My story begins with my mother being extremely fatigued to the point where she’s been bed ridden for the past month. November 4th my mother came home from work & threw up the entire night. From that point on I noticed she would do nothing except lay in the bed barely moving & not eating. I would try to ask if she was ok but my mother is the type of person where if she doesn’t feel ok then she’ll lie about it & say nothing is wrong. She tried to say she thought she had food poisoning.

After 2 weeks she went to see her doctor because she had sharp excruciating pains in her right upper quadrant that would circulate to her back as well along with jaundice. Her doctor thought she had gallstones so her set up an ultrasound appointment for the next day. The next day comes, but my mother’s condition was worsening so I took her to the ER, where we found out she had a blood clot in her Superior Mesenteric Vein, her bilirubin level was 10.3(normally should be 1.0), & pancreatitis. On 11/16, the same night we came to the ER, she was admitted to the hospital for the next 4 days.

During the hospital stay blood work was done for numerous tests like CBC & everything was coming back normal which were leaving the doctors confused on why my mother developed a blood clot in that specific vein. The surgeon saw no reason to operate so they started her on blood thinners & released her from the hospital.

Now we’re back home and her condition isn’t really improving & idk what to do. We had a follow up appointment with her doctor on 11/28 where he told her he would refer her to a liver specialist bc he is suspecting that she may have PBC or another liver related disease. The appointment for the liver specialist is 12/18 & honestly I’m freaking out because I feel that is too long to wait. I watch my mother everyday & I’ve noticed the following things; always sleeping, no energy, gets winded from the smallest of tasks, won’t eat because of no appetite, barely drinks liquids, swollen abdomen & ankles, dark reddish bags under eyes along with slight yellow tint of her eyes, shaking of her hands.

I really feel like she needs to go back to the hospital but she doesn’t want to go & I cannot physically force her into my car & take her there. I’ve thought about calling an ambulance but from my understanding, they can’t take a person who doesn’t want to go the hospital right? I’m just really scared because I don’t want anything bad to happen & I feel like this is my responsibility to make sure of this, but between her & the doctors, nobody seems to be taking this as seriously as they should.

11 Replies
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I’m sorry your having to go thru this! Not knowing is the worst and watching someone you love suffer is awful! Call the specialist and see if there are any cancellations, see if they have a list you can go on for cancellations.

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Yes...maybe ask her Primary doctor to see if they can pull strings to get her to a specialist sooner. It sounds serious. You are doing the right thing, being concerned.

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If you explain the circumstances, maybe they can squeeze her in.

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I called but it’s late & the receptionist just said they open back on Monday. I’m contemplating on calling an ambulance. My mother won’t comply with me that maybe we should go back to the hospital, so I don’t know what else to do but I cannot sit around & watch her continue to deteriorate like how I’ve been doing!

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Call the ambulance. You have to do what you feel best.

Maybe they can get a Hepatologist to look at her.

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Thank you for the advice. I tried calling the receptionist right now. I know 6 pm in the evening is typically after office hours but I thought I’d at least try to call anyway. The receptionist was so rude! She cut me off midway of me telling her my situation & said the office is closed & they’ll be back open on Monday & hung up right in my face. I’m so frustrated & I really don’t know what to do at this point but cry. I want to call an ambulance but I’m not even sure if that scenario will work out in my favor. My mother literally has not eaten or drank anything today. She’s been laying on the couch sprawled out looking like a zombie. I know she’s worsening because earlier she sat up like she wanted to get up & move but she ended up just laying back down.

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Hi Kaidozier

I see it is 10 hours since your last post so things may have already changed however if Mum is still at home can I ask - does your primary care doctor have an emergency weekend cover doctor? If so call that number and get the emergency home cover doctor to come out.

If she continues not to drink try to wet a clean sponge to dribble water into her mouth or if you have a baby feed water bottle in the UK Tommy Tippee is a favourite then try to get her to take some sips. Dehydration may just be what puts her in hospital whether she likes it or not via the ambulance but it is not great to get to that situation.

Come back to us and let us know how you are getting on.

best wishes

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Ok well here’s an update of what happened since I last post. I’m not sure how this app fully works but I’m wondering if you can tag ppl in a reply because I want to include nycgirl2012 in this reply as well.

I would like to start off by saying I’m in the US. Last night I called 911. Ambulance came, my mother woke up when she heard me answering the door for them. The EMTs came in she sat up & was responding to them & acting like I was crazy for calling an ambulance. They asked her questions to make sure she was aware of what was going on & she answered, they took her vitals, blood pressure was 140/60, blood sugar was a little low. They asked her what’s been going on, she told them about having a blood clot & being on the blood thinner Xarelto which she attributes to her drowsiness. She took the pill with some vitamin water right there in front of them.

My mother does this thing where she always downplays how she’s really doing or feeling or she’ll blatantly lie to make a situation not seem like how bad it really is. She lied & told them she was awake earlier talking to me about various things(this was a lie, her eyes popped open, she asked me a quick question about something I said I was doing 2 days ago that had already been done & she went back to rest). The EMTs said they cannot physically take her anywhere because she was coherent enough to decide if she wanted to go. So they had her sign a form & left. After that my mother & I started arguing because she was angry I called 911. She asked me to make her half a tuna fish sandwich. I did, & I watched her struggle to eat it. There seemed to be some type of distress while she tried to eat it. I heard her let out this moan that seemed like something was hurting her & she kept rubbing her forehead.

The hardest thing about all of this is that she is never upfront & honest about what is going on with her & when I try to observe her she gets mad & curses me out for staring at her. Today I’ve noticed her acting like how she was acting the day we went to the ER. She’s breathing like something is hurting her. I tried to ask what’s going on & I got cursed out & she told me to leave her alone. I have the number to her primary care physician, but I don’t know what calling him will do at this point. He’s just like everyone else, doesn’t seem to think there’s a sense of urgency about this situation. He’d probably tell me to call the ambulance, but then the EMTs will come & we’re gonna have a repeat of last night.

(I just re-read your post & saw your question about an emergency care weekend doctor. I have never heard of that but should I call her primary care physician I will make sure to ask, or hell even see if it’s possible for the primary care physician to come over)

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Hi Kaidozier

From your post it would seem that you have done everything that you can just now. The only other course of action would be to sit quietly with your mother and without raising voices tell her how frightened you are for her well being, or if such a talk will only cause confrontation write her a note tell her how worried you are for her - no accusations just leave the ball in her court.

In the background, be there for her which I am sure you will, make sure she has fresh water beside her. Maybe contact her doctor tomorrow and see if he can talk to you.

best wishes

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Hi kaidozier

Not sure where you live, but in the UK we can call the nhs helpline, who will advise you to take your mum to hospital if they think your mum's symptoms need urgent attention, which from what you've described , seems like she might. Might persuade your mum.

Best wishes, and hope your mum improves soon.

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Sorry your mom is so stubborn. You did what you could & just see if you can get the specialist to see her sooner.

In NYC, doctors usually don't have office hours on weekends or make house calls unless you pay for concierge services then they are always there for you 24/7. Otherwise, You either go to ER or urgent care clinics.

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