Mad and alone

[jeannea]

So I most likely caught a bad virus last week. I had terrible vomiting and diarrhea and couldn't stop. So I went to my local smaller hospital. I thought I could get some meds, get it under control, and go home. Well that was wrong. When they wanted to do paracentesis and drain my ascites, I said I wanted to be transferred to my transplant hospital. Just under 24 hrs after the first symptoms, I was there.

This has been a frustrating stay. After my second IV, they couldn't get one in. They tried around 15 times, maybe more, even sending in an anesthesia resident. I think I now know what it feels like to cut my wrists. It hurts badly to try an IV there. Finally, I got a central line. That has helped. I also had the ascites drained over 2 days. Surgeon put in a drain and attached it to a Foley bag. The nurse drained some every 4 hours then tried to replace Albumin through my tiny IV. I wasn't able to get potassium or magnesium until I got the central line. Total drained about 14 liters although some of that came from added IV fluids.

Had a visit from hepatology. They still don't know why I have ascites so they want to start over. Blood tests, echo, liver biopsy, upper endoscopy, colonoscopy. I talked with them and after discussion agreed to it. So tonight I'm prepping for scopes.

I am on an intermediate care unit, one step down from ICU. To be honest, the nursing has been less than impressive. They are kind but not very bright and certainly not very responsive. Nurse came in tonight and told me she had to turn my bed alarm on. I declined. Been here 3 nights and it's the first time anyone brought it up. I'm prepping for colonoscopy. I want to poop in private and not in the bed. I said politely that I would sign something but I was declining. The charge nurse came in and said that's not an option. No one ever objected before and there is nothing to sign. I told her that it's infantilizing and I don't understand having my rights taken away. I have the right to refuse treatment and die but not to refuse this. She's all into the management speak. She'll just tell the doctor that I don't like being kept safe. She's very sorry I want to call the patient care line. And I must be having problems because I don't remember a conversation she had with me last night. At about 2am while I was on dilaudid. She didn't mention the bed alarm though because I didn't ask. No dilaudid today so I was talking. My sister had been here earlier and she went to her hotel so I called her. She thinks it's no big deal. My nurse has given me multiple speeches about how it doesn't matter because it's a lot worse in China where she came from. Like that has any relevance at this moment.

I feel so alone like I'm not being taken seriously. This afternoon I was left all alone to take a spongebath standing at the sink. Now I can't go to the bathroom without help. This matters to me. I am sick of being sick and I think I should have some control. Apparently I have none. I am angry that I am treated exactly the same as the senile old man down the hall who has to be told all day where he is. You all here might agree with my sister to suck it up but it helps calm me a little to write it all down.

[cassandra]

Oh jeannea how awful. I hope you've been able to contact that patient care line, cos I wouldn't suck it up either. (You've sucked up enough by now I'd say)
Lots of luck, and strength with all the tests and your results.

Love, Cas

[SooMK]

I hope your sister can come back to help you with this. The hospital is no place to be without an advocate. You have to wonder if the nurses/admins wait until your family is gone to bring these things up. There's so much lack of privacy, much of it necessary in a hospital, it would be helpful to have some flexibility when they can. I hope you are able to do this your way and I'm so sorry to hear you have this struggle going on. Hope you get some answers soon.

[MooseMom]

Patient care lines exist for a reason, and boy, do YOU have good reason to use it.

The hospital's nursing staff just sucks.  They obviously care more about their control over you than about your control over yourself.

I hope posting about this makes you feel better.  I am so sorry all of this has happened to you.  I hope you are able to come away with all of this with answers AND relief.

Please do keep us posted about what is going on.  Do you have any idea how long you will have to be at Sucky Hospital?

[skinnacat]

i am so sorry that ur having so much trouble and not feeling well. but i wanted to tell you i was
talking to another person that had the swelling in their abdomen and she had all these tests done just
to find out she had something wrong with her heart and she had huge swelling...she was also a kidney transplant
patient
so i guess its something maybe u can mention to ur doctor and see what he thinks but heart problems and kidney failure
go hand and hand and i sure hope u start to feel better soon.

[jeannea]

They are retesting everything. Echo, liver biopsy, upper endoscopy, flex sig. So far my heart is fine. They were supposed to do scopes yesterday but didn't fit me in. Maybe today. Maybe liver biopsy today. Maybe not. Then probably exploratory surgery to get biopsy samples of my peritoneum.

In good news I should go to a regular floor soon instead of intermediate care. I think I should have less restrictions there. I finally got some great nurses yesterday and last night. That helps.

I have no confidence that doing all the same tests over will show anything. I probably have to start figuring out where to get a second opinion. I am at a teaching hospital but I have to choose another one.

[MooseMom]

Jeannea, in your first post, you told us that you and the doctors discussed redoing all of these tests; did they say anything that has now made you think this would be an exercise in futility?  Are they now going to be looking for something specific they they didn't look for the first time?  What did they tell you yesterday?

I'm so relieved to hear that you now have much better nurses.  There are few things more frustrating than poor nursing that makes you feel like a child.

Update:  I've just gone back and reread all of your "Ascites" thread, and it seems they never did find out what is causing them in the first place.  Is that right, or have I missed something?

[kristina]

Jeannea, in your first post, you told us that you and the doctors discussed redoing all of these tests; did they say anything that has now made you think this would be an exercise in futility?  Are they now going to be looking for something specific they they didn't look for the first time?  What did they tell you yesterday?

I'm so relieved to hear that you now have much better nurses.  There are few things more frustrating than poor nursing that makes you feel like a child.

Update:  I've just gone back and reread all of your "Ascites" thread, and it seems they never did find out what is causing them in the first place.  Is that right, or have I missed something?

Like MooseMom I was wondering about the same question ...  please tell us more about it, jeannea ...
Best wishes from Kristina.

[Deanne]

Are they doing the tests today? It sounds like pure torture. I hope they finally come up with answers.

[jeannea]

I had the two scopes and the liver biopsy today. I am totally wiped out. Half dead.

They still have absolutely no idea why I have ascites. None. They say they have to start over. I think I will still have no answers.

[Jean]

Just come here and vent when you need to, do NOT murder any nurses or Drs. We dont want to see you go to jail.

[kristina]

... Hello jeannea,
... At least they have started to re-think about everything again
ans hopefully they have the medical explanations and answers soon...
Good luck wishes from Kristina.

[MooseMom]

I wish there was something more we could do for you besides blathering on at you on a message board.   

I also wish that your docs didn't feel the need to "start over".  It feels like they are just stumped and don't know what else to do.  Maybe they WILL finds some answers, but I do hate the idea of you having to go through all of those invasive tests again.  Again, I am upset that this has happened to you.  It seems so random and unfair. 

Are the nurses still being nice? 

Thank you for keeping up updated, and I'd be grateful if you'd continue to do so.

[McKay]

Jeannea,  two days post-procedures,  I pray you are feeling better.  Stay strong and steady as she goes, as you await results and recovery! 

[jeannea]

I probably get to go home tomorrow. My creatinine is slowly coming down. My belly is huge again with fluids but it's a little touchy when to start diuretics again. I'm going to stay with my parents for a little until I feel stronger.

The cowardly doc from hepatology has been avoiding me. He's not the doc I've been working with but he was doing hospital rounds this week. I haven't seen him since my testing was done. I guess he's afraid to tell me he knows nothing. I know culture and biopsy results aren't available right away. But this is pathetic. He could come discuss what they do know.

I've had better nurses on this floor. But I am tired of being here. I can at least waste the weekend in a comfy place where I can shower. You all here are so nice to me and help me feel better.

[Deanne]

You sound so uncomfortable and I'm sure worried and fed up. 

[MooseMom]

Jeannea, I didn't realize you were taking diuretics.  I guess I had just assumed that the only way to get rid of the extra fluid was by draining them via a needle.  Does taking diuretics help get rid of some of the fluid in the ascites?

So, they'll let you go home, but then what?  Are the docs any closer to an answer and/or a treatment?  When do you expect to get culture and biopsy results?

This is all such a mystery. 

[cassandra]

How are you doing Jeannea?

       

[jeannea]

I ended up in ICU again. Bleeding from liver biopsy, gall bladder problem. Starting to get better again. Really tough. I've had lots of pain, more blood, more fluids. Still no answers.  I am soooo tired of this.

[MooseMom]

I just don't believe it.  I'm speechless.  Where are you right now?

[jeannea]

ICU in my transplant hospital. Good nurses right now. Docs are not much help.

[cassandra]

                             


TTL you've got good nurses

Lots of love, Cas

[PrimeTimer]

Sorry you are going thru so much, jeannea! That would truly bite (another word for suck, bummer, stink and many other words that cannot be posted here...) Times like this you do not know whether to kill 'em with kindness or to just outright kill 'em. Maybe do neither? One time when I was in the hospital I got into a wrestling match with a temp nurse in the middle of the nite. It was so bad that I almost called 911 but then thought about it and realized that once they saw that the call was coming from inside a hospital, they'd think I was just crazy. So, I ran and locked myself inside a bathroom until the nicer morning shift nurse came on-duty. Unfortunately tho, that cost me an extra day in the hospital fighting an infection...so whatever you do, don't do what I did! Hope you're out of there soon and that they or someone with a brain can give you some answers as to what is going on and then....FIX IT! 

[SooMK]

I'm so sorry. Thinking of you.

[Angiepkd]

So sorry about all this, Jeanna!  I hope today finds you healing and getting answers.  Sending prayers your way.  Please keep us posted!