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Well, that is extremely helpful information - thx!

I am guessing I am somewhat compromised due to Hasimoto’s. But my H is TOTALLY compromised due to all of the antibiotics he has had since the end of May. Even vancomycin. But it was in the IV.

I keep asking if they are giving him probiotics, but it’s a "no" so far.

Does it help if we have caught it early on? No smell. No explosive diarrhea.

Yes if caught early tends to be much easier to cure.

Sounds like more of microscopic colitis to this old GI nurse.

A sigmoidoscopy after his upper will allow them to take cultures and biopsies to figure out what is going on. To get a positive CDiff test from that will take about 24 hours, other cultures, and biopsies can take longer. but a lot of times we know what's up just by how things look inside.

And you are not what is considered compromised. Someone with no immune system from chemo, or severe systemic disease, or sepsis, those are the compromised people we are referring to when we say susceptible to getting it. OR if you yourself have had it previously, those folks are always at risk for getting it again, and should be super cautious about taking antibiotics, and ALWAYS warn their Dr they have a history of it when being prescribed antibiotics.

[This message edited by tushnurse at 2:29 PM, Friday, July 15th]

Oh great news. Not to be compromised.

In the back of my little mind I was beginning to think/plan proactively about what to do logistically if we both ended up with it.

Strange days. I looked down this morning and my legs just above the ankle all the way to the tops of my feet are swollen. I’m sure because of all of the being up during the night, so much sitting (I’m a leg crosser), etc.

Anyway, my sister is going to bring me some compression socks a little later.

And I learned last night that my 2 year old grandson had a trip to the ER. Chest was caving in - with difficulty breathing. Thank God he’s fine. Changed his nebulizer and added an inhaler.

His mama is a rock. I’m so blessed with both of the mothers of my grandchildren.

Whatsright - how is it going? How are YOU? So glad your grandbaby is okay!

Any progress about your H?

I hope you get to stay off your feet and rest.

I could use some feedback.

H’s sigmoidoscopy and endoscopy turned out pretty ok. He did well, and although there were some things that happen when we are older, the results didn’t show anything to be too concerning. 👍🏼

The dr who was the same dr who did the endoscopy years ago - and found the "severe ulcerative esophagitis" - commented that it had healed nicely. 👍🏼

But then in his notes under "Recommendations" he wrote that H should take Protonics once a day. Well, he is already taking it twice a day. So is he intentionally pairing that down?? Or is he not aware that H is already taking it x2 per 24 hrs? I just didn’t know if he had records he could see on that, to assist with his decision. I have just this second addressed this (very respectfully, with concern) with the hospitalist and she acts incredulous that I am "questioning " her (my word).

We have been here 4 days, or is it 3?, and they have not been giving him probiotics as I have repeatedly requested. While testing for c dif? WTF? They have just told us that his c dif toxins are negative, but his antigens are positive. I asked exactly what that means, but was placated, "Don’t worry about it…he doesn’t have c dif." But antigens mean he has had it??? Isn’t that important to know if for no other reason…for future reference?

We finally got them to do a urine culture at 2:00 this morning. Because they haven’t been giving him his Bactrim while we have been here, and considering the fact that you MUST take the full prescribed run of antibiotics, his urine has become cloudy and has a harsh smell.

The nurse and hospitalist were standing in the room, treating me like I’m an idiot, just now, while I was asking questions. My questions, were specific, by my estimation: Why reduce the protonics? Why no probiotics? Why no bacttrim? What does negative for toxins / positive for antigens mean exactly? Pretty specific questions I thought. Not questioning the decisions, just wanting to understand, as a learning process to use as a resource in the future.

Their answers were: We have figured out what it isn’t. That’s our job. You need to realize blah blah blah because of his SCI. I told them he broke his neck 48 years ago. That the "usual" sci stuff like constipation, contracture, decubitus ulcers, utis are the least of my worries. That I’m trying to understand the new stuff as it comes up. And my personal favorite: "Maybe you could take some notes and make a file that you could refer to in the future."

I rarely brag on myself, but I would bet my FAT ASS that I am one of the most knowledgeable friggin’ caregivers (not in the medical profession) they have ever dealt with. I don’t appreciate being condescended to.

Sorry about the rant.

We still don’t know why his stomach continues to hurt intensely without pain meds.

Any why there was so much mucus in the bowel.

WHICH IS WHY WE CAME TO THE ER IN THE FIRST PLACE.

They resent me asking questions.

They were planning to send him home today, but begrudgingly said she would wait to get the urine culture and send him home tomorrow. Like that is not part of the problem…and a problem I believe they contributed to by withholding his Bactrim.

[This message edited by WhatsRight at 3:10 PM, Saturday, July 16th]

So his pain level is still 8 or above without morphine. In his belly. The reason we came to the ER.

They plan to send him home tomorrow with that not resolved.

"You can pursue a resolution for the stomach pain (with a doctor outside the hospital). I forget her exact word(s) for that.

Is this commonplace?

Sorry for all the posts…

Now blood pressure is high. I told her that it usually is in the hospital.

She said, "But it’s when he’s asleep. Please tell me if he mentions having weird dreams. "

"Maybe it is "white coat syndrome ".

What HORSE SHIT.

Excuse me.

Showed the nurse the latest urine. Cloudy. With mucus.

Her response…"Yes, there is some mucus in there. His urine culture came back clean."

I guess we are going home.

All I can say to this is .... OMG!

And as usual to tell you to hang in there.

Wow what a rollercoaster of a visit.I have no medical experience but this sounds really awful.
I hope your H’s pain is resolved soon.

(((WR)))

So… as far as the C. diff goes, as Tushnurse posted earlier it’s a bug we pretty much all carry in our gut. Healthy gut flora keeps all that in balance. What causes a C. diff infection to be so dangerous is the toxin. So the antigen positive just means they detected the bacteria there. Toxin negative means there isn’t an infection to be concerned about.

As far as the Bactrim goes, I’m assuming they did a urine culture.. I just ran back through your thread to refresh my memory. I saw that they said it wasn’t resistant to antibiotics. I’m not sure why they aren’t giving it. Are you saying he’s not on any antibiotics at the moment?

Yes ma’am, that’s exactly what I’m telling you. And has not taken it for the last three days.

This hospital is a chain, and they have a great big thing going… Like I’m sure a lot of hospitals do… About really "caring" for the patients and even for the families of the patients. Every time a nurse comes in his room they always ask if they can get him anything else, and then they ask me.

Well that seems very superficial to me. Just so they can say that they do it.

But they’re going to send him home with continued intense pain when he’s not full of morphine. When that is what they admitted him to the hospital from the ER because of.

Where is the caring there?

Sorry, I’m just livid whenever I think about it.

And all day his BP has been in the 180s/90s ALL DAY.

Isn’t that too high???

I have zero medical training but sending him home with that much pain and no explanation for it seems wrong. There has to be something causing that amount of pain.

He is lucky to have you advocating for him.

Can't pain cause blood pressure to be high? I think I was told that when I was in the hospital.

[This message edited by zebra25 at 12:46 AM, Sunday, July 17th]

Yes, at least it makes my H’s BP high.

And a follow up about the c dif info.

She didn’t say the antigens we the normal bacteria in our guts.

She said it meant that he had c dif, but now he doesn’t. ?????

[This message edited by WhatsRight at 1:12 AM, Sunday, July 17th]

Does he have Medicare? If so, then appeal the discharge. They can’t force you to take him home.

I’ve been a little hesitant to engage about the UTI/sepsis for a few reasons. But just gonna throw this out and I’m not saying this is what’s going on there, but it makes me wonder. ER doctors LOVE to diagnose UTIs. It’s easy. Low hanging fruit. Run a urinalysis and oh, there’s bacteria! Little bit of blood. UTI! Ding, ding, ding!!! It is very frustrating to those of us in long term care because we can send a patient out with stroke symptoms, leg pain, headache and fever, vomiting blood. And they come back with antibiotics and diagnosis of UTI.

What many people don’t know is that bacteria in the urine is not necessarily a UTI. Approximately 15-30% of males over 65 and 25–50% of females have asymptomatic bacteriuria, or bacteria in the urine without symptoms. Cloudy urine, foul smelling urine, sediment in urine are not necessarily symptoms of UTI. Especially in the presence of a Foley. In long term care we are required to follow a set of evidence based criteria before we can test for, diagnose, and treat a UTI. Hospitals do not have the same oversight. They are beginning to have antibiotic stewardship programs and committees which review the use of antibiotics to ensure appropriate use. So it may be that the initial urinalysis was “positive” for UTI but the final culture wasn’t over the threshold to require antibiotics.

I am so sorry that y’all are going through such a hard time and that you aren’t being treated decently. Do y’all have a patient portal or “mychart” where you can download lab results and stuff? Because that would be very interesting.

But stick to your guns. If he is having pain that is unrelieved and blood pressures that high, refuse to take him home. Appeal the discharge, ask for a second opinion.

And keep asking questions here. We’ll help you as much as we can.

I feel you have every right to be frustrated!

HFSSC-thanks so much.

BP this morning 205/116

They did gallbladder scan earlier - no results to us yet.

Yes, he has Medicare, Disability and Medicare Advantage.

I will ask for a second opinion.

The nurse is going to ask about a foley (I have been straight cathing him) to see if the BP issue is due at all to pressure building up in his sleep. (And therefore he doesn’t feel it and tell me. At home we do it by time - every 4-5 hours.)

I get the impression they may think he is drug seeking. But the hospitalist has said that he had a "deer in the headlights" kind of pain in the ER. It is less now with pain meds, but definitely still very bad pain.

I have a question.

They have educated (pitched?) to us a new program within the hospital. "Hospital Care At Home".

It means if you meet a certain criteria, they can send you home, and a nurse will meet you when you get there to get the patient set up. They can do IV, and all manner of services. Less expensive, and works to ease the transition from hospital to home.

So if IV meds alone (for example) is what is keeping you in the hospital, this program lets you go home with a nurse coming to you to take care of hospital level things within limitations.

Do you feel he would be a good candidate for this?

I just worry if he strokes out, being in the hospital would get him attention quicker.

And how could they diagnose remotely?

[This message edited by WhatsRight at 3:58 PM, Sunday, July 17th]

The hospitalist just came in. Says she has looked over his data from last few hospital stays.

Says she revisited the gallbladder scan. Says there is no blockage or elevated enzymes that are necessary to justify removing the gallbladder. But there is some wall thickening, etc. Says the hospital surgeons will not consider it worthy of hospital surgery, but we could go through PCP and general surgeon and possibly take care of it with out patient surgery.

Of course, then she could discharge him, AND we will have to pay so much more, because we pay zero for hospital stays/ services / procedures / surgeries after 3 days.

I asked, "What about the blood pressure?" She says that yes, it has been high, but has also been very low. Says it was high probably because of fluids, etc. and probably was low due to meds they gave him when it was high. That BP should be treated/balanced over days, not hours/minutes.

I said that I understood what she was saying but that I also didn’t want him to stroke out. And that I was unclear how she wanted me to address it at home.

Right now his BP is 256/132.

EVERYTHING I READ AND AM TOLD - EXCEPT BY THIS HOSPITALIST- tells me that 180/120 and above is A HYPERTENSIVE CRISIS.

Just tell me why they aren’t running around concerned, sending him to ICU, or SOMETHING - like they did when it was 58/37.

Am I overreacting about this?

Said she had ordered another test of the gallbladder for in the morning. I can’t remember the name.