[Rose76]

ONE year ago, I felt so weak carrying in some groceries that I went to the ER. They admitted me for severe anemia. I got a blood transfusion - one bag of red blood cells. I got put through tests, but they couldn't find any source of blood loss.

Monday I went to the ER with the same extreme weakness. Same diagnosis - severe anemia. They gave me 2 bags of packed red blood cells.

Six days later - today - I feel extremely weak again. I'm fine staying on the couch, watching TV. Soon as I get up, I realize I can't stay on my feet for long. So I know I should go back to the ER. The problem is I just hate the place.

I got admitted twice in May with a severe intestinal infection. Altogether, that was 7 days, which I spent lying in beds in hallways. This is a big, teaching hospital in a good size city. We're not having a severe COVID infection rate. Still they got beds strewn around in hallways. Sometimes they close down a unit with a bunch of rooms, even though the hallways are littered with beds.

The ER is a snakepit. You spend hours in the dirty waiting room. Staff can be so downright nasty. They have inexperienced nurses doing the blood draws (so they can learn.) Monday, they butchered me trying to get blood. They seem to totally not care. One young nurse who got frustrated trying to get my blood drawn said, "I hate my effin job." After that, I wouldn't let her touch me.

Whenever I stand and walk from one room to the next, my heart races like crazy. My heart rate goes over 120 bpm. That's another reason I should go to the hospital. But I got too depressed the last time I was there. I just hate the place.

I feel so depressed over what that place is like, I'ld rather risk staying home than go there. I figure my PCP might arrange out-patient treatment for me. That's not very realistic with the way the system works. I just don't care.

[Deejay14]

Tell the doc you would like to do this outpatient if that's possible. Can you go to an urgent care as opposed to the ED.

[divine1966]

Originally Posted by Deejay14

Tell the doc you would like to do this outpatient if that's possible. Can you go to an urgent care as opposed to the ED.

Urgent care will not treat severe anemia

[divine1966]

What the…

Is there a better hospital chain by you? It sounds outrageous. I spent days in the hospital when my mother had a long illness and we can’t think of one bad thing to say. She was so pleased. My husband was in the hospital twice recently, zero complains. Overall I’ve been around the block and then some, on two continents, and I cannot imagine in the wildest dream nurse telling a patient that she hates her egging job. Not asking where you live but I can’t wrap my mind around where they have such awful health care

[unaluna]

Can you not just go to your GP? Maybe if you are admitted to a hosp by your GP, you wont get stuck in an ER hallway.

[Rose76]

They call that a "direct admission." I'll have to ask. They must do that for planned surgery.

[Rose76]

On top of the anemia, I'm developing a heart problem. Severe anemia puts a strain on the heart, which tries to pump harder and faster. I've always had an abnormally fast heart. Recent ECGs are showing another abnormality - in the wave pattern. It's a sign of an overworked heart, from what I've read. My PCP has set me up to get an echo cardiogram.

I know by how weak I am and by how my heart races when I stand and walk that I need medical attention. My heart pounds in my chest just walking out to the kitchen. I'm afraid to try and get into the shower, which I really need to do. The hot weather also puts more workload on the heart.

So I'm thinking everything over. I'm in a good size city. There are some other hospitals. Fragmenting my care like that seems like a bad idea. The big hospital I use has a satellite hospital one town west of where I live. It's small though - 85 beds. They might ship me back to the main hospital.

The thought of going back to that main hospital just demoralizes me. It's a busy place. I could end up sitting for hours in the waiting room, which tends to be on the dirty side. It's close to downtown, so a lot of homeless seek care there. Some are pretty disturbed. I'll be stuck in a wheel chair because I can't walk more than a few yards. I could pick up COVID. I'll get bruised and butchered by people trying to get my blood because they're not very good at doing that. I'll get tortured by nurses trying to start an I/V. They'll complain I'm "a hard stick." I'll probably get admitted. Then I'll miss out on the out-patient treatment I was supposed to get tomorrow.

It seems a lot better to just stay in bed at home.

In a big hospital, there are all kind of people working there. Some are dedicated and caring. Then some are stinkers. I'm just too unwell to have to deal with them. When you don't have a spouse or other family there with you, you don't have a witness.

[divine1966]

Do you have a GP? I know una already asked about them sending you to the hospital directly but you might still end up going through ER, so them referring your might not be a solution. But if you go to your GP and explain what is going on in the hospital and how bad it is wouldn’t he suggest something? I also don’t understand how your GP isn’t concerned that he or she can’t find what causes anemia?

The thing is that ER and overall that horrendous hospital you describe aren’t really invested in you. But GP should be. I have a really weird GP but I can’t imagine he’d not try all kind of methods finding source of anemia so it could be treated? I don’t think laying in bed is a solution.

What did they test to find out what’s going on? Your intestinal infection you had could cause some damage and bleeding? Are you losing weight?

[Rose76]

My primary care provider is a PA (physician's assistant) who is supervised by an MD. I've had contact with both, mostly the P.A. Investigating recurring, severe anemia is the province of gastroenterologists and hematologists. I've been referred to both. The GI specialists have been investigating me for 6 years. (Colonoscopies, Upper endoscopies, a thing where I swallowed a camera.) Hematologists investigate different causes of anemia, like cancer of bone, auto-immune anemia. For some reason the hematologists said I didn't need them, but should stick with the GI clinic. 6 years ago, GI found a stomach ulcer, but that's all healed up.

My sister has the same condition for 12 years. Back when she got it, I thought it was the craziest thing. Surely they could find the source of the blood loss or blood cell destruction. They haven't. She lives thousands of miles away in an area with the best of medical facilities. When she gets anemic, they give her intravenous iron.

Here's my beef: she gets the I/V iron readily. I seem to have to beg for it. She's never needed a blood transfusion. Her doctors seem to be on it. Her condition is managed by a hematologist. My hospital has now decided I should be seen by a hemotologist. Finally, I will be . . . in a few months.

A likely cause is fragile, tiny veins in the lining of the small and large intestine that break, leak blood, then heal up. It can be very hard to actually see them in an endoscopy procedure. My sister had way more diagnostic procedures than I've had. They found nothing.

I'm mad that my PCP (the PA) didn't send me for I/V iron back in June. She told me to take iron pills. Back in May, I got diverticulitis after months of taking iron pills. Research is now indicating that iron pills are dangerous to the gut.

Tomorrow I have an appointment to get I/V iron at out-patient clinic. (If I can walk well enough to get in there. It's way deep in the hospital. I plan to ask for a wheel chair and transport aid.)

I worry that the I/V iron is too little, too late. I might really need blood. For that I have to go to the ER. My PCP just went on vacation. I wish I had an actual doctor to discuss my worries with. I don't. If I call the GI clinic, I probably won't get a response. I messaged the GI PA assigned to me. He ignores my messages.

I need to consider getting out of this teaching hospital system. Now does not seem the best time.

[divine1966]

What a hassle. It seems to almost be running in the family as your sister had it too? Now I am going on a total limb here. If it’s generic could it be some genetic blood disorder?. I have thalassemia minor (always forget alpha or beta). It’s typically asymptomatic but my GP said sometimes it causes anemia. Just wonder.

[Rose76]

It could be. That's why a hematologist should be involved in my care. A more common cause is those fragile veins I mentioned above.

Whatever the cause, the anemia has to be treated.

I think I'm going to have to call an ambulance. When I go from sitting to standing, I feel terrible now. As long as I stay sitting or lying, I feel ok. When I'm vertical, I get real distressed. That seems to be getting worse. I doubt I would be able to go for that outpatient treatment tomorrow. I'ld have to be taken there on a stretcher.

[divine1966]

I hope they get to the bottom of it soon. Ambulance might be the way to go. Hang in there

[Deejay14]

Rose are you still home? At the hospital?? I hope you managed to get some care today. Is it possible to goto another hospital not affiliated with the first?

[Rose76]

I called 911. Ambulance brought me to ER. Care has been real good so far. I'm about to get 2 bags of packed red blood cells.

Thank God I'm in a nice room inthe ER, rather than out in the hallway. The doctor and nurse are nice.

Thanks posters for your encouragement.

[divine1966]

Originally Posted by Rose76

I called 911. Ambulance brought me to ER. Care has been real good so far. I'm about to get 2 bags of packed red blood cells.

Thank God I'm in a nice room inthe ER, rather than out in the hallway. The doctor and nurse are nice.

Thanks posters for your encouragement.

Great to hear that you are getting what you need and the care is good. Smart move to call 911, you csnt be driving in this condition

[Deejay14]

Thank you for posting Rose. I hope you are feeling better this morning.

[Rose76]

Yes, I can walk around like normal without getting lightheaded. My legs have normal strength. I'm still very anemic, but 2 bags of blood is the most they give for this. I'm being admitted.

[divine1966]

Great news!!!!

[Deejay14]

I am happy you are doing better Rose. Try to get some sleep.

[Rose76]

Things are not going well in the hospital. I'm awfully weak. I can stand and walk, but it tires me terribly.

I can't believe I'm me. I never was in such terrible shape in my life before. I don't recognise who I'm turning into . . . or what I'm turning into.

I'm getting seriously depressed.

[divine1966]

They better get to the bottom of it. Not being able to stand or walk is just not normal.

Are you on any medication that could cause permanent or temporary issues like that? Is the dose of frequency too high? Or is it possible medications interact with each other or you take supplements that interact with meds? Or you recently stopped any meds?

If it’s not medication insist on seeing blood specialist

[Rose76]

Nothing to do with meds. I'm bleeding in my GI tract, probably the colon. Going for upper and lower endoscopy today.

[divine1966]

Originally Posted by Rose76

Nothing to do with meds. I'm bleeding in my GI tract, probably the colon. Going for upper and lower endoscopy today.

That’s what I originally thought and said couple of times. If you know it’s GI then likely doctors suspect too and yet nothing was done? All this time

I just couldn’t understand why your GP or the hospitals you keep going to aren't referring you to colonoscopy and endoscopy which is normally the first step. I am just completely puzzled that you are so sick for so long and instead of finding out what’s wrong (which is very likely GI) they just pumping blood in you. That’s just bizarre. Out of desperation I thought maybe weakness is caused. by something else that’s harder to figure out like meds

The whole situation is just insane

[Rose76]

The weakness has been caused by the severe anemia. On the night I came in, the resident doctor said I was walking around with one third the red blood cells I should have.

[Discombobulated]

Oh crikey Rose, those levels of decreased red blood cells are enough to cause depression and anxiety alone. I’m shocked they took so long to refer you for endoscopy.

So sorry you’re going through this and hoping you get the treatment you need ASAP. Let us know how you’re doing please!