WWYD - Navigating Health Care w/ severe symptoms

[bsmcneil]

I'm at my wits' end and could use some advice. For 3 months (straight, no gaps) I've been having health issues. I've gone to the ER 5-6 times, tried urgent care, my primary provider (a NP), and a couple of specialists (almost all of which I've arranged). My NP is overworked and has been unhelpful (and I don't mean to disparage her). For example, I have had blood in my urine the whole time. Her response has been, "That could only really come from kidney stones and your CT scan shows you don't have those." And then that's it. I've been coughing up blood since late September - daily, frequently, and often the blood makes up a significant portion of what I cough up. I recently tracked it - I coughed up 25 times in 3 hours. It eased off some and then came back. Total: 70+ for the whole day. Every single day for the past 7 weeks. NPs response? "Coughing up blood only comes from 2-3 things and your scan doesn't show those." I had a CT scan last week which showed I have a partially collapsed lung (which showed up on a CT scan back in August) - no treatment or acknowledgement of it. The CT scan also said there was an ill-formed/defined soft tissue density in an area near the lung - my provider's response was, "I don't know what any of that means." She hadn't even looked at the scan - came into the exam room and said (literally - I'm not exaggerating), "The CT scan and lab work are all clear. Well, let me look before I say that." And then she "looked" and glided over all the abnormalities, even when I would specifically ask (having seen my records).

Blah.

There are lots of symptoms - my question isn't really about that (though if anyone has a similar story, I could share). It's more - what can be a next step? So, the thing is - I don't know what to do. I live in a really weird area where there are incredibly few medical providers (especially given the size of the town) and that was true pre-Covid. I'm with this NP because my previous (awesome) NP quit medicine when her daughter died unexpectedly and I got bumped to another NP (who quit last May because she had been commuting from an hour away). It took me 3 months to get into a new NP's system (and it just so happened to coincide with this issue arising). I did ask around and found a potential new practice - their first available appt is mid January 2024. I live an hour or so away from a decent size city (Indianapolis) and I've considered going there - but I don't know where to start. Do I try to find a primary provider/family medicine and go that route? That feels like it could take forever (and that's especially hard not living there).

I did ask my NP to refer me to pulmonology re: the lung issue. She also said she'd ask someone who was an MD (part of her response has just been - there's nothing I can see or do or even suggest might be wrong). I had to beg for my last blood/urine tests - which showed some issues. Her response was, "Well, when those things occur, we look to a second set of tests" but didn't/won't order those tests (when the ER did them in early Sept, the secondary tests showed problems). It very much feels like I'm not believed (there's been a lot of "maybe it's constipation, stress, something you've had your whole life, a normal thing that happens, etc"). The pain is surreal (and I need to address that) but the symptoms/underlying issue is what concerns me most. Reading about the collapsed lung issue - says it either takes care of itself fairly quickly or should've been resolved within 24 hours with treatment. It's been 3 months (and still no treatment) - and then sites mention that not treating it for this long can lead to bigger problems. Coughing up dried blood (though sometimes it has been pink/frothy) seems to be something that might happen for a week - not 7!

I realize it's a long-shot - but if there are any suggestions, please share them!

 

[bsmcneil]

The CT scan also said there was an ill-formed/defined soft tissue density in an area near the lung - my provider's response was, "I don't know what any of that means."

I should note - that after I asked (as strongly but politely as I could) if she could address this - she agreed to reach out to the radiologist to see what it meant because she didn't know. But even that was a tug of war.

 

[DVCjj]

I don't know what an NP is and I've always known a general doctor to e a GP. If you have a (non HMO) normal all encompassing insurance plan (again, I don't know what NP entails), I would take it into my own hands ASAP and get on a Next Door App in your general vicinity and ask for recommendations for an Internist and/or a Gastroenterologist. I would start with those two things and go on to a Pulmonary Dr. Even the times you've been to an ER, you needed to get some kind of referral to SPECIALISTS. Every time I'm at an ER (a couple times over the years), I'm always been referred to a follow up with whatever specialist they feel appropriate. In fact it's printed on the paperwork for a follow up I get when I leave.

I definitely would go somewhere ASAP. Coughing up blood is definitely not a good sign.

Even if this quack (I mean, the doctor you are now going to) is starting to be nicer and more concerned, I keep hearing the words of my Rheumatologist say to me when I felt so bad finding and going to another doctor (her). She said "A doctor is NOT your friend. He/She is someone who helps you when you are in need. Never be leery to change doctors as many times as needed".

 

[bsmcneil]

Even if this quack (I mean, the doctor you are now going to) is starting to be nicer and more concerned

She's, sadly, not more concerned and definitely has sort of thrown her hands up. So, NPs are nurse practitioners and along with PAs seem to fill in for MDs (while, obviously, not being there). NPs have graduate level training, from what I understand.

 

[starry_solo]

Can you self refer to a specialist? Go to another medical professionals? Blood in urine is never good, unless you’re a woman with a cycle and even then, that’s a very limited time period during the month.

coughing up blood is also not good.

what I would do is contact my insurance company and get another medical professionaL, preferably with a MD or DO after their name. Maybe an internist.

NPs are good, til they aren’t, same with doctors…

 

[Pea-n-Me]

It’s a little hard to respond to something like this without knowing some other things, like

Your age
Your general state of health
Your medical history
What meds you’re on
Are you on a blood thinner or aspirin, NSAIDS, etc.

You don’t have to say here what those are, but it’s a lot easier when the information is in front of you.

Additionally, there can be different levels of “blood in urine” and “coughing up blood”. For instance, blood in urine can be microscopic and only show up on a UA. Do you have any signs of a urinary tract infection? You said no signs of kidney stones. Is there blood on the tissue when you wipe or in the toilet when you go? (Again, don’t have to answer, but things that make a difference.)

Coughing up blood can also be from coughing so much, where small blood vessels in the throat become broken (from coughing) and can bleed. Then there’s the blood that’s very alarming because it’s large amounts of bright red blood coming from something like a tumor in the lung, leaving less blood in the rest of your body, etc. I would really hope that of the many people who’ve seen you, someone would’ve sounded the alarm that something like that was an issue if it were. But we all read stories where things got by so it’s hard to say. Hopefully no one has been overly concerned because no one’s seen anything overly concerning. The NP on the CT scan goes by the readings of the radiologist who studied and signed off on the images. But the NP should’ve been able to explain it to you, not say, “I have no idea what that means”. I’ve known people who had spontaneously partially collapsed lungs and they eventually resolved. But I’ve also seen worse problems from partially collapsed lungs. There are so many factors none of us can know, you really have to depend on your team to assess these things with all of your information in front of them.

Where to go from here? Well, as you’ve said, you can find another primary care practitioner, but that can take a while, as you’ve seen. (Book it anyway.) You could go again to an ER in the hopes that if it’s something serious, they’ll admit you and do a work up. You can try to get in to see a nephrologist (kidney doctor) or pulmonologist (cough/lungs) to address the bleeding issues to these systems (which may actually be your throat), but there can be a long wait for them, too. I wouldn’t hesitate to go an hour somewhere you think you could get care. I wish I could be of more help. It sounds like you’re run down and scared and haven’t gotten the kind of support and reassurance that you should have from your medical providers. Maybe make an appt w the NP again and try once again to talk to her about it. Say you want some answers. You can always escalate care if you need to. (Ask to see someone else.)

One other thing I thought of, what preceded this three months ago? Did you have Covid? Where is your pain? Are you taking any Robitussin or Mucinex for your cough?

 

[DVCjj]

She's, sadly, not more concerned and definitely has sort of thrown her hands up. So, NPs are nurse practitioners and along with PAs seem to fill in for MDs (while, obviously, not being there). NPs have graduate level training, from what I understand.

Ahhh. Didn’t realize. As of now, none of my Drs have NPs or PAs but good to know. Tks.

 

[Scootin'By]

I'm really sorry that this is happening to you. It sounds super frustrating! And on top of that, after all of this, you're still sick.

I agree with the others that blood in urine or coughing is never good and can be really bad. It's terrible to say, but sometimes doctors only believe things after you've tracked them. You might think about keeping a log of every time you see blood in your urine or cough up something (maybe even document with a few pictures). If you bring that in to someone - anyone! - they should finally say, "Oh wow, this is serious, let's get you looked it."

If that doesn't work, you might try to make an appointment at a bigger facility like Mayo, John Hopkins, somewhere like that. It will mean travel, but they will hopefully believe you and start you on the path to wellness.

Take care. We're all here for you!

 

[tink2424]

I'm so sorry to hear this! My advice - go to the ER at the BEST hospital in Indianapolis. You are unlikely to get the right care where you are located.

It may be something very benign or it could be very serious and this NP is going to get you killed. Going to a hospital in the city should help you get to the bottom of your issues and at least can set you up with the right follow up recommendations.

Again I am sorry you are in this situation but don't get discouraged. You have to be your own health advocate as no doctor/NP will do it for you. Sending healing vibes your way!!!

 

[Ursula J]

I'm so sorry to hear this! My advice - go to the ER at the BEST hospital in Indianapolis. You are unlikely to get the right care where you are located.

It may be something very benign or it could be very serious and this NP is going to get you killed. Going to a hospital in the city should help you get to the bottom of your issues and at least can set you up with the right follow up recommendations.

Again I am sorry you are in this situation but don't get discouraged. You have to be your own health advocate as no doctor/NP will do it for you. Sending healing vibes your way!!!

Just want to second this--please seek out an ER at a large medical center! Take care!

 

[SpaceMan5]

Hey @bsmcneil, while I can not speak directly to your symptoms but I can relate to your frustration with the medical system.

I have one daughter who has been dealing with Endometriosis for several years. It has been extremely frustrating finding a provider who can give her some relief from her constant pain. We even had one doctor tell her to go for a walk and get her some fresh air. Are you kidding me!!! I wish I were. We are meeting with another provider next week and another MRI.

I am really sorry you are going thru this. Continue to advocate for yourself in the strongest way possible.

 

[zavandor]

I'm very sorry this is happening to you. It might be a very stressful period for you, I know I would be very anxious if I were in you.
Do you have a friend or relative you trust to talk to about how you're feeling? Otherwise asking for help to a professional could be useful. Your physical health is rightly your first concern, but don't put aside your mental health. That's a mistake I wish I hadn't done some time ago.
Warm hugs.

 

[Disneychick13]

Just want to second this--please seek out an ER at a large medical center! Take care!

I’m going to 3rd this…..go to a major ER in your state (no matter how long of a drive). I can’t imagine the level of frustration that you must have. Go as soon as possible. Those are worrisome symptoms and it’s baffling how unseriously you have been taken thus far.

 

[Lewisc]

Your NP should have referred you to a MD, months ago.

PP are correct. You need to dramatically upgrade your medical care NOW. Check your insurance. Make sure the hospital is in your network. Go to Chicago if that's the nearest in network. I'd prefer a hospital which is associated with a medical school.


Many plans have telemedicine. Some insurance carriers have a nurse you can call. You're probably past that.


Bring copies of everything. A list of all the meds you take INCLUDING over the counter drugs such as vitamins, aspirin, cold medications etc. If that's too much work put everything on a large zip lock and bring them. Bring copies of all your lab results including blood and urine. Copies of any X Ray, cat scan MRI. Log into the portals and print it out the reports.

Bring chargers for you phone and tablet both AC and battery.

Have access to your drug formulary. Printed, PDF,.saved link to website....at a minimum have the phone #. Don't be afraid to ask for the most cost-effective drug which is appropriate.

edited to add I see this thread was started a few days ago. Hopefully you've already been examined

MONDAY AT THE LATEST.

 

[Haimia]

Another response to the lack of care, medically. I too have had issues with doctors. I had a CT for an unrelated concern. It showed my thyroid nodules (did not know I had). That led to another doctor (that in itself is a long story!) and eventually having entire thyroid removed.

There is another time I had a test and another issue arose. I found the issue, like the thyroid above. You have to self advocate the entire time. Ask for copies of all your tests (on a CD or such) and medical reports. You are entitled to have those - your tests, your body and your insurance paid for tests, etc. Have those with you when you do get to someone else for care.

 

[bsmcneil]

So - in the past few months, I've mostly lurked as my energy has super waned. I started to post a thread but thought I'd just update this one.

I did end up going to an ER in a major city; however, they simply pulled up my records from where I lived and said, "We see you've already been to the ER recently - there's nothing we can really do." I languished for a bit - my NP did refer me to a MD but the first they could get to me was around Jan 8. At the same time, I found another practice where I knew a staff person and they could get me in Jan 12. The second practice was with a NP but the whole idea was that it's more holistic.

I think I went back to the ER in Dec once (maybe twice). At one point, the dr didn't check anything - and despite my being really clear about a symptom (blood in my stool but in a way that I know it wasn't run of the mill stuff), said, "You look young and healthy, I think we're good here."

Jan 8 - MD. Nice person. I don't - due to my own trauma - feel especially comfortable with male medical providers but this person was very kind. Didn't really seem to take my stuff seriously.

Jan 12 - NP. We had a 40-45 min appt scheduled. She stayed with me for almost 2 hours. She looked at my files and with nearly every page or entry, there was a, "They got ___ result - but what did they do to treat it?" "Nothing." or "If you get ___ result, you need a second test. Where is that?"

Last week, I got a call from the NP - she had run a bunch of tests. I tested positive on my ANA test, showing either an autoimmune disorder or cancer. She's been setting me up with specialists, etc (she believes she knows the diagnosis - but I'll need a kidney biopsy). Meanwhile, this week, my symptoms have stepped up a notch. In an ideal world, I would've gone to the ER two days ago but I talked myself out of it because of my previous experiences (I was dressed, ready to call 911 because I didn't feel safe driving - but waited). My plan is to go on Monday, after I take the kids to school (divorced, this is my time with them and I really don't want to miss any of it). I do recognize that I may have to go before Monday.

If the provider's (I never know how to refer to NPs because I want to say "doctor's") diagnosis is correct, it's serious. But, unfortunately (big picture), it sounds like it's probably accurate (the only fortunate part is that I just can't wait to have a name/diagnosis for it, you know?). And honestly, I don't know what comes next. I don't have family, really. I don't have a safety net. The people with this disease that I've spoken to over the past week - most of their stories are, "I was sick, no one knew what to do - about 4 months in, I got to the ER and went into a coma/ICU." Every page about the disease talks about finding it fast and treating it fast and I'm left wondering how relative that term is, since I've been actively sick since August 12. I'm angry. I want to take the positive ANA tests and kidney numbers and all of this stuff the newest provider found and ask all of the previous people why they didn't take my concerns seriously. Obviously it doesn't matter.

The worst part (I almost wrote this differently) - the worst part is my fear of dying - solely because I wanted to be there for my kids. I didn't have a dad growing up. I care a lot about parenting - it's usually the first thing people notice about me. The second worst part (what I was originally going to say) is the pain. I've been in excruciating pain this whole time. The kindest words anyone has said to me came from my boss. I've had big feelings about being sick, especially since i am young and it hasn't gone away, etc. And I remember she said something about wishing this was over - and at first I heard it in a way that felt crummy, like I was being blamed for it. But she went onto say that I didn't deserve to be in pain. If you know someone who is sick and/or in pain, I highly recommend that as a comforting phrase (especially when you don't know what to say/are past the "get well soon" stage).

I'm on the DIS regularly to read. Funny enough, my 10 (almost 11) year old recently asked if I ever looked up vacation ideas just for fun because they started doing that with the idea of going on a cruise. I was like, "Kid - there's a whole message board I use for that!". So, when I have some energy, I'll try to come back and post here. Thanks for everyone's ideas in the past. <3.

 

[where_else]

So - in the past few months, I've mostly lurked as my energy has super waned. I started to post a thread but thought I'd just update this one.

I did end up going to an ER in a major city; however, they simply pulled up my records from where I lived and said, "We see you've already been to the ER recently - there's nothing we can really do." I languished for a bit - my NP did refer me to a MD but the first they could get to me was around Jan 8. At the same time, I found another practice where I knew a staff person and they could get me in Jan 12. The second practice was with a NP but the whole idea was that it's more holistic.

I think I went back to the ER in Dec once (maybe twice). At one point, the dr didn't check anything - and despite my being really clear about a symptom (blood in my stool but in a way that I know it wasn't run of the mill stuff), said, "You look young and healthy, I think we're good here."

Jan 8 - MD. Nice person. I don't - due to my own trauma - feel especially comfortable with male medical providers but this person was very kind. Didn't really seem to take my stuff seriously.

Jan 12 - NP. We had a 40-45 min appt scheduled. She stayed with me for almost 2 hours. She looked at my files and with nearly every page or entry, there was a, "They got ___ result - but what did they do to treat it?" "Nothing." or "If you get ___ result, you need a second test. Where is that?"

Last week, I got a call from the NP - she had run a bunch of tests. I tested positive on my ANA test, showing either an autoimmune disorder or cancer. She's been setting me up with specialists, etc (she believes she knows the diagnosis - but I'll need a kidney biopsy). Meanwhile, this week, my symptoms have stepped up a notch. In an ideal world, I would've gone to the ER two days ago but I talked myself out of it because of my previous experiences (I was dressed, ready to call 911 because I didn't feel safe driving - but waited). My plan is to go on Monday, after I take the kids to school (divorced, this is my time with them and I really don't want to miss any of it). I do recognize that I may have to go before Monday.

If the provider's (I never know how to refer to NPs because I want to say "doctor's") diagnosis is correct, it's serious. But, unfortunately (big picture), it sounds like it's probably accurate (the only fortunate part is that I just can't wait to have a name/diagnosis for it, you know?). And honestly, I don't know what comes next. I don't have family, really. I don't have a safety net. The people with this disease that I've spoken to over the past week - most of their stories are, "I was sick, no one knew what to do - about 4 months in, I got to the ER and went into a coma/ICU." Every page about the disease talks about finding it fast and treating it fast and I'm left wondering how relative that term is, since I've been actively sick since August 12. I'm angry. I want to take the positive ANA tests and kidney numbers and all of this stuff the newest provider found and ask all of the previous people why they didn't take my concerns seriously. Obviously it doesn't matter.

The worst part (I almost wrote this differently) - the worst part is my fear of dying - solely because I wanted to be there for my kids. I didn't have a dad growing up. I care a lot about parenting - it's usually the first thing people notice about me. The second worst part (what I was originally going to say) is the pain. I've been in excruciating pain this whole time. The kindest words anyone has said to me came from my boss. I've had big feelings about being sick, especially since i am young and it hasn't gone away, etc. And I remember she said something about wishing this was over - and at first I heard it in a way that felt crummy, like I was being blamed for it. But she went onto say that I didn't deserve to be in pain. If you know someone who is sick and/or in pain, I highly recommend that as a comforting phrase (especially when you don't know what to say/are past the "get well soon" stage).

I'm on the DIS regularly to read. Funny enough, my 10 (almost 11) year old recently asked if I ever looked up vacation ideas just for fun because they started doing that with the idea of going on a cruise. I was like, "Kid - there's a whole message board I use for that!". So, when I have some energy, I'll try to come back and post here. Thanks for everyone's ideas in the past. <3.

Just wanted to send good thoughts and vibes your way Hopefully you'll be able to go on that cruise with your family one day!

 

[tink2424]

So - in the past few months, I've mostly lurked as my energy has super waned. I started to post a thread but thought I'd just update this one.

I did end up going to an ER in a major city; however, they simply pulled up my records from where I lived and said, "We see you've already been to the ER recently - there's nothing we can really do." I languished for a bit - my NP did refer me to a MD but the first they could get to me was around Jan 8. At the same time, I found another practice where I knew a staff person and they could get me in Jan 12. The second practice was with a NP but the whole idea was that it's more holistic.

I think I went back to the ER in Dec once (maybe twice). At one point, the dr didn't check anything - and despite my being really clear about a symptom (blood in my stool but in a way that I know it wasn't run of the mill stuff), said, "You look young and healthy, I think we're good here."

Jan 8 - MD. Nice person. I don't - due to my own trauma - feel especially comfortable with male medical providers but this person was very kind. Didn't really seem to take my stuff seriously.

Jan 12 - NP. We had a 40-45 min appt scheduled. She stayed with me for almost 2 hours. She looked at my files and with nearly every page or entry, there was a, "They got ___ result - but what did they do to treat it?" "Nothing." or "If you get ___ result, you need a second test. Where is that?"

Last week, I got a call from the NP - she had run a bunch of tests. I tested positive on my ANA test, showing either an autoimmune disorder or cancer. She's been setting me up with specialists, etc (she believes she knows the diagnosis - but I'll need a kidney biopsy). Meanwhile, this week, my symptoms have stepped up a notch. In an ideal world, I would've gone to the ER two days ago but I talked myself out of it because of my previous experiences (I was dressed, ready to call 911 because I didn't feel safe driving - but waited). My plan is to go on Monday, after I take the kids to school (divorced, this is my time with them and I really don't want to miss any of it). I do recognize that I may have to go before Monday.

If the provider's (I never know how to refer to NPs because I want to say "doctor's") diagnosis is correct, it's serious. But, unfortunately (big picture), it sounds like it's probably accurate (the only fortunate part is that I just can't wait to have a name/diagnosis for it, you know?). And honestly, I don't know what comes next. I don't have family, really. I don't have a safety net. The people with this disease that I've spoken to over the past week - most of their stories are, "I was sick, no one knew what to do - about 4 months in, I got to the ER and went into a coma/ICU." Every page about the disease talks about finding it fast and treating it fast and I'm left wondering how relative that term is, since I've been actively sick since August 12. I'm angry. I want to take the positive ANA tests and kidney numbers and all of this stuff the newest provider found and ask all of the previous people why they didn't take my concerns seriously. Obviously it doesn't matter.

The worst part (I almost wrote this differently) - the worst part is my fear of dying - solely because I wanted to be there for my kids. I didn't have a dad growing up. I care a lot about parenting - it's usually the first thing people notice about me. The second worst part (what I was originally going to say) is the pain. I've been in excruciating pain this whole time. The kindest words anyone has said to me came from my boss. I've had big feelings about being sick, especially since i am young and it hasn't gone away, etc. And I remember she said something about wishing this was over - and at first I heard it in a way that felt crummy, like I was being blamed for it. But she went onto say that I didn't deserve to be in pain. If you know someone who is sick and/or in pain, I highly recommend that as a comforting phrase (especially when you don't know what to say/are past the "get well soon" stage).

I'm on the DIS regularly to read. Funny enough, my 10 (almost 11) year old recently asked if I ever looked up vacation ideas just for fun because they started doing that with the idea of going on a cruise. I was like, "Kid - there's a whole message board I use for that!". So, when I have some energy, I'll try to come back and post here. Thanks for everyone's ideas in the past. <3.

I'm sorry this took so long for you to get to a provider who actually did their job but I'm so happy for you to have found the NP who took you seriously and is getting you help.

Sending a lot of positivity your way and the wish that you are able to get some relief soon.

 

[Lewisc]

From a distance it sounds like you need someone with you at the doctors. Friend or relative. I was going to say someone who is pushy but assertive is the better term.

It sounds like they thought you were exaggerating your symptoms. OR you have a bargain health insurance plan. A plan which is slow to authorize tests.

 

[mommasita]

Wow, this is a lot to go through. I’m so sorry it’s taken so long, and you are still not even at the point of being diagnosed and treated. You are in so much pain, and that is just hard to be in day in and day out. I can’t believe they didn’t take blood in the stool more seriously, that’s crazy.

I hope you get some diagnosis And a treatment plan.

Totally off topic, I find your user name unusual, and of course you do not have to reply, but is this your last name ? it is mine