When you're disabled or chronically ill - learning when to seek medical care (and what that care will look like) is a painful and traumatic journey. It often ends in "I will never go to the ER again."
I'm both sad and nodding as I read your reality. The busiest place I go is the hospital, and we use masks and hand sanitiser, unlike everyone else roaming around or visiting patients. Thankfully, the doctors we see are masking.
Synchronicity. I'm writing about UK hospital discharges in my next article, and I'm posting some basic questions today. I'll link to this article.
You’re so lucky, when I was in the hospital for a few days this month the only employees wearing masks were the people delivering food to the patients, the housekeeping staff, and a couple nurses had on surgical masks. I guess I should be grateful that the man who was there who actually knew he had Covid was wearing a respirator. So was I. That’s probably why I didn’t catch it.
So glad you didn’t catch it Maggie! It’s terribly difficult facing hospital stays during a pandemic when most people have given up on mitigations.
Victoria - that’s incredible synchronicity! Thank you for including me in your article. I desperately hope we get to a point where the decision of when to go to the ER isn’t such a difficult one. For now I’m working on my next post which will include the tips & tricks I use to make a hospital visit slightly more manageable.
Cool - I'll link to it because we need to enable, empower and prime as much as possible. We have agency we need to share more information & ideas to enable it!
I had 3x prolapsed and degenerative discs. If I do too much a disc goes out of place and it leaves me in agony. I went to A&E and they gave me an injection, and it worked almost immediately. Then my back went out again and they basically refused to treat me saying I needed to see my dr. The nurse that was on gave me a number for the social services and was shocked they wouldn’t do anything. What annoys me is that my medical notes state I’m at risk of fractures and Cauda Equina. So that really worries me. I live on my own. They have never scanned me when my back goes out. I think they need to because when it’s out the pain is unbearable.
Do they do pain management specialties over in the UK or do regular doctors just manage the pain? If it’s a specialist please go see one, they should help you you don’t have to suffer.
Seconding the pain management suggestion if it’s an option where you are. It can be hit or miss finding the right doctor but they’re an important part of a care team. We shouldn’t have to suffer as much as we do & pain doctors know the most about options to alleviate that suffering.
I am so sorry, I was delighted to see an elderly man treated so well at the emergency room near me for back pain. I didn’t think they were going to do anything for him, he told him he was in pain management so it’s not like they can send him home with a bunch of meds.
They were able to look at the CAT scan his doctor hadn’t reviewed yet and they admitted him for pain management. I was so impressed I didn’t think that they would do that, but I guess because they could see that he was actually having issues. I don’t know I was just so happy for him we were all there all day so I was glad they didn’t just send him home.
And I hate that they are so busy we get treated shares in the hallway so I know everyone’s business like this.
I didn't go to A&E when I had AML until I was too ill to be taken in an ambulance - I took a taxi, they then said I needed to be treated at another hospital but they refused to put me in an ambulance until I'd had 2 blood transfusions. My GP listens to me now.
I've been in remission for 6 years, but there is always that worry that it will come back. Doesn't help that I get similar symptoms of breathlessness/difficulty breathing with both B12 deficiency and now Long Covid (but I am not nearly as badly affected as some.)
Coconut Water is always my go to for Potassium, it's also an electrolyte, so great for dehydration. I lived on the stuff while I was in hospital for AML; the tablets I just threw up and the IV was so painful and I was losing veins far too fast, so anything that could help was worth trying - the coconut water saved me.
Yes coconut water is a great option! I don’t always tolerate it well (I’ve got severe mcas and sometimes it reacts badly to coconut) but it’s fantastic for rehydration.
Thank you for sharing your story. This is how we learn and empathize, especially if we can't see what another person is going through. Showing kindness, wearing masks, reading stories like yours can shift perspectives are and small ways we can make a huge difference. ❤️
Thank you for saying! That’s exactly my hope and goal for this stack - to help shift perspectives one heart and mind at a time. Many people genuinely don’t understand how valuable their health is…
Or how tenuous the health of someone else might be. I’m hoping to encourage kindness, compassion and empathy so we can all be safer.
Thank you so much! One of my good friends has a spinal CSF leak so I’ve learned a lot about the condition from her. Another great example of something where the hospital has the ability to make you much worse.
I’ve never been to ER and after 20 years of living with severe and agonising pain that I now understand is 50% more painful than childbirth, I eventually read that the criteria to go would’ve meant many significant trips over the decades.
I later read that a sign of codependency was not seeking medical attention when needed. This, after I’d healed my codepency.
Reading stories like I have about the experience so many have suffered means I have zero regrets about this. There are so many of us suffering in agonising silence and even when we’re not, we’re silenced and suffering in agony.
Do you have a link to where you read that about codependency? I would be interested in reading it.
I’m glad my story helped - I think people need to be realistic about what a hospital can or cannot do so they can make an informed choice about where to be while suffering.
It was a quick Google search I did on it about 4 years ago. It came up with a list of signs and that was one of them. Had a quick search now but can’t find anything similar in as quick a search. I didn’t spend long on it as after 2 years of healing I was (for the first time) no longer codependent. (I’d just ended a 5 year relationship and went on to stay single for 2.5 years - a first for me - whilst I continued doing the (inner) work on myself.
Pretty sure i read into it through the holistic psychologist too - if I remember rightly it’s mentioned in her book “how to do the work”. And I love her Instagram page too, which shares a lot about so many different healing topics.
I’ve had an mri scan that was where my diagnosis came from but took me 8 years for them to do it. 2014. I’d had the problems since 2005. And they haven’t scanned since
The UK? If so it’s very similar in Canada - getting diagnostic tests like MRIs takes way too long and happens too infrequently. Something I’m hoping to bring awareness to in my writing.
Yep this month I waited so long to go to the ER that my potassium got so low they actually got scared.
Then I got scared because they only help they offered me for that was 6 HUGE purple pills. Did I mention I was there for abdominal migraines which means nonstop vomiting. I couldn’t even hold down a sip of water those six pills weren’t staying in me. So I guess if they hadn’t stopped the vomiting I would’ve just died because the only potassium they were offering me were in pill form?
I try not to wait too long to go but these things last for three days sometimes so if I go on day two and they send me home then I end up back there the next day. Which is what happened this month, and then it kept going. And I guess I should be grateful because at least I woke up throwing up at the hospital where they controlled everything I put in my stomach so they knew I wasn’t doing it to myself.
But I was actually terrified that I caught Covid there because while I was being treated in the hallway chairs (a common thing since 2020 because the beds are always full) we can hear everyone else’s business so I know the man three chairs ahead of me had Covid and the lady two chairs behind me was getting tested for Covid and both of them were there for just suddenly falling down or passing out in the middle of the day. But it’s been two weeks as of yesterday and I had another negative test yesterday so I’m going to go ahead and assume that my mask worked.
But yeah I don’t go unless I am severely dehydrated and I can’t help myself. I’m pretty sure I would rather die from Dehydration than end up with long Covid
I’m so sorry! I’ve also waited so long my potassium has been dreadfully off - thankfully they’re usually willing to replenish via IV. My hope is that through advocacy I can help patients prepare for the realities of an ER trip when chronically ill - and maybe one day we will change the system so that it’s not such a difficult experience for us.
IV potassium does have a few downsides, one being that it can be very painful as it infuses depending on the vein where the IV is placed. They usually try oral potassium first wherever possible because there have been major shortages of IV potassium in the recent past-and there are critical cases, such as those in which the low levels are actively causing potentially lethal heart rythyms that must be treated by IV-but also because if the IV goes bad while the potassium is infusing, which is more likely with potassium than many other things because it is so hard on veins which is why it hurts going in, it can actually cause severe chemical burns that can lead to permanent damage to skin, muscles, and nerves. Depending on where the IV was placed, it could even potentially cause things like amputation though that is obviously extremely rare. But, an incident in which the vein "blows" that causes a very painful and easily-infected burn that will scar permanently is not at all out of the realm of possibilities.
In addition to this, there are logistical issues. In the US, hospital policies vary but there are often limits on where and how IV potassium replacement is used. For example, you may need to be on a heart monitor during the infusion, or be in a specific area or floor of the hospital. Since you mentioned you were in a hallway, waiting for a cardiac monitor to become available could have added hours and hours to your stay, and would have meant someone else would have needed to wait for the monitor while you used it etc.
Most potassium infusions, of course, have no complications. But they do exist. So, I just wanted to give you some context on why they will often attempt to have you take the pills first, and see if they stay down, rather than immediately going the IV route.
I totally understand what you're saying, but I found out some things that make a trip to the ER less stressful:
- Start out by saying "I have (your chronic condition), now I'm experiencing (your symptoms), and I was told (by your GP, specialist, or hospital staff during your last visit) to go to the ER in such a situation."
- As you've noticed, ER staff is not qualified to handle your case. Make sure you go to a hospital where they have specialists for your chronic condition they can call. If the nearest suitable hospital is too far away, it might actually be worth thinking about moving closer.
- Tell them you are immunocompromised (or whatever is the reason you are more vulnerable to infectious diseases) and should therefore not wait together with other patients.
I'm both sad and nodding as I read your reality. The busiest place I go is the hospital, and we use masks and hand sanitiser, unlike everyone else roaming around or visiting patients. Thankfully, the doctors we see are masking.
Synchronicity. I'm writing about UK hospital discharges in my next article, and I'm posting some basic questions today. I'll link to this article.
You’re so lucky, when I was in the hospital for a few days this month the only employees wearing masks were the people delivering food to the patients, the housekeeping staff, and a couple nurses had on surgical masks. I guess I should be grateful that the man who was there who actually knew he had Covid was wearing a respirator. So was I. That’s probably why I didn’t catch it.
Oh Maggie. SO glad you didn't get it. Yes, I count my blessings daily.
So glad you didn’t catch it Maggie! It’s terribly difficult facing hospital stays during a pandemic when most people have given up on mitigations.
Victoria - that’s incredible synchronicity! Thank you for including me in your article. I desperately hope we get to a point where the decision of when to go to the ER isn’t such a difficult one. For now I’m working on my next post which will include the tips & tricks I use to make a hospital visit slightly more manageable.
Cool - I'll link to it because we need to enable, empower and prime as much as possible. We have agency we need to share more information & ideas to enable it!
take care of yourself xo
I had 3x prolapsed and degenerative discs. If I do too much a disc goes out of place and it leaves me in agony. I went to A&E and they gave me an injection, and it worked almost immediately. Then my back went out again and they basically refused to treat me saying I needed to see my dr. The nurse that was on gave me a number for the social services and was shocked they wouldn’t do anything. What annoys me is that my medical notes state I’m at risk of fractures and Cauda Equina. So that really worries me. I live on my own. They have never scanned me when my back goes out. I think they need to because when it’s out the pain is unbearable.
Do they do pain management specialties over in the UK or do regular doctors just manage the pain? If it’s a specialist please go see one, they should help you you don’t have to suffer.
Seconding the pain management suggestion if it’s an option where you are. It can be hit or miss finding the right doctor but they’re an important part of a care team. We shouldn’t have to suffer as much as we do & pain doctors know the most about options to alleviate that suffering.
I am so sorry, I was delighted to see an elderly man treated so well at the emergency room near me for back pain. I didn’t think they were going to do anything for him, he told him he was in pain management so it’s not like they can send him home with a bunch of meds.
They were able to look at the CAT scan his doctor hadn’t reviewed yet and they admitted him for pain management. I was so impressed I didn’t think that they would do that, but I guess because they could see that he was actually having issues. I don’t know I was just so happy for him we were all there all day so I was glad they didn’t just send him home.
And I hate that they are so busy we get treated shares in the hallway so I know everyone’s business like this.
I didn't go to A&E when I had AML until I was too ill to be taken in an ambulance - I took a taxi, they then said I needed to be treated at another hospital but they refused to put me in an ambulance until I'd had 2 blood transfusions. My GP listens to me now.
I’m so glad you now have a GP who listens! Are you doing better?
I've been in remission for 6 years, but there is always that worry that it will come back. Doesn't help that I get similar symptoms of breathlessness/difficulty breathing with both B12 deficiency and now Long Covid (but I am not nearly as badly affected as some.)
Coconut Water is always my go to for Potassium, it's also an electrolyte, so great for dehydration. I lived on the stuff while I was in hospital for AML; the tablets I just threw up and the IV was so painful and I was losing veins far too fast, so anything that could help was worth trying - the coconut water saved me.
Yes coconut water is a great option! I don’t always tolerate it well (I’ve got severe mcas and sometimes it reacts badly to coconut) but it’s fantastic for rehydration.
Thank you for sharing your story. This is how we learn and empathize, especially if we can't see what another person is going through. Showing kindness, wearing masks, reading stories like yours can shift perspectives are and small ways we can make a huge difference. ❤️
Thank you for saying! That’s exactly my hope and goal for this stack - to help shift perspectives one heart and mind at a time. Many people genuinely don’t understand how valuable their health is…
Or how tenuous the health of someone else might be. I’m hoping to encourage kindness, compassion and empathy so we can all be safer.
Thank you for this beautifully written and accurate post.
I too live with chronic pain. I have an invisible illness (and Iatrogenic Spinal CSF leak).
I am going to link your post to a forum I belong to that has over 8000 members with this condition world wide.
Thank you so much! One of my good friends has a spinal CSF leak so I’ve learned a lot about the condition from her. Another great example of something where the hospital has the ability to make you much worse.
I’ve never been to ER and after 20 years of living with severe and agonising pain that I now understand is 50% more painful than childbirth, I eventually read that the criteria to go would’ve meant many significant trips over the decades.
I later read that a sign of codependency was not seeking medical attention when needed. This, after I’d healed my codepency.
Reading stories like I have about the experience so many have suffered means I have zero regrets about this. There are so many of us suffering in agonising silence and even when we’re not, we’re silenced and suffering in agony.
Do you have a link to where you read that about codependency? I would be interested in reading it.
I’m glad my story helped - I think people need to be realistic about what a hospital can or cannot do so they can make an informed choice about where to be while suffering.
It was a quick Google search I did on it about 4 years ago. It came up with a list of signs and that was one of them. Had a quick search now but can’t find anything similar in as quick a search. I didn’t spend long on it as after 2 years of healing I was (for the first time) no longer codependent. (I’d just ended a 5 year relationship and went on to stay single for 2.5 years - a first for me - whilst I continued doing the (inner) work on myself.
Pretty sure i read into it through the holistic psychologist too - if I remember rightly it’s mentioned in her book “how to do the work”. And I love her Instagram page too, which shares a lot about so many different healing topics.
Thank you - I will check her out!
I’ve had an mri scan that was where my diagnosis came from but took me 8 years for them to do it. 2014. I’d had the problems since 2005. And they haven’t scanned since
I’m so sorry to hear this. Can I ask where you’re located?
Newcastle
The UK? If so it’s very similar in Canada - getting diagnostic tests like MRIs takes way too long and happens too infrequently. Something I’m hoping to bring awareness to in my writing.
Yes I’m in the UK
Yep this month I waited so long to go to the ER that my potassium got so low they actually got scared.
Then I got scared because they only help they offered me for that was 6 HUGE purple pills. Did I mention I was there for abdominal migraines which means nonstop vomiting. I couldn’t even hold down a sip of water those six pills weren’t staying in me. So I guess if they hadn’t stopped the vomiting I would’ve just died because the only potassium they were offering me were in pill form?
I try not to wait too long to go but these things last for three days sometimes so if I go on day two and they send me home then I end up back there the next day. Which is what happened this month, and then it kept going. And I guess I should be grateful because at least I woke up throwing up at the hospital where they controlled everything I put in my stomach so they knew I wasn’t doing it to myself.
But I was actually terrified that I caught Covid there because while I was being treated in the hallway chairs (a common thing since 2020 because the beds are always full) we can hear everyone else’s business so I know the man three chairs ahead of me had Covid and the lady two chairs behind me was getting tested for Covid and both of them were there for just suddenly falling down or passing out in the middle of the day. But it’s been two weeks as of yesterday and I had another negative test yesterday so I’m going to go ahead and assume that my mask worked.
But yeah I don’t go unless I am severely dehydrated and I can’t help myself. I’m pretty sure I would rather die from Dehydration than end up with long Covid
I’m so sorry! I’ve also waited so long my potassium has been dreadfully off - thankfully they’re usually willing to replenish via IV. My hope is that through advocacy I can help patients prepare for the realities of an ER trip when chronically ill - and maybe one day we will change the system so that it’s not such a difficult experience for us.
Thank you for telling me this, I googled around and it looks like if it’s down below five they can give IV? Now at least I know I can ask about it
IV potassium does have a few downsides, one being that it can be very painful as it infuses depending on the vein where the IV is placed. They usually try oral potassium first wherever possible because there have been major shortages of IV potassium in the recent past-and there are critical cases, such as those in which the low levels are actively causing potentially lethal heart rythyms that must be treated by IV-but also because if the IV goes bad while the potassium is infusing, which is more likely with potassium than many other things because it is so hard on veins which is why it hurts going in, it can actually cause severe chemical burns that can lead to permanent damage to skin, muscles, and nerves. Depending on where the IV was placed, it could even potentially cause things like amputation though that is obviously extremely rare. But, an incident in which the vein "blows" that causes a very painful and easily-infected burn that will scar permanently is not at all out of the realm of possibilities.
In addition to this, there are logistical issues. In the US, hospital policies vary but there are often limits on where and how IV potassium replacement is used. For example, you may need to be on a heart monitor during the infusion, or be in a specific area or floor of the hospital. Since you mentioned you were in a hallway, waiting for a cardiac monitor to become available could have added hours and hours to your stay, and would have meant someone else would have needed to wait for the monitor while you used it etc.
Most potassium infusions, of course, have no complications. But they do exist. So, I just wanted to give you some context on why they will often attempt to have you take the pills first, and see if they stay down, rather than immediately going the IV route.
I totally understand what you're saying, but I found out some things that make a trip to the ER less stressful:
- Start out by saying "I have (your chronic condition), now I'm experiencing (your symptoms), and I was told (by your GP, specialist, or hospital staff during your last visit) to go to the ER in such a situation."
- As you've noticed, ER staff is not qualified to handle your case. Make sure you go to a hospital where they have specialists for your chronic condition they can call. If the nearest suitable hospital is too far away, it might actually be worth thinking about moving closer.
- Tell them you are immunocompromised (or whatever is the reason you are more vulnerable to infectious diseases) and should therefore not wait together with other patients.