Hospital life is nothing like real life.
In hospital everything is done for you, pretty much, (save for the occasional injection).
You food is ordered in your room, your food is delivered to your table, your water is brought in two to three times a day, they'll make you tea and coffee if you want, they'll sort your meds, they'll do your blood pressure, the cleaners will clean your room and toilet; everything, to the best of their abilities, is done for you.
The nurses change your bed sheets every day, although there were a couple of days mine were missed. This isn't very nice when you've been sweating into the sheets over night and then have to sleep in them again the next.
What also isn't very nice is when they take your empty water jug and don't bring another full one back for four hours, despite you asking four times. But, I mean, that only happened once...
I'm a very quiet and hassle free patient according to a lot of the nurses who've taken care of me, and so maybe that's why I got mildly neglected on occasion. I had one nurse tell me that she has, "Rachel, the quietest patient ever, and a ward full of people who need all the attention in the world". This was on my last day in Hammersmith, and I found her nursing style perfect.
She'd popped in sometime during the morning to introduce herself, come back a little while later to give me my pills, and then basically left me alone all day. Just the way I like it. I hate unnecessary bother and chatter, so the fact that she didn't keep coming in to see that I was alright was preferable.
Anyway, she came back into my room around 5pm, and apologised for not checking on me more often. I liked her; it would have been good to have more nurses like her.
I've had other nurses who take a different approach to their job. Drastically different.
One nurse who is particularly memorable was a woman who checked on me every 30-45 minutes. She made it her mission to find out what I'd eaten, how much I'd had to drink, and then looked concerned when I told her. She'd ask at 8am, as I'd just got up, how much I'd had to eat and drink, my answer would be "maybe half a cup of water", and she'd look confused and leave. Less than an hour later she'd be back, asking the same question, making the same face when I told her. And so on. Repeat. I once asked her if there was a problem, if I wasn't eating and drinking enough? But she just said that she liked to check as she went along. I mean, that's fair enough, but it was annoying.
Then you get the nurses who are in charge of the ward all shift. Generally, these nurses are tough and don't let the rest of the hospital push them about. One of these I had at Maidstone was absolutely fantastic. She was one of those people who has the perfect balance between hovering and helping. And when she did my injections they didn't hurt one bit.
You also get some nurses who are really chatty and some who don't really say anything. But no two are ever the same. Of course that's pretty obvious really, because everyone is unique, but in hospital you'll do anything to pass the time, including people watch.
The nurses that use humour to help their patients are the ones that give me life though. The ones who sing songs and make faces when they're giving you a bottle for your urine sample, the ones who laugh when you tell them that the doctors are being too vague, the ones who have proper conversations on a normal human level.
Throughout all my time in the hospitals I've stayed in, I've only ever had one person try to help me with religion. I am not religious, in fact I'd class myself as an atheist. I don't disrespect anyone who is religious, everyone is entitled to their own beliefs, but this guy was incessant. He took my blood pressure and then proceeded to ask if I was religious. It was kind of out of the blue and so for a moment I didn't say anything, but finally I shook my head and said, "you?"
Turns out he'd been a Priest before training as a nurse. We ended up having a really long conversation about God and Jesus and healing, and how faith can help you get through something. The part that I couldn't help but focus on though, was when he said, "God can help you through this, you just have to believe he'll help". Well, naturally I responded with, "But why would he do this to someone in the first place?"
I think he had a minor internal struggle at that moment, because it was a long time before he answered me. And his answer was, "We cannot know why God does what he does, he is supreme".
Well, that just doesn't cut the mustard for me, sir. Sorry.
We parted ways with him telling me to google "Jesus healing stories".
Needless to say I haven't.
I apologise if any of that seems disrespectful, I don't mean it to be. You are perfectly within your rights to believe whatever you want, just don't try to make me believe it.
If anyone reading is a nurse, or health professional, etc, I salute you, because you do something I could never do.
These nurses and doctors work for hours and hours at a time. Nurses work from 8am to 7.30pm, and then the night nurses work 7.30pm until 8am. That's a ridiculous amount of time for someone to be at work, and how they stay alert on their feet that whole time is a wonder to me...
One of my doctors had been working since 8am I believe, went home at 4pm and was then back at 6pm for the night shift. And the whole time she was friendly. She went out of her way to write me various letters and get me the information I needed. Hands down my favourite doctor at Hammersmith. She was a delight.
Being discharged from hospital isn't as smooth as you might think. Or maybe it is, depending on what you expect from the NHS. I expect the NHS to be slow. You should too.
The doctors, naturally, are the only people who can discharge you, apart from yourself. They can't make you have treatment anymore than they can make you stay in hospital, so if you choose to walk out, they can't physically stop you. They can use all the tricks and advise in the book to persuade you that stay, and they will, but they can't force you to do anything.
For example, one of my doctors hinted at me possibly having an endoscopy, just a couple of days before I was discharged. I told her that I'd had one before and I hated it, and I would not do it again. She was clearly disappointed, but she didn't push the matter.
So, on the day you're discharged, the doctors will come and do their usual rounds. That's when they will tell you that they're happy for you to go home that day.
Brilliant news, right! Time to go home! Time to call your Dad, or Mum, or whoever, and get a lift home!
Wrong!
It's time to wait! There's still lots to be done. For me, this included taking a final blood sample, but that was done almost immediately after I was told I could go home. The usual things that need to be done are send off prescriptions to the pharmacy and a discharge letter. These are both things that the doctors will deal with, but it takes forever. The pharmacy will then take even longer. Hours and hours. I was told I could go home at around 1, maybe 2 o'clock, but my medications and discharge letter didn't arrive until 8.30pm.
In all honesty, it didn't really matter that it took so long this time, as Dad wasn't able to come and pick me up until late anyway, but on most occasions it means that people just end up waiting and waiting.
I've been discharged before and given no indication of how long it might take, and had to phone people at the last second. It makes it difficult for the person who you've asked to take you home, as they end up waiting around all day for you to let them know when you're ready. But, then as soon as you get back, it doesn't really matter anymore, how long you've been waiting. Because, you have your bed, and your food, and your home comforts.
It's strange to be home, after almost three weeks trapped inside, and not having people do everything for you. I'm not saying that I expect my family to bend over backwards and ring a bell when dinner is ready, but they are being very supportive and helping me where they can. It's definitely going to take a bit of adjustment.
It's surprising how much muscle you lose whilst sitting around, even for a short amount of time, and so I'm not particularly strong at the moment. My legs shake as I walk down the stairs, because I'm not used to how they work, so it took my an exceptionally long time to get down to my kitchen this morning.
I had a shower, made myself some toast, had my pills and sat down. That's enough exertion for today! It was a long morning, guys, but I made it through.
When you have CVID, your life kind of revolves around the infusions. Or it should do, when you're well and healthy as you can be. During my Hammersmith stay I had some IVIG, so I need to find out when my next home infusion should be.
There's still a long way to go, and I'm using the whole positive thinking effect to make the pills work (not sure if this is a thing), I will have hospital appointments galore in the following months, but home. Home for the third time in three weeks. Perhaps it'll stick this time.
The first day I came home, the 5th July, that first Wednesday, I ended up rushing my rat, Scout, to the vets. I was crying, terrified it would be a one way trip, because his breathing was awful, and he'd lost a lot of weight for his size. Luckily, the vet wanted to give him a chance. She gave him fluids and antibiotics, just like my first weekend's treatment in hospital, and we went home. My sister very kindly gave him his meds whilst I was readmitted into hospital. I'm now convinced that he is the rat version of me, and was sympathising by developing the same sort of sickness. He's now a lot better, just like I am, so I'm taking that as a good sign.
And since I've started eating again, my weight is coming back... I truly won't miss the hospital food though, regardless of the fact that Hammersmith's food was actually edible this time around. There are only so many Roast Beef or Haddock and Chips ready meals you can have.
Having stayed in Kent hospitals, and stayed in/ visited many London hospitals, its clear to me that the money given to the NHS is higher in London. The food is better than in Kent, the equipment is better, and the nurses get paid more. I don't see this as fair, as I believe all hospitals should have access to the same sort of funding, and therefore equipment and food, but I doubt this will happen. Maidstone hospital were even having to reuse disposable blood pressure cuffs to save money. If they're making cuts on something like that, what else are they having to do?
I don't know how relevant this is, but another patient at Maidstone, who was around 10 years my senior, told me that more often than not young people are transferred to London. I mean? Maybe I'm just being paranoid, but are they wanting to give younger people better care, with a higher budget, than older people?
The youngest patient I saw at Maidstone was 19, and she had simply come in for a few hours to have a transfusion. Other than that, being 24 years old, I was the youngest. Everybody else was at least 60 and up. At Hammersmith, I didn't see any other patients because I was in a side room, so I can't vouch for anything, but it seems a little fishy.
Paranoia is a tricky thing.
Hope you enjoyed,
Rachel.
In hospital everything is done for you, pretty much, (save for the occasional injection).
You food is ordered in your room, your food is delivered to your table, your water is brought in two to three times a day, they'll make you tea and coffee if you want, they'll sort your meds, they'll do your blood pressure, the cleaners will clean your room and toilet; everything, to the best of their abilities, is done for you.
The nurses change your bed sheets every day, although there were a couple of days mine were missed. This isn't very nice when you've been sweating into the sheets over night and then have to sleep in them again the next.
What also isn't very nice is when they take your empty water jug and don't bring another full one back for four hours, despite you asking four times. But, I mean, that only happened once...
I'm a very quiet and hassle free patient according to a lot of the nurses who've taken care of me, and so maybe that's why I got mildly neglected on occasion. I had one nurse tell me that she has, "Rachel, the quietest patient ever, and a ward full of people who need all the attention in the world". This was on my last day in Hammersmith, and I found her nursing style perfect.
She'd popped in sometime during the morning to introduce herself, come back a little while later to give me my pills, and then basically left me alone all day. Just the way I like it. I hate unnecessary bother and chatter, so the fact that she didn't keep coming in to see that I was alright was preferable.
Anyway, she came back into my room around 5pm, and apologised for not checking on me more often. I liked her; it would have been good to have more nurses like her.
I've had other nurses who take a different approach to their job. Drastically different.
One nurse who is particularly memorable was a woman who checked on me every 30-45 minutes. She made it her mission to find out what I'd eaten, how much I'd had to drink, and then looked concerned when I told her. She'd ask at 8am, as I'd just got up, how much I'd had to eat and drink, my answer would be "maybe half a cup of water", and she'd look confused and leave. Less than an hour later she'd be back, asking the same question, making the same face when I told her. And so on. Repeat. I once asked her if there was a problem, if I wasn't eating and drinking enough? But she just said that she liked to check as she went along. I mean, that's fair enough, but it was annoying.
Then you get the nurses who are in charge of the ward all shift. Generally, these nurses are tough and don't let the rest of the hospital push them about. One of these I had at Maidstone was absolutely fantastic. She was one of those people who has the perfect balance between hovering and helping. And when she did my injections they didn't hurt one bit.
You also get some nurses who are really chatty and some who don't really say anything. But no two are ever the same. Of course that's pretty obvious really, because everyone is unique, but in hospital you'll do anything to pass the time, including people watch.
The nurses that use humour to help their patients are the ones that give me life though. The ones who sing songs and make faces when they're giving you a bottle for your urine sample, the ones who laugh when you tell them that the doctors are being too vague, the ones who have proper conversations on a normal human level.
Throughout all my time in the hospitals I've stayed in, I've only ever had one person try to help me with religion. I am not religious, in fact I'd class myself as an atheist. I don't disrespect anyone who is religious, everyone is entitled to their own beliefs, but this guy was incessant. He took my blood pressure and then proceeded to ask if I was religious. It was kind of out of the blue and so for a moment I didn't say anything, but finally I shook my head and said, "you?"
Turns out he'd been a Priest before training as a nurse. We ended up having a really long conversation about God and Jesus and healing, and how faith can help you get through something. The part that I couldn't help but focus on though, was when he said, "God can help you through this, you just have to believe he'll help". Well, naturally I responded with, "But why would he do this to someone in the first place?"
I think he had a minor internal struggle at that moment, because it was a long time before he answered me. And his answer was, "We cannot know why God does what he does, he is supreme".
Well, that just doesn't cut the mustard for me, sir. Sorry.
We parted ways with him telling me to google "Jesus healing stories".
Needless to say I haven't.
I apologise if any of that seems disrespectful, I don't mean it to be. You are perfectly within your rights to believe whatever you want, just don't try to make me believe it.
If anyone reading is a nurse, or health professional, etc, I salute you, because you do something I could never do.
These nurses and doctors work for hours and hours at a time. Nurses work from 8am to 7.30pm, and then the night nurses work 7.30pm until 8am. That's a ridiculous amount of time for someone to be at work, and how they stay alert on their feet that whole time is a wonder to me...
One of my doctors had been working since 8am I believe, went home at 4pm and was then back at 6pm for the night shift. And the whole time she was friendly. She went out of her way to write me various letters and get me the information I needed. Hands down my favourite doctor at Hammersmith. She was a delight.
Being discharged from hospital isn't as smooth as you might think. Or maybe it is, depending on what you expect from the NHS. I expect the NHS to be slow. You should too.
The doctors, naturally, are the only people who can discharge you, apart from yourself. They can't make you have treatment anymore than they can make you stay in hospital, so if you choose to walk out, they can't physically stop you. They can use all the tricks and advise in the book to persuade you that stay, and they will, but they can't force you to do anything.
For example, one of my doctors hinted at me possibly having an endoscopy, just a couple of days before I was discharged. I told her that I'd had one before and I hated it, and I would not do it again. She was clearly disappointed, but she didn't push the matter.
So, on the day you're discharged, the doctors will come and do their usual rounds. That's when they will tell you that they're happy for you to go home that day.
Brilliant news, right! Time to go home! Time to call your Dad, or Mum, or whoever, and get a lift home!
Wrong!
It's time to wait! There's still lots to be done. For me, this included taking a final blood sample, but that was done almost immediately after I was told I could go home. The usual things that need to be done are send off prescriptions to the pharmacy and a discharge letter. These are both things that the doctors will deal with, but it takes forever. The pharmacy will then take even longer. Hours and hours. I was told I could go home at around 1, maybe 2 o'clock, but my medications and discharge letter didn't arrive until 8.30pm.
In all honesty, it didn't really matter that it took so long this time, as Dad wasn't able to come and pick me up until late anyway, but on most occasions it means that people just end up waiting and waiting.
I've been discharged before and given no indication of how long it might take, and had to phone people at the last second. It makes it difficult for the person who you've asked to take you home, as they end up waiting around all day for you to let them know when you're ready. But, then as soon as you get back, it doesn't really matter anymore, how long you've been waiting. Because, you have your bed, and your food, and your home comforts.
It's strange to be home, after almost three weeks trapped inside, and not having people do everything for you. I'm not saying that I expect my family to bend over backwards and ring a bell when dinner is ready, but they are being very supportive and helping me where they can. It's definitely going to take a bit of adjustment.
It's surprising how much muscle you lose whilst sitting around, even for a short amount of time, and so I'm not particularly strong at the moment. My legs shake as I walk down the stairs, because I'm not used to how they work, so it took my an exceptionally long time to get down to my kitchen this morning.
I had a shower, made myself some toast, had my pills and sat down. That's enough exertion for today! It was a long morning, guys, but I made it through.
When you have CVID, your life kind of revolves around the infusions. Or it should do, when you're well and healthy as you can be. During my Hammersmith stay I had some IVIG, so I need to find out when my next home infusion should be.
There's still a long way to go, and I'm using the whole positive thinking effect to make the pills work (not sure if this is a thing), I will have hospital appointments galore in the following months, but home. Home for the third time in three weeks. Perhaps it'll stick this time.
The first day I came home, the 5th July, that first Wednesday, I ended up rushing my rat, Scout, to the vets. I was crying, terrified it would be a one way trip, because his breathing was awful, and he'd lost a lot of weight for his size. Luckily, the vet wanted to give him a chance. She gave him fluids and antibiotics, just like my first weekend's treatment in hospital, and we went home. My sister very kindly gave him his meds whilst I was readmitted into hospital. I'm now convinced that he is the rat version of me, and was sympathising by developing the same sort of sickness. He's now a lot better, just like I am, so I'm taking that as a good sign.
And since I've started eating again, my weight is coming back... I truly won't miss the hospital food though, regardless of the fact that Hammersmith's food was actually edible this time around. There are only so many Roast Beef or Haddock and Chips ready meals you can have.
Having stayed in Kent hospitals, and stayed in/ visited many London hospitals, its clear to me that the money given to the NHS is higher in London. The food is better than in Kent, the equipment is better, and the nurses get paid more. I don't see this as fair, as I believe all hospitals should have access to the same sort of funding, and therefore equipment and food, but I doubt this will happen. Maidstone hospital were even having to reuse disposable blood pressure cuffs to save money. If they're making cuts on something like that, what else are they having to do?
I don't know how relevant this is, but another patient at Maidstone, who was around 10 years my senior, told me that more often than not young people are transferred to London. I mean? Maybe I'm just being paranoid, but are they wanting to give younger people better care, with a higher budget, than older people?
The youngest patient I saw at Maidstone was 19, and she had simply come in for a few hours to have a transfusion. Other than that, being 24 years old, I was the youngest. Everybody else was at least 60 and up. At Hammersmith, I didn't see any other patients because I was in a side room, so I can't vouch for anything, but it seems a little fishy.
Paranoia is a tricky thing.
Hope you enjoyed,
Rachel.
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