A Patient's Perspective - To all of the Nurses at allnurses.com
Today, I feel moved to write to you as someone who has spent no time being a nurse, and far too much time being a patient. There are times I've read some of the forum posts here, and I think to myself "oh, if only they knew how I feel"... So here, both for myself in some way, and for any nurse reading this, is my humble attempt at trying to explain my thoughts about you, and what you do.
To all of the Nurses at AllNurses.com,
Of course I should start with some basic background info. I have dealt with Crohn's disease since 1989 when I was 17 years old. I've had some rough times over the years, but nothing prepared me for what happened in 2013 after I turned 40, and once again at the end of 2015. In 2013 I had my second bowel resection...my first mistake here was choosing a general surgeon. I know, what the hell was I thinking? I wanted to be closer to home, that's why. And it nearly cost me my life.
What proceeded were multiple pockets of internal infection, as I was given no antibiotics, and developed an ileus (hole) at the resection site. I spent the next two months in the hospital healing from this. Countless failed IV's to the point that both of my arms were covered in bruises from hand to elbow. One failed picc line. Three pigtail drains jammed into my body in places that I would never have imagined. TPN for a month. An IV pole with 8 different pumps on it, and a massive, open, infected surgical wound with a stoma bag to catch the infection. This was just in April of 2013.
Then in Sept. 2015 I started feeling the symptoms of what I thought was just a routine Crohn's flare-up. I thought okay, I'll call my GI, we'll give some additional meds a shot and I'll be fine. Instead, the pain increased, and my temp shot up to almost 103. I could barely move one night, called an ambulance, and was admitted to the hospital, again, for two months (Dec. 2015 and most of Jan. 2016). No surgery this time, but again, I had pockets of massive internal infections caused by my flared-up, and apparently still very ulcerated and leaky bowel. And much of the same process followed as it did the first time...multiple failed IV's, two picc lines, and four drain tubes this time. Some of the nurses even recognized me from three years before.
So that's the gist of why I am "the patient" so often spoken of. And having spent SO much time among you all, I have learned a lot, observed a lot, and became thankful for so much more.
On a random Tuesday afternoon, while my spouse is at work so I can have health insurance and I am basically alone and fearing for my life all day, I am told that my first abscess drain will be inserted down in the Radiology department, and they'll be here in a few minutes to transport me. The following thoughts race through my head....umm, okay, I know I need that, but what does it entail? Will I be awake? I have high pain tolerance, but how much is this projected to hurt? Will they give me a 3-count before they jam it through? Will the area be numbed? Is there a box of tissues anywhere..?". I was scared out of my mind, and for that day, I just happened to have a student nurse with me. Just one girl, assigned to me for the day, making sure I was all good. I wept to her, a young woman 15-20 years younger than me, like a baby. I had already been through a lot of things by that point...other hospitalizations over the years, lots of pain...but nothing prepared me for the severity of this. It was unfamiliar territory for me, and when you don't know what to expect, that's scary as hell.
What I'm getting at is, that student nurse listened to me, stayed by my side handing me tissues, and held my hand through the entire drain insertion. She got me through one of the scariest times of my life when my loved ones could not be there. And I had just met her that morning.
Another day...yet another failed IV. They usually last 3 days. Then the vein collapses, and I get stuck 4 or 5 more times before a picc line is decided upon. Now, when I say I have no problems with needles, that's the truth. But when they're digging in, moving around, in delicate areas, repeatedly, it gets to be a bit much. Yes, I'm what you all call a "hard stick". I'm sorry. Blame my grandmother, who also had this problem...
But what I'm getting at here is that there was one nurse in particular who was consistently present with me while "they" were trying to locate a vein in my arm. Having also been severely lacking in sleep (because you guys don't let us) I finally lost my sh-t. I looked to this nurse who was there, almost at the end of her shift at 11pm, and said "Could you please stay with me until this is done?", and she smiled and told me everything was going to be okay, put her arm around my head so I wouldn't look, and just held me like that until the end. While I'm crying and just a pile of despondency in the bed.
And during those long overnights...that pretty much means: up all night because "vitals", and a blood culture for some reason ordered for 1 a.m., plus I need my pain meds (the self-administer button is gone now and I need it given through the picc line), my commode is about to overflow, etc. But let me say something about all of this seemingly routine stuff.
I read someone here the other day post "this isn't what I expected, am I just here to deliver pain meds all day?" and I thought it was sad that she didn't realize what an important part of the patient's day that is. Are you kidding? We need that syringe you just walked down the hall to get. We look forward to feeling no pain for a few hours, and that it relaxes us for a little while. It's huge! And you do that for us. Not to mention, when I request my morphine at 2 a.m., it's kinda nice to have someone to say hello to at that hour. Because I'm awake, and you're awake...so hey, how are you getting through the night? Shift over at 7?...Yeah, I'm hangin' in there, thanks for the fresh apple juice and being here for me."
There were countless other procedures as well; a Foley catheter while wiiiide awake, as well as an NG tube, and an eventual 6 more drain tubes. And the entire time, in the middle of my fear and uncertainty, there was a nurse at my side. Holding my hand telling me I was going to be okay. And I was...and I am...and I would have never gotten through it without my nurses. Do you have any idea how goooood it feels to have a newly iced water or juice on your table? It's like Heaven in a cup, and you just brought it to me! Usually right away (haha) because I always add "when you get a minute" to every request I make). But YOU brought it to me, my wonderful, awesome, kicka-s nurse.
So I guess with seeing so many unhappy nurses on here, and my experiences being so recent, I wanted to post a thank you to all of you for what you do. You guide total strangers like me through the scariest moments we've ever faced. Pain meds help that...iced water helps...or whatever other little mundane creature comfort we might ask you to get for us. It's all a collective experience, and I've always tried my best to say my pleases and thank you's, and not be a pain in the ass, and be appreciative no matter how uncomfortable or sick I feel.
Please know, all of you wonderful, beautiful souls who take care of people like me....we thank you, we appreciate you, and we couldn't have gotten through it without you.
With love and gratitude,
A patient in MALast edit by Joe V on Jan 11, '18Mar 12, '16I am so sorry for everything you are going through.I recognize now how chronic illness or long term pain can mess with the mind .We are often so focused on just getting through the day that we ignore that aspect of care.I'm glad there are people around you who do focus on giving you that support.You remind me of an old friend,long gone now ,who was a nurse.She got to the point where she refused everything until drugs were on board.She did not have Crohn's but she did have GI issues.After the first couple of NG tube insertions she dug her heels in an no-one got near her without some demerol first.And she made them wait until the drugs took effect.Be a strong advocate for yourself...They can use a numbing gel for the foley catheters if it's not contraindicated,ask for it.Glad you have a port for access,missed sticks hurt.Good luckMar 12, '16Thank you for this heartfelt post. I think we do forget sometimes that being a kind, cheerful caregiver--even when performing seemingly mundane tasks--makes all the difference.Mar 12, '16All of those reasons you mention are the things I love about being a nurse. When everyone is talking about getting away from the bedside and moving into management or informatics I cringe. For me and probably many others, making a difference is why I nurse. I'm sorry about your ongoing health struggle. Chronic disease is tough!Mar 12, '16It's not even about being kind and cheerful...speaking for myself, if a nurse doesn't seem in the greatest mood, I just figure she's seen some sh-t that day. We're all human. I'm still going to say "thank you".
And I appreciate the comments here. As of right now I am picc and tube-free, and on the way to healing. I'd say I'm at around 75%. Thank you all againLast edit by AnonBoston on Mar 12, '16 : Reason: forgot somethingMar 12, '16The majority of us nurses do what we do because giving that moment of comfort makes the rest all worthwhile. Thank you for your post and wishing you well.Mar 12, '16"A patient is a person in a strange environment on an involuntary basis going through one of the most unpleasant experiences of his life with people not of his own choosing."
I don't know who wrote this but it is true.Mar 15, '16I'm glad you're on the road to recovery. Hopefully no detours this time, right?
Thanks for your really sweet thoughts. A lot of us on here are burned out from the mostly clueless administration and the few frequent repeating entitled patients with attitudes. It is patients like you, who have real problems and real needs, without the demanding and demeaning approach, who help us remember that what we do is worthwhile.Mar 15, '16What a lovely note, it brought tears to my eyes. I graduate in two months and have loved caring for my patients as a student and doing even the mundane tasks!Mar 16, '16Quote from canigraduateI don't mean to toot my own horn here, but I literally cannot wrap my brain around the concept of an entitled and demeaning approach from a patient. Why would anyone want to treat their nurses with anything but respect and gratitude? You are there for us at our worst moments. Just because I am in pain and feel awful and scared, does not give me the right to treat other people like crap.I'm glad you're on the road to recovery. Hopefully no detours this time, right?
Thanks for your really sweet thoughts. A lot of us on here are burned out from the mostly clueless administration and the few frequent repeating entitled patients with attitudes. It is patients like you, who have real problems and real needs, without the demanding and demeaning approach, who help us remember that what we do is worthwhile.
Okay, that sounded a bit self-congratulatory...but I really don't get it. The way I see it, the more respect you show your nurses, the more aware and motivated to help you they're going to be. Not only that, but you deserve our respect. You're emptying my commode..."oh, wow, I'm really sorry, that's so gross...agghhh...thank you, that couldn't have been pleasant" And I get a smile in return, "It's okay!"
Amazing.Mar 16, '16You have been through SO much, and i'm sorry you have. But appreciative patients and family members are part of what keeps me going - well, and when i actually make a difference for someone too. I hope you finish recovering, and soon. And thanks for reminding us of the importance of some of our 'small' tasks, too.Mar 16, '16It's long been my contention that it is an honour to care for my patients. Even when I was having a bad day, I hope my patients knew how much I cared for them and what an honour it is to nurse them when they are at their worst. I always did and still do, try to take the extra step to make them comfortable, like providing a warm blanket to put around their arm so their veins are more visible to help with IV starts. Or closing the door so they can sleep. Little things that mean a lot.
Currently I'm in the best nursing job a seasoned nurse could ever ask for. I have the "luxury" of time and being able to spend as much of it as my patient needs. So many of them are afraid or their physicians never told them they were anemic or explained what it is. Or told them that they had options. I hold their hand. I hug them if they want it. Most of them need it and therefore accept it.
I wish you well in your recovery and appreciate hearing your side of it. It certainly makes us pause and think.Mar 16, '16There was a time when we would regularly get little gestures of thanks from patients and/or their families but that has become the exception rather than the rule. I remember when our bulletin board would be covered with Christmas cards from former patients; now were it not for the cards sent by sister units, there'd be nothing on the bulletin boards but hospital news.
I'm not looking to have my ass kissed but the small gestures make a huge difference to those having to do this mostly thankless job day in and day out. Why the slippage? Perhaps it's because the management is demanding we do more with fewer staffers. We no longer have the time to do what we used to so regularly do when I was fresh out of school. As we do less for the patient, they do less for us. It's become more of just a straight business relationship, in the same way you don't tip the cashiers at McDonald's.
Your letter isn't the first I've read expressing thoughts like yours. It's just that it's been a really long time since I last read such words. I used to be proud to be a registered nurse; now I'm just glad I've retired. My total sympathy to those I left behind.
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