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. Nurses Announcements Archive Article

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 11 pm, 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 ***, 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 MA

Thank you for sharing your experiences with us. As both a nurse and a patient I can tell you that I am in awe of people like yourself that can go through so much and still want to reach out and help others...bc that is exactly what your words have done...helped any of us who feel like our hard work goes unnoticed, or shows us that even the small things we can do for our patients have a huge impact. Thank you for reinforcing my conviction that nursing is the place I belong. I wish nothing but good health and happy future days ahead for you. Thanks again for your words!

This made me cry. I'm not a nurse, not even in Nursing School yet, but this motivated me to study that much harder. My son was diagnosed with Crohn's at age 11 and has not had any hospital stays (other than outpatient colonoscopy) but I am eternally grateful to the nurses who cared for and will care for him. Please know that your post gave me the energy to jump through all of the hoops I need to for admission, like Intro to Computers class (really? I'm using one right now.) Here's to good health in your future.

Thank you DBabz...now you're making me a bit teary! I also wish your son good and improved health in his future, and wish you luck with your education.

I really appreciate this "thank you" post. It's nice to know that the non-tasks things that we do mean so much. I'm sorry you have suffered so much with your health. I have taken care of patients like you and ofter wonder how they are doing after they are discharged. I wish you well and thank you for sharing.

I am so thankful you agreed to have a nursing student with you. I tell my mother and any one else that I know to take a student if they get the chance because nurses are overworked with high patient ratios. That student wants to do a good job and is there with you all day. Since nursing is my second career and I have had 14 surgeries as an adult I understand what it is like to be in pain waiting to get meds, or needing to go to the restroom but needing someone to come in and help. I know just how good an ice filled Diet Coke can taste! I know the reasoning behind waking you up at 1 am to take blood but I don't always agree because I can never sleep in hospitals so when I finally do get to sleep, the last thing I want or need is to be woken up. I understand that some nurses are burned out or are having a bad day but I don't always understand their attitudes. I love being a nurse. I love helping my clients. Sometimes I am so busy I can't spend as much time with them as I would like but I always take a moment to speak to them even if I am just running into their room to do some little thing. I am so glad you had someone to hold your hand. I know how scary it can be not knowing what is going to happen or if you are going to get better.

As as far as the Crohns goes. My brother has it too. He is doing well controlling his with his diet. He went low carb, high fat. Basically Paleo. By cutting out sugar, bad oils and processed foods, he has cut his attacks out almost completely. I am an endoscopy nurse so I advise my clients to try cutting out all sugar from their diets and see if that helps. Most report a lessening of symptoms. If you haven't tried that yet, you might give it a try.

Dear MA patient, Thank you SO MUCH for writing this!!! YOU are why I became a nurse. It is SO rare for anyone to say "thank you", let alone to say all that you did! After 25+ years at the bedside, sometimes I feel like giving up. Today YOU made it all worthwhile! God bless you!!

Having been a patient a couple of times in my life...family also have been patients...retired RN a couple of years ago...your words brought tears to my eyes. Thank you so very much!

Thank you for this. After nearly 20 years as a nurse I've left bedside care but am also thinking about leaving the field altogether. Thank you.

Specializes in Strictly school experience.

My belief in this is that if nurses voice a desire to leave the bedside, they should. Not every nurse is cut out for that role, but it doesn't mean they can't still be excellent nurses. Every nurse should explore and find their niche (if possible) so that they may do their best work. I left the bedside to be an Oncology Nurse Navigator, care coordinator...and never looked back.

Specializes in NICU, PICU, PCVICU and peds oncology.

AnonBoston, I could have been that nursing student who stayed with you during your drain placement. I'm a second-career nurse and the mom of a man whose life has been one serious health challenge after another. I made a conscious decision to become a nurse because of the excellent care we'd received from excellent nurses over the years. When I was on clinical one day, my assigned patient was a 20 year old woman, newly diagnosed with lupus; she was about the same age as my sister. In report we heard that this patient was "needy" which often is code for whiny and demanding. This young woman had never been sick a day in her life before. She was scheduled for a renal biopsy that day and it didn't take a magnifying glass to see she was terrified. I asked her if her mom or dad would be there with her and she said no, nobody could come. I thought about how I would want my sister to be cared for, how I'd want my son to be cared for, and I went with that. Having supported my son through many uncomfortable, or downright painful, situations I knew she needed simple but complete descriptions of what would happen to her, what she would feel and how long it would take. I went with her to radiology for her biopsy; I think there were some annoyed people in the room, but I ignored them. I sat on a stool near her head and out of the way. I kept up a stream of one-sided conversation and offered some distraction and relaxation suggestions while the biopsy was carried out. She flinched at one point as the biopsy needle was engaged, but otherwise managed to remain still and relatively calm. I'm sure she has no memory of me, but I will always remember her.

It costs nothing to be kind. It costs nothing but a few moments of our time to grab a warm blanket or top up a pitcher. Even in our pressure-cooker environment, those small acts of kindness are huge in their impact. In recent years I've found myself on the receiving end more than once, and I so appreciate every little extra my nurses and nursing attendants are able to provide. I'll tell you all something that I'm a little ashamed of, something that had a huge impact on my behaviour. Shortly after my son was born, my mother came to see us in the NICU. She said very little while she watched and listened to my interactions with my son's nurse. But once we'd left the bedside she turned to me and said, "Don't you ever say thank you? That nurse did an awful lot of explaining and helping, and you never once said thank you. I didn't raise you that way." She was absolutely right, and I was mortified. So to this day, nearly 33 years later, I hear her voice in my head EVERY DAY. I never fail to express my gratitude to those who do even the littlest thing to make my life easier. And I believe AnonBoston is doing the same for us here. I think we can all see what my mother saw. That those two little words mean an awful lot. So thank you, all of you, for doing what you do each day - no matter what your role. Your work matters.

Specializes in Family Practice, Mental Health.

Dear Patient in MA,

What an honor it must have been to be your nurse for even one shift. The "feels" that you weave in and out throughout your post are like lavender bath salts in a tub of deliciously warm water at the end of a long, grueling shift.

Your reaction to your experience is the reason why nurses strive for those extra interventions that are more than medicine.

Thank you for your insight, it's very touching.

I hope you are finished with this difficult chapter of Crohns.

Sincerely,

[emoji768]Nurse

Thank you. I am a student nurse who decided to go back to school (many years later) in a completely different field, wondering what I did to myself when I started nursing school. You just reminded me EXACTLY why I did this to myself.

Thanks for reminding me why I became a nurse.

Namaste.