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

Specializes in RETIRED Cath Lab/Cardiology/Radiology.

Thank you for writing this, and I wish we nurses had a magic wand that could make everything better.

I recently was hospitalized after a major (elective) surgery, and while my dh was Da Bomb for staying right there with me, when I walked the halls at night d/t insomnia my heart went out to other patients who didn't have a dh to stay with them. It is the nurses who help patients with pain (intensified at night, when loneliness gnaws) endure the long night.

It was the nurses who arranged for me to shower --- OH, BLESSED SHOWER!! -- within an hour of being transferred to the step-down unit (I have long hair and hadn't washed it since surgery, four days prior. Very UGH!!). I know it was two hours before their shift change, and they were busy. But they made it happen.

It was the nurses who let my dh stay in the room (he ended up checking out of the nearby hotel); they smuggled him sandwiches for late-night snacks. He DID help take care of me, tho!!

I have been a nurse over 40 years now, and I am still proud of being a nurse, especially after receiving such excellent care while hospitalized. I hope I am HALF as sharp, smart, skilled and caring as those who took care of me.

To the "MA patient" and all the nurses out there .... "DITTO"!!!! Thank you! There really isn't anything more that I can add to what "MA Patient" expressed. I have not been patient or have gone through nearly what you have, but last year I had surgery. I had to stay the night. I was feeling good and when I arrived in my room, I had a very young and "perky" nurse who greeted me. She helped getting me situated and I answered her questions. I also told her not to worry about me, I will be fine. I told her to take care of your other patients, I won't be a problem. She also "smiled" and commented that she will be in throughout the night to check on me. I didn't want to be a burden, since I was planning on sleeping through the night and leaving the next morning. Well, that did not happen. I was given soda after surgery when I asked for something to drink. She was surprised they allowed soda. About 9:45pm, I felt as if I was going to be sick to my stomach. I hesitated on pushing the button, but with me not able to get out of bed, I pushed it. She answered and I said "I felt as if I am going to get sick". No sooner she came through the door, I got sick. She was so calm, sweet, and was more concerned about me. I was scare I wasn't expecting that to take place and I didn't want to be a bother to anyone. She started to wrap up the covers and put them on the floor. Then she helped me get into the chair that was next to my bed. She needed to change everything. I felt horrible that I caused her to do something that wasn't pleasant. I wasn't able to move very well, but I helped her change my bed. I was able to remove the sheet from the bed and I asked her for a towel so I could wipe the bed down too. With her being so calm, she made me relax. She changed my bedding, cleaned up everything and helped me back to bed. I apologized and told her I wouldn't bother her again. Her personality was A+. Well, I had to bother her again. Around 1:30am, I woke up due to the IV machine beeping and I began feeling as if I was going to pass out. She heard the machine and came in. I told her that I wasn't feeling well and she noticed I was fanning myself. She took my BP and it dropped drastically. Again, she was calm. She left the room, but came right back and the house supervisor also came in. She started more fluids on me and was by my side for a good hour while my BP came back up. I felt horrible still, as I didn't want to be a bother and here, twice I needed her help. Again, her personality was amazing to this patient who hasn't been a patient for 23 years (the last time I gave birth) ... lol I rested that night and the next morning, she brought in her replacement for the day. I told her also, that I will be going home and she didn't need to worry about me. Well, it happened again! I felt as if I was going to pass out. I had my husband go get her. She came in, took my BP and it dropped even more than the middle of the night that she called the rapid assessment team. Needless to say, I had to stay one more night. The nurses I had were amazing. I didn't want to be a burden, but the were there by my side too! I wrote the CNO a letter indicating that I was lucky to have them as my nurses, but then I said "the hospital was the lucky one" for hiring nurses like them. Keeping a patient calm (this patient) meant the world to me. Thank you - Thank you - Thank you!

I will make a quick comment about my only negative experience with a few surgery nurses. I could hear a group of them talking about me, as I had a few "special" requests. The requests were not outrageous or unattainable, they were normal requests that are asked more than other patients realize. I'm also a very hard stick and yes, I understand that the Pre-op nurses start IV's all the time and probably could do it with their eyes closed and in their sleep! However, my MD personally came over and started it for me, as he draws my labs due to how hard of a stick I am. I didn't appreciate my pre-op nurse telling my MD to lie to me. Telling me that he could not find my vein and she would come in and start the IV. I'm glad he replied "I can handle this IV, I do them on a regular basis". The other situation that I didn't appreciate was when the anesthesiologist was telling me how he wanted me to sit when he started the epidural, etc. My MD was also going to be with me for the epidural and for the surgery. An OR nurses spoke up and said "you will place your head on my shoulders while Dr so and so does the epidural. I said "thank you, but my MD is here for that". If looks could kill, I would be dead. She didn't like that. I apologize if I was stepping on the two nurses toes with having someone who I was very comfortable with to start my IV and be there for me during the epidural and surgery. My point is, just because a patient has a request, doesn't mean they are a problem patient or they don't like you. A patient needs to be comfortable. Someone actually posted that patients are scared and could be in pain. When a patient or anyone is scared, the want something close to them to make them not so scared. When a patient is comfortable and calm, the procedure and recovery is better. I applaud all the nurses out there. Thank you again! Even though the two nurses that had a bit of an attitude before and during surgery, I would still want them as my pre-op nurse and the one during surgery. I'm glad my daughter is in nursing school! She will be in the shadows of many amazing nurses!

Specializes in Critical Care; Cardiac; Professional Development.

You are my favorite kind of patient.

i need to say...99% of the heartbreak that drove me away from the bedside came due to the way hospitals are now being run, not because of patients themselves. You deserve our time and attention and we want to give it. Please talk to your elected officials about improving nurse work conditions. Thank you so much for acknowledging us. That feels awesome.

Specializes in med/surg.

I am so glad you wrote this. I have been a nurse for quite some time. Mostly med-surg, but have bounced around different units. Unfortunately , I am ashamed to say that some of my colleges think they know whether a patient is in pain or not. This especially true of a patient who comes in frequently with a chronic condition like yours.

Everybody's pain is different, and everybody acts different when they are in pain. Not everyone cries, some people talk on the phone or pace. This is your body and you know when you need something and when they stick you too many times. I am the nurse that asks your pain level but also comes back when another pain med can be given and asks "do you need anything for pain" Don't be afraid to say "get a nurse from the ER or Critical care Unit to come I am a very hard stick" this can be done. These nurses often times put more IV's in and under stressful conditions and are more experienced. You might have to wait a little while but it could be worth it. When I started nursing there was an IV team. Many things have changed since those days as I am sure you are well aware.

Don't blame yourself for getting the general surgeon rather than a GI specialist, he should have known better and been more aseptic in his technique. Nobody wants to be in the hospital, especially for as long as you have. I hope you are feeling better. Thank you for opening the eyes and ears of nurses everywhere!

Thank you so much for reminding me Why I became a nurse. You see, I have Crohn's disease also. And although I wanted to be a nurse prior to being diagnosed, after I spent a month in the hospital, I knew it was where I belonged. It took many medications, years of being sick and a lot of determination to go back to school, but I did it. And I couldn't be happier. Yes... there are really hard days, but I have figured out how to reduce stress and listen to my body. Although I hope you never are hospitalized again, I hope that if you are, I am your nurse. I would be proud to be so. :)

Thank you very much for sharing :)

It's moments like this, that we really realize that as nurses, we are truly appreciated!!! Thanks you for your wonderful note of appreciation. It is sad that you had to go through so much pain and suffering, it was also nice to know that you had someone, a nurse, even family for support. Wishing you all the best for 2016.

Specializes in Burn, ICU.

Thank you so much for your thoughtful post! I wish you the very best as you continue healing! And in that light, I hope the following is completely irrelevant to you for the rest of your life, but figured I'd put it out there:

Regarding drawing blood cultures at 0100- in my hospital, when a patient newly meets "potential sepsis criteria" (2 or more of: high heart rate, high respiratory rate, high or very low white blood cell count, high temperature), we have to notify the MD and if there's no other discernable cause for the symptoms, we're expected to get blood cultures drawn and antibiotics started within a very short timeframe. (The cultures need to be drawn before the abx get started so we don't kill off the offending organism.) AND, the cultures--2 different sets--have to be drawn through the skin & not from a line like a PICC. So...it's possible that's why you had to endure it at such an unpleasant hour! (We also do re-draw cultures after several days of antibiotics to see whether they're working, and if that were the case there would be no reason I know of to do it at 0100 other than we draw most daily labs overnight anyway. They have to grow for a few days before producing final results, so it's not like the MD would be expecting to see them the next morning.)

But, again, I hope this is never information you have to think about for one more minute!

(Nurses- I know the sepsis criteria has just changed, but this post reflects the old standards. Not sure how our procedure is going to change.)

I am finding myself a bit overwhelmed at the reactions I've gotten to this post. It did not enter my mind that my thanking all of you, would turn into you all thanking me! What a wonderful circle of gratitude this has become, it's all coming back around to each of us. Being a nurse just strikes me as such a dedicated, un-selfish, and compassionate role to play in a world that is way too full of sickness and pain. It's a really personal situation you're suddenly thrown into with people you don't even know. And although I did have several awesome guy nurses, it was always a bit more comfortable to have another woman with me on a shift. Certain things happen that only another woman can truly understand, and most of the time that's all I need to say..."well, you're a woman too, you get it, right? It just feels kinda..." and getting the head nod back. They get it.

I realize a lot of this might sound a bit pretentious maybe, but it's just how I feel. It blows my mind that if I crap myself or throw up on the bed, two women with smiles and "it's okay"s will soon be along to take care of me and the mess I've just made. At my lowest, most embarrassed, freezing, sleep deprived, crying state...you're just there. The level of caring and compassion it takes to do this for people, to me is immeasurable.

So again thank you everyone for the circle of gratitude we have all created here, and for all of the comments. As I read them I was amazed at how much the internet can help total strangers reach each other on some fairly deep levels. You are all so kind to have replied.

Specializes in PCU.

Thank you so much for your Encouraging words! Thoughts like yours that are shared help us so much in our daily work. Praying for your continued health!

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.

I'm wondering if hospital policy explains this. Your IVs may not have actually "failed" every single time this happened, but the hospital policy may have dictated changing out peripheral IVs every 72-96 hours.

Another point: you mentioned getting a foley cath "while awake." That is actually standard unless the patient is having surgery and it can be started once the patient is sedated or fully "asleep." Hopefully your nurse was skilled and discomfort was minimized.

And finally: I'm so glad you had nurses who were able to stay by your side as requested on those occasions you described in your posts. But unfortunately, the nurse to patient ratios have become an increasingly severe problem. A nurse nowadays may really wish she could "stay by your side," but unfortunately, if she has too many other patients, she will not have that luxury. Trust me, that is just as frustrating to a caring nurse as it is to the patient.

You sound like you have been through a lot. I'm glad you got excellent care, I am grateful for your kind words about nurses, and I sincerely hope you are finished with these terrible exacerbations of your condition!!!!