The other side of the cot

In the past two years, Ive had quite a bit of experience being on the other side of the cot.  Instead of being the nurse, Ive been the one needing a nurse.  Its provided a unique perspective.

I went in yesterday for a cardiac stress test.  When I had my tilt table test, my EKG showed that my heart is not getting enough oxygen when it is working hard.  The point of the stress test was to see how significant this ischemia, or lack of blood flow, was.  The doctor wanted me to have it done in Cleveland when I was there last summer, but I needed to get home to my kids.  I assumed, that based on the Cleveland doctors recommendation, I would have no issues doing this very routine test locally.  Boy, was I wrong.  My cardiologist here has been less then supportive or helpful.  My primary agreed to order but then the insurance wouldnt cover.  Long story short, Ive fought for 11 months to get this test ordered and covered by insurance.  Meanwhile, Ive spent every day dealing with chest pain and not knowing the significance of the pain.  So, when we finally got the OK to proceed with the test, I was elated.  This test was going to provide the information for us to know how to proceed.

I spent the day before the test fasting from all of my favorite things…coffee, chocolate, wine…I was to stop eating altogether after 12am.  I arrived to my 9am appointment hungry, foggy and a little weak from not eating, but so excited to get it over with.  “This is gong to give us so much closure.” I told my husband on the walk in.  We waited for about 45 minutes before they called my name to go back.  They wouldnt let Darren go with me.  I can handle myself.  Im the nurse.  But, he is my protector.  I always struggle leaving him in the waiting room.  After yesterday, Im sorry that I did.

The nurse who came for me seemed kind, though quiet.  Before she introduced herself, she ushered me into a bathroom where I was told to leave a urine specimen for a pregnancy test.  “Well, how do you do” I thought to myself.  Pregnancy test is standard procedure but you could at least say hello before you ask me to leave you my bodily fluids.  Whatever, must be a busy day, I rationalized.

After leaving my “deposit”, we rushed into another room.  At this point the nurse introduced herself and made some small talk.  I was beginning to relax now.

“I’ll need to place and IV and inject you with this radioactive isotope called cardiolite”

“Im sorry, what?  I called ahead and got a list of medications that were to be used so I could clear them with my lactation consultant.  This med as not discussed.”

“Oh well, its the med we are going to use.  You are nursing?”

“Yes, Im nursing.  We ordered this test, specifically,  because its supposed to be compatible for nursing.”

“Oh, well, I need to give you this cardiolite and you will have to pump and dump for 48 hours.”

“Well, I need this test, so I suppose we will go ahead and I will just figure it out.”

The nurse injected the medication and ushered me to the locker room.  There, she instructed me to change and put on a gown.  I asked if I could keep my bra.  She said no, it would interfere with the EKG leads.  I explained how I had chosen a bra that fit so that the leads would not be affected and asked her to look.  She said the bra had to go.  “But, Im nursing”, I tried to explain.  “It will be painful and not to mention messy, to run on a treadmill with no bra”.  She asserted again that the bra had to go.  “Once you are dressed, go across the hall to the waiting room.  I’ll meet you there”.  I did as I was told and put on the gown.  It was about 13 sizes too big and even when tied, didnt cover much.  I searched the locker room cabinets for a blanket or another gown to be used as a robe, but came up short.  I was freezing, hands and feet turning purple from the cold.

I covered myself as best as I could and headed across the hall to the waiting room.  I was shocked and embarrassed to see the waiting room was co-ed.  A bare chested man looked up as I entered the room trying my best to conceal the naked under my gown.  I sat in that waiting room shivering for over an hour.  The man next to me tried to make small talk.  I think he knew I was uncomfortable.  “What do you think of our new President” he asked.  I tried my best to answer his questions and smile, but inside, the cold was beginning to hurt.  People with POTS struggle to normalize and maintain their body temperature.  The more I shivered, the more I hurt.  A migraine set in.  Black spots and flashing lights clouding my vision.  I felt a drip on my belly and realized, I was now leaking milk.  It had already been six hours since I had been with my baby.  My body was reminding me.  I shifted in my chair trying to keep my chest covered.  “You are awful young to have heart trouble arent you?” The man next to me asserted.  I smiled and sighed.  “Yes, I sure am.”

Finally, after an hour the nurse came to get me.  “Come this way please.”  So we walked briskly down the hall, with me fighting the gown and trying to discretely hold my breasts the entire way.  How awkward.  I gave up my dignity in hospitals a long time ago, but there is no reason to completely reject modesty!

“You will lay here.” The nurse said.  Now, Im familiar enough with how stress tests work, that I could guess that we were here to get resting images before the exercise portion of the test.  But I was really looking for some explanation.  I tried asking a few questions, both for my understanding and so I could also understand better for future patients.  The nurse answered my questions, but with brief remarks.  I climbed up onto the Gamma camera table and laid down as I was instructed.  No further instructions were given.  The camera closed in around me, so that I really couldnt see any of the room.  I wondered if the nurse was still there or if I had been left alone?  I laid on the table for close to 15 minutes.  Then a man stepped into my peripheral vision and said the scan was over and he would be taking me for my next step of the test.  “Oh!” he remarked as the table slid out from under the machine.  “You are very young!  We dont often get young people here.”  “I am young.”  I said back.  I wish people understood how deep that comment cuts.  Thank you for reminding me how young and also broken I am.

He took me down the hall and left me in a room.  I was told a nurse would be there soon.  The room was empty.  No magazines, no TV, no window.  Just me and my thoughts.  I wasnt excited about the prospect of staring at a blank wall, but I was happy to be in a room alone.  Finally I could curl up in a ball and try to get warm without worrying about flashing the world.  “Im so, so cold.” was the only thought I could muster.

The next face that I saw, introduced herself as Jennifer.  Right away, I knew she was a good one.  “Hello, my name is—Oh my girlfriend, you look like you are freezing!  Im going to get warm blankets be right back.” Not a minute later she came back to the room with three warm blankets.  She wrapped me up tighter than a new born baby.  I could feel my heart rate calm.  The pain in my head subsiding.  Relief.

Jennifer took a moment and explained the next steps of the procedure to me.  She checked my arm band.  She asked about my medical history.  She started hooking me up to the EKG leads while simultaneously maintaining eye contact as I spoke and working to keep me as covered as possible.  She was calm.  She moved quickly, but did not seem rushed.  She was empathetic and warm.  I felt so at ease.

Suddenly, just as she placed the last EKG lead, we were interrupted by the male nurse who had brought me to Jennifer.  He barged into the room without knocking.  Make that person number 392 who have seen my breasts today.  “STOP!  STOP WHAT YOU ARE DOING!  WE CANT PROCEED!”  Jennifer and I looked at him confused.  He went on to explain, that because I am nursing, the isotope they gave took up in my breast tissue and the heart couldnt be visualized.  The images we had taken before were “non diagnostic” and we could not proceed with the test.

I stood there shocked and confused.  I began to tear up.  I looked at the male nurse and I said “Ive waited a year for this test.  Is there something else we can do?”  The male nurse explained this and that…all things I know are hogwash we nurses tell patients when we know we have screwed up and want to blame the situation on some sort of red tape over sight.  His lips were moving but I wasnt listening.  I could already see I had lost this battle.  He wasnt going to advocate for me.  “Ill call the doctor and see what we can do”  he said.  Before I could even process, there I was again, alone in that room.  No clock, no window.  I wondered what time it was.  I wanted to ask them to call my husband and update him, but i realized I had no call light.  I had noticed on my way down the hall that there was no nursing station in sight.  The halls were oddly empty and quiet.  I decided to settle back into my chair and just wait.

As I had a moment to reflect, the tears started falling.  The test I had fought so hard for, the test that was supposed to tell me if my heart was in danger, would not be happening.  My baby is home, sick, and I know he will want to nurse when he sees me.  I cant.  Im literally radioactive.  The thought of him screaming for me and not being able to meet his needs made my stomach churn.  I felt alone, I felt discouraged, I felt betrayed.

Then I heard it.  Male nurse is on the phone assumingly talking with the doctor.  I hear him.  He is laughing.  He is making light of my situation.  Telling the doctor “its no big deal, we can just schedule her another day for another test”.  I hear him, on his way back down the hall discussing his lunch plans with another co-worker.  Its been 13 hours since my last meal.  My misfortune is his early and extended lunch period.  The nurses are all crowded outside my door now  They are discussing “what to do with me”.  I hear the male nurse says something along the lines of “I dont want to deal with her.  She’s crying”.  Another nurse says she doesnt want to be involved.  “I dont want to tell her”.

When the door opens, its a new face.  I knew right away, what this face meant.  Defeat.  This person explained that “because I was lactating”.  She explained it like this whole fiasco was my fault.  She explained how the isotope is actually used in breast imaging so its not surprise that we couldnt see the heart because of the breast tissue.  All of what she told me was very true, but she explained it in a manner that made it seem to be my fault.  She told me that the test would not be done, and that I would have to go home.  The way she spoke to me was in such a way that I felt that they thought I was going to make some kind of a scene.   She talked to me as if I was a threat.  Like I might shoot the place up if I didnt get my way.  I was so confused as to why I was being treated like this.  I had not said three words all day.  I had not been cross.  I had not done anything.  I felt violated.  I was angry  But still, I said nothing.  I asked for my husband to be called so he knew why I was taking so long.  So I could tell him what happened.  They refused to call him.  They left alone again int he room with no windows or clock.

The tears were flowing freely now.  All i could think about what how I had failed.  I should have done more research.  I should have known.  I shouldnt have allowed them to inject me.  Ive failed my baby.  How will I ever find out if my heart is ok?!  How do I even start to get answers??? I started worrying about the day of work that Darren missed and how he would have to miss more days so I could see the doctor to get a new plan and hopefully schedule new tests.  I was worried about the bills that would follow for the tests that werent done.  I was worried about how missed days of work would effect our finances.

Jennifer came back into the room.  She was quiet this time.  Her eyes were understanding.  She acknowledged my frustration.  She took the EKG pads off, little burn marks left behind from my tape allergy.  She retied my gown.  The patient advocate lady was in the doorway now rushing her to get done with me.  “I know its against protocol but just take her IV out here so we can get her going”  She said.  Jennifer was quiet and dilligent.  I could tell she felt like she was between a rock and a hard place.  No more words were spoken.  She took the IV out and handed it to the patient advocate for proper disposal.  It was made clear, through the yellings down the hall, that “That thing is radioactive and needs to go in the lead sharps”.  I know they were right, but yelling about it down the hall made me feel dirty and unclean.  I wanted to say it out loud, but I refrained. “Just shut up and do the task, we dont need a play by play.”

Jennifer escorted me back to the locker room.  She told me to get dressed and “have a good day”.   Thats a funny joke, huh.  Me, Im going home to my sick baby that I cant hold or nurse and Im going to listen to him scream at me while my husband tries to get him to sleep and the other children run wild through the house.  Sounds fun doesnt it??  I put my clothes back on and opened the locker room door.  I wanted to just leave so bad.  But there I was again, alone in the hallway, uncertain of which way was out.  After wandering for a few minutes I found a nurse and asked which way to go.  She never looked up from her computer, just pointed to the door.  The tears started falling again as I pushed open that door.

When you are in the moment, you dont realize you are being bullied.  You are just trying to survive.  The scenes are overwhelming.  The information, the papers to sign, the feelings of vulnerability…even for a seasoned nurse, like myself, being on the other side of the cot is overwhelming.  There isnt a feeling quite like being 100% at someone elses direction and mercy.  You dont have rights.  You do what you are told and how you are told to do it.  You trust the medical staff to have your best interest and safety in mind.  You rely on them to be your advocate.

24 hours have passed now, and Ive done quite a bit of reflecting on yesterdays events.  No one checked my arm band.  I could have been anyone.  I could have been completely in the wrong place.  No one asked for a medical history.  No one took vitals.  No one checked my arm band before delivering radioactive materials into my body.  The nurse who administered the medication obviously did not know that it is also used for breast imaging and that it would not be an appropriate drug for a lactating mother, or she would have never administered the drug.  The test would have been stopped or altered before the patient was unnecessarily radiated.  The nurse could have advocated for me to keep my bra and not only made me more comfortable, but also would have more appropriately met my biological needs.  The nurse could have offered a warm blanket.  The nurse could have instructed me how to call her for help if needed.  The nurse could have explained the procedure to me and told me what to expect. So many very small changed could have altered the experience completely.

Nurses, I know you are busy, understaffed, overworked, tired, haggard.  I know you probably havent peed since your shift started.  I know.  Im one of you.  I give a whole lot of grace because I know how it is.  But being on the other side, I see now, how crucial it is, to take the moments.  Tell your patient your name.  This simple process of introducing yourself and explaining to the patient what cares you will be offering can literally make or break the encounter.  Be mindful of your words.  I know that a twisted sense of humor is what gets you through the day.  This job is hard and laughter is crucial to survival.  Listen, you want to make jokes, I give you that permission.  But for gracious sakes, dont do it outside of my door!  Take it to the freaking break room!  Nurses,  you are the font lines.  If you dont advocate for your patients, no one will.  You have the power to change situations.  You have the power to get things accomplished.  Speak up.  Tell that doctor what you need and how you would like to accomplish it.  You are not the doctors slave.  You are an educated individual with first degree knowledge of a patients situational needs.  ADVOCATE.  Yes, it takes more time and more effort.  Yes, you may get shot down or yelled at.  But I can tell you, form both sides of that cot.  The moment you affect change, everyone wins.  Nurses, those pesky protocols that we get so frustrated at because they eat up our time, they are in place for a reason.  Asking me my name and date of birth 8 times a day, every time you pass pills, seems silly, but you know what?  It keeps both the patient and the nurse accountable.  Please, please, please follow protocol.  Check arm bands.  Know about every med you are administering.

Yesterday was pretty awful.  The good news is, the nurse gave incorrect lactation information and it was safe to nurse my baby after 6 hours.  I had to call the lactation staff at another hospital to verify that information after doing a lengthy review of the literature myself.  So, I was able to come home and nurse my sick baby.  By the time I was able to get to a restaurant for food and water  I was almost too weak to walk in myself.  If the nurses yesterday had known about POTS, they would have know that fasting from water that long was dangerous.  I still dont know if my heart is ok.  I have no idea what my next step will be to figure that out.  What I do know, I I will be following up with the managers and Sisters about my treatment yesterday.  Not because I want to get people in trouble or want revenge, but because what I experienced was medical bullying.  I will be the voice of change and the advocate for all of those to come after me.  I hear you patients, I hear you and I stand with you, from both sides of the cot.

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Here we go again…

God doesnt always choose to speak in a thundering voice, but when He does, you can be sure that it is to prepare you for what is to come.

These past three years have been filled with struggle, but God have been undeniably present.  He has chosen to speak to me in His thundering voice many times.  And every time, it has been followed by a command to take a step of faith.

Last year, after a year of being too ill to work for over a year, Darren and I were staring financial ruin in the face.  It was obvious that I had to find a job, but I felt so called to stay home with my kids.  We prayed for God to provide a solution that made His will clear.  He did.  I was given a job that I have no memory of applying for, that allows me to work from home and make a very decent amount of money.  Darren also took a step of faith starting a new career and also taking a sizable pay cut to do so.  This week when Darren and I received our W-2 statements, we were speechless to see, that in 6 months, we made more income then we did the entire previous year!  This extra income has allowed us to pay down almost all of our very sizable medical debt.  6 very large hospital bills paid off.  Just one more to go and we are on track to have that paid off very soon.

Earlier this week, I shared how God had used a verse in scripture that spoke directly to my need.  After a month of frequent passing out and awful air hunger, I read:

“They will walk and not faint”

I knew, because I had heard Gods voice so clearly, that a call to faith was coming.

Earlier this month I had some lab work done in preparation to see a new doctor.  This doctor has POTS herself, and says she has found remission.  I decided to see her in hope that she may have something different to offer.  I looked up the lab work results online.

I have Lyme Disease.

This is really good news and its also the absolute last thing I wanted to hear.  I devoted the last two years of my life to figuring out why I was so sick.  I researched hours and hours at a time.  I lost myself in the work.  The quest owned me in many ways.  But, I figured it out and I sought out doctors who could help and they confirmed the diagnosis. I cant even explain the peace I felt as that Cleveland Clinic doctor typed POTS and EDS 3 in my chart making it official.  After two years, I had answers.  Closure.

Getting officially diagnosed allowed me the ability to stop searching and focus on wellness.  I had accepted my normal and was actively finding ways to live fully despite the many limitations.

But now, now there is a new diagnosis.  The good news is, there are treatment possibilities.  The bad news is, they are poorly studied and not often covered by insurance.  Mainstream medicine does not recognize chronic Lyme even though we can test for it and easily see that it exists.

Ive really been struggling with this information for a few days.  I am gearing up for battle.  I know I will again need to become an expert in my own health.  A researcher.  But, I do not want to loose myself in the task.  Ive worked so hard to find myself these last few months and Ive been good, so good.  My marriage is good, my self worth is growing, our finances are stable, Im so much more calm.  Wellness is an investment.  I know that I want to be well, but I also dont want to send my family back into financial insecurity to achieve it.  There must be balance.

“They will walk and not faint”

Perhaps this phrase wasnt given to me just as a sign of hope.  Perhaps, its a prophesy for my life.  Maybe, God is telling me what I have to look forward to?  Perhaps, God is calling me to see, that He has been orchestrating this all along.  He knows our needs before we do.  He knew we needed new jobs, not only to survive, but to survive what was coming.  He knew I needed a time of recuperation before I could be ready to handle another diagnosis.  God is orchestrating all of this and simply asking me to trust Him.

I’ll admit, the last three days I have felt fear and doubt and emotions I dont even have a name for.  I dont want to fight any more.  I am so weary of this fight.  But I am promised renewed strength in exchange for my faith.

So, Im choosing to trust.  Will you pray for me?  Not just for wellness, but for balance.  To know when to research and when to take a break.  To know how to financially invest and when to say no.   There is a good chance that I may get sick again as we work to kill the lyme.  There is a good chance I may get very sick.  But it will be temporary.  Will you pray for strength for me and for my family?  There is a possibility that I have passed this infection to Levi and that may be a very big piece of his puzzle as well.  So I have to go through this to know what will work for him.  Im praying hard that this new information is what we have been missing.  Im also afraid to let myself dream of a day when I am well.  I feel very pulled in every direction and its so hard to process a coherent thought.  Please pray for clarity.

My appointment with the new doctor is Feb 16.  At this appointment we will discuss the labs in detail and begin to put together a plan for what treatment will look like.  This will not be a quick thing.  Its a process, to say the least.  Thankfully, I had considered the possibility of chronic lyme in the past and already have a pretty good understanding of the condition.  Between now and February, Im going to do nothing but continue to be committed to taking good care of myself.  The best way to prepare for battle is to go into it as a strong soldier.

Here we go again…