Joy Full

After all these years working as a transplant nurse, it is still really fun taking care of patients who have received a new kidney, especially those from a living donor. Some patients have been on dialysis for years, going to the same center three times a week for several hours.  I love listening to them call their dialysis units to share the good news and hearing the excited shouts of jubilation on the other end of the line! We’ve had parents donate a kidney to their child, child to parent, siblings, friends, in-laws, church members, nieces, nephews, aunts, uncles, cousins, and co-workers.  It is the gift of life and is both incredible and humbling to witness.

After I received report from the recovery room nurse on my patient, a 71 year old lady who received a kidney from her daughter, I went to the daughter’s room to let her know her Mom was doing well and was on her way up. Even though she was in pain, her smile was beautiful when she heard the good news.

When my patient came to her room, I met her husband and another daughter while I got her settled and did an assessment. After telling her Mom she loved her, the daughter asked where her sister’s room was, and said, “I’ll be right back. There’s a whole bunch of us coming.”

Very soon the room was filled with one of the sweetest, kindest families I’ve ever met. The love in there was so palpable it was breath-taking. When we receive a patient with a new kidney, we are in their rooms almost continuously the first eight hours- taking vital signs, performing assessments and interventions, adjusting medicines and IV fluids; the family was so warm and welcoming, they made me feel like I was one of them.  Her sons were excited every time I emptied the urine from their Mom’s foley catheter and they saw how well the kidney was doing, asking “How much is it now?”

Later in the evening, the family went to get some food and make phone calls; only the husband remained, not wanting to leave his wife’s bedside. He spoke of how blessed he felt that each of their seven children was able to be with them for the surgery, and how although they had all been tested, it was only the one daughter that was the perfect donor candidate for her mother. He shared his faith in God with me, saying that his wife’s kidney function was only at 8% for months but she had been spared having to go through dialysis prior to transplant.

As I worked with her, my patient searched with her eyes for her husband if he stepped out of her line of vision for even a second and he continued to stand at her bedside. I offered to pull the recliner closer to her, saying it must have been a long day and asking if he wanted to rest. He beamed and said, “No. There’s been no such thing as time today. Only joy!”

 

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Aftershocks

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This piece is dark and I feel like I should almost put out a disclaimer to anyone who might read it. Writing is cathartic; that’s what I needed.

I’ve been staring at this screen for a long time and still don’t know how to start. Though I can’t see myself doing anything else, sometimes being a nurse sucks. It just does. I know I should be sharing the good sides of nursing, and there are many- the honor of working with people who let you in at the most intimate times of their lives, being witness to miracles, seeing patients who were on the brink of death recover fully- but that’s not what this post is about. Today the well’s run a little dry and I’m praying for rain soon. It’ll come. It always does. Maybe even tomorrow.

Recently, we had a patient with end-stage lung disease. He’d been on our unit a few weeks, and we all had gotten to know him well. Early in the morning, his nurse called me to say he was having distress. We got him past the event with medications and a respiratory treatment; he had declined so much since I’d seen him last.

He asked me to stay with him after the others left so I pulled a chair up to his bed. He took my hand, looked into my eyes, and asked, “What’s going to happen to me?”

I said, “You’re very sick, Mr. Gandy. I know you’ve been speaking with your doctors about your options.” They had been discussing hospice and comfort measures but Mr. Gandy hadn’t made a decision yet.

“Yeah, I’ve been talking to them. I want to talk to you now. Please tell me.” He must have read my mind because the next words out of his mouth were, “I know you’re not a doctor and that’s ok. It’s just you and me in this room and you’ve been doing this a long time. Please tell me what’s going to happen.”

“If what happened this morning happens again, or if you get any worse, we’ll have to intubate you. If we do that, we may not be able to get you off the ventilator.” Saying those words out loud was awful. I don’t want to try to imagine how his hearing them must have felt.

He asked, “How long do I have? Is it weeks? Days? I’m not gonna make it out of the hospital, am I?” I answered honestly. His eyes were filled with tears; he squeezed my hand and said, “Thank you.” He asked me to call his brother for him so I did.

When the doctor came in, I told him what Mr. Gandy and I had been talking about. We discussed the progression of his disease and his prognosis with him. When asked about his goals, Mr. Gandy said, “My goal, what I want, is to be able to go home…but I know that’s not realistic.” What do you say to that? Sometimes, often really, there just are no words. He gave us an out when he said, “Tell me about comfort care.”

Mr. Gandy ultimately made the decision to be a DNR and opted for comfort measures only. He asked me to call his family again and I did. That too was tough.

I am very fortunate to have the best, most compassionate coworkers in the world. Some of the nurses got Mr. Gandy’s nurse to take a break and took over the care of her other patients. They also pitched in to perform some of my tasks so I could stay with the patient. I stayed with him until he died about an hour later.

We try everything we can to bring comfort to those suffering-giving medicines and treatments; most of the time it helps. Other times, we have to hope that our presence makes a difference.

My ego is terrible and I think I should be able to fix everything myself. It gets in the way a lot and is unfair to others. One of my neighbors is a really close friend and is like a younger brother. His daughter is my favorite of all the neighborhood kids (https://awhitlow2.wordpress.com/2014/02/28/remembering-the-wheeeeee-for-hannah/). We were talking about Hannah one day, and Jeff said, “I’m just trying to make sure she doesn’t grow up to be an a-hole.” You’re successful, Dad, because she’s definitely not! Keeping his words in mind and striving hard to not be an a-hole either, I reached out to one of my brothers and one of my sisters about struggling with this death. Talking to them helped immensely.

Now I’m just waiting on the rain…

The Bedside Table and Rollercoaster Rides

Being a witness to true, pure, selfless, and unconditional love is so powerful that it can transform the soul and change a heart forever; I was blessed to have seen that kind of love a few days ago with one of my patients and her husband. God must have known my heart needed to be filled as He showed me the special bond between a brother and his little sister just the very next day.

Jo is a woman in her 60’s who has been a patient on our unit off and on for the past few months. She has a big heart, a dry sense of humor, and is well-loved by her husband, Robert, and their three adult children. Her liver is failing fast as she waits for a transplant and none of us know how much time she has left. Whatever her course may be, Robert will be right there by her side.

When I first entered Jo’s room that early morning just as the sun was beginning to make its appearance above the dark blue clouds, she was sleeping and Robert was sitting in a chair beside her bed. He was fighting tears as shared with me how scared he was because she’d become so sick very quickly. His voice cracked when he said, “Just a few months ago, she could do everything for herself. She was normal. And now…it’s just…I’m afraid of losing her.” I longed for the right words to say, something comforting…anything really… but sometimes there are no words and none came at that moment. All I could do was nod as we shared the silence that followed.

After I’d seen my other patients, I went back into Jo’s room. Robert had lifted her from the bed to the chair, and I found them sitting across from each other sharing breakfast on the battered hospital bedside table. Our tables are used for many things- a place to set medicine cups, water pitchers, procedure trays. This was the first time I’d seen one used for a breakfast date with a couple who’d been married 40 years and it was such a beautiful sight! A true gentleman, Robert made sure his bride was seated so she could look out the big window and have the best view. He told Jo, “I wish I had some flowers so you’d have something pretty to look at,” to which she replied, “I like looking at you.”

Jo left later that day to have a diagnostic test performed, and Robert finally laid down on the couch to rest. When she returned and I heard him snoring, I tried to be quiet as we moved her from the stretcher to the bed, knowing how tired he must be. As soon as he heard his wife’s sweet voice, though, he immediately awoke and jumped up to help. I wanted so badly to tell him, “It’s okay, we’ve got her,” but then remembered the words of a coworker far wiser than me caring for another patient near the end of life who said, “I used to think I knew what was best for patients and their families. I had good intentions but I was wrong. It’s not for us to decide what’s most important to them; it’s up to us just to honor whatever that is.” It was a gift that day to hear their lively banter during Jo’s good moments and see the gentleness between them during her bad ones- the kind of love that develops from spending a lifetime together.

Will is a 20 year old young man who received a liver transplant after having developed an autoimmune disorder. He and his parents were so sweet and engaging; I loved getting to know them all. Will had become really ill right after he started college and had spent the past year living back at home. He has an older sister and brother who were able to take turns being with him at his sickest when his parents had to work. He also has a little sister. Because their home is out of state, his siblings had not yet been able to see him since his surgery but were making the trip the following weekend.

When the doctors made their rounds, Will’s mom asked them all the “important” questions- about medicines, follow-up appointments, wound care, etc., then said, “ I just have one more question. I promised his 14 year old sister I’d ask this. Will he be able to ride roller coasters again?” I’ve never seen the surgeon smile wider than he did just then! He was grinning when he said,” Yes. Not right now! But please tell her ‘yes.’ In a few months, he can definitely ride roller coasters again.’ We loved hearing that a little sister’s top concern was that her brother could do fun things again… with her.

Will was discharged later that day. I waited with him while his parents left to load the car and he told me how excited he was to see the rest of his family. He said, “I really love all of my siblings. My little sister and I are especially close and I can’t wait to see her!”

I have a shameful secret, one that’s very hard to admit. For much of my life when I saw two people in love, I was happy for them, but there was always the whiny and very selfish thought, “Why not me? Why can’t I have that kind of love?” There are a myriad of reasons. I’ve made poor choices and have lost myself before in relationships. I’m not social. I like people pretty well but am so much better with dogs. I’m stubborn. Fortunately I have a few good friends who know me well and love me anyway. They keep me grounded, ask the hard questions, and yell at me if I isolate too much. I may never have the kind of love that Jo and Robert share, and that’s ok. I’m grateful to God that they have it and all the selfish thoughts are gone for good.

Recently while my brother and I were talking about our father, he brought up some thoughts about my previous relationships with men. He’s always conscious about being tactful (his sister should try to be more like him in that way) and he was afraid of being hurtful but sometimes when you see someone you love making bad decisions for a long enough period of time, the words you’ve held back just come tumbling out. I’m so glad he did. It was a relief for both of us and has brought us even closer together.

I have two brothers. Though we didn’t grow up together, we entered each others’ lives when we were supposed to and with Divine timing. They show their love in so many of the wonderful ways that brothers do- through their words, actions, and the examples they set- and I couldn’t be more thankful to have them in my life. In addition, they have both gone above and beyond in unique ways: one has promised to intervene if I become completely crazy (it’s a slippery slope) and the other has promised to pluck unwanted facial hair if I’m ever in a coma! Both vows are of high value and equal importance.

For My Co-workers…with love

I think about you when I get home at night. I see the ways you impact our patients’ lives and because of that you also greatly impact my own.  Your teamwork and clinical expertise inspire me, your kindness humbles me, and your great compassion often moves me to tears.  There are no words adequate enough to express the gratitude I have in my heart for each of you.

This is what I hear your patients say to you and about you:

  1. “You really care,”
  2. “I wasn’t always easy to be around. You showed me love anyway.”
  3. “I’ll never forget you.”
  4. “This isn’t just a job to you.”
  5. “You make a difference.”
  6. “I know I’m not your only patient, but you make me feel like I am.”
  7. “You explain everything to me in a way I can understand.”
  8. “You really listened to me. I knew something was wrong and you got me what I needed.”
  9. “You made my pain go away.”
  10. “I was scared. More scared than I’ve ever been before. You stayed with me. That made it better.”
  11. “You treat me like a real person, not just a patient. You make me laugh and that helps a lot.”
  12. “You’ll always be family to me.”
  13. “You saved my life. Thank you.”
  14. “I love you.”

The Cumulative Effect-for Jeff

Our hospital chaplain and I were talking earlier that morning about the effect seeing human suffering has on caregivers. Over time, it can change a person; seeing so much pain, fear, and death wears you down to the point that even the most joyous times (like watching a patient you never expected to make it walk out of the hospital) are just a little less fulfilling. Fortunately, for most of us, these feelings are cyclical. The pain subsides, the joy returns, and we go on…but you have to wonder about the cumulative effect. Who would we be if we didn’t witness all the suffering?

Yesterday one of our patients died. We tried to save her and we couldn’t. Every single time we have a code, I hope that it will be the last one I ever see…odds are it won’t be.

I was on the opposite end of the unit with a couple of the other nurses when we heard the code alarm. We rushed to the patient’s room where someone opening the code cart and CPR was in progress. As I took over chest compressions (I’m usually the one in that role first just because I’m tall), I thought of the many times I’ve had my hands on someone’s chest doing those same compressions and I prayed for the lady’s heart to start beating again on its own. It didn’t.

As charge nurse, by default I have to be the nurse leader during a code until we have a designated physician leader present; I don’t want to be the leader. It’s usually for only a couple of minutes but it feels like forever. I have to make sure someone is manning the cart and defibrillator, someone else is getting defibrillator pads on the patient, that we have working IVs, someone is recording, we have a backboard under the patient, and that someone is getting the meds ready.

When one of the young doctors took over compressions, I helped a nurse ventilate the patient while the anesthesia MD was preparing to intubate. I saw the panic in her face as she struggled with the ambu-bag initially then the relief as she got it right and heard me say, “Yes, sweetheart, just like that.” I’ve been in codes where people yell and it never helps anyone.

Real-life codes are not like the ones depicted on television. We are jammed together tightly around the patient and we are covered in sweat that is not just our own. Regardless of the outcome, everyone is shaken at the end of a code and there are some tears shed. We take it personally when a patient dies.

Dr. S was our physician leader; not only did he run the code perfectly, he was very calm and set the tone for everyone else. We gave numerous rounds of meds and performed CPR continuously. Everyone in that room worked hard to save the lady’s life. Several times, Dr. S had four of us do a final pulse check before he “called” the code; if one of us even thought we felt a pulse, we began the whole cycle again. After 46 minutes, there was nothing. He had to announce the time of death and one family was changed forever.

While we prepared for the patient’s family to see her, our chaplain met with her sons. I see death only occasionally; he shares others’ grief weekly- not just the patients and their families, but also our staff. Afterward, he updated me on the family while I was charting, then said he wanted to check on the nurse whose patient had just died one last time. As I watched him take the lonely walk down the then eerily quiet hallway, I thought to myself “But who’s gonna check on you, buddy?”

To Our Patients and Their Families- From a Transplant Nurse

We are often humbled by the grace and courage you display. We remember your words many years later as you affect us so deeply and we are honored that you allow us into your lives at the most intimate times. Because of you, we love harder, smile wider, and appreciate the little/big things in life that we used to take for granted. Thank you for that gift. You are our greatest teachers.
We don’t want you to be in pain and we feel frustrated when we can’t make it better.
When we have been off for a few days, then return to work and find out you were discharged home, it makes us smile and we wish we had been there to say goodbye.
We get excited when we see your labs before we enter your room knowing that ‘new’ kidney is working well and are eager to share that news with you. We also dread entering your room when your labs indicate no signs of improvement knowing we will see your disappointment.
Sometimes we think about you when we get home, wondering if you are doing better, and cannot help calling to check on you. Sometimes, too, we try not to think of you as we are reminded of our own mortality and that frightens us.
We are moved when we hear you speak with sincere gratitude about your donor and the donor’s family. We want to hear about how transplant will change your life and what you are looking forward to the most- walking your daughter down the aisle on her wedding day, going shopping with your friends without having to carry an oxygen tank, looking into your newborn grandchild’s eyes and feeling him grasp your finger with his tiny hand for the first time.
We love having you come back later to visit and giving us the opportunity to see you feeling well and enjoying life. You give us hope and that hope inspires our care of future patients.

A Tale of Two Patients

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Sometimes we pray for signs from God giving us guidance, asking Him to let us know we are on the right path as we struggle with our own inadequate decisions. My answer was given when a bible literally slammed into my chest.

Patient One, Sam:

Sam lived on our transplant unit for about six months some fifteen years ago awaiting a new heart to replace his own. He had dilated cardiomyopathy (in essence, a giant and floppy heart) and was dependent on two continuous IV infusions to keep that heart beating, in addition to a slew of oral medications. A magnanimous man in his 40’s, Sam was the kind of person others cannot forget. Always wearing a smile and having a great sense of humor, he was a born-again Christian who had remarried; he had one little boy from that second marriage in addition to several grown children from his younger and wilder days. I was his nurse most days I worked.

Passing the time at a hospital is challenging, particularly when a patient is there for a much extended stay. Sam built model cars during his days there. His family would bring him a couple of new ones every weekend, and he worked on them throughout the week. He’d sneak to the nearest stairwell, pulling his IV pole with him, to apply paint to his latest car; when administration happened to visit our unit, the other nurses and I would cover for him and deny that we had any knowledge whatsoever of just where that lingering scent of spray-paint was coming from.

As much as I loved Sam, I was very uncomfortable when he spoke of his faith and of Jesus; it was a time in my life I just wasn’t ready to hear about it. He would start talking and I’d try to change the subject. He would push, and I’d resist. He eventually won… I’m so glad.

When a heart finally became available for Sam after all those months of waiting, he decided against having a transplant. He was discharged shortly afterwards and died at home with his family by his side. Before leaving the hospital, Sam gave me a bible. I keep it at work, and have shared it several times throughout the years with patients and their families who have expressed the wish that they had a bible to read.

Patient Two, Lindsey:

Lindsey is a 24 year old beautiful girl that we have known since she received a liver transplant at the age of thirteen. Since that time, she has spent at least half of her life with us in the hospital. Most of her Christmases and birthdays have been at the hospital with our staff as her only visitors. We have seen her through multiple surgeries and recoveries, loads of new hairstyles, and a particularly difficult period of smart-aleck teenage attitude.

The last major surgery Lindsey underwent was about three years ago, and it nearly killed her. She spent weeks in ICU, hooked to machines, with no one at her bedside other than our staff. It is a miracle that she survived.

Lindsey’s mother visits once a month, on the first of the month, so that her daughter can sign over her disability and welfare checks to her. The only times that the visits last longer than 20 minutes is when the woman falls asleep on Lindsey’s couch in her hospital room. Lindsey’s siblings are the same way- they drop by to get their sister’s car keys.

The Moment:

I had a break from being charge nurse, and was caring for my own small group of patients when Lindsey’s nurse approached me and said, “Lindsey is crying her eyeballs out, and I don’t know how to help her.” When I went to her, Lindsey was crying hard enough to barely catch her breath. I held her as she sobbed that her family didn’t care about her- she’d finally had enough and had understandably reached the point of utter despair and loneliness.

We spoke of faith and how much God loves her. When she said that she wished she had remembered to bring her bible, I offered her mine-relief washed over her.

When I opened my locker, the bible immediately slipped quickly off the top shelf and hit me so hard in the chest that it made a loud thud! Two of my coworkers were eating lunch in the break room, and jumped at the sound, asking, “What was that?” They remembered Sam with great fondness from all those years ago, and we all shared a laugh as I briefly explained what was going on… Sam always knew I needed to be pushed a little (or a lot!)

Lindsey and I held the bible in our hands; when we opened it, we saw Psalm 40 and read aloud together.

A little side-note here… Just a few days before, my sister Mary had shared part of Psalm 40 with us as she offered an Easter prayer for our family. It was a beautiful prayer of love, hope, remembrance, and gratitude that felt like a new beginning of healing for our family.

Amazing how perfect God’s timing is…