Laurilyn Bailey’s Story

Congenital Heart Disease Survivor, CO

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Laurilyn's Story

What no one wants me to say.  
 

I am sorry. I had the wind knocked out of me, or maybe that was my heart, and at the moment I have no funny anecdotes to share. I have been down this road once before and am not thrilled to have to go down it again. Five years have passed and it is not long enough.

An open letter to my cardiologist and future caregivers,

You know just how bad things were for me medically following my last open heart, you were there. You and my surgeon navigated my medical disaster with skill and perseverance, and I am here today as a direct result of your watchful eye. In the past, I’ve tried to tell people about the pain I experienced but I’m always met with blank stares and sympathetic nods of persons who cannot really relate. I tried to tell my prior surgeon about the pain and lack of pain control only to be met with similar appreciating nods and a look that implied I should be grateful I survived, like perhaps I didn’t grasp the gravity of my near death experience. I let it go. Focused on the future and put it behind me. Now I am told that another surgery is not far off in the distance. How can I possibly convey my fears without sounding like the ungrateful, melodramatic patient? I am putting you in my place. Then perhaps you might understand what I feel when you tell me I will need to repeat my open heart.

 
You awaken on the ventilator and struggle to allow the machine to breathe its shallow breaths into your non-collapsed lung. You spy the clock across from your bed and recognize that the surgery did not go as planned. You were told you were not going to remember this machine or this feeling for the rest of your life, but you will. You close your eyes because of searing pain in your right shoulder and you focus on the surprisingly steady sound of your heartbeat: you are alive. You take inventory of your extremities and cerebral functioning to rule out a stroke and other complications with which you are unfortunately familiar.

Your arms are restrained, as you were told they would be, so you wouldn’t interfere with the ventilator immediately following surgery. You have no means of communicating with your caregivers. You were apprehensive of this prior to surgery so you devised a plan to use sign language to communicate. You frantically fingerspell a word when a nurse grabs your one free hand. She pats your hand and says she is sorry, she doesn’t know sign language, and tells you to try to relax. Had she understood, she would have known you needed suctioning. You can feel a mucus plug somewhere deep in your throat. Is it a blood clot? You can feel it slowly trying to interfere with your already meager, rationed breath. You force yourself to remain calm and not fight the shallow half breath of the ventilator. Be compliant. Get off the machine. Every morsel of your body wants to suck in more air, but you are not allowed nor are you capable. After more than an hour, you are instructed to try to cough to help facilitate the removal of your breathing tube, but you find you are unable to forcibly cough and the pain is unbearable in your shoulder with any movement or effort.

The pain remains constant and unrelenting through the next day. You begin to suspect that perhaps your right arm had been erroneously broken during surgery, as any effort to move it at the shoulder is excruciating. You want someone to amputate your whole arm to eliminate that kind of pain. At least then the pain would begin to subside and you would heal. There are no mirrors, and you cannot move sufficiently to inspect your incisions, so the pain then leads you to believe you had a full sternal thoracotomy, instead of the minimally invasive approach that had been planned. You are in heart failure and have a collapsed lung, and any effort to verbally communicate is exhausting. You question your nurse in very short labored phrases about the procedure but, unfortunately, he does not know what approach was used and has to check your incisions, and even then is still not able to tell you definitively.

You keep your eyes closed and try not to move so that you might not make the pain worse. Every effort is focused on taking the next breath and feeling the beat of your heart, not disturbing the pain. Each and every one of your shallow, feeble breaths is painful. You are on a morphine drip but this does nothing other than make you nauseated and groggy, with enormous untouched pain. Because your heart is barely functioning, you have to undergo a battery of stat tests. In one test, your bed is wheeled to the cath lab to determine whether you had suffered an attack. Several persons transfer you to and from your bed by pulling on the sheet beneath you and sliding you onto a firm table. The pain is exquisite and agonizing. It feels like a knife piercing through bone in your shoulder and upper chest and you wail for a moment, though you don’t have the breath to explain or the energy to continue. You cannot fathom anything in this life that is more painful than these transfers. You wait to pass out from pain, but it does not happen. Tears flow from your eyes, but you cannot wipe them away. You try to tell everyone within earshot about your unrelenting pain, but you do not have the energy to explain in more than few quiet sentence fragments. They assist you with your morphine drip and you close your eyes. Try not to move. Focus on your heartbeat. You are alive.

During the second night, you vomit on yourself. You have so much pain with any movement, the only thing you can do is to turn your head to the side to throw up. You are grateful that at least the vomit managed to clear the plug from your airway. Was it a clot? You can’t lift your head to check. The vomit lands on the left side of your face, and in your hair and on your pillow. You are unable to yell for help because you are too weak and still struggle to take a breath, only able to softly mutter a few words at a time. The call button is surely on your bedside somewhere but damned if you know where. With your left hand taped to a board to protect your IV and searing pain with any movement of your right arm, you cannot reach for it anyway. You wait for a nurse to walk by and try to call “help,” which comes out only slightly louder than a hoarse whisper. She doesn’t hear you. You wait for someone to pass again and try to call at exactly the right moment so that your pathetic attempt to speak might be heard. Every effort to call is both exhausting and painful, and you don’t have the strength or lung capacity to make an effective sound. Tears flow from pain and from helplessness, but there is too much pain to cry. You can’t wipe the tears away because of pain in your right arm and your left hand entrapment. You are exhausted. You conclude it is better to lie there and not aggravate the pain than to continue to try to call for help. After three unsuccessful attempts to summon help, your final attempt manages to attract the attention of a night nurse. You strategically time your phrasing to coincide with your limited breath, “I threw up.” She wipes the bulk of the mess away from your face for which you are grateful, but she does not bother to clean your pillow or your hair. You lie in your stank, rancid vomit until the next day. You are overcome with exhaustion and pain, and you do not care. When your day nurse finally finds you, she is appalled and apologetically tends to you and cleans your bed.

Your nurses offer you ice chips and politely place them on your bedside table directly in front of you. Your mouth feels like cotton as you have not had any food or water since the night before your surgery. The ice chips look lovely, but as your left palm and wrist remain secured to a 2 by 4, and your right arm is unusable on account of excruciating pain, they are utterly unattainable. You are also told to use a breathing apparatus to improve your lung function. This is also left in front of you on your bedside table, and you are unable to reach it. Even when the device is left on your stomach, you are unable to lift your right arm high enough to bring the device to your mouth. You close your eyes and try to block out the pain. You think of your young children and your family and you are grateful they are not here to see you with so much pain.

The third day, you tell your nurse in short, labored breaths you want to see the anesthesiologist. He refuses. He tells you they are in a meeting. All of them. He tells you that you need less things (i.e. drains/tubes/etc.), not more of them. He tells you his wife is the charge nurse of the ICU, and you realize you have no one to complain to. You have no energy to fight or to be your own advocate, and the unbearable pain continues. You silently curse him. You hate him for independently deeming you unworthy of some form of relief. That night you start to refuse the morphine drip, which is only succeeding in making you nauseated, and you have dry heaved multiple times. Each time is like a fresh wound to your shoulder and upper chest. It would be better to only have the pain without the nausea.

The next day, a different nurse suggests they try a different pain medication. Only after this happens do you finally start to have any form of effective pain control. Your pain is instantly reduced by half, and you finally begin to survive instead of merely exist. You improve but you are angry and you will not forget. You had zero pain control for three long days after open heart surgery.

You move forward and you repress. Put this behind you. You tell yourself never again. You look into your children’s eyes and you fight to be well. You embrace life and do your best to do everything right for your health. You lace up your running shoes and you walk. You run. You swim. You lift weights. Never again.

 
This is not your story, it’s mine. These are my nightmares. I am told I will need to go under the knife once again. I cannot go through that inhuman level of pain and utter helplessness again. How do I find the strength to embrace another surgery? How do I guarantee that I will not be this helpless again and that I will be cared for with the same compassion you would have for yourself or your wife, your mother, your child? I close my eyes. I breathe. I look at my growing children, who are still far too young to have their mother go through this again. I lace up my shoes and I keep moving. Please help me to not be so helpless.

(*Originally posted in my blog at http://mom-runner.com)

 

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