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Book Excerpt |
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A Diabetic’s Personal Journey Through an Islet Cell Transplant Written by: Donna Marcelissen
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“One Step Up From A Lab Rat” |
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Price: $10.00 |
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Illustrated by: Wendy Hueston, huestondesign.com Excerpt: As part of a human trial in a research protocol “One Step Up From a Lab Rat” is unequivocally what you are. Human trials are a select group of people who will follow in the research process once animal trials are successfully completed, and federal government approval has been granted to proceed. At times there are no clear answers when issues arise, and they can be just as puzzling to the research team, as they are a frightening concern to the patient. Participating is a leap of faith, since no previous data is available to base your decision on, and there are no guarantees for success. This compilation of events leads up to a pinnacle moment in history for myself, and any person inflicted with brittle (uncontrollable) diabetes. With little hope for a personal future, I received what everyone struggling with labile (erratic) blood sugars would consider an elusive gift: complete glycemic control (euglycemia). As a result of years of research and under the watchful eye of a skeptical audience, I was selected to be part of a world-renowned research project in Edmonton, Canada at a state-of-the-art-facility, Alberta’s University Hospital. It wasn’t an easy journey, in fact anything but. Beaten down by years of illness despite premium care and an in-depth knowledge of the disease, diabetes had affected my ability to think clearly, to reason, to believe that my state of health could change so dramatically. This disease had thrust me into the depths of some of the most serious complications a doctor will threaten that an individual can face. Dealing with severe neuropathies (damage to nerve endings) of the stomach, chest, hands and legs; 23 eye surgeries, days away from complete blindness; and the single most deadly complication that many people with diabetes succumb to--hypoglycemic unawareness--which can result in death, a condition referred to as “dead in bed syndrome”. I wasn’t living, I was existing, and yet when offered the opportunity to be part of the Edmonton Protocol I was hesitant to proceed. I had little energy left to fight and each step of the journey toward saving my life presented many roadblocks. I questioned my strength, and I doubted my ability. There were many points in time when I didn’t think I could go on… but I did, and I won. I won’t be noble and say I allowed my body to be used for science for the good of mankind--as my humanitarian duty. Rather, I did it because I was scared for myself, for Mark and for Rea. Here is a brief glimpse into just a small part of my experience with ground-breaking research: “Rea is finally home from university and getting back into her regular social life. As usual, I waited until the security system was activated, knowing she was home safe, before attempting to go to sleep. But I couldn’t sleep. It was midnight. I could hear her whispering and giggling while on the phone. Lying there alone with my thoughts, I was feeling hungry. My stomach had only allowed me to eat yogurt today, but that is okay. I am accustomed to the sensation of hunger. I really no longer crave different foods, so perhaps I was longing for any sensation that would take my mind off my other thoughts. Sometimes time alone contemplating the isolation of one’s situation isn’t such a good thing. My brain and body were exhausted. I listened to Mark breathing beside me. Many nights I would discover that I was unconsciously counting the seconds between his inhaling and exhaling. At times I tried to align my breathing with his to put me to sleep. But tonight it didn’t work. In the uncomfortable silence, a shrill sound jolted me upright. The phone was ringing. I didn’t attempt to get it; it was after 1:00 a.m. I usually don’t pick up “middle of the night” calls. My business is listed in the directory under “Esthetics” which is right beside the page for “Escorts”. I often receive calls from inebriated men with odd requests—and then there are some who even leave messages! For some reason, I decided to go downstairs, so as not to wake Mark or Rea, and check the message. “Donna this is (the Principal Investigator) of the Islet Cell Transplant Program. We are trying to reach you, Donna. We have an organ which we think will be suitable for you and we would like you to come out as soon as possible.” I am gasping for air as I listen to the message. A distinct, accented male voice, a voice that had conjured up negative feelings of late, was delivering the most anticipated news of my lifetime. I wasn’t angry with him anymore! I attempted to speak loudly, waking Mark and Rea, “It’s time! They want me to come out!” Half-nervous and definitely excited, my voice quivered as I clamored to get the words out. Mark and Rea, dazed and confused, came running downstairs as I was listening to the second message from the transplant coordinator. “Donna, where are you? The doctor is trying to reach you. It is 1:00 your time, you should be in bed.” They have been trying every way possible to reach me. Mark’s cell phone was off. While on the transplant list, you have to be reachable at all times, but technically, I am not on the list (or so I thought). I called her back. I was trembling and laughing. She was just as excited. She told me to get to Edmonton as soon as I could. Several calls back and forth, plus scouring the Internet trying to book a flight, and we finally had arrangements made. We would fly out in four hours, the next available flight being at 5:30 a.m. The ticket was going to cost $3,000 ONE WAY! No time to even think about that. I was so excited and panicky, repacking the suitcase, for who knows how long I will be there. Totally disorganized, I couldn’t decide if I needed to be upstairs or down. I was a cyclone moving through the house. This delirious state sent my blood sugar plummeting to 2.0 mmol. It was only distinguishable by my loss of vision, but as I stuffed sugar into my mouth I continued on my adrenalin-induced state of doing lots but accomplishing little. Rea and Mark helped as much as they could. But I wasn’t making sense. Rea grabbed my arms to stop me. She needed me to understand the significance of that very moment. “Mom, this is going to be the last low blood sugar you will ever have to deal with again.” She was right! I had to slow down and appreciate what was happening for me. Our life as we knew it would never be the same. It was a sobering moment. But with that meaningful moment came more thinking. I paused. I held my breath to hold back the tears. I turned to Mark and Rea “We are celebrating tonight because this is going to save my life. But someone, somewhere is grieving because they just lost someone they cared for very deeply, possibly in some horrible, tragic accident. I’m celebrating and they are mourning a loss worse than anything we could imagine.” I felt so selfish. I needed this moment to figure out how I felt about what had transpired in my donor’s life over the past few hours. The mood was more somber. They didn’t try to console me, for there was no way to make sense of this series of events. My blood sugar rose to 26.4 and I vomited. Rea drove us to the airport in silence. I couldn’t verbalize what I felt. We didn’t speak. I was shaking violently, partly because of the cold, but more due to nervousness. My body was so weak that I didn’t fight the option of using a wheelchair and it was obvious with one false move I would have vomited again. It was an odd surprise to be greeted by familiar faces at 5:00 in the morning at the Air Canada counter. This particular couple had given me a “Guardian Angel” pin to remind me that they were praying for me just a few short weeks earlier. I felt so self-conscious, knowing I must have looked horrible; I would never let anyone see me like this. Although embarrassment stopped me from looking up towards them, I was so appreciative of their wishes of luck and the intent to think of us often. Even though this situation I found myself in was uncomfortable, it touched me that people had bothered to see behind the façade that I thought I so cleverly displayed. I hid my face from those around me, sitting propped up in the airport wheelchair, feeling so much less than a person. This wasn’t me. The airport was filled with hundreds of people heading out on badly needed vacations, and here we were traveling toward a desperately needed transplant. Although envious of how ego-centric those around me seemed, I consoled myself with the fact that we all “need” something to sustain us …some things just sound more desperate than others. Rea wanted to wheel the chair to the gate, but security wouldn’t allow this. Mark took over, pushing me through the metal detectors. Rea motioned to pass through behind us to kiss me good-bye and the guard grabbed and pulled her back. She threw her hands in the air in defiance and told him not to touch her. The rage she felt surfaced at that moment, for both the present situation and for the situation that my disease had cast upon us. I was upset for her but I lacked the ability to reach out. We said good-bye, 10 feet away from each other. She would have to return home alone and patiently wait to hear from Mark when the transplant was complete. Attempting to hold back the tears, she hollered “Daddy take care of her.” It was a long five-hour flight to Edmonton. As I injected a bit more Gravol, I just remembered thinking that it had to end soon. With every bit of control I had, I tried to stop myself from vomiting. We arrived at the Edmonton Airport and Mark picked up a rental car. I called the coordinator to say that we were on our way and we were given directions to follow, once we arrived. “Come in through the front entrance. Follow the entrance hall to the back until you get to the end, turn to your left and Admitting is down that corridor. You will be registered. Someone will come and get you and you will have a chest X-ray. Come up to the third floor.” I registered, received my armband and went directly to the third floor. The directions were more than I was capable of comprehending, but I was far too impatient to just sit and wait. I needed to be moving forward. Not standing still, not looking back. Mark introduced us to the group of nurses. They welcomed me with great enthusiasm. I was given a private room right across from the nurse’s station. No other islet transplant patients were there at the time. I asked for Zophran or anything they could give me for my nausea. They started prepping me for the two I.V.s: one to deliver medication and one for blood if required. The infusion needle for the meds is fairly small but the I.V. for blood infusions is huge! “Not in my hand’ was my only request. I asked what Protocol I was having the transplant under, Edmonton, Inflixamab or Campath? They were unsure. A nurse coordinator for the Islet Cell Program came in. She would be staying with me through the whole procedure. She called the other coordinator to discuss protocols. I was going to be receiving the Edmonton Protocol. If I deemed the protocol not acceptable, they would stop the process. “Of course! That is terrific!” was my quick response. I didn’t even give her time to finish the thought, let alone get the words out. Wonderful! That was the protocol I was familiar with - well as cognizant as I could be. Rea had researched the drugs and what was known of the procedure and had read it to me a million times. Each nurse on the floor had tried and still had no luck with inserting the I.V.s into my badly dehydrated and abused veins. They each took their turn: three attempts and then they would move on to the next nurse. With the I.V. needle under the skin, they would turn, push, turn, push, prodding for the vein that just seemed to disappear once the needle was inserted. After an unsuccessful hour of continuous poking the I.V. team was called to give it a go. They were guaranteed to have success on the first try, the nurses assured me. But they didn’t. I was becoming a challenge. My arms were bruised and swollen. They tried to convince me to let them try my hands. I refused, and told them to keep trying elsewhere. Now with almost three long hours of repetitive attempts behind me, the surgeon came in to introduce himself. He took me by surprise. I hadn’t met him during my assessment and he seemed rather, well, young. He didn’t exactly have the most comforting bedside manner, in fact he was rather abrupt as he told me to let them try my hands or the surgery would be called off and these cells would go to waste. His brazen tone reduced the excitement in the air for both myself, and the people that were around me. The atmosphere became a bit more tense, a bit more solemn. I was disappointed. I was offended by the tone, but I was in no position to react to it. The continuation of this procedure, or not, was in his hands. I tend to disagree that surgeons fully comprehend the weight of the situation on the patient. But perhaps he too would also be dealing with his own anxiety. I allowed a male nurse to try and after three attempts and much difficulty, he inserted a 20 gauge in the top of my right hand and a 22 gauge little higher up. It took a few attempts and a lot of “ouch, sorry”, but that is where they ended up. They were not perfectly in place, but it was the best my veins would allow. He explained they do not like both I.V.s in the same arm, but my veins left no choice. I asked him to reinforce the I.V. in my hand. Many times previously, meds would be delivered through the veins in that location and the I.V. would just slip, rather blow, out. My arms were bruised, red and sore from multiple attempts, but I didn’t care. Overwhelmed by the events, I just wanted to get on with it. The immune suppressants were added to the I.V. bag. As the cocktail of possibly lethal drugs flowed into the tiny veins of my hand, the negative implications that I had been warned of flooded my mind. I quickly dismissed the thought, for the time to consider that issue had passed. The surgery was scheduled for 3:30 p.m. but it had to be postponed to 5:30, as it was getting late and there was still paperwork and X-rays to be completed. It was time to go. I was frightened. The nurses in the ward came over to say good-bye and tell me everything would be fabulous. The little cheering section provided comfort, but I am not sure how I felt. Perhaps nervous, excited, worried, anxious—all I know is that I had a lot of hope tied into the next couple of hours. I would see nothing less than success, I told myself. Everything would be perfect and I would have a great story to tell. I wouldn’t have it any other way. I frankly couldn’t visualize anything less happening. Then again, I never do expect anything negative to happen. I am destined to get better. The gurney was wheeled out. It was insisted that I lie down. In that position I felt vulnerable, and I would have preferred to sit up. I tried to hide my face by looking the other way from people we passed. I have always done this. I didn’t want people looking at me and wondering what was happening to me. I hate pity and pity wasn’t necessary. Rolling down the hall, trying to get your bearings while lying flat on your back, looking up…listening to conversations going on around you…trying to think. What will transpire over the next few hours? Do you know everything you possibly could know? Does it matter now? No negative thoughts, the fears that I have been living with are going to disappear. No negative thoughts…how long will it take? I could just jump off this gurney right now and leave. A cascade of emotions kept washing over me. Pain…but pain is fleeting. Time…but this is but a brief moment in the grand scheme of things. Words to a poem I had heard…“every living thing must come to pass”…but this isn’t my time. No negative thoughts. Mark walked the long halls as far as he could with me and said good-bye. I could tell he was scared, really scared. I would have the same response if the roles were reversed. He breathed deeply and caressed my face with his cheek. I sensed his nervousness. I turned my head but not out of lack of caring, rather I did it to stay composed. He was the only one I ever exposed my soul to. He was the only one who ever saw me break down. I had to stay strong. He was the one who took the weight off my shoulders, but this weight I had to carry alone. He kept saying, “everything will be fine”. I am not sure if he was trying to convince himself, or me. His temple was pounding—that always happens when he is concerned. I can’t imagine being the one left waiting. It must be incredibly onerous to suddenly have your role changed, from being the ringleader of daily happenings on most occasions, to being relegated to a bystander at the event. Or is it a relief to have the onus taken off the responsible person and that weight shifted to that of a medical professional who is better equipped? Regardless, it is tough for him. I had to hop off the gurney for a chest X-ray and then I was wheeled into the operating room. As the operating room doors separated, they revealed a barrage of people filing into the glassed-in operating theatre. This was still a revolutionary event, it had only been attempted a few times. Attendees with weighty expectations wanted to witness it. I recall thinking I was glad the lovely green hospital gown would stay on for this. But I did feel like I was on display. I really shouldn’t care, as this was going to save my life. I should want to share it with everyone. But concern was always “what if I embarrass myself”. I had to be awake and alert. They needed me to follow instructions. They needed me to lie perfectly still. Trying to focus, and stay composed, was my goal. I am sure I was shaking. I asked for Zophran, my stomach was still so queasy. I had it within moments. Aware of my shallow breathing, I tried to swallow and take a deep breath. I can’t swallow properly when I am laying flat. That makes me nervous. Every attempt to swallow, I am aware of. Every nervous breath, I am in tuned to. With every movement I hesitate. I am afraid of that which I know not of. I tried to occupy myself with absorbing what I could see around me, the blur of people and machines. I tried not to show any emotion. I was smiling…maybe a little fake, but a valiant effort was made. I did have a great deal of appreciation, and hope, for what was about to happen. A large round ultrasound machine is positioned 18 inches above my abdomen. I vaguely see a monitor off to my left. The radiologist is an older man, short and chubby with grey hair. The doctor, who is monitoring vital signs and delivering the medication, is a younger man. He has a great voice, very comforting. He has soft, light colored eyes. With his words he reinforces my confidence in what was about to take place. He asks if I feel discomfort—I responded, “a little”, and more medication is infused. My feeling no pain seems to be of utmost importance. Nervousness is still making it hard to swallow. My right arm is placed above my head, a towel covers it and then duct tape holds the arm in place. I am instructed that I need to be perfectly still. Freezing is injected into my right side, between my first and second rib. I feel nothing. I can sense I am trembling a little. More medication is administered. The radiologist carefully handles a long, thin catheter appearing to be twelve inches in length. I can see the bags of fluid flowing into the vein of my arm. I assume that is part of the next round of immune suppressant drugs. That makes me a little excited, as it means something is actually going to happen. I decide I’m not scared, just a little anxious, if that is possible. At this moment, all eyes are focused on the radiologist gently threading the catheter between my ribs. I am aware of the communal gathering in the glassed-in theatre a few feet away. I can’t see them; I can only sense their presence and the nervous energy in the air. Watching, waiting, no chatter, no coughing, no movement. Only the sound of the radiologist breathing deeply, holding his breath, and then breathing again. His eyes are intent on the monitor, down to the catheter, back up to the monitor, over to my face, and back to the catheter again. “Don’t breathe deeply Donna,” he exhaled, focusing on the monitor. And with those words, and at that moment I was nervous. Very, very nervous. The doctors were talking, sometimes lightly, but mostly with intense, serious voices. The radiologist was close to me, and I could almost make out the intensity in his stare. He was concentrating. I watched him move, looking for some indication that he was almost finished. He started slowly guiding the needle, and I winced. His eyes darted to my face and he asked if I felt it—I answered affirmatively. I was trying not to move as I swallowed, but it was difficult to swallow. I had a lump in my throat that wouldn’t move. He ordered more meds with a little more rigidity to his voice and I felt numb. I could see as the 12-inch needle was slowly, gently guided into my side. It took three attempts and a few stern warnings not to breathe heavily, before he finally entered the portal vein. A huge sigh of relief was heard. An immense calmness filled the air. The thick tension that I sensed all around me had dissipated. The cells were brought out in an i.v. bag. The radiologist stepped back, as he blotted away the perspiration from his forehead with his gowned forearm. The doctor moved forward and with what appeared to be an almost ceremonious sweep of his arm, he attached the bag that was one-third filled with a yellow solution to the catheter that protruded from between my ribs. The young doctor in charge of the meds reached over and touched my shoulder with his gloved hand. “You’re doing great Donna. It won’t be long now,” he reassured me with his soft, comforting voice. That bit of consoling was greatly needed and appreciated. I could almost sense the warmth of his hand through his glove, as I felt a wave of tension leave my body. Gravity forced the cells into my portal vein. Gentle, positive congratulatory words and handshakes were exchanged in the background. I could no longer see the I.V. bag with the cells in it but I was too sleepy and uncomfortable to care. As the cells are making their way into my body, an oxygen mask is placed over my nose. It is explained to me that oxygenating the cells upon delivery gives them a better chance at survival. But the mask is heavy on the bridge of my nose, it is uncomfortable, it feels like it is pushing my face inward. I wiggled my duct-taped arm down to move the mask. I despise the scent of the rubber. I dislike the feel. With my decreased vision, my sense of smell is acute, and I very much loathed that smell! “Leave it on Donna. Leave it on Donna,” someone is constantly insisting, and repeatedly adjusting it. Not being able to breathe due to lying in a flat position, the feeling of this cumbersome device balancing on the bridge of my nose, plus relinquishing mental and physical control to the drugs made me not particularly willing to cooperate. Truly, I was oblivious to the significance of what was happening, because if I had understood I would have been more cooperative! The surgeon, holding the bag of cells while conducting a conversation with his peers was seemingly interrupted by the repetitive instruction being given to me, and with no particular emotion he intervened, “it’s okay, let her do it”. My mind and body are in a different time and place, other than the present. I just want this over with. I want to be brought to a bed where I can sleep off the medications, undisturbed. I am so listless. I keep telling myself that soon they will be finished, but I have nothing to draw from. I have no idea how long this will take, and a firm time had never been given. My back hurts from lying still for so long. My legs are stiff from holding the same position. Within an hour and a half, my islet cell transplant was complete. “That’s it! We are finished dear.” I heard a voice, and I felt relief. I was sensing relief all around me. There was what I assumed to be nervous chatter—perhaps things didn’t go as smoothly as I had anticipated they would? I wasn’t sure, and I don’t think I had the capacity to really care at that moment. I wish I could say I was thinking of something profound, but I wasn’t. I just wanted it to be over, I wanted the oxygen mask off and I wanted to sleep now.” “One Step Up From A Lab Rat” is a guide that takes you step by step through the entire transplant process from a patient’s point of view. It allows the reader to be part of the deepest thoughts and emotions that a critically ill person deals with while on the journey from testing to achieving the desired goal of “life”. The reader experiences the feelings associated with coming to terms with ones’ own mortality; having to fight for a transplant that offered the chance of survival; the shock associated with transplant failure; the disappointments and trials while on the journey to a second transplant; the life-threatening surgery which finally led to achieving glycemic control, yet living with the fear of “will this last”. “One Step Up From a Lab Rat” is a patient’s perspective on a very personal, difficult road infused with the excitement associated with being part of ground-breaking research.
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Canada SKU/Item Number: 100005 |
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© The Façade Group Inc. 2011 Since 1994 |
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CBC News Video |
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Email Author: Donna Marcelissen Join the Facebook Group!
Foreword by Dr. A.M. James Shapiro M.D., PhD., Associate Clinical Professor of Surgery, Director of the Clinical Islet Transplant Program University of Alberta |
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Price: $19.99 CAN |
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SKU/Item Number: 100001 |
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Softcover Paper - 225 Pages |
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Acrobat PDF eBook - 225 Pages |
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United States SKU/Item Number: 100006 |
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Price: $19.99 U.S. |