Chapter Nine: A New Life

I stirred slightly and aches and pains radiated throughout my body like a million and one prickling knives. That is when I remembered: “Kidney Transplant.”

The lights were hazy and fuzzy. I blinked several times to shake consciousness into me. Suddenly, I was wide awake. The rush of reality hit me: The tube inserted between my legs, a dry throat, parched lips, and a penetrating sharpness and soreness in the left side of my belly. The soreness that throbbed in the left side of the body was all the proof I needed. That was it. My second kidney transplant pumping life in me. My second chance at life. My New Life.

Excitement overpowered the undeniable and persistent pain. As the excitement grew, I struggled to move and speak, but I was bound to a bed with tubes literally coming out from me. Above me was a round ticking clock that read 6PM. The excitement turned to fear as I fought to find a familiar face. All around me were white walls and bleeping and beeping machines. Where was my Dad? Where was a human being?

I wanted my Father and a drink of water so badly that it hurt more than my body. Not that I ever walked on the rolling dryness of the Sahara Desert, but a good gallon of water would have done me a whole lot of good at that point. As if on cue, my Father came in, squeezed my hand, and looked at me with his exhausted and glittering eyes. I tried to smile to reassure my Father that I was more than okay since I was alive, conscious, and even feeling pain, but the tube prohibited me from smiling. I returned my Father’s squeeze with a grip so hard that he winced through his sleepy smile. Everything was going to be okay. I was just so very tired and exhausted. Before I knew it, I fell into a deep sleep again with my Father’s hand in mine.

I no longer knew the concept of time after my second kidney transplant. The days that immediately followed after my second kidney transplant was a dizzying and surreal dream. I slipped in and out of consciousness. Images of my surgeon and his medical team, my family, friends, and teachers rotated in my head. I could not decipher what was real and what was unreal—who was really there in my hospital room and who was not. I tried hard to stay awake, but felt myself weighted down by exhaustion every time I stirred awake again. All I wanted to do was sleep. When I was awake, there were more snapshots of doctors, nurses, colorful pills, and machines that droned monotonously in the white hospital room.

I believe it was at least the third or fourth day post-second kidney transplant that I was no longer ready to fall asleep as soon as I woke up. It quickly became clear to me how delicate my condition was. The facts were indirectly fed to me when I heard the swarm of my Father talking to my medical team: The kidneys were transplanted in the left side of my belly and the swelling, tenderness, and faded blacks and blues were a normal reaction. I did not immediately see the beautiful ugliness of it all because there was a binding around that area to protect the stitches that left me wanting to scratch that area (it was so itchy!!) and engulfed with curiosity. The tube (known as a catheter tube) between my legs was clamped on to my urine hole to drain my urine into a bag. My urine stared back at me in a deep marigold yellow colored mess with traces of scarlet red blood specks. Whenever I moved ever so slightly, the tube moved right along with me and pain would immediately shoot up throughout my body. I was scared when my surgeon declared that it was only a matter of time that I had to start to try to walk again on my legs rather than somewhat clumsily shifting in the hospital bed. Who knew what would happen outside the confines of the hospital room? Would I be able to return back to normalcy? Would it be better than before or worse? My hospital room was a secure net of safety and I was not yet ready to flutter free from it.

I was introduced to an assortment of rainbow-colored pills ranging from size, shape, and texture. These pills were to become my best little friends that had two key tasks:

(1) Keep my new kidneys functioning

and

(2) Keep my body from betraying me.

Yes, my body could betray me at any given moment and so shoved into my hands were mostly multicolored pills known as immunosuppressant medications, otherwise known as “suppressing” the “immune system.” The immune system is our body’s very own personal military, army, and navy in one that has the thrilling job of fighting off diseases and illnesses. Because these kidneys were not technically mine to begin with and were transplanted into me, my body could potentially see the new kidneys as enemies and kill them off. In addition to my immune system viewing my kidneys as enemy #1, I was highly susceptible to infections immediately post-transplant and any infection could put my immune system into overdrive and get ready to do battle with my newfound kidneys, causing a kidney rejection and it would be “bye-bye kidneys and new gift and life.” My handful of immunosuppressant medications included:

-Prograf: my favorite because it was a tiny white capsule pill

-Cyclosporine: my most hated medicine because it was in liquid form at that time that made me gag and grow hair—no joke

-Cellcept: My somewhat loathed medicine because they were large oblong tablets that nearly made me choke when I popped them in my mouth

-Finally, Prednisone: Tiny, tiny white tablets that appeared innocent, but had major side effect damages

I also took blood pressure medications Procardia (round pretty pink tablets) and Cardizem because high blood pressure was known to damage the kidneys. There was also another round of entirely random medications that made me befuddled and as though I was a class-one drug addict.

I quickly became accustomed to the hospital routine as soon as I was staying wide awake conscious. I often saw the nurse first thing in the morning with her/his blood pressure machine on wheels and a thermometer to measure my vital signs. My surgeon and his medical team greeted me in the mornings with wide grins and thick charts to see the binding around my belly and press upon the transplanted area. I winced in a slight pleasure-pain response and they were satisfied at my response, because that was the normal reaction. Nightly, I met with the nurses again at least two times to check my vital signs. From morning to night and particularly at 5PM when my Father came to visit me after work, I was alone and had nothing to do but stare at the walls and observe outside. I wondered when I would get better and start this new life. I saw from the musty windows that the Spring season was quickly blooming with emerald green grass, blue skies, and the start of flowers. I wondered when it would happen that I could breathe in that fresh Spring air and surroundings all over again.

To keep myself busy, I constantly wrote in my diary, watched TV, and talked with the nurses or anyone who would give me the time of day. I would check my bandaged area and pat my bruised belly to give thanks to this gift. I thought a lot about my organ donor’s family and was infested with guilt that as I was beginning my life, my organ donor’s family was still grieving over the ending of their loved one’s life. I was constantly monitored and breaths were held that my new kidneys were not rejected. Before I fell asleep each night, I wrapped my hands together in hopes and prayers that my body would not betray me.

Little by little, I was aware of the changes my body had seemingly overcome overnight with the second kidney transplant. Though I was extremely sore and achy, I felt surprisingly, shockingly, and utterly great. I was more alive than I had ever been in these last months waiting for my transplant. When I looked in the mirror a few days after my second kidney transplant, a thinner and new me reflected back at me with shiny eyes and rather rosy-colored cheeks. I lost a significant amount of weight (mostly water weight) post-transplant. It was unreal at how quickly I had undergone such a lively transformation after the transplant. I was me, but I was not me. It was a brand new me; This frightened and enthralled me all in one.

Many people outside the confines of my hospital room visited and flooded me with love and care in the following days. Claudia called me every afternoon after school just about every day to update me on our crazy teachers and how everyone knew what happened and was thinking of me. She made me laugh so hard until I felt like the stitches from the transplant would burst open. Gina visited me at the hospital and proudly handed an adorable “Mrs. Potts” teacup in my hands from Disney’s “Beauty and the Beast” while she sat with me in comforting quietness. My Father stayed with me after work. We did not say too much and usually just watched TV while I toyed with my hospital food, but him there meant everything to me. My sister who was living up her life at university phoned me. My mother even called and it was bittersweet to hear her voice again on the other line. My Father’s relatives visited and overwhelmed me with the cutest and largest of stuffed animals. I received endless loving and Get Well cards from teachers, my friends, and even friends forgotten. I still have their cards in an old shoebox that I look through from time to time to remind me what is really important in life. I occupied my boring and bed-bound days with my journal and taped all the cards I received and wrote everyday how lucky I was to be alive. During these moments when I saw the people I loved and cared about and divulged every secret and detail of the transplant experience into my journal, I was overcome with sentimentality at how blessed I was with the most amazing and loving people I could ever ask or wish for.

Almost a week after my transplant, it was time for me to walk and get out of my comfort zone hospital bed. I was scared, nervous, and excited all rolled into one. There was a whole other world waiting for me outside the hospital room. Would I be able to face it? The tube between my legs tugged on me and I winced, gritted my teeth, and sharply inhaled all at once when I walked for the first time and clawed at the hospital walls for support. My Father held on tightly to my other free hand. The first time I took a step, I was exhausted and the pain in the transplanted area and urine hole where the tube was fastened on to was extremely and indescribably severe. I was convinced that I was going to collapse in the hallway. I wondered if I would ever feel the energized and lively way that I appeared in the mirror. I was in so much pain that I could not even absorb what the world outside the hospital room looked like. Frustration filled me when I returned back to my bed. My Father tried to console me not to be too hard on myself. I had to give it time. I had to be patient. I gave myself a pep talk to use that frustration and anger to focus on getting better and getting out of the hospital. My physical body and mental state always ended up in some kind of boxing match that exhausted and aggravated me further.

I was afraid of walking the next day and the next day after that, and even the day after that because of the intense pain. Tears clouded my eyesight just thinking about the pain that would resume when I walked again. The pain mostly came from the tube yanking and pulling at my urine hole more than the transplanted area, my hip, and lower back. To my utter relief, after the next day of sweat induced and baby-step walking, the tube was finally removed to see if I could urinate on my own as well as walk with minimal pain. I expected the tube removal to be just as painful as its constant and annoying pulling, but it was actually one swift and firm pull that resembled a quick pinch. It stung in that area for several minutes after the removal. When I walked again, the stinging sensation remained, but then slowly dissipated as I forced myself to ignore the pain and continue walking, or rather hobbling because the transplanted area and my hip were still sore. With each step that I took, any remaining pain that came from that tube that yanked and drained out my urine decreased and came to an end. It was a triumphant moment for me. It meant that I was getting better and soon to get out of that hospital to start my life again.

Physical and occupational therapy sessions were also thrown on to me after it became clear that I could shuffle my feet and walk a bit. They were agonizing and demanding. I dreaded them. The littlest movements knocked me out and left me breathless and wanting to return back to the comforting hospital bed. The occupational therapist gave me a contraption that was made out of plastic and had three separate sections with little balls. I had to blow into a tube attached to this plastic device to expand my lungs and regain my vivacity. I had no idea how that little device was to expand my lungs when I felt as though my lungs would collapse with each breath I injected into that item. The physical therapist gave me a yellow piece of rubber cloth the size of a small towel to stretch on. When I feebly attempted to stretch and pull, my body shouted to just give up—but I knew I could not when I already came so far with obtaining my second kidney transplant. I suppose what made the therapy sessions more painful was my hip still ached, but the sharpness that I had prior to the transplant seemed to have vanished within days after the transplant. It was a combined puzzling and miraculous phenomenon.

Besides therapies occupying my time and efforts, I spent many hours undergoing a scan of my transplanted kidneys. Even now, I do not know the name of the scan, but I remember lying for at least an hour on my right side in a dimly lit and chilly room as a massive tube zoomed in above the left side of my belly where the transplanted kidneys were. I could not move so much and often drifted in and out of dreamless sleep on the cold and hard scanned table with my head cradled in my crossed arms. The technician would say to me that she was looking at my kidneys through this tube to make sure that they looked okay and then she would announce with a big smile that they were looking beautiful. I could not help but reflect her smile and tried to imagine these kidney bean kidneys huddled in the depths of my belly as they pumped life into me. I smiled peacefully to myself. Yes, my new kidneys had to be the most beautiful things in the world.

As the days progressed, I became stronger and better and began to replace frustration and impatience with hopefulness and confidence that maybe, just maybe, these kidneys would last and after all was said and done that I would FINALLY live my life and be liberated from any health problems.

Almost at the end of the second week in the hospital, there was talk from my surgeon that I would be discharged from the hospital. This was all the motivation I needed to work harder to leave. So far, I had somewhat mastered my physical and occupational therapies. I was able to fairly walk with a straight, normal, and easy stride. Now it was time to see if my new kidneys could perform as well as function. The proof that my new kidneys were functioning at a top-notch level was in my creatinine blood level results. These were measured periodically after my transplant. Creatinine is a type of chemical waste that runs through the kidneys. The lower the number, the better. Prior to this second kidney transplant, the creatinine rate lied somewhere at a 7.5 or even higher, otherwise known as major danger zone. Now after my second kidney transplant, my creatinine blood levels were at an all time low of .5 and below. To me, the test to determine kidney performance was actually in urination. I was obligated to urinate every 60-90 minutes at most to coach my kidneys into knowing that they had work to do now. When I first urinated in the days after the tube removal, a fiery sensation ran throughout me and there was faded blood that mixed with the urine. The burning sensation began to decrease as I trained my body and my kidneys into this urination routine. According to my surgeon, I was doing extremely well and I was to be discharged by the end of the second week. If I could, I would have danced and done cartwheels in the hospital hallways. Instead, I settled on pumping my arms, grinning widely, and cheering with a: “YES!!!” AND “YAY!!”

I always knew how precious my second kidney transplant, but the moment it truly sunk in was when my body woke me up to go to the bathroom in the middle of the night. It happened the night before I returned back home when I felt a light pressure sitting on my bladder. Half asleep, I clumsily toddled to the bathroom and peeled off the tapes of the diapers that I had no choice but to wear ever since I was a little girl from my weak bladder. I was ready to fall asleep again when my eyes fluttered open to the startling realization that that was the first time in almost 13 years of my life that I woke up on my very own to go to the bathroom rather than my unconscious nightly ritual of urinating into those diapers and the urine then trickling on to my bed sheets. I remember feeling the starch and stiff hospital bed sheets to see if I had wet them. I had not. I took a deep breath and a grin spread across my face and thought to myself: “Oh, my God! Does this mean that I do not need a diaper anymore?? Is it that my kidneys are really mine to keep now?? Does it mean that they are really working??” I was a little bit skeptical and doubtful of this thrill and thought maybe I was dreaming. Just to test this out further and to make sure that I would not pee all over myself and the bed sheets, I nearly fell out of bed to slip on a pair of underwear that my Father had tucked away along with my other clothes in the drawers to see if the bed would be wet the next morning. I chucked the diaper in the garbage and fell asleep easily with a smile stretched on my face.

The next morning, I woke up to the sun streaming through the windows and a completely dry and clean bed. I was overcome with excitement and fantastic thoughts seeped into my brain of sleeping over my friends’ houses without shame and fear and feeling the soft fabric of my underwear rather than those plastic diapers that rubbed against my skin and caused splotchy, red marks to break out and all over. This was the beginning of normalcy that my second transplant had given me. It was a pleasant punch to my stomach and I sat in a dazed disbelief at this ecstatic news.

It was suddenly crystal clear to me at the enormity of my second kidney transplant. My second kidney transplant was truly my second chance at living and life, thanks to a nameless and faceless person who selflessly gave my life. This was my second chance to live my life and to make everything right from everything that had went wrong. This life had already just begun with not having to wear diapers, not wetting the bed, walking again without any hip/lower back pain, lost weight, rosy cheeks and bright eyes, and a combined optimal energy and vitality that traveled at lightning speed within me that I had lost when my first kidneys failed.

On the day I left the hospital, there were emotional hugs and good-byes to all my nurses and doctors who had nurtured me from the moment my life began again. I could never express the gratitude and love I had for all of them. The nurses all said the same thing to me:

“Mary, we love you, but we don’t want to see you again here.”

I could not help but laugh and cry when they said that to me as I blew them kisses an squeezed them with hugs. As I was being wheeled outside, my heart was thumping and my palms sweaty. I forgot what outside nature and the world was like, but I was more than happy to remember again. Everything seemed to be in slow motion as the automatic doors of the hospital opened widely for me. I stood up from the wheelchair, grabbed my Father’s hand, and the fresh air of Spring and life in all its beauty welcomed me with open arms. The clouds were puffier, the sky was bluer, the sun was brighter, and everything was all the more extraordinary and magnificent than I ever could have even tried to remember. To me, my life began right then and there. I was going to be okay and live and lead a normal life. Nothing and no one was going to stop me now.

3 comments:

Jennifer said...

Wow, Mare that was a really good write up. You forgot to mention that at this time, you started watching Days of Our Lives LOL

Catherine said...

I love this chapter. A sunny chapter :-)
Hugs

Maria said...

Wow, Mary, that's a very powerful chapter.