Sunday, July 29, 2018

Breaking Through

I laid in my hospital bed drenched from the melted ice that had been placed all over my body. My hospital gown was clinging to my clammy skin like Seran wrap on a glass bowl.The fever had reached such a high temperature that I had become delirious and near death once more. There was nothing more to be done, no medicine could I take, no procedure to perform, there was nothing left but the cold bags of ice as the final attempt to break my fever.

I had recieved my long awaited kidney and pancreas transplant. My kidney  rejected just a few hours after being transplanted, the culprit was the Bactrim. It  caused my kidney to shut down. The remedy was to change the antibiotic and I responded almost immediately. The rejection had ceased, and I went home a week later rejuvenated by my new gifts.

I went back 4 days after discharge running a fever. I was again hospitalized. My doctors and surgeons plan was to perform a lavage and a biopsy of my new pancreas. The lavage was intended to treat any underlying infection in my abdominal cavity and surrounding organs and the biopsy would indicate if the pancreas was functioning properly and to check for infection. The lavage went well and no sign of infection in the accumulated fluid, however the biopsy was problematic. The surgeon mistakenly took a sample of a lymphnode instead of my pancreas. A second attempt at a biopsy was too risky and the team decided that the problem must lie in the fact that a IV drug administered after transplant was not given long enough post transplant and a second course would do the trick. Still in the hospital I undergo a PICC line placement and sent home to await infusion from a home care nurse to be closely monitored because of dangerous blood pressure issues. The infusions took 5 hours and were scheduled to run for 8 days, and would have to be given very very slowly.  It is a very strong drug, given too quickly it can cause heart failure. Day three of the infusion had been problematic my blood pressure began to be greatly affected and I developed another high fever. The nurse then sent me back to the hospital and I am again admitted for the remainder of the infusion treatment. I was discharged and sent back home.

Two weeks go by and it's time to return to the transplant center for bloodwork and follow-up. The day before I went out to a concert although still weak I had been cleared to be out in public by this point. I had to leave the next day for the 4 hour trip to the hospital. We checked into our hotel and settled in for the night. I had been exhausted and weak after traveling I immediately went to sleep. I awoke at 2AM burning with a fever of 103.2. I sat on the floor of the shower (too weakened to to stand) as the cool water soothed my fevered skin. My appointment was at 6AM, when I arrived my fever had went even higher at 104° and I'm admitted yet again.

I lingered with high fever for over a week. The doctors perplexed as to why I have a fever, they were at a loss. My fever spiked as high as 105°. Tylenol reduced it only to about 103°. I had been on a steady dose of heavy antibiotics but nothing had worked thus far. I was so weak and I remembered thinking I was dying. I clung to my husband, I was so afraid and filled with uncertainty. I grasped his hand as he stood by my bedside. He placed cold rags on my head and neck as he  attempted to ease my fever. He brushed my hair with a slow rthymic motions. He showed such gentle and loving care for me with every gesture. No medicine could have given me, what he was at that very moment.

The doctor came in and spoken to my husband. The doctor said to him there is nothing more they can do, but pray. The doctor sat beside me on my bed placed his hand on my knee and we all prayed. They had began to pack me in ice. Small plastic bags were all over, the sheets soaked from the melted ice. As each bag melted another one quickly took its place. This went on throughout the night and into the next day.  My husband stood vigilant as we continued to cling to one another, and as I clung to life. My eyes had become unable to focus, blurred shapes began to appear and dry cracks formed on my lips as the fever dominated over me. I began to feel my life slipping away, I began to drift into another place. My mind was as foggy as my vision had been.  I  had felt my husbands cold hand upon my forehead and looked at his face. His face appeared tired from sleeplessness and his eyes filled with tears around the dark circles that had formed underneath. He leaned over me and kissed my damp forehead still squeezing my hand he whispered "I love you"...I felt and saw his fear and helplessness as he watched my body turn on itself once again.

My constant battle was always with my own body. From my early childhood diagnosis as a diabetic, to this very moment my most persistent adversary has always been my own body. How do I fight myself? I'm so tired of fighting. I began to cry and ask my husband if I was dying?! His tears streaming down his face he said, "not today".

I fell asleep for a few hours and I awake to see my husband still standing in the same spot, still holding my hand. I looked at his face and he smiled and said, "your fever broke"

I had given up, but my husband never did. He took over where I left off and picked up the fight. He prayed and fought for me when I couldn't any longer.

My doctor came in smiling and said, "a miracle has been witnessed by us all. God carried you in the palm of his hand didn't he"?  We both said "Yes, he sure did"!

After two more days I left the hospital and the high fevers  never returned.

Sometimes all we have to fight with is prayers and the people we love. Whether its God or your family, friends, or whatever your beliefs may be, there is someone pulling for you, when you feel weak they will step up. I may have let go for a moment, but I survived by a circle of strength that I still carry everyday. That very moment taught me that I'll never give up again, because they never did!!

Wednesday, July 25, 2018

Daddy's Gift

As many of you may know my dad passed recently, and was a registered organ donor. He knew how important the gift of life was, especially after witnessing how it saved my life. Dad wanted to give back in a way to express his gratfullness for the gift I had received. When our family was approached at the hospital by the funeral home director to donate his eyes to the Georgia Eye B
ank we didn't hesitate We knew the importance of this gesture and how amazing it would be to honor his legacy with this incredible gift of sight.

Today as I was heading to a doctor appointment I checked our mail and found a large envelope from the Georgia eye Bank. Inclosed was this beautiful pin (pictured below) that I can wear proudly as a reminder of the gift he had given.

Dad wanted to make a difference and give back to someone in need, just as someone once did for me.
I was honored to help fulfill his wish. Now his eyes see once again and part of him lives on with his incredible gift of sight.

Monday, July 23, 2018

Meeting the Candidates

I had the opportunity to meet with Lisa Ring district 1 congressional candidate for Georgia. We discussed healthcare and its failures. She shared with me her plan's for improving our broken healthcare system. Lisa listened to my story and many others like myself who struggle to afford proper healthcare. It was a great opportunity to finally be heard! Many thanks to Lisa Ring and her staff for reaching out to people of this city and the entire district.
https://www.facebook.com/LisaRingGA/videos/2150909284925475/

Our New Podcast

Transformed by Transplant has entered a new genre with our new podcast. Listen as we share our journey which led to transplant. The podcast will include true stories of triumph and survival. We take you through the pitfalls and miracles of transplant and chronic illness. Join us for this incredible journey!!
http://transformedbytransplant.libsyn.com/transformed-by-transplant-episode-1-the-beginning

Tuesday, July 10, 2018

Dad

This post has little to do with transplant, but it does have a great deal to with transformation.

Three weeks ago my dad died very suddenly. In the early morning hours I had recieved the dreaded phone call that he had been found unresponsive and had been taken to the hospital. A thousand thoughts came rushing at me all at once. Panic and despair quickly set me in motion and unleashed a chain of events that devastated our family.

Early morning driving to the hospital and replaying the words in my head, looking for clues and understanding as to what happened. My mind was racing. We pull up to the ER after trying figure out where he had been taken. I walked through the doors to a eerily quiet waiting room and asked if he was there, still not sure if I had the right hospital. That few moments seemed like an eternity. The receptionist confirmed he was there and that someone would be out to speak with me shortly. My heart sank. I knew what that meant and I agonized over my entire relationship with my dad in that brief moment.

The nurse escorted us to the family room. I collapsed against my husband as every step towards that room became harder and harder. I felt numb and sank into the chair. I wanted to crawl inside myself and stay there. I began cry and my husband held me tightly against his chest. I looked up and saw his face and the tears that had welled up in his eyes.

The doctor came in the conference room and knelt down looking into my eyes as he began to give his speech  "despite our best efforts your father has passed." 

I couldn't hear anything any more just my muffled sobs pierced the silence of the room. I wanted to see him I needed to see for myself that he was truly gone. I expected dad to be sitting up and laughing like it was a joke. It wasn't a joke. His rosey complexion had been replaced with a gray hue, and his hands layed lifeless beside the bed. I grabbed his hand and felt the coldness. Still wanting and hoping he would squeeze my hand, but he didn't he had truly died.

At that moment I was no longer the woman of my forty seven years but a little girl who lost her daddy.

We sat with him for over an hour talking to him and loving him. We prayed with him and watched as he was given his final sacrament. We said our goodbyes and left the hospital with a bag of his tattered  blood stained clothes and his gold necklace he always wore. It was done he was gone.

My greif was immeasurable and I didnt just grieve the loss of him but the loss of my mother years ago. I was alone without parents. I felt orphaned, and scared. Still the little girl, I felt lost. A flurry of emotions and memories came flooding through my mind in rapid succession. It was like a VCR stuck on replay and I couldn't get the tape to stop playing.

I know death comes for us all inevitably, however in that moment you dont think that way. Your only left with questions. Why did this happen? What to we do now? How do I live without them both?

I know now that I will live without them, but I dont want to. I want them back. I want my long conversations and joke telling. I want them to tuck me in at night. I want to hear them sing me songs and laugh at my antics.  Hugs, I want to feel their hugs...
Selfish? Perhaps so, but my heart is broken. I dont know that you ever get over the loss of your parent, you just learn a new way of living without them. You learn to accept death in all its forms, and you learn how to grieve quietly without ceasing. I know death can be a gift. My parents both suffered near the end of their lives and both were ready to leave this world. I just wasn't ready for them to go...Yes death can be a gift, it was just one I wasn't ready to recieve!