My brother has fought a long, hard fight most of his life. He won a big battle this year when he finally received a liver transplant September 13th. He had been on the list for nearly three years and the last was a miserable one for him and our family as well. He is my baby brother by only 20 months. We are the only two children of my parents. When mom and dad married, they had no idea their blood types would cause so much pain and worry down the road. You see, my mother is A negative and dad is A positive (dominant) and I was born first with my father’s blood type. This is very common and women who are Rh negative give birth to Rh positive babies without difficulty everyday. My birth was not a problem (even though I was breech!), however, the medication given to my mother after my birth to destroy all Rh positive antibodies her body formed having me, did not work…of course there was no way of really knowing that and she assumed like most would that it would not affect any future children.
Because it took my parents years to get pregnant with me, they immediately started trying for my brother. Mom got pregnant very soon after and Marc and I were scheduled to be almost 2 years apart according to her due date. However, things did not go as planned for Mom and Marc. The obstetricians found out soon into her pregnancy that her antibodies for Rh positive blood were still circulating in her bloodstream despite the medicine she received after my birth and that my brother had Rh positive blood just like my dad and myself. Her blood was essentially trying to destroy my brother’s blood in utero. In Jonesboro, AR in 1973, my mother received amniocentesis every two weeks. BLIND amniocentesis! Meaning, no ultrasound to guide the huge needle. They listened for babies heartbeat to confirm they had not injured him…
After 25-28 weeks gestation, the local doctors felt mom and babies fate were out of their hands. She was sent to Memphis where they performed emergency c-section to save my brother’s life. He was born severely hemolysized meaning mom’s antibodies had destroyed his red blood cells to the point he was severely anemic and needed not one, but nine blood transfusions to survive. This was a record set in 1973. The doctors and nurses in Memphis told my parents to go home and attend to their other child, his chances of living were grim. They were wrong. He lived, without insult or injury from the Rh incompatibility and had a very normal, healthy childhood. I have since learned about this condition and know that many babies are left with brain damage and deficits due to the lack of oxygen at birth because they are so anemic. This was the first miracle in his life.
It never occurred to any of us that blood donated in 1973 was not tested for many of the things it is tested for now. And, nine transfusions? That increases your chances of receiving a blood borne pathogen greatly. We found out soon enough, Marc did not dodge the bullet on that. He was indeed infected with Hep C. He started developing symptoms in his mid-20’s and was shortly after diagnosed. It took nearly 10 years of study treatments and trips to specialists before the virus got the better of him and he was placed on the liver transplant list. He started 2011 out weighing in over 240 lbs and by September 2013, he weighed 100 lbs less, he was malnourished, severely anemic and battled with fluid retention in his abdomen, legs and lungs. He spent most of the last two years on the transplant list having his abdomen drained of peritoneal fluid (sometimes 20 lbs or more) and in and out of the hospital for various complications. He turned 40 yrs old June 26, 2013.
His spirits were low, he was scared that he would not live to see his twins, now 5 years old, grow up. A once optimistic person who worried more about making others laugh and smile, he was reduced to tears of pain and worry. However, he never lost faith. Had it not been for his strong faith, the faith of his wife and the rest of the family, I shutter to think what his mental status would have been reduced to! So many friends, church members and family came to his aid. The transplant doctors had grown very fond of him and we could see the worry on their faces when he went for check-ups. They wanted to get him a transplant badly.
The call finally came in September. It was a Thursday afternoon and I was at work. When I missed the call from Marc and then one from my parents, I thought the worst. I assumed we were headed back to Little Rock for breathing difficulties, infection or a mental status change. But, I was completely floored when I called my brother back to hear him say, “they got me a liver”:)
Before sunrise on September 13th, Marc had a donor liver in his body and the surgeon reported to us that he was doing better than expected already. Same story, second verse…Marc breezed through recovery just like the day he was born! His nurses commented frequently about how well he was making progress even in the ICU immediately after transplant. He was home from the hospital a week after and now, two months later, he is driving, eating whatever he wants, gaining weight but more importantly, smiling and happy!
I’m thankful for so many things this Thanksgiving, but I feel exceptional that we have my brother, his transplant and his new found health to be thankful for! Most of all, I am thankful for his donor, his donor’s family and the ultimate gift he gave my brother. By simply designating on your driver’s license, you can potentially save another’s life. It’s such a simple act but it means so much. Marc’s donor, I pray, is in heaven and can see how his life has impacted my brothers. I pray he knows how thankful we are. I pray his family is blessed beyond measure for the very hard decision they made September 12th. Their sadness brought about our joy. Sounds Christ-like, huh?!
So, this year, Thanksgiving 2013, I am thankful for my freedom, my family, my wonderful husband, my job, a warm place to sleep and food to eat but most of all, I am thankful for my brother’s new life! He is a living, breathing miracle. I have no doubt God has bigger plans for him and I cannot wait to see what’s in store.
I am adding to this original blog because we lost my brother 3 weeks ago. After his long battle, he finally said goodbye to this world December 11, 2014 after a months stay in the ICU at UAMS. Approximately 5 months after transplant, he developed a viral infection which is very common with liver transplants. It was almost expected and he was immediately treated for it. His health did not progress from that point on. He remained thin, unable to eat much, short of breath and altered mental status that would improve to only worsen again. The doctors found his hepC was actually coming back and they feared it would destroy his transplanted liver. They started him on a very new antiviral for hepC that proved to be a success in ridding his body of the virus. However, it did not improve his health. He remained tired, weak, short of breath and began to retain fluid again.
The first week of November, after a week of mental confusion, his wife, Nancy, took him to UAMS Emergency Department and he was admitted. He had always carried fluid on his right lung. This is a phenomenon that occurs with liver failure. He had the right lung drained of fluid a few times pre-transplant but they had not attempted it after. Most likely due to his immunocompromised state brought on by the “rejection prevention medication” he was taking. However, upon this hospital stay, they made the decision to do a thoracentesis (draining the lung). It immediately caused severe chest pain and his shortness of breath worsened. They feared they had nicked an artery and his lung had collapsed due to the blood in his chest cavity. He was soon placed in ICU because he was quickly deteriorating. That was a long first night in the ICU. His wife and I sat up the whole night with him. My parents napped off and on in the ICU waiting room.
The next morning we were confronted by the severity of his condition and told he would need surgery to fix the problem with his lung but his chances of survival were 10%. His chances of survival without the surgery were 0%. We gave consent for surgery and prayed. I think the whole continent was praying for my brother that day. We knew he was on hundreds of prayer lists and many prayer chains had been started for him. The prayers had kept him going this far! We were overwhelmed with the prayers and love of people we had not even met as well as those we knew and loved. He had prayers lifting him up from the West Coast to the East Coast and everywhere in between. While in the surgery waiting area during his operation, a lady walked into the bathroom where my daughter and I were embraced crying. She had never met us, but stopped, hugged us up to her and prayed for my brother in that bathroom. It is moments like this that I will cherish in my heart forever. My brother’s church family had called a special prayer vigil for him while he was in surgery and my own church staff came together at the same time and prayed hard for him.
My brother survived surgery. Again, God carried him through. The situation was totally different than the surgeon expected. It appeared Marc’s right lung had become calcified in a way from the scarring each time they drew fluid off of it. The surgeon described peeling the calcification from his lung like an orange. His lung did re-inflate but was damaged. He came back from recovery with 3 chest tubes and ventilated still. He came off the ventilator once for a few days, but his oxygen levels and agitation forced them to reintubate him and eventually led to a tracheotomy. He had an infection in the right lung and it wasn’t long until the left (good lung) became infected as well. They had stopped his immunosuppresant drugs to encourage his body to fight the opportunistic infection but he was too weak. His liver soon began to shut down. His kidneys failed as well. He was on dialysis the last few days of his life and they were certain he would not have regained kidney function had he lived. He certainly would need another liver as well but he might not ever regain the strength to undergo another transplant surgery. His oxygen level began to plummet despite full ventilator settings. That last week was an emotional roller coaster for all of us. Even his doctors, who held out hope through it all, tearfully informed us he would not recover.
After calling the family all in and speaking with a palliative care physician, we chose to remove the ventilator, dialysis and feeding tubes, give him medication to make him comfortable and let him slip away from that sick body. I was with my sister in law when she made that decision. I have always loved her and felt close to her but that is a bond nothing can break. We held each other up until the rest of our family arrived.
With his wife holding his left hand, I holding his right, our family (Mom, Dad, cousin, aunt, nieces, nephew, and in laws) joined hands around Marc’s bed. My father prayed over him and as my Dad said amen, my brother took his last breath. It was the single most emotionally crippling experience I have ever had, yet the most beautiful. I held my little brother’s hand as he exited this world, took on wings like eagles and soared. He had a distant, peaceful look in his eyes. His body was there on that bed, but my brother’s soul had glimpsed heaven, he was reaching for our Heavenly Father’s outstretched hand and he was being ushered into eternity. We remained with him in the room after he died. We played music and we talked, cried and held one another.
If one could orchestrate their own earthly departure, it would have been exactly how Marc’s took place. It was perfect.
I miss him every day. I cry for him every day. I am going through the stages of grief just as the rest of the family. I worry for my parents. I worry for my sister in law and for my niece and nephew. I grieve that they will not know their dad the way I knew him. The way my own children knew him. But, we will keep his memory alive for them. And, he lives on in them and in our hearts.
I know this seems a bad ending. It looks like the miracles ran out and Marc lost in the end. But, that is the farthest thing from the truth. Marc had developed a catch phrase through the worst of his ordeal: God’s Got This. And, God did have it. He always had. He knew how this would play out for Marc the day he spared him on June 26, 1973. We do not have the answers, but we have faith. I saw a quote not long after Marc died: It’s not about finding the reason. It’s about trusting there is one.
Marc’s life is the happy ending. Marc’s life had purpose. I think of all those prayer chains and prayer lists. I think of all the lives he touched through his struggle. People he never had the opportunity to meet but impacted their lives just the same. I think of the testimony that my brother’s life was and still is. I think of all the things I learned from him. His struggle was not in vain. God had a purpose for Marc. It was not to live a long healthy life. It was to make a big impact in just 41 years!
There are two things I hope everyone learns from reading this:
1. Never take life for granted. Love one another, Don’t hold grudges. Take time to create memories and enjoy each day.
2. Don’t go another minute without Jesus. I cannot imagine the grief that I would be feeling if Marc had not been a man of faith. That blessed assurance that we are not truly saying goodbye is the most comforting of all. Marc’s favorite verse was Isaiah 40:28-31
If you have not become an organ donor, I urge you to do so. You can sign up online at http://www.donatelifearkansas.org. It’s as easy as a few clicks on your keyboard. If you have not ask Jesus into your heart, that is most important decision you can ever make.
In loving memory of Marcus (Marc) D. Ford.