The End

The infections began running rampant through Sid’s body. He was still heavily sedated and waiting for his medical flight to the Albert B. Chandler University of Kentucky hospital. After two weeks of waiting, Sid was finally put on a medical flight and taken to Kentucky. We got in our car and followed him to Kentucky by road. The first night Sid was there, he looked peacefully sedated. Dr. Hoopes ordered to immediately begin decreasing his sedation and waking him up by the next morning. Although his sedation was decreased, the amount of oxygen that was being added to his blood stream through ECMO was not increased to accommodate a more active state of his body. This lack of oxygen combined with the buildup of infections in his body, caused his body to go into septic shock. Sid went into a coma.
The next morning, we found Sid in his hospital bed with his eyes wide open but no recognition of his surroundings and no movement. The doctors hoped they could get Sid out of this state and put him back on track for another transplant. Unfortunately, Sid’s body had other plans.

First, his kidneys began failing so they connected him to a dialysis machine in addition to all his other machines. Then, his liver function decreased and soon, his heart. Sid went into cardiac arrest about 2-3 times every week for the next three weeks because the infections got into his blood stream and were creating blockages in his heart. Externally, he got an eye infection in his right eye from his eyes being permanently open and his right foot began turning purple and black because of a blood clot in his right leg.

The doctors decided to connect another ECMO catheter to his groin to help with the blood clot in his lower body. They also did this procedure to see if Sid would react to the pain caused by this surgery. To their dismay, even without anesthesia, Sid had no reaction to the surgery. The doctors did not give up and continued to put their faith in Sid. At one point Sid began involuntarily moving his arm. We were delighted at this sign of life, however, the doctors reminded us that this was involuntary muscle movement and did not mean that Sid was gaining consciousness. They also did an EEG test to see if he had any brain activity. Not surprisingly, the test showed very little brain activity.

After the constant failing organs, and several heart attacks per week, Sid’s body began to give up. Early Sunday morning on May 18, 2014, we got a call to go to Sid’s room immediately. His blood pressure had been wavering all night and it was dangerously low. We were used to seeing him this close to death many times now but this day felt different. The doctors and nurses monitored Sid closely all day. He was slipping away. We all talked to him hoping he could hear us and told him to keep fighting. By around 10:00 p.m., Sid was gone, however, Dr. Hoopes, unable to let Sid go, kept trying to bring him back to life. He tried for almost another 45 minutes to adjust his ECMO settings. Finally, at 10:37 p.m., he pronounced Sid deceased.

Although we lost Sid on that day, he was and always will be the life and joy of this family. This blog was created to share his intricate medical journey publicly and to help others who might be going through a similar situation see the possibilities. We also established The Sid Foundation (thesidfoundation.org) in May 2015 to raise funds and awareness for lung transplant research and to keep Sid’s memory alive.

Thank you friends, family, doctors, nurses, hospital staff, and strangers for your support, kindness, and hard work through Sid’s difficult journey. We are eternally grateful to all of you.

Thank you for reading this blog and we hope that it inspired you as much as Sid inspired us with his courage.

UAB

Sid was out of breath. He knew this was a serious situation. He was on the road by himself on a 2.5-hour drive from his home in Atlanta to the University of Alabama hospital in Birmingham, Alabama (UAB). Somehow, Sid made it to the hospital just in time for them to take him in alive. According to Dr. Diaz, if he had reached there a couple of minutes later, he would not have made it alive. Dr. Diaz and his team quickly stabilized Sid in the ICU of UAB hospital by inserting two big catheters in his neck, just like before, and put him back on ECMO.

They began giving him slight sedatives so he was in and out of consciousness while they figured out the next step. Sid had been experiencing lung rejection for some time and now his new lungs were dying. He needed another transplant.

Dr. Diaz contacted Dr. Hoopes at the University of Kentucky hospital to check if he wanted to take Sid back for another double lung transplant. Dr. Hoopes agreed. Dr. Diaz and his team began preparing Sid to fly on a medical plane to Kentucky just like he had once before.

Every day, we expected Sid to fly out, and he didn’t leave. The hospital didn’t have access to many medical planes and bureaucracy was getting in the way. Things kept getting delayed. Sid had now been in the ICU of UAB hospital for two weeks waiting to fly out. Meanwhile, he began contracting infections that typically exist in a hospital. Because Sid had been on immunosuppressants for the last 2.5 years, his immune system was unable to fight off these infections. Still waiting to fly off to Kentucky, Sid was completely sedated due to his weakened state. His situation was getting dire.

Happy Birthday

Today, January 2, 2017, would have been Sid’s 32nd birthday.

Today we celebrate the fighter Sid who beat all the odds and won a second chance at life. As we bring in the new year, we hope to continue to share his inspiring story with others and continue to raise funds and awareness for lung transplant research through The Sid Foundation.

Sid is loved by many and his medical journey broke through many medical boundaries. Family, friends, and doctors alike learned invaluable lessons from Sid’s journey. We hope that his amazing story provides strength to others going through the same challenges he faced while fighting for his life. We also hope to face this new year with all the strength and determination of Sid our superhero.

A New Life

Sid was enjoying life again. After his lung transplant, he wanted nothing more than to go back to his old life. Eventually, he got most of his old life back. Of course, he had to make some significant changes in his lifestyle like keeping up with his medications, eating healthier, being more active, cutting down on his alcohol intake, and quitting smoking. In the beginning Sid took these changes as a challenge. He was determined to beat the dreary statistics. Of course, no matter how well Sid managed his lifestyle, being a lung transplant recipient greatly reduced his chances of surviving past five years. But because of his attitude and his young age, the doctors were hopeful that he would be able to live on his new lungs for about ten years. We knew it wouldn’t be an easy ten years but we were hopeful that Sid would beat the odds.

For the next two and a half years, we were grateful for each passing birthday. Sid turned 27, then 28, then 29. Those were all birthdays we weren’t sure would come.

Sid got used to his new life. First, he began skipping some medications here and there and didn’t think much of it. After all, his body had survived this long without rejecting his lungs so it must be okay. His pulmonologist moved from the University of Kentucky Hospital to the University of Alabama Birmingham (UAB) hospital so now Sid only had to drive 2.5 hours away from his home in Atlanta for his checkups every three months instead of driving 5 hours to Kentucky. Things were getting easier.

In the winter of 2014 Sid skipped his routine checkup with his pulmonologist, Dr. Diaz. During the following days, Sid began to feel weak and started to have breathing problems again. Finally, on a beautiful spring day in April 2014, Sid drove himself 2.5 hours from Atlanta to UAB Hospital. He couldn’t breathe.

Home

Sid was back home for the winter. He walked slowly with a cane. He sold his truck and bought a sedan so he could get in and out of his car easily and began driving to work. In the evenings after work and on the weekends, he played with his dog, Oscar, went out to dinner, and visited friends. Of course, he enjoyed nothing more than sitting on his couch at home playing video games while enjoying a bottle of beer.

The last thing to come back to him was the feeling in his toes. One day, soon after he returned home, Sid went to the pool and accidentally ripped his toenail off while walking in the pool. He didn’t realize it until he got out of the pool because he had no feeling in his toes for months. Fortunately, the damage wasn’t too bad.

Little moments like these were a constant reminder of how much he had been through and how his life had changed. Another constant reminder was the amount of medication he had to take every day to stay alive. Sid had to take more pills in one day than most of us take in five years. He had to take immunosuppressants to weaken his immune system so it didn’t attack his new lungs, he had to take steroids, antibiotics, antifungal, antiviral, and many different types of medication every day because his immune system could no longer protect him. He also had to make sure to travel to the University of Kentucky hospital every six months for a check-up. Not only could he no longer smoke, he had to stay away from second hand smoke as well. He also had to avoid crowded places and airplanes for the first six months.

In the year 2012, about six months after his transplant, he slowly began to travel and enjoy outdoor activities. His outpatient physical therapy at Emory was helping. He no longer needed a cane to walk. He was now truly independent.

On January 2, 2012, he lived to celebrate his 27th birthday.

It was a day we thought we would never see. We were grateful for it but still cautious. Living as a lung transplant patient, Sid was never truly out of the danger zone.

Cardinal Hill Rehab

Sid spent October and November of 2011 in the pulmonary wing of Cardinal Hill, an inpatient rehabilitation center in Lexington, Kentucky. When he got there, he was provided with a smaller, lighter wheelchair so that he could move around the facility on his own and gain some independence. He no longer had hours of therapy with Tia and Gina every day but he was also no longer constantly surrounded by nurses and monitors. Here, he had to show up to the gym within the facility from his room at certain times every day so that his therapists could take him through his exercises. This rehab gym consisted of all types of workout equipment from walking bars to stationary bike type of machines modified for patients who can’t walk.

Although still very motivated to keep getting stronger, the more independent Sid became, the more impatient he became with the facility. He wanted nothing more than to be at home sitting on his couch, playing video games, and drinking beer. He missed his job and his social life. Soon Sid began to walk longer distances with only the help of a cane and by winter he was discharged from the rehab facility and allowed to go back home to Atlanta.

Of course, there was a caveat. He had to return to Kentucky for regular check-ups with Dr. Hoopes and Dr. Diaz every three months for the first year and every six months after the second year. He had to attend an outpatient rehab at Emory University Hospital in Atlanta until he was able to walk independently of an assistive device. He also had to now learn how to take care of himself without the constant help of his nurses.

Discharged

Sid was in Progressive Care for about a month. Within that month he quickly progressed to walking down the hallway with his walker, getting himself in and out of bed on his own, eating regular food, standing up and making peanut butter jelly sandwiches for himself, and making coffee for his dad. It was football season, and Sid spent hours sitting in his hospital room so even though he was never into sports before, he began fervently watching football.

By this time, September 2011, we felt sure everything was going to be okay. We finally left the unknown and everything was going as planned. Sid made it through after all. He had a new life. He didn’t need as many wires and monitors connected to him all the time. He began to look more like himself. An extremely skinny version of himself. He cut his hair, shaved his own face, and put his glasses on. He got rid of the hospital gown and put on a pair of basketball shorts and a t-shirt that hung loosely against his thin, frail frame. His hands were strong enough to hold his phone again so, of course, he got right back into social media. The signs of a normal 26-year-old man were returning to him.

The doctors began talking about a discharge date. They sat him down and discussed his medications and the daily routine he would follow once he left the hospital. They told him that he would have to change his lifestyle completely including his exercise routine, his diet, and his alcohol consumption. Since his immune system was being suppressed by his medications to prevent rejection, he could not fly in an airplane for six months, and had to avoid crowded places. Of course, Sid could no longer smoke or even be around second hand smoke. With this information, Sid was finally discharged. Sid was still weaker than normal and could not walk independently so he was sent to an inpatient rehabilitation center. He was out of the hospital but not quite home.

Eye of the Tiger

There was no time to waste after Sid had his double lung transplant. He had to get up and walk as soon as possible. Dr. Hoopes informed us that once lungs are transplanted into the patient’s body, they begin to deteriorate after about six months despite the medication and a healthy lifestyle. If the patient does not use the new lungs to their full capacity, they will begin to deteriorate even sooner. Sid’s physical and occupational therapists worked just as hard as him. They put him on a strict schedule. He had about 3-4 hours of physical and occupational therapy every day. They put the nurses in charge of making sure he sat up in his chair for at least 3 hours every day. They trained us, the family, to make sure he exercised throughout the day even when he didn’t have scheduled therapy. During his therapy sessions, he was forced to stand up straight using a tilt table or a standing frame so his body could feel what it was like to stand up once again. He had to learn how to brush his teeth and hair. He had to sit unsupported at the edge of his bed for several minutes each day.

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Sid progressed quickly. Before long he was able to start bathing himself while sitting, shaving his face, and even standing up with a walker on his bedside for a minute or two. However, he would not walk again for months. Sid’s progress did not go unnoticed by Dr. Hoopes. By September, a little over a month after his transplant, Sid was moved out of the ICU into Progressive Care. This meant that although he still needed constant supervision from the nurses, he was no longer as critical of a case. Watching Sid sweat and push himself everyday as his therapist played or sang “Eye of the Tiger” in background made our hearts lighter. Hearing him talk again after months of silence and making everyone around him laugh made the circumstances feel somewhat normal. For the first time we believed that Sid was going to be okay.

Determination

The morning after Sid’s transplant, we went into his room early to see if he made it through the night. For the first time after 55 days, his chest moved up and down on its own accord to the natural rhythm of his own breaths. Someone else’s lungs were doing the work that his own lungs had failed to do. Someone else’s lungs were now keeping him alive. It was a strange and beautiful sight.

Dr. Hoopes came into the room and handed Sid a blue popsicle. He said Sid needed to start eating food to increase his strength. He had to ween off the feeding tube. Sid could barely hold the popsicle in his weak fingers. We were told not to help him. My father and I watched Sid struggle with that popsicle for almost an hour as he lay in his hospital bed. First, he had to figure out how to grip the popsicle in his fingers. It fell out of his hands a couple of times and we handed it back to him.

Next, he had to muster the strength to lift his arm high enough to bring the popsicle to his mouth. Once he brought the popsicle close to his face, he used all of his concentration to aim the popsicle into his mouth. This was the hardest part. It took many failed attempts before he was able to coordinate his hands and his mouth. Then came the strange part of eating the popsicle. His mouth and throat had been home to numerous tubes over the past three months. He now had to figure out how to use his mouth and throat for normal functions like biting, chewing, sucking, swallowing and speaking. As difficult as it was to watch him struggle to eat that popsicle, Sid’s determination shined through. As frustrating as this task was for him, he did not give up and an hour later, he did it.

Dr. Hoopes came into Sid’s room soon after to see if he had conquered the popsicle. His blue lips and mouth gave him away. Without uttering a word, Dr. Hoopes handed Sid a red popsicle and left the room. This time Sid knew what to do and accomplished the task much faster.

Double Lung Transplant

Two weeks after moving to the Albert B. Chandler UK Hospital, Sid was still unable to walk, sit-up on his own, feed himself, or talk. Dr. Hoopes found a donor for Sid early in the morning on August 9, 2016. Although Sid was still very weak and did not meet the criteria to qualify for a transplant, Dr. Hoopes had faith that Sid would come out of it based on his determination to get better during his physical therapy sessions and the fact that Sid was only twenty-six years old and all the organs in his body, except the lungs, were perfectly healthy. Dr. Hoopes got on the hospital’s plane and flew to Cincinnati, Ohio to retrieve the lungs. It took him about three hours to fly to Cincinnati and come back with the lungs. In the meantime, the nurses began to prepare Sid for surgery.

It was the longest day of our lives. Sid’s surgery took about 8 hours. He went into surgery in the afternoon. We spent the day in the surgery waiting room, nervously pacing back and forth, unable to eat, and unable to think clearly. We received many phone calls throughout the day from family and friends asking us for updates on the surgery. We didn’t know what to tell them. We didn’t know what Sid was going through in the operating room ourselves.

After a few hours, we received an update that one lung was successfully transplanted and that they were working on the second lung. We had been looking forward to an update all day but found no relief in it once we heard it. We were told all the risks and possible scenarios of the surgery before Sid went in. We knew Sid was weak and there was a chance he may not survive the procedure.

Finally, around midnight, they told us that the transplant was successful and that Sid was back in his room in the ICU where we could see him. We went over to the ICU lobby where Dr. Hoopes met us and explained the surgery to us. Twice during the surgery Sid’s vitals had dropped. His original lungs were like cottage cheese when Dr. Hoopes opened him up. They were too destroyed to send to the pathologist for tests so we could never know the exact reason why his lungs died. Despite some scary moments, Sid made it through the surgery successfully and was now in his ICU room recovering from his surgery with his new lungs.

We walked through the visitor door into the familiar ICU still holding our breaths as we had done all day. Sid’s room was dark and he was asleep. A wave of relief washed over us as we saw him peacefully resting after his surgery. His second life had begun.

Remembering the one and only Sid Vahal