Sydney Swyryn thought this was supposed to be her best summer ever.
She had just graduated from Perry High, where she was in the color guard with the Panther Regiment, turned 18 in July and was looking forward to starting college at Georgia Southern University in the fall. On July 21, only a few days after her birthday, her life suddenly took a detour and was forever changed.
“On Monday, I noticed my right leg started to hurt,” she said. It just felt like a pulled muscle, so I didn’t think anything of it. By that night it was really swollen and purple. My parents had me ice it and keep it elevated.”
That morning, she was taken to Houston Medical Center where she was diagnosed with deep vein thrombosis, or DVT. She had a blood clot running the entire length of her leg. She was scheduled for surgery the next day to insert a catheter into the clot that would directly administer a clot busting medicine. They would do a CT scan afterwards to try to pinpoint the cause.
“They were planning to do the CT after my surgery because they thought I would have to drink the contrast dye and I wasn’t supposed to eat or drink before my surgery.” she said. “I was so hungry before surgery so Mom asked how soon after the procedure they would do the scan. My nurse called radiology and found out the dye would be through an iv, so they were able to do the scan on the way to the OR.”
That is when they discovered the clot extended further up into her abdomen. Having made that discovery, her condition was more serious than once thought and would require a vascular team if something went wrong. Dr. Noman Malik made the decision to send her by ambulance to Emory University in Atlanta that evening.
“I’m glad they did the scan first and Dr. Malik made the call he did. Otherwise, I might have died. ” Sydney said.
Once she arrived to the ER at Emory, an interventional radiology team was called in to the hospital and she was taken into surgery at 11:30 p.m.
“They inserted a central line into my neck and placed an IVC filter into my inferior vena cava. It was to catch any large clots that might dislodge from traveling into my lungs. That would have caused pulmonary embolisms and could have killed me,” she said.
The procedure was done under sedation and did not call for general anesthesia. That is when they found she had an adverse reaction to Versed, a commonly used sedative to make a patient sleep and forget during twilight procedures.
“The medicine made me shake and cry uncontrollably. It was awful. I heard and felt everything and I didn’t forget any of it,” she recalls. She was then moved to the ICU.
The following morning she underwent the second procedure, the one originally planned at Houston Medical Center. A catheter was inserted through her neck into the clot in her abdomen. Even though they changed what sedatives they used, she says she was too anxious to relax and still stayed awake.
“I still cried because it was terrifying, but at least I wasn’t shaking.” she said. With the clot being so extensive, they had to do a third surgery to insert catheters into the clot from the back of her knee, into her thigh. Since the clots were so extensive, stents were placed at the top of both thighs to help prevent future clots. That surgery lasted six hours.
“They started me on a drug called heparin to thin my blood and keep more clots from forming. They couldn’t get to the clot in my lower leg because the veins were too small from all the swelling, so they were hoping once the other areas of the clot were dissolved, that it would help with circulation and reduce the swelling.” Once again, she remembered it all.
She spent the following day in her ICU room being monitored with two IV poles full of medicines, hooked into her at four different places of her body. She was being seen by four different specialty teams.
“That whole week was a blur,” she said, “but all my doctors and nurses were awesome. They took great care of me and my family.”
While most things seemed to be improving, her leg continued to swell. The surgeon explained she was developing compartment syndrome, by which swelling becomes so great that there is no more room within the skin for the muscle and other tissues to expand. He told her the procedure they would perform to alleviate the pressure is a fasciotomy. A slit would be made on both sides of her calf, approximately eight inches in length, allowing her muscle to swell out. Their goal was to return circulation to her calf and to hopefully avoid nerve damage or amputation. It would be performed under general anesthesia.
“While I didn’t want another surgery, I was relieved to hear I would be completely out for that one,” she said. Since she was on blood thinners, she received two units of blood during surgery. Then came more monitoring for signs of improvement.
The following day, they changed the dressings and examined the surgical site. “That was painful,” she said, “I cried. I hate to cry. Everyone said it was O.K., but I told them I’m an adult now. Adults don’t cry.”
While the surgery went well, Sydney could not feel or move her foot. This was a great concern. Two days later, hoping to extend the length of the fasciotomies and relieve more pressure, her vascular surgeon had to deliver bad news to Sydney and her family.
“I woke up from surgery and Dr. Dodson was there with my parents. I thought he was going to tell me good news, but he didn’t have any,” she said. “They realized it wasn’t working and discovered that my calf muscle was necrotic. It was starting to make me sick. I had a fever and my heart rate was 150. He said they would need to amputate it.” she recalled.
Her sixth surgery would be the next morning, on July 30. As soon as the leg was removed, her vital signs immediately began to improve. She was moved from the ICU to a private room two days later.
“My room was SO small,” she said. “My mom and dad had a room at the Atlanta Hospital Hospitality House but took turns staying overnight with me. I had a lot of what they call phantom pains. I had pain in the foot that was no longer there. I hated it. I still do.”
Sydney was finally on what will be a very long road to recovery. Not only was she recovering and beginning a new life as an amputee, but also she had to deal with what caused her situation in the first place: a clotting disorder.
“From the minute we arrived at Emory, we saw many doctors and nurses,” she said. “They all asked if there was a family history of blood clots. Our answer was no, but my dad had blood work done a few months earlier, and his doctor said he tested positive for something like that and to take an aspirin. He never said it could be genetic, or to have his kids tested.
“I had a complete blood work-up done when I was at Houston Medical. They took 15 vials. I have always been afraid of needles and it was not fun.”
The test results would take approximately two weeks. They were delayed longer, as they were going through the system and getting transferred to the hematology department at Emory. In the meantime, her doctors discovered she had an allergy to Heparin. While it is designed to thin the blood, in her case it did just the opposite, making the platelets sticky.
“Sticky blood causes clots. So I had to be put on a drug called Argatroban. Unfortunately, it can only be given though an IV. Did I mention I hate IVs?” she said with a smile.
Between all the blood needing to be drawn to constantly test her levels and blood loss during her surgeries, her blood level dropped to a seriously low level.
“I felt so tired,” she said. “I had a lot of visitors who drove up from as far as Perry and from Pike County, where I was born and lived for 14 years. They all said I was very pale.”
The decision was made to administer two more pints of blood to her that afternoon. Her color retuned before the transfusion was finished.
All of these events meant a setback for her release date. It seemed Sydney and her family constantly got their hopes dashed as one thing led to another, causing no one to really know how long she would have to stay. The saving grace for them came when the vascular doctor said she could go outdoors and even go to nearby restaurants.
“Mom and Dad pushed me in a wheelchair to some really fun places. It was good to be outside in the fresh air and sunshine. I even did my walking exercises with a walker while outdoors.” she said. “I had times when I felt like everyone was staring at me, and that made me feel uncomfortable. But I knew it was something I would have to get used to.”
Physical therapists visited most days to help her gain her strength back and to learn how to navigate with one leg. She surprised them every day they came to work with her. She had learned many things on her own. The original course of rehabilitation was for her to be moved to an acute rehab facility, meaning she would be admitted to the facility for a week to ten days before getting to return home.
“The good news about having to stay so long in Emory meant I was able to learn those skills before I was released,” she said. “So I was cleared and didn’t have to go to rehab after all. Once I got released, I would go straight home. I was so happy about that!”
Once her blood levels rose to an acceptable level, she was ready to begin a blood-thinning drug called Coumadin. Depending on what her test results would show, she could possibly be on it for the rest of her life.
“When they were ready to start me on Coumadin, they said it would take a minimum of five days for it to build up in my system and become therapeutic,” she explained. “A couple of days into treatment, my mom noticed my foot looked swollen. This was scary to us after what we went through and I lost my leg. They did an ultrasound and discovered I had a clot in my upper left leg.
“The hematologist said we would have to stop the Coumadin for a few days to let the Argatroban thin my blood back out and start the five-day process all over again. My vascular surgeon said he wasn’t surprised, as I was on Heparin for quite awhile before we learned I was allergic. Nothing to be alarmed over, just it meant a longer stay. Thank goodness for being able to leave in between pain med doses and IV bag changes. It was a painful time and I didn’t feel good, but we tried to make the best of it.”
During that time, her lab results were finally in. Sydney tested positive for Factor V Leiden, the same as her father.
“Dad never had a problem of clots. We found out women are more prone to have clotting issues because hormones play a big part. Also, he’s very active. They say mine happened because I was on birth control, had taken the Guardasil shots a couple months earlier and wasn’t as active as I had been during color guard season. All those things added up, but they were still surprised at how extensive my clots were. As of right now though, they think I will only need to stay on Coumadin for six months. That makes me happy.”
After another five days of dosing, testing and waiting, she was finally released from the hospital.
“I had come to know so many of the nurses on the fifth floor. They were all so wonderful. I was really going to miss them,” she said. “But that’s O.K. I was getting to go home and I was ready. My sister Lauren was in Perry all the time I was in the hospital. She had band camp and was about to begin school, so our aunt came to stay with her. I really missed her, but I knew it was best to keep things as normal as possible for her. I was really looking forward to seeing her.”
Throughout her crisis, she and her family experienced an outpouring of support from friends, family and even people they had never met.
“My mom started a Facebook page called Sydney’s Journey,” she said. “It was really amazing how many people wished me well and prayed for me. The Panther Regiment band members and their families helped Mom and Dad out with the cost of staying at the hospital for a month. I feel like they are all a part of our family. It’s one of the reasons I loved marching so much.
“Once we were home, a friend started an account for us on Meal Train, where people could sign up to bring dinner to us. It was great. Mom and Dad were trying to get back to work and I know my situation added to their stress. I am amazed at how thoughtful everyone was to think of us and help take some of that stress off of them.”
This week, Sydney will be getting her prosthetic leg. With it will come lots of physical therapy and challenges.
“I’ll be happy when I can be independent again,” she said.
Adjusting to a new normal has been challenging for this young lady, but she proves to be a fighter. She has handled her situation with strength and a positive attitude.
“I know this is going to be a long-term journey, but I have accepted it. You don’t really have a choice to just sit around and mope; it won’t do you any good to sit around and be upset. I love how my friends are still treating me like normal. They were there for me while I was in the hospital, and now it’s like ‘hey let’s go shopping!’
“I still plan on going to college in the spring. I’m going to go to Georgia Southern University and want to major math. My goal is to gain my strength back within a year to do color guard again. I also would love to get to where I can join a professional color guard. It is what it is and I’m ready to move on.”
You can read more and follow Sydney on her journey on Facebook page at www.facebook.com/sydneyswyrnsjourney or http://vrphoto.wix.com/sydneysjourney.
Donations can be mailed or dropped off at The Bank of Perry
1006 Main St., Perry, GA 31069
Attn: Christy Graham
Mark them for “Sydney’s Journey”
Benefit Concert for Sydney Swyryn
Thursday, 7-10 p.m
El Cotija Restaurant
109 Margie Dr
Warner Robins
Come out for a night filled with live music, good food, and fun! Local musicians and bands featured are Tres Hombres, Bruce Brookshire, Ez Cleghorn, and Pete Bertchum. There will be an auction for great items and services donated by local businesses and talented individuals.
All funds raised will be used to help cover medical bills not paid by insurance, medical related travel expenses, etc. Can’t make it and would like to still help? You can make a donation and keep updated with Sydney’s journey at http://vrphoto.wix.com/sydneysjourney.
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