Jared has always been a very private person throughout his life.  He never wanted anyone knowing he had any medical conditions.  He didn't want to be treated differently than any other person.  Jared is now ready to share his journey with all of you and maybe help others in the process. This is the only thing Jared could think of to do from the hospital.


Feel free to follow along with updates for Jared on my Facebook page https://www.facebook.com/brenda.fracker/
 

Birth to 6 Months 

Jared Brian Fracker was born a healthy 8lb 5oz baby on Friday, December 13, 1996.  He was a normal happy baby. Everything was going great.

 In January,1997, Jared was just a month old and he was having cold-like symptoms and was getting tired as he drank his bottle.  I remember rocking him all night because I was afraid, he would stop breathing if I put him down. First thing next morning I took him to the pediatrician, and when I got there, they examined him and told me to get him to Children's Hospital right away.  Jared was diagnosed with RSV (a respiratory virus) and was put on a ventilator for 14 days in the NICU.  Jared was able to fully recover and come home. 

During the beginning of March 1997, Jared started having similar symptoms he had in January.  I took him to the pediatrician.  The doctor said he heard a murmur and that we should quickly take him directly to Children's. The ER was waiting on us to arrive because the minute we walked in the door, they took Jared and said to follow them.  We went into this exam room and it was literally like I was in a movie.  The nurses and doctors had Jared on a table and were swarming him.  There were at least 20 people working on him.  All I could do is just step back and watch. I remember they had trouble getting an IV started.  They had to call in the IV specialist team and finally got one started in Jared's tiny head.  Doctors were able to stabilize Jared.  Over the next several days, the doctors performed many tests on Jared.  The tests were all coming up negative.  By the process of eliminating everything Jared could possibly have, the cardiologist that was seeing Jared, determined his diagnosis.  He told us that Jared has a very rare condition called Primary Pulmonary Hypertension (high blood pressure and narrowing of the blood vessels in the lungs).  There was nothing they could find causing this hypertension which is the reason it was called "Primary".  We were told that is a very rare condition and for a male infant, it was even more rare.  The cardiologist had only diagnosed 2 cases before in his career.  One patient he didn't know what had happened to them and the other patient didn't survive.  He said we had 3 choices.  1) Take Jared home and do nothing; 2) go to New York (Dr. Robyn Barst and Dr. Diane Kerstein) for 24-hour infusion medication (a test drug non-FDA approved called Flolan) through a central line in Jared's chest for the rest of his life; or 3) go to Philadelphia for heart and lung transplant. Option One wasn't even an option for us.  Thankfully, the doctor in New York called the cardiologist back first and that evening with our 2-year-old daughter safe at her grandparent’s house, we were boarding a plane for New York. My brother and his father-in-law picked us up in Newark, NJ and took us to Columbia Presbyterian in New York City in the middle of the night.  We were shell-shocked.  People laying in the hallways, overflowing in waiting rooms, etc.  We were rescued by Dr. Barst and Kerstein's team and taken to an exam room.  After getting Jared settled in, he went through several more tests.  On March 17, 1997, the doctor told us that he needed a heart catherization to accurately measure his pressures from his heart to his lungs.  If they were as high as they anticipated, Jared would come out of the cath with a broviac (line directly into his heart) which was attached to a pump that would continuously push a medication called Flolan into Jared's chest 24/7.  He would most likely need this the rest of his life.  He also needed to be on oxygen 24/7.  Sure enough, the next time we saw Jared, he was attached to this medical equipment.  The nurses taught us how to work the pump, mix the medicine daily, change the line, and how to care for the site where it entered Jared's chest. Let me tell you, this was so overwhelming!  We were willing to do whatever it took to let our little boy survive!  When he was stable enough, we were able to take Jared home along with all his new attachments. With all the new changes, Jared was still a happy baby.  Always laughing and playing.

 Follow-up visits to the doctors in New York were every 3 months at first.  They were usually a few days of tests followed by another heart cath.  We decided to do road trips because trying to schedule oxygen on the plane was not easy and a lot more expensive. Plus, the sister and grandparents could come along. On the first follow-up visit, Jared's tests and heart cath revealed that Jared had improved from March and he was able to come off the oxygen.  One less thing to carry, YES!

 
7 Months to 1 Year

 On Thanksgiving 1997, Jared's broviac came out of his chest. We rushed him to Children's Hospital because we were told abruptly stopping the medication could be catastrophic.  Children's had no idea about primary pulmonary hypertension.  Here we are trying to tell them just to start an IV right away and they were looking at us like we are crazy.  We were able to get in touch with the cardiologist that sent us to New York originally and he was able to help.  Jared got his new broviac surgically replaced and we were good to go. This happened a few more times throughout the years.

 Jared qualified for home health care so I could go back to work.  First day I left him with a nurse, I came home to find this softball-sized lump on Jared's tiny head. The nurse (while holding Jared) was sitting on our front porch swing and apparently the chain broke. Needless to say, I was reluctant to leave him again to go to work. I was assured that nurse would not be back. I never dreamed that the next nurses that came into our life would be amazing with Jared and also become lifelong friends! 

 Jared learned to crawl and was able to drag the pump behind him.  When Jared started to learn to walk, it was a little more challenging.  He would walk and pull the pump behind him.  He was too active for this to work long term.  I switched to the smaller cassettes that needed changed every 8 hours and no ice packs vs. 12 hours with ice packs. I made him a little backpack just big enough for the pump to fit into.  He had to learn to rebalance himself to walk again.

 
13 Months to 4 Years

NY Hospital stays and tests continued every 3 to 6 months for a long while.  Jared continued to improve, and the medications were adjusted for his weight, etc.  After a few years of continued improvement, we were able to space out the hospital visits to once a year. 
 

5 Years to 13 Years

Jared played tee ball and flag football with the backpack in tow.  It was time for Jared to go to kindergarten.  Of course, this was the first year the school district decided to have all day everyday kindergarten instead of a few days a week.  We debated whether we should send the nurse with Jared or not.  We decided to teach his teacher and staff about the pump and opted not to send the nurse with Jared. Things went very well.  Jared made lots of friends. One in particular befriended Jared and kept a close eye out to protect him.

In late March 2001, it was time for another trip to New York.  Jared went through the normal echo, ekg, x-rays, cat scans, blood work, etc. The doctors said over the last few years there had been developments of oral medications for pulmonary hypertension. If Jared's heart cath showed Jared was doing as well as the other tests looked, Jared would be well enough to be transitioned to oral medicines to control his pulmonary hypertension.  When he came out of the heart cath, he was on half the dose of Flolan that he was on when he went in.  Doctors rapidly decreased the dose and Jared was free from the line that was attached to him since he was 3 months old!!!  No pump, no mixing meds, no ice packs, no tubing, no backpack!!

With near normal pressures, Jared was free to be a kid and do most anything.  He never really had any symptoms of the pulmonary hypertension that he remembered.  He continued to play sports with the exception he wasn't allowed to play football. With yearly trips to NY, elementary into middle school was smooth sailing.
 

14 Years to 15 Years

Time for another NY visit.  Jared was still doing great.  There was a new development in the treatment of PPH.  The doctor wants to add this inhaled medication (Tyvaso) to Jared's regimen.  He would have to inhale a certain number of breaths from this pump 4 times a day. This required Jared to have to do this at school.  Jared wanted no part of anyone knowing about this so he took the pump to school with him but would not use it.  This was the beginning of Jared not taking his meds.

The hospital visits were spread out to every other year.  Results continued to prove Jared was doing great. Jared continued to be very active in basketball and baseball.  He even played football in his freshman year. 

Jared told the doctor in New York that he had not been taking his inhaled medicine regularly, so they decided to take him off of it and give him another pill.

 
High School Years

 During Jared's sophomore year, he tore his left ACL playing basketball and had to have surgery. Jared was determined to get back to playing, so he worked hard with the school trainer and he was able to get back to full speed much quicker than the doctor or trainer could imagine.

During the summer before Jared's junior year, he tore the right ACL.  Surgery again.  Jared worked hard and was able to be ready for basketball season.  Towards the end of the season, Jared tore his right ACL again.  Third surgery.  Jared knew all too well how much hard work he would have to do to get back in the game.  With the trainer's help and Jared's determination, he was back in no time.

 Early fall of 2014, Jared needed to have a tonsillectomy.  His surgery went fine, and he came home for a few days.  He ended up with an infection due to the surgery. On a Monday, I took Jared to the doctor because he was feverish and having cold-like symptoms.  He had an x-ray of his lungs and was told they were clear.  By Wednesday, he was struggling to breath, so I took him to the doctors and his oxygen level was in the 80's.  They sent us to ER at our local hospital and when we got there, his oxygen level was in the mid 70's.  Normal is 95-100.  The ER was not comfortable with Jared's pulmonary hypertension and was having trouble keeping him stable.  The x-ray showed double pneumonia.  He was then life-flighted to Children’s Hospital. Jared was in the ICU for a month.  He had several tests, was on a breathing machine, several antibiotics, and even had a chest tube inserted to drain the fluid on his lungs.  The football team was going to be on TV one of the Friday nights Jared was in the hospital.  Jared was one of the students that was supposed to be interviewed before the game.  Since Jared was not able to be there, his friends were interviewed and gave a special shout out to their friend Jared that was in the hospital.  He has some amazing friends.  We were told that it would be a long haul for Jared to come back from this.  Doctors said he should get used to the idea that he would have to wait until the following year to finish his senior year and to forget about playing basketball. Well, Jared's passion for "proving people wrong" took over.  He was determined to get out of there and get back to school and to not miss his senior year of basketball and baseball.

Knowing the fighter Jared was and the determination he had, we had confidence that if anyone could do it, he could.  He worked hard, caught up on all his schoolwork and was back in school and on the court in time for basketball.  Jared graduated on time with the rest of his class and was accepted to Cleveland State University.
 

College Years

 August 2015 came, and it was time for Jared to head off to college.  First time Jared would be responsible for taking his medication without me harping on him to do so.  Jared seemed to think that he did not need his medication like the doctors insisted he did.  He felt great and again his passion for proving people wrong took over. Jared took his medicine occasionally instead of regularly.  Eventually he just stopped taking it all together. I would break it down into the weekly cases and send it to him as usual.  Little did I know that this medicine I kept sending was piling up in a box somewhere. 

 Jared appeared to be doing okay as far as we knew.  When in fact, Jared was getting winded quicker and wasn't able to be as active as he used to be. He moved to Cincinnati for his job with College Works and he switched to online classes.

 On December 30, 2018, Jared was home for the holidays.  He was staying at his grandparent's house and was coughing and struggling to breath.  He took a hot shower hoping to break up anything in his chest, but it didn't work.  His grandmother heard him struggling and called me in the middle of the night.  She said Jared was having a hard time breathing and I told her to get him to the ER and I would meet her there.  No sooner did I get there, and they were saying he needed to be transported to The Ohio State University Ross Heart Center.  Again, we were soon in a helicopter headed for OSU.  This time it was pneumonia in one lung.  Jared and I rang in the new year in the hospital.  Doctors were able to treat Jared and in a couple weeks he was back home.

 
Post College Years

In January 2020, Jared wasn't feeling well and decided to drive from Cincinnati to OSU ER where he knew the doctors would know more about him.  His Primary Pulmonary Hypertension (PPH) was now called Idiopathic Pulmonary Arterial Hypertension (IPAH).  He was immediately admitted and was given oxygen and diagnosed with influenza B.  (We all believe it was Covid-19 before they knew what it was.)  He was pretty sick.  Not only did he have this flu, but his doctor also realized that his right side of his heart was very enlarged and very sick.  His pulmonary pressures were dangerously high.  Jared admitted that he had not been taking his medicine.  The doctor decided that the only way for Jared to have a chance to get better was to put him back on a similar IV medicine to the one he was on as a child. Only other option was that Jared be put on a heart and lung transplant list. Jared reluctantly agreed to the medicine.  The IV port was surgically inserted into his chest and he and his girlfriend had to learn all about the pump, making the meds, changing lines, changing bandages, and keeping the IV site dry.  He was sent home from the hospital with all the supplies for his pump. 

 Jared seemed to be doing everything he should be doing with the pump.  He was taking his medication regularly.  He started eating better and working out at the gym.  He was feeling good but wanted to give himself and extra 2 months before his follow-up with his cardiologist at OSU.  He wanted the doctor to be impressed with how he was doing. 

 
January 2021

Third January in a row!  Jared gets up and starts his day as usual.  He helps his girlfriend's mom with some projects around the house.  He goes to lunch with a couple friends in downtown Cleveland. After they eat, they walk a short distance to another place.  Jared said he was only there a few minutes and his legs started to go numb.  A couple doctors happened to be there and helped lay him on the floor.  They immediately called the mobile stroke unit and was given a "clot busting" medication.  Jared was alert and remembers giving the medics his name and condition.  He was taken to Cleveland Clinic ER where he had a CT of the head and neck.  Brian and I got a call that Jared had possibly had a stroke and was taken to Cleveland Clinic.  We rushed to grab a quick bag and headed to Cleveland.  That was the longest 2- and 3/4-hour trip ever.  While we were on the road, we got a call from the doctors.  During the CT, Jared started seizing and coughing and aspirated.  This caused his oxygen to drop so he was immediately intubated and put on a ventilator.  We arrived at the hospital, was joined with his girlfriend, and was taken to a waiting room for updates.  Doctors said even with the ventilator on its highest setting and Jared getting medications to raise his blood pressure, the doctors couldn't get Jared the oxygen he needed.  The doctors would have to take Jared off the ventilator and handbag him to get him enough oxygen.  Jared went into cardiac arrest and doctors lost his pulse for 4 minutes.  They did CPR and were able to bring Jared back.  They came out and told us what had happened.  They also said that Jared needed to be on a machine called ECMO which basically is heart and lung support and the last resort.  This is where Jared's blood is routed out the vein of his left leg through a large tube into a machine that oxygenates his blood and then pumps it back into the artery of his right leg and neck.  We were also told that most people don't leave the hospital after going on ECMO. 

Jared was successfully put on the ECMO and ventilator and was stabilizing enough to go the Cardiovascular ICU. We still hadn't been able to see Jared at this point.  We begged the doctors to let us see him as they wheeled him by to get onto the elevator.  They agreed to let us stand in the hall as they rounded the corner to take him to the CVICU.  It seemed like forever but finally, here they came, about 10 people wheeling the machines, IV poles, oxygen, ventilator, and the bed that our son lay in.  Motionless.  So many tubes of blood, lines and machines hooked up to him. 

We were moved to a new waiting area.  Occasionally, we would get an update that they were getting him situated in the room. Finally, around 3 a.m., the doctor came out to tell us that Jared was stable for now.  His body had been through a lot.  The machines are working for him.  They had him sedated. The doctors think that Jared had a clot backflow through the opening in his heart called a PFO. We were each allowed to see him for a few minutes.  We spent the night in the waiting room. Visiting was limited to 1 person for the duration of his stay from 11-7. 

For Continued Updates..... https://www.facebook.com/brenda.fracker/
 

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