WALKING TO SPREAD THE WORD ABOUT RICKY, LongQT AND S.A.D.S.
It all began with Ricky over 2 1/2 years ago....The school nurse alerted us to Ricky having high blood pressure during his routine sports physical that takes place in the summer and suggested that we take him to his doctor for further testing. The doctor ordered several blood tests to try and detect if organs were shooting us any warning signals. They came back normal and the doctor felt that there was no reason to be concerned, (since Ricky, at almost 6'5" was in excellent condition and boys at that age tend to have this from time to time!) and decided we should treat him for the high BP. Ricky's grandfather died from a massive heart attack at the age of 41 so I asked the doctor if we could check his heart. The doctor had an EKG done while Ricky was in the office and the doctor was concerned with the read-out of that test. He referred us to an excellent cardiologist, Dr. Storch, and Ricky began more testing that involved a stress test, chest x-ray, ECG and a heart monitor of which he wore for a month. At the end of that month, Dr Storch had an electrophysiologist look at the results where we were told that Ricky had Benign VT and that at this point he was healthy and good to go...no concerns at this point.
That was October 2008....just in time to pursue his love of basketball for his HS team and to further play in Spring 2009 for an AAU travel hoops team.
Well...the summer came and went and Ricky began preparing in October 2009 for his upcoming Senior basketball season. He was taken down while running the track at school by pressure on his chest and the feeling that he was going to pass out. We took him to the ER that evening, only to further follow-up with his cardiologist who suggested he now have an EP(electrophysiology) study performed to find out what is going on. So up to Buffalo to see the doctor. This test involves sending 4 catheters up through his vein in his leg that attach to the heart. From there, the doctor sends electrical currents to the lobes to see what kind of reaction occurs within the heart. That test yielded good results and he again was given the ok to pursue basketball for his senior year at ALCS.
Ricky went on to play that Sr. season of basketball, write, direct and participate in a musical called Modernology(with 3 other senior classmates) that raised funds for St Lukes Mission of Mercy out of Buffalo and finished strong with track and field. At the graduation ceremony, Ricky gave the Farewell Speech and we all celebrated in our family all that he had accomplished during his 4 years of HS. So long to ALCS and looking forward to Univ. of Pittsburgh at the main campus in Pittsburgh!!
The day after graduation, June 28, we were all at home, trying out a high aerobic exercise program as a family. Upon completion of the program, Ricky began to stand up and then crashed to the ground into a ball, right in front of us. At first, we were thinking that with the heat and such, he was fooling around with us. It took just a brief second to realize that he was not responding or moving. We rolled him over, only for him to go into what appeared to us, was slight seizure activity. Rick, my husband, immediately called 911 as I was trying to get Ricky to respond to me on the floor. Within minutes, 6 EMT's descended on our house and after about 10 minutes of chest messaging and preparing him for IV's, while also wrapping him in cold compresses, Ricky finally came to. He raised up, only to go back down into almost a hyperventilating state. They were able to finally get him into a somewhat normal rythmn and at that time, they prepared him for transfer via the ambulance. Rick went with the ambulance and I followed up, only to find Ricky in what seemed like to us, a semi-catatonic state in the ER. It took about an hour for him to fully come around. He could hardly move and barely seemed to have the energy to talk to us. He stayed there for a few hours being monitored to see what was happening. His readings appeared to be normal but his cardiologist wanted him to stay in ICU overnight.
The next morning we got the call early from ICU that Ricky was being transferred from our hospital up to Buffalo General where he would have further testing done. He was taken by Trans Am and once there, he began having testing over the next few to days to include an angiogram, EEG, carotid artery checks, etc....You name it, he got it done... They debated on also having another EP study done but since he had just had one in the Fall, with the results being good, they decided to not do that. After 4 days of testing, they did not find anything wrong and he was sent back home.
A week later, his cardiologist in Olean contacted us and said he did not like the sounds of everything and wanted us to have the EP study done. He contacted another doctor who agreed to perform the study and back up to Buffalo Ricky and his dad went, as I stayed back to prepare for Ricky's graduation party and welcome out of town guests. We all thought that nothing would be found but once and for all it would rule out any questions and he could go on and look ahead to college that was coming up in 6 weeks.
I can remember that moment like it was yesterday....Rick called to say the results were not what we had expected and that this time around, they were able to take Ricky into defib. As they did, the EKG read-out identified what he had, LQT Syndrome. It was a catch 22....we finally had a name to what has been affecting Ricky over the last few years yet we had no idea what it was and the ramifications of this syndrome. The doctors at first were going to let him come home to celebrate his graduation and we went as planned for the party. The next day, Rick again called to say that they could not release him knowing that there was a possibility of something severe happening to him now....this was a Saturday, one day before his graduation party. We scrambled to cancel everything and those friends who had come into town for his party went up to Buffalo to visit Rick and Ricky. We knew that at least he was in good hands and now we needed to decide what the options were.
For Ricky....we were not sure of what level of LQT he had...did we do just the Beta Blocker and hope that would keep him safe? Did we also have a defibrillator implanted since we did not know the level so that he also had an insurance policy? Ricky, all of 18 years old and full of wisdom, said, 'Mom, can we really take a chance?" We knew we could never live with that if anything happened and on Monday, July 19th, Ricky underwent surgery and had the defibrillator implanted just over his chest muscle. So much we learned in such a short amount of time......
We have been so fortunate.....Ricky was showing us symptoms over the last few years of LQT that most do not. Sometimes the only symptom others show is the cardiac arrest, of which they do think Ricky went into that Monday, June 28th and thankfully we were with him when it happened. He has gone through some challenging times over the last 8 months and continues having challenges to this day....but he has come out thankfully on the other side and he continues his Freshman Year at the Univ. of Pittsburgh. We have even gone on to have him genetically tested in order to see if there is concern that others in the family needed to be tested. Right now, they are saying that Ricky is in the 25% category of those with LQT where there is no known genetic link therefore Kyle and a nephew do not need to be tested at this time. But Ricky is also a work in progress...at 19, they are not sure still of meds and his defibrillator levels. He was recently shocked twice when his heart rate went up so quickly that the defibrillator did not know if he was having cardiac arrest or not. That had him back with a new EP doctor at UPMC in Pittsburgh where again his meds and the defibrillator levels have had to be changed. But at least we know everything is working and thank goodness he is alive.
One of the things that Ricky will not be able to do now in his lifetime is to be involved with an endurance activity, such as a marathon, etc....(Not quite sure he would have ever actually wanted to!) So...in honor of our son and for all others affected by LQT Syndrome and those Syndromes that fall under S.A.D.S, my husband and myself, along with a few great college friends, are participating in the Bataan Memorial Death March on Sunday, March 27th, 2011. The Bataan Memorial Death March is a 26.2 mile challenging walk through the high desert terrain of White Sands Missile Range, New Mexico, conducted in honor of the heroic service members who defended the Philippine Islands during World War II, sacrificing their freedom, health and, in many cases, their very lives.( http://www.bataanmarch.com/ ) Rick is a 22 year Army Veteran, who has participated in this event before and we have talked about doing it together one day. I thought if we were going to do this, I needed to do it for a cause. What better way to bring information to those we know about LQT and the SADS Foundation and to also try and raise some funding for research.
We are lucky.....Ricky is healthy and is going to have what we hope to be a long, happy and healthy life. This is for others.....to get out the information on not what Ricky went through but the fact of what he has!
If you can help out, that would be awesome. If not, we understand. Just please take time to read up on these syndromes and become familiar with them. You never know if someone around you is shooting symptoms of these conditions. Education is empowering!
Thank you for your time....Take care and God Bless!
Michele, Rick, Ricky and Kyle