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Sports

katiesoftball26
0 Recommendations

I'm 15 years old and sports, well softball, is my life. I play on a competitive travel team. We go all over. The varsity team at my high school just won state. Obviously, softball is a huge deal to me and my life. Just recently (well three days ago =]) I was told that I should stop playing all sports due to having LQTS. In about November of last year I started having multiple ekgs that show that the QTc number in the 460's-490's range. I've had an echo, a treadmill stress test, and a holter monitor. They let me off saying everything was about "border-line normal" and to come back after schools out just as a "checkup". Well turns out my numbers got "worse" so I had to do the epinephrine challenge and they got about half way through the initial test and my QTc number was already in the 540's range and they stopped the test. We are trying to get genetic testing done right now through Famillion but our insurance, Blue Cross/Blue Sheild is not cooperating. I've never had anyone in even distant family have this and don't know how it can randomly show up in me. The only thing is that my dad was adopted. So we don't have his family history on record. Should we consider trying to find his? I really don't know where to turn with this. Again softball is my life. Its what I live for. I'm on the beta-blockers (Nadadol) right now and have been for about two weeks. So I mean I'm probably not like most of you who have had to deal with this for your whole life, it's all new to me. Is there any way you think I might be able to play softball and just live my life normally?

Explore topics in this discussion:

Exercise Atenolol Brushing Syncope Beta blockers Long QT syndrome Anxiety Epilepsy Spina bifida Stress Dizziness Asthma Dehydration Arrhythmia Chiari malformation Hospice care Allergies Diabetes Seizures Pain

82 replies

katiesoftball26

hey guys. just wanted some input/your help on what is going on. within the past 2 weeks i have passed out/possibly had a seizure twice. the first time i was downstairs and felt sorta dizzy and then jsut went i guess. my mom caught me and said that my eyes were open but i was unresponsive for about 20 seconds. she said that i was also shaking, which made her a little..alot.. nervous. we ended up going to the er and had a whack job as a dr. and sent me home after 1 ekg and 2 taps on my knees. he said he really didn't know what happend. and that was all. then end. i ended up doing a holter monitor later that week because my ep just wanted to be safe. we haven;t gotten the results back on that because they jsut mailed the results last week, a week and a half later, thank you reliable hospitals. =] but anyway, today i was getting out of the shower, at about the same time as the last one, and passed out again, i had sort of the same feeling and tried calling for help, but was unable to, the next think i knew i was on the ground breathing really deep and i really didn;t know what had happend. we didn;t go to the er this time because it is finals week and it is absolutely crucial to be there. my mom called my ep and he still hasn't gotten back to us. so if anyone knows anything about anything. please fill me in on what the heck is going on with me!!

katcarn

Hi ~ thank you for sharing the info. I am very sorry that your daughter's results were inconclusive, especially since she's with symptoms, unlike my son. My son, like your daughter, is restricted from all sports, except golf. He is also on a beta-blocker. At times I feel very guilty because I passed this onto him, but at the same time I feel that his doctor is doing everything possible to keep him alive and I feel very grateful for that.

I am not sure where to go with the genetic testing. I feel that no one should have to pay out-of-pocket. He does have an appointment with the electrophysiologist over at CHOP in Oct so we'll see what she says.

Good Luck with your daughter; hopefully, as time goes on you will get more answers.

ncz727

Hello. Our test was also $5400.00. Our doctor wrote a letter to BC, and we notified the Insurance Commissioner for our state (who is VERY helpful in persuading BC to do their job). We were originally told by BC that we would have to switch to a more expensive plan in order to guarantee coverage of the testing. Once we switched plans, and were unable to switch back for a one year period, we received the notification in the mail that BC had authorized full payment of the testing UNDER OUR OLD, LESS EXPENSIVE PLAN!! They are really unbelievable! You need to keep a very good paper trail when doing anything with BC, and always keep your state's insurance commissioner in the loop. Do everything in writing! I cannot stress this enough. They will tell you one thing over the phone, and then do the complete opposite.
Unfortunately, the results of the testing were inconclusive. As you may know, patients with true LQTS may have negative testing in as many as 30% of cases. My daughter has had three syncopal events, and has had a qt between 450-520 on every EKG, so she is on beta blockers and is limited as to allowable activities. We play the waiting game until Familion can identify more genes.

katcarn

Hi ~ I just read your comment. My 16 yr old son has LQTS. We also have BC/BS. We just got back our preauthorization from Familion. The cost of the test that my son's doctor ordered was $5400. Apparently we have to pay $300 deductible and then 30% which comes out to roughly 1,500. Familion also suggested that we ourselves call BC/BS for confirmation. My question to you is.... how did you get them to pay 100% (which really I feel that is what they should pay). Also what did you learn from the results and did you find it helpful that you got the genetic testing for your daughter. Thanks for your help....... Kathy.

meg12col

hey, I was just telling you what I heard lol but it could also not be serious; I'll have to bring it up with my doc in Feb and see what he says
if the lqts shows after the game or the next day or whatever, it would be important to see if that's the case, because even though you might not get anything until afterwards, it might be brought on by the game
there are event monitors that record events or whatever even if you don't feel symptoms, like the one I had last summer
you would want a 48 hr holter monitor
I wasn't talking about the subway one because I wasn't thinking of that one at the time; actually i've had several instances, but I'll explain them to you on fb

ncz727

Katie, yes, we received our results from Familion within 6 weeks, the results went directly to the doctor, and he called us with them. My daughter is now 8. She is not allowed to play most sports, and has a modified gym program for school. Fortunately, (I guess), she was diagnosed before she really started to like any one particular sport, so she never had to stop playing something she loved. We are encouraging her to play golf (approved by MD) and so far so good. She likes it because it's quiet. She also does alot of walking. Boring, I know, but it keeps her active. It must be very frustrating for you to have such a long wait, but listen to your doctor - it's better to be safe! ncz727.

katiesoftball26

ahh. no more heart problems. im good with the ones i have thanks. though, in a way it kind of makes me feel better that you are expierencing those same things too. and we were thinking a holter just to prove that during the game i am fine as oppose to having an event one because then ijust do it when i feel stuff and therefore would never do it. (and we tried that this summer and nothing showed up) is that what you were talking about (the symptoms) with the subway?

meg12col

it has been awhile

to be honest, I don't exactly know anything about the numbers thing because I was never told; I have heard through other sources that anything over 460 or so is bad; the beta blockers are supposed to work, so that's great that they are; that was a good idea to ask if you could just play in the field, I never thought of that, it's not that strenuous that way; it's very possible that softball games has impacted the lqts because with lqts, the symptoms or whatever can occur several minutes after the activity or even after that; like the other day, I went to a baseball game with my dad (it's a tradition) and at one point we ran for the subway and I didn't feel anything when running, but a couple seconds after we sat down, I got this bad pain in my chest and I know it was because of the running and it lasted about a half hour, which is what it used to do when I would get chest pain after running laps in gym; instead of a holter monitor, you might want to consider an event monitor, I forget the one I had last summer, but I had for two to three weeks, and that would be better to see what happens at several games; lol because I get the same way too every once in awhile, but I haven't told my doc yet either, I've asked around in another group and they say it might be another heart problem or something and it's important to get it checked out

katiesoftball26

hey meg. wow it feels like it has been a loong time. sorry about that. i really have not had 10 mins to sit around in atleast a week. i don;t think ive watched tv in 2 weeks. im like craaaazy busy. ok so i went and saw my doc in peoria 2 fridays ago and ran on the treadmill with the beta blockers and i guess my numbers were really good? he said like 490's were the highs? and i could only get my heart rate up to 150 something because of the beta blockers. so he said it was the right dosage which was the only thing he was really looking for. and we got blood drawn to be sent to texas for the genetic testing to be done. but he still hasn't budged on softball. though i did make him consider thinking about letting me just play the field and not hit/run bases. so hopefully he'll consider that. =] but other than that nothing has really changed. thought me and my mom were thinking about the ekg's ive gotten and all of them were the days after i have had softball games. ad the first time i had the treadmill test done the pvcs (which were going crazy while i was on the treadmill and he didn;t like that) were going super crazy on the cool down. so i wonder if that has something to do with the qt. if it only shows up during like the cool down after the exercise. and then my mom and me were thinking again. if i have practice softball games for next summer comeing up if i play in those and wear a holter moniter during it so it can record everything like during the game if that would prove that i could play? so he could clear me? i mean i am looking for absolutely anything and everything i can get in this situation. i have never been so desperate in my entire life meg. this is craaaazy. and alrighty heres the current question for you. i keep getting like these sesations i guess i could call them where i get just overly insanely hot and start seeing spots and my heart like starts to hurt really bad. and they will last for like a minute and i jsut get like really dizzy and stuff. and i forgot to mention it to him at the last thinger but im gonna at the next one and just see what he says. what do you think? let me know asap. =] thanks again meg. =]

katiesoftball26

ncz727 -
we were originally going to go through famillion but bcbs just was not budging on aaaannnyyyything. and we tried just about everything. we had my doctor write a whole bunch of letters to them and everything and they would just not budge. we ended up basically giving up on them because i start softball open gyms in december and so we really need the results of whether or not i have lgts as soon as possible so my doctor will let me play. i don't know if you have read like the 1000000 posts ive had on here or not but basically my doctor will not let me play softball at all and this would basically be the only way he would change his mind. so we are prayin and hopin like crazy. but anyway. we ended up getting blood taken last friday at my last appointment to be sent to texas a&m to be genetically tested there. it was going to be a lot cheaper to do it that way. it ends up that it was free because it was experimental from a college. though we aren;t hearing that the turnaround time is very good. some of my doctors other patients are going through them and its taken forever. so hopefully ours will be quicker. did you end up recieving your results from famillion?? if so, how quick was the turnaround time? how old is your daughter? because if she should want to talk to someone going through probably a lot of the same things.. let me know.
-katie

ncz727

Dear Katie, my daughter was diagnosed with LQT 1 1/2 years ago. I read in your post that Blue Cross/Blue Shield was not cooperating regarding the Familion test. We also have BC/BS. YOU NEED TO FIGHT THEM EVERY STEP OF THE WAY! They at first denied payment. We fought them and won. They agreed to pay 100% of the test fee (over $5,000.00!). Luckily we got the approval in writing, because after the test was done, and billed out, BC/BS only paid Familion 1/2 of the bill! We reported them to the State Insurance Commissioner, and within one week had the remaining portion of the test paid by BC/BS. My daughter is the only one in our family known to have LQT. It is very scary. I wish you well!

meg12col

sorry to hear that about your golf coach and everything; she probably wasn't expecting that when you told her; i do have hope that she will come around, just give her some time; maybe you could meet with her and just explain how you feel, like being treated the same and such, you never know what will happen; like I said before, I had a teacher in my freshman year of high school who treated me differently and said I worried her and all that, like she was nice but not a lot of people liked her, and she didn't try to talk to me about my feelings toward the situation and what not; meanwhile, all my other teachers treated me the same and didn't give me any problems, well except for one who I didn't get along with at all, but it had nothing to do with the lqts; I had some teachers who went out of the way to ask me about my feelings you know and made sure I knew what to do if I had any symptoms or whatever;

what you're feeling is exactly what I went through for about 4 yrs around 1999-2003; I was relatively fine after having my first seizure because I did hear that sometimes people have a seizure for no reason and that's the only one they'll ever have, but i was scared and stuff; it was after my second one that I started freaking out and whatever and really panicking is public places and what not; eighth grade and freshman yr in hs were the worst yrs for me, like my grades went down in 8th grade, but not a lot and I was always pushing myself to do better, most of my teachers in grade school treated me differently, even before I was officially diagnosed, like I got to retake tests and such, and I always hated that, but that's how it was; I wasn't even comfortable about talking about it until I was a soph in hs; after I was diagnosed in May 2001, I was a wreck because I didn't know what to expect and thing became clearer to me, like all my symptoms made sense and stuff, I also did a lot of research on lqts and some of the infor freaked me out, like sudden death and that it could happen in your sleep, so I was always afraid/scared/anxious to be around big crowds and public places and it did take awhile to get over that; even to this day, I can't stand big crowds especially with people I don't know, but it's not as bad as it used to be, like a cousin died about a week ago and the funeral was this past Tuesday but I didn't go because I have a big family on both of my parents' sides; I know more people in my dad's side than I do in my mom's side, which is why I didn't go; and both my mom and brother said it was very crowded and hot, two things that don't mix with me very well;

the best help I can give you is not to think about it; i know that's hard, but you really have to try to think about other things and say to yourself that you will be fine and nothing bad will happen; hang in there Katie, it will get better

in the beginning, I really felt like I couldn't talk to anybody because I felt they wouldn't understand and they couldn't relate, even family members. when I got to high school, I didn't tell anyone until soph yr; I then found out I had friends who really were there for me and tried their best to understand everything; I was lucky to get that because I didn't expect that to happen at all; like I said, hang in there.

katiesoftball26

ok. so i talked to my golf coach and she basically like flipped out about how sorry she was for making me walk the 18 holes blah blah blah. and so of course it like freeked me out. and idk she was just like i promise ill treat you the same blah blah blah but i know its gonna be different just by the way she reacted. but its weird cause shes a counselor. so youd think that shed be able to deal with this better? maybe im judging her too much. i guess well just have to wait and see. i have my first match on tuesday so that should be fun. but ok meg. i have changed so much since i found out about this. like i am losing things left and right and i never use to lose ANYTHING. and one of the things i lost was my class ring.. so thats not good and obviously my parents are furious. but its seriously like my mind is completely somewhereelse. all the time. like i am a straight A student. i have a 5.0 gpa. i take all honors classes. and all of a sudden im getting c's on tests??? but it is like alllllll i ever think about tongiht. like when my friends are thinkin about what were gonna do tonight i am like thinking all of these like what ifs..? and it just like gets to me. but absolutely no one understands. i just don;t know how to put my head back on my shoulders where it belongs so i can stop thinking about all of this stupid stuff that i shouldn;t have to worry about. and then the appt. on friday with my least favorite man in the world (i like his nurse tho. shes nice =]) oh man don;t even get me started.. meg you are completely amazing. and good luck w/ insurance.

meg12col

it's great that you're finally getting the genetic testing done; i don't anything about genetic testing because I've never had it done, part of the reason being that I don't have health insurance right now

i'm also glad to hear that your mom is going to talk to your teachers/coaches; the sooner they know the better; i wish your mom luck with that

once again, I don't mind helping you out, Katie

meg12col

that's great that you're finally getting the genetic testing done; i haven't had genetic testing done yet, but part of the problem is that I don't have health insurance right now; all i know about gentic testing is that it costs a lot, so I don't know how that works

it's good that you're mom is going to talk to the coaches/teachers; the sooner they know the better; i wish your mom well on that; i don't mind helping you out, Katie

katiesoftball26

haha thanks. the last time i was there i was on the treadmill and it was like a week after i had my treadmill test so that was kind of scary. i will probably have the same one this time just for variable reasons so its not different i guess. but i will let you know how that ends up going. i don;t know if i told you this or not but we did end up getting accepted for genetic testing. i guess my doctor is gonna get it done through a college so its less expensive..? im not sure on all of the details but that is what i know so far. and my mom is planning on setting up appointments w/ all of my coaches and pe teachers to talk with them about all of this. so hopefully that stuff goes over well. thanks again for all of your help meg.

meg12col

okay, well I'll do the best I can

basically, the first part, you should really pay close attention to what you can and can't do; it's very important that you don't do any of the activities that are restricted because that could cause you to have symptoms

my cardiologist told me I wasn't allowed to have gym at all in high school; what you should do is copy the letter and give the copy to your gym teacher and school nurse, that way it will always be on record

I was allowed to play recreation sports, not competitive sports, and less strenuous sports were always okay; i don't know if you do any drills for softball or not, like running laps or whatever, but once again, you have to use your best judgement and follow what the doctor said

since softball is closely related to baseball, I would think that baseball doesn't count as a varsity sport; it is less strenuous and since he says that baseball is acceptable, softball would be too.

That's what I get out of it; but def tell your gym teacher, school nurse, and any coach/manager, more for softball what you can't do and what you can do

it will get better, so hang in there; a stress test will see how well the medicine is working, to see how bad the lqts gets during strenuous activity, etc, so that will give you more answers as well; i've had two stress tests, not when I've been meds tho, and i always had the bike; good luck with the stress test and the doctor's appointment

katiesoftball26

hey meg. sorry its been a while.hope everything is goin well with you. i just kind of need some help deciphering this letter i got from my regular cardiologist. but this is basically what it said.


"May participate in the physical education program except for restriction from all varsity sports and from excessively stressful activities such as rope climbing, weight lifting, sustained running (i.e laps) and fitness testing. Must be allowed to rest when tired."

" She may participate on varsity level golf team"

ok the way it was set up was like a check list of things i could and couldn;t do all of them worded kind of the like first one above. the second one it what he wrote in himself. though above all of this it kind of defined varsity sports..


"where there is strenuous training and prolonged physical exertion (ie football, hockey, wrestling, lacrosse, soccer, and basketball less strenuous activities such as BASEBALL and golf are acceptable."

ok now explain that. does that mean baseball doesn;t count as what they consider a "varsity sport" i mean obviously i am going to be soon asking him all of these questions but i just kind of figured that you all know this stuff a ton better and may be able to understand it better. i go in to see him on sept 7th and am going to do a stress test at 7:30 in the morning (since i am going to be able to run real well then .. haha yeah right). oh man,this and starting school together is really not helpin the stress level much either. haha. thanks a bunch guys!

meg12col

lqts does not stay exactly the same, i've always been told that; it can get worse or better, but it's something that you will have for life; being on a beta blocker or whatever helps some people, like it does me and probably you as well; it depends what type of lqts you have, there are three major types and only one doesn't respond to beta blockers well; that's the more serious form and less common, so there are different types of treatment for each type

there are two groups of lqts: acquired and inherited;

Acquired: caused from prescription medication and known agents, like anti-arrhythmic drugs, etc, also can be caused by strokes or other neurological disorders

Inherited: runs in family. etc; shows prolongation of qt interval on an ekg

You most likely have the inherited form of lqts, just like I do

some people are born with it and it shows right from the start and others develop it later on in life; i didn't experience any symptoms for 11 yrs and it kind of confused me at first too; a lot of people have lqts, but don't know it because they don't experience symptoms

some statistics that I'm going to share with you about this condition:

At least one-third, if not more, never develop symptoms

In others, some have a couple of syncopal spells, etc as children and none afterwards, whereas some people have many episodes/events over a number of yrs

Symptoms may begin as early as the first days or weeks of life, or as late as middle age

Most often, symptoms first occur during preteen and teenage yrs

Symptoms begin on average at approximately at the age of 8 in males.

Symptoms begin on average at approximately at the age on the average age of 14 in females.

Because many people never have symptoms, the absence of a history of syncope or sudden death in a family doesn't guarantee the absence of lqts in the family.

A clearly long qt interval is present in 60-70% of affected persons.

However the qt is normal to only borderline prolonged in 30-40% of affected persons.

About 12% of lqts patients have a normal qt interval on a baseline, resting ekg; however a normal qt interval does not necessarily exclude lqts (your paretnts and any siblings should be tested by ekgs also and sometimes you have to ask the doctor to specifically evaluate the qt interval; sometimes it is overlooked, so it is important to mention that.

I got these facts from the sads website (some I learned from experience, tho)

my motto is things happen for a reason (I firmly believe that), so try to focus on that as to why.

I hope this information helps you out and provides you with information on several questions that you have. I don't mind helping you out and hopefully making you understand it better.

katiesoftball26

well its nice to hear from someone that im not completely crazy. =] but ok next question. again, i know your shocked. when your saying that lqts is a different kind of heart condition, can it get worse or better? or no? does it stay exactly the same? and i have heard(read) that you can develop it? but its also from the internet and didn;t look like a very reliable source (don;t remember where) but everywhere else ive looked said that basically you are born with it. like could i have just developed it? or is that crazy? because its really just stumping me to death that its just like all of a sudden im getting symptoms and such. because before i was diagnosed, like i have said probably 100 times, i never had any symptoms. i just really really really don;t get it. why now?

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