Yes, We have done all kinds of heart testing, including a stress test, echo, EKG, etc.
I now have a pulse ox machine and have noticed that when his heart gets up past 110, if he puts his O2 on it goes back down to a more reasonable rate, even if his pulse ox percentage is good and that number ususally doesn't change when he puts the O2 on for a fast heart rate. He wears O2 while he sleeps most every night, is suppose to every night but sometimes he "forgets" to put it on.
It is my understanding that this is common in CF and is usually fixed by using O2. Not wearing the O2 can cause long term heart damage that would be irrevesible once it occurs. Whenever you have lung issues such as CF, it often puts added stress on the heart leaving you open for possible heart damage. The good news is that for CF almost all of it can be prevented by using O2 whenever needed. It also affects their energy so when Nathan is acting tired I often check his pulse ox and pulse to see if he needs his O2, it is hard because sometimes it is just called being a teenager, but if his pulse ox is below 95% or his heart rate is above 110, he puts his O2 on and usually that fixes it for him.
What was her pulse ox? Was it lower than normal for her? We just went through all this heart stuff a little over a year ago and I got the lecture about how important it is that CFers really should keep their pulse ox at 95% or above when heart issues start becoming a concern at all. I will tell you that it is likely that you will have to fight the nurses to keep it above 95% because they are generally use to 90% but I always get an order for 95% or better and then remain very firm on the minimum of 95%, drives them crazy but I don't care. If his doc gave me the lecture about O2 and heart damage to scare me, he succeeded and I am not willing to risk it when I know that O2 can do a lot to prevent most damage and certainly delay it for quite awhile before making it a real concern. I think this is one of those things they don't tell us until they have to because they don't want to cause more stress or do anything that would prevent the kids from doing or being "normal" but I think we should know so that we can decide when and if they NEED to use th O2. Prevention is the key here too just as so many other things with CF.
I would ask them if you could try the O2 and see if it makes a difference in her heart rate at all. It does work for Nathan. Example: Pulse ox 96%; heart rate 124 put 1 liter of 02 on and Pusle ox may remain at 96% or go up to 98% but the heart rate will drop to around 85. Much better. Fast heart rates cause extra stress on the heart which eventually leads to damage to the heart. Before I figured all this out, he would go to over 150 bpm and I had no idea. Now I know to watch his energy level and to look at the heart rate as well as the pulse ox numbers. I can tell you that he use to be a solid 99% baseline pulse ox and now he hardly makes it up there, sometimes he will get a 98% but it only last a few seconds, depending on if he is sick or not he runs around 96%; if he is sick he goes down to 90% and needs his O2 all the time during the illnes. He may go lower than 90% but because I have a pulse ox, I don't let him go lower than that usually, actually, if he is at 92% the 0's go on. If he is not sick, energy is ok, then as long as he is above 94% I don't make him wear it unless he is just sitting around the house, playing video games or watching TV.
Sorry, probably more than you wanted to know. Let me know if you have a specific question that I may or may not be able to answer, I will try. I know that each doc seems to have their own little theory about the 02 so it may or may not be a battle to get them to try it. I always approach them from a "it will make me feel better to try it and see for myself if it helps or not" when someone tells me that each center or doc vaires on their own theories about stuff like this.
Let me know how it goes. If they want to do all the heart tests, let them, it will give you a baseline and a comparison point for later down the road. It is not uncommon for them, CFers, to do heart testing every year or two once they get to be teens because pulmonary issues do include the heart as any lung issue puts added strain on the heart.
I now have a pulse ox machine and have noticed that when his heart gets up past 110, if he puts his O2 on it goes back down to a more reasonable rate, even if his pulse ox percentage is good and that number ususally doesn't change when he puts the O2 on for a fast heart rate. He wears O2 while he sleeps most every night, is suppose to every night but sometimes he "forgets" to put it on.
It is my understanding that this is common in CF and is usually fixed by using O2. Not wearing the O2 can cause long term heart damage that would be irrevesible once it occurs. Whenever you have lung issues such as CF, it often puts added stress on the heart leaving you open for possible heart damage. The good news is that for CF almost all of it can be prevented by using O2 whenever needed. It also affects their energy so when Nathan is acting tired I often check his pulse ox and pulse to see if he needs his O2, it is hard because sometimes it is just called being a teenager, but if his pulse ox is below 95% or his heart rate is above 110, he puts his O2 on and usually that fixes it for him.
What was her pulse ox? Was it lower than normal for her? We just went through all this heart stuff a little over a year ago and I got the lecture about how important it is that CFers really should keep their pulse ox at 95% or above when heart issues start becoming a concern at all. I will tell you that it is likely that you will have to fight the nurses to keep it above 95% because they are generally use to 90% but I always get an order for 95% or better and then remain very firm on the minimum of 95%, drives them crazy but I don't care. If his doc gave me the lecture about O2 and heart damage to scare me, he succeeded and I am not willing to risk it when I know that O2 can do a lot to prevent most damage and certainly delay it for quite awhile before making it a real concern. I think this is one of those things they don't tell us until they have to because they don't want to cause more stress or do anything that would prevent the kids from doing or being "normal" but I think we should know so that we can decide when and if they NEED to use th O2. Prevention is the key here too just as so many other things with CF.
I would ask them if you could try the O2 and see if it makes a difference in her heart rate at all. It does work for Nathan. Example: Pulse ox 96%; heart rate 124 put 1 liter of 02 on and Pusle ox may remain at 96% or go up to 98% but the heart rate will drop to around 85. Much better. Fast heart rates cause extra stress on the heart which eventually leads to damage to the heart. Before I figured all this out, he would go to over 150 bpm and I had no idea. Now I know to watch his energy level and to look at the heart rate as well as the pulse ox numbers. I can tell you that he use to be a solid 99% baseline pulse ox and now he hardly makes it up there, sometimes he will get a 98% but it only last a few seconds, depending on if he is sick or not he runs around 96%; if he is sick he goes down to 90% and needs his O2 all the time during the illnes. He may go lower than 90% but because I have a pulse ox, I don't let him go lower than that usually, actually, if he is at 92% the 0's go on. If he is not sick, energy is ok, then as long as he is above 94% I don't make him wear it unless he is just sitting around the house, playing video games or watching TV.
Sorry, probably more than you wanted to know. Let me know if you have a specific question that I may or may not be able to answer, I will try. I know that each doc seems to have their own little theory about the 02 so it may or may not be a battle to get them to try it. I always approach them from a "it will make me feel better to try it and see for myself if it helps or not" when someone tells me that each center or doc vaires on their own theories about stuff like this.
Let me know how it goes. If they want to do all the heart tests, let them, it will give you a baseline and a comparison point for later down the road. It is not uncommon for them, CFers, to do heart testing every year or two once they get to be teens because pulmonary issues do include the heart as any lung issue puts added strain on the heart.