13 year old boy in hospital with chest pain possible SVT

M

Murgie

New member
Has anyone experienced heart issues that were misdiagnosed as pneumonia?
Sam is in the hospital with fairly good PFTS 85%, but the original reason we went to the hospital was chest pain. His heartbeat was 200 bpm, 60/40 blood pressure and diabeties blood sugars over the top.
Sam rarely complains and is generally in good health, lately the fatigue level has been high, and when his chest hurt he thought we should go to emergency. Neither of us are alarmists, but when Sam says he needs to go to the doctor we go, and you CFer's are so incredibly in tune with your bodies its amazing!
CF doctors says its not pneumonia, but are treating this as a tune up, cardiologist came in and said its pneumonia, and endo has no clue but has taken blood to test thyroid.
My goodness this is alot of unknowns, so I thought I would throw this out there and see if anyone else has experienced these health concerns., one Resident here at the hospital suggested it was SVT- Supra ventricular tachycardia, Endo thought possible heart infection, but no one really knows and I am a bit concerned, ok I am quite worried!
 
M

Murgie

New member
Has anyone experienced heart issues that were misdiagnosed as pneumonia?
Sam is in the hospital with fairly good PFTS 85%, but the original reason we went to the hospital was chest pain. His heartbeat was 200 bpm, 60/40 blood pressure and diabeties blood sugars over the top.
Sam rarely complains and is generally in good health, lately the fatigue level has been high, and when his chest hurt he thought we should go to emergency. Neither of us are alarmists, but when Sam says he needs to go to the doctor we go, and you CFer's are so incredibly in tune with your bodies its amazing!
CF doctors says its not pneumonia, but are treating this as a tune up, cardiologist came in and said its pneumonia, and endo has no clue but has taken blood to test thyroid.
My goodness this is alot of unknowns, so I thought I would throw this out there and see if anyone else has experienced these health concerns., one Resident here at the hospital suggested it was SVT- Supra ventricular tachycardia, Endo thought possible heart infection, but no one really knows and I am a bit concerned, ok I am quite worried!
 
M

Murgie

New member
Has anyone experienced heart issues that were misdiagnosed as pneumonia?
<br />Sam is in the hospital with fairly good PFTS 85%, but the original reason we went to the hospital was chest pain. His heartbeat was 200 bpm, 60/40 blood pressure and diabeties blood sugars over the top.
<br />Sam rarely complains and is generally in good health, lately the fatigue level has been high, and when his chest hurt he thought we should go to emergency. Neither of us are alarmists, but when Sam says he needs to go to the doctor we go, and you CFer's are so incredibly in tune with your bodies its amazing!
<br />CF doctors says its not pneumonia, but are treating this as a tune up, cardiologist came in and said its pneumonia, and endo has no clue but has taken blood to test thyroid.
<br />My goodness this is alot of unknowns, so I thought I would throw this out there and see if anyone else has experienced these health concerns., one Resident here at the hospital suggested it was SVT- Supra ventricular tachycardia, Endo thought possible heart infection, but no one really knows and I am a bit concerned, ok I am quite worried!
<br />
 
M

mag6125

New member
I'm not sure about the svt but as far as pneumonia goes docs other than cf docs will often say Pneumonia if they are judging by a chest x-ray because they don't know how to read a cf x-ray. I have been told twice that I had pneumonia by er docs when really it was just an exacerbation. I have a high heart rate normally around 110-130 and it's worse when my pulse ox is low. How has his pulse ox been? If it's low and he's not getting enough oxygen that could explain high heart rate and chest pain. These are just my personal experiences, I hope they figure it out quickly.
 
M

mag6125

New member
I'm not sure about the svt but as far as pneumonia goes docs other than cf docs will often say Pneumonia if they are judging by a chest x-ray because they don't know how to read a cf x-ray. I have been told twice that I had pneumonia by er docs when really it was just an exacerbation. I have a high heart rate normally around 110-130 and it's worse when my pulse ox is low. How has his pulse ox been? If it's low and he's not getting enough oxygen that could explain high heart rate and chest pain. These are just my personal experiences, I hope they figure it out quickly.
 
M

mag6125

New member
I'm not sure about the svt but as far as pneumonia goes docs other than cf docs will often say Pneumonia if they are judging by a chest x-ray because they don't know how to read a cf x-ray. I have been told twice that I had pneumonia by er docs when really it was just an exacerbation. I have a high heart rate normally around 110-130 and it's worse when my pulse ox is low. How has his pulse ox been? If it's low and he's not getting enough oxygen that could explain high heart rate and chest pain. These are just my personal experiences, I hope they figure it out quickly.
 
M

Murgie

New member
thanks for responding

Thanks for the info, his ox levels are ok, and you are right about the emergency x rays and pneumonia. We originally went to our local Er, I guess they have not seen the lungs of a cfer, I will remember this one in the future. Love your Wayne Gretzky quote!
 
M

Murgie

New member
thanks for responding

Thanks for the info, his ox levels are ok, and you are right about the emergency x rays and pneumonia. We originally went to our local Er, I guess they have not seen the lungs of a cfer, I will remember this one in the future. Love your Wayne Gretzky quote!
 
M

Murgie

New member
thanks for responding

Thanks for the info, his ox levels are ok, and you are right about the emergency x rays and pneumonia. We originally went to our local Er, I guess they have not seen the lungs of a cfer, I will remember this one in the future. Love your Wayne Gretzky quote!
 
M

Murgie

New member
New Info AFB = acid fast bacillis

Sams last hospital visit was so confusing, with heart trouble and no pnuemonia, we were sent home after 6 days, only to hear that sam has the acid fast baccilum mycobacteria. They had him do a skin test for tuberculosis, but thankfully that came back negative. No wonder these poor teems struggle with a positive attitude, its always something new growing, and some new health challenge.
We will not know the identity of this new bacteria for 6-8 weeks, but Sam's doctor advised me this is causing lung damage. In addition to MRSA, Psedomonas, and regular staff being cultured, what is next? I am trying to remain positive and upbeat, but man my heart breaks for this young man. If anyone has a child or have yourself cultured AFB PLEASE tell me what it was and how it was treated. THANKS
 
M

Murgie

New member
New Info AFB = acid fast bacillis

Sams last hospital visit was so confusing, with heart trouble and no pnuemonia, we were sent home after 6 days, only to hear that sam has the acid fast baccilum mycobacteria. They had him do a skin test for tuberculosis, but thankfully that came back negative. No wonder these poor teems struggle with a positive attitude, its always something new growing, and some new health challenge.
We will not know the identity of this new bacteria for 6-8 weeks, but Sam's doctor advised me this is causing lung damage. In addition to MRSA, Psedomonas, and regular staff being cultured, what is next? I am trying to remain positive and upbeat, but man my heart breaks for this young man. If anyone has a child or have yourself cultured AFB PLEASE tell me what it was and how it was treated. THANKS
 
M

Murgie

New member
New Info AFB = acid fast bacillis

Sams last hospital visit was so confusing, with heart trouble and no pnuemonia, we were sent home after 6 days, only to hear that sam has the acid fast baccilum mycobacteria. They had him do a skin test for tuberculosis, but thankfully that came back negative. No wonder these poor teems struggle with a positive attitude, its always something new growing, and some new health challenge.
<br />We will not know the identity of this new bacteria for 6-8 weeks, but Sam's doctor advised me this is causing lung damage. In addition to MRSA, Psedomonas, and regular staff being cultured, what is next? I am trying to remain positive and upbeat, but man my heart breaks for this young man. If anyone has a child or have yourself cultured AFB PLEASE tell me what it was and how it was treated. THANKS
 
M

missT

Member
New Info AFB = acid fast bacillis

Hi Murgie, I have had SVT and had an ablation to remedy it. I can tell you all you need to know about SVT. It came out of nowhere when I was about 36 years old. I am convinced that the SVT was caused by years of Albuterol use but I cant prove that. My heartrate would go to 220+. I was taken to the emergency room a few times for a shot to bring down my heartrate. I can give you any info you need. It is a really freaky thing. There is also another CFer that has SVT so I dont think it is a conincidence.
 
M

missT

Member
New Info AFB = acid fast bacillis

Hi Murgie, I have had SVT and had an ablation to remedy it. I can tell you all you need to know about SVT. It came out of nowhere when I was about 36 years old. I am convinced that the SVT was caused by years of Albuterol use but I cant prove that. My heartrate would go to 220+. I was taken to the emergency room a few times for a shot to bring down my heartrate. I can give you any info you need. It is a really freaky thing. There is also another CFer that has SVT so I dont think it is a conincidence.
 
M

missT

Member
New Info AFB = acid fast bacillis

Hi Murgie, I have had SVT and had an ablation to remedy it. I can tell you all you need to know about SVT. It came out of nowhere when I was about 36 years old. I am convinced that the SVT was caused by years of Albuterol use but I cant prove that. My heartrate would go to 220+. I was taken to the emergency room a few times for a shot to bring down my heartrate. I can give you any info you need. It is a really freaky thing. There is also another CFer that has SVT so I dont think it is a conincidence.
 
M

Murgie

New member
New Info AFB = acid fast bacillis

Hello Miss T,
Can you tell me what the procedure is that you had done, I think you called it an ablation. Sam has not been on albuterol for 9 years, he uses xopenex, and saline and pulmozyme. He is wearing a heart monitor and it needs to be called in 2 times a day, that means it is getting 6 or more recordings per day. Sam is only 13, isnt this odd?
I agree with you that there must be a co-relation to CF, but no one in the medical field wants to address this. tell me what you have learned. Thanks for your input
 
M

Murgie

New member
New Info AFB = acid fast bacillis

Hello Miss T,
Can you tell me what the procedure is that you had done, I think you called it an ablation. Sam has not been on albuterol for 9 years, he uses xopenex, and saline and pulmozyme. He is wearing a heart monitor and it needs to be called in 2 times a day, that means it is getting 6 or more recordings per day. Sam is only 13, isnt this odd?
I agree with you that there must be a co-relation to CF, but no one in the medical field wants to address this. tell me what you have learned. Thanks for your input
 
M

Murgie

New member
New Info AFB = acid fast bacillis

Hello Miss T,
<br /> Can you tell me what the procedure is that you had done, I think you called it an ablation. Sam has not been on albuterol for 9 years, he uses xopenex, and saline and pulmozyme. He is wearing a heart monitor and it needs to be called in 2 times a day, that means it is getting 6 or more recordings per day. Sam is only 13, isnt this odd?
<br />I agree with you that there must be a co-relation to CF, but no one in the medical field wants to address this. tell me what you have learned. Thanks for your input
 
H

Havoc

New member
I was going to reply on this earlier, but I was extremely busy. Regarding the possibility of SVT, it's not all that uncommon for young people to develop re-entrant pathways like WPW. I have never seen any evidence that it's CF related. As Miss T mentioned, the treatment (if it is WPW or something like it) is usually an ablation where they destroy part of the heart tissue ( a pacemaker node called the bundle of Kent that allows the action potential to divert from the AV node back up through the atria, rather than down through the ventricles).

Albuterol is a beta agonist (actually beta 2 specific), unfortunately it does have some alpha agonist properties and can increase heart rate, but due to it's relatively short half life there is no chance of something like that building up in your body to create a lasting effect. Xopenex is supposed to be even more beta2 specific, however I still notice some tachycardia with it.

It's good that he's doing the Holter monitor, hopefully they can catch some of his SVT's and make a diagnosis.

I threw out a lot of medical stuff for time's sake. Let me know if you need anything explained.
 
H

Havoc

New member
I was going to reply on this earlier, but I was extremely busy. Regarding the possibility of SVT, it's not all that uncommon for young people to develop re-entrant pathways like WPW. I have never seen any evidence that it's CF related. As Miss T mentioned, the treatment (if it is WPW or something like it) is usually an ablation where they destroy part of the heart tissue ( a pacemaker node called the bundle of Kent that allows the action potential to divert from the AV node back up through the atria, rather than down through the ventricles).

Albuterol is a beta agonist (actually beta 2 specific), unfortunately it does have some alpha agonist properties and can increase heart rate, but due to it's relatively short half life there is no chance of something like that building up in your body to create a lasting effect. Xopenex is supposed to be even more beta2 specific, however I still notice some tachycardia with it.

It's good that he's doing the Holter monitor, hopefully they can catch some of his SVT's and make a diagnosis.

I threw out a lot of medical stuff for time's sake. Let me know if you need anything explained.
 
You must log in or register to reply here.
Top