Aa
Need for a pacemaker?
My 29 year old son in remission with an underlying autoimmune disease (PAN - polyarteritis nodosa) developed a sinus tachycardia which went as high as 140-180 upon slightest effort with incapacitating symptoms. They did an outpatient Holter monitor which indicated frequent episodes of Mobitz II Conduction Block & the tachycardia.
He was admitted to a major teaching med center (UCLA medical center), June 28, with worsening symptoms. 8 days in the CCU and many tests indicated symptomatic bradycardia down to 31-50 BPM for hours whenever he entered a deep sleep in addition to the aforementioned conditions and not only symptomatic Mobitz II but a complete 3rd degree heart block on at least one occasion. The many teams of docs in electrophysiology cardiology and general cardiology, seen during our stay in the med center said they would put in a pacemaker if he were 70 but refused to put it in a 29 year old. They sent him home on beta blockers (contraindicated in Mobitz II, bradycardia) — clearly worse than when he was admitted.
On June 21 a 2nd & 3rd opinions from private teams of general cardiologist and electrophysiology cardiologist led them to put in pacemaker. It has clearly saved his life. The pacemaker is being utilized 30% of the time (8 hours roughly out of every 24 hours) to correct his symptomatic Mobitz II conduction block and the symptomatic bradycardia, PLUS the tachycardia is greatly improved without beta blockers.
With the dual lead pacemaker he is a new person and can now tolerate normal activity without shortness of breath, chest pain, chest pressure, confusion, syncope, etc. In other words he was previously a "cardiac cripple" and is now a normal 29 year old. Why do you think that UCLA as a major teaching hospital med center took the chance of sending him home without a pacemaker, with his symptoms worse than when he was admitted — especially when it is so clear now that his life could at the very least be greatly improved by a pacemaker — not to mention that his life was in danger without the pacemaker?
Thank You!
KT
He was admitted to a major teaching med center (UCLA medical center), June 28, with worsening symptoms. 8 days in the CCU and many tests indicated symptomatic bradycardia down to 31-50 BPM for hours whenever he entered a deep sleep in addition to the aforementioned conditions and not only symptomatic Mobitz II but a complete 3rd degree heart block on at least one occasion. The many teams of docs in electrophysiology cardiology and general cardiology, seen during our stay in the med center said they would put in a pacemaker if he were 70 but refused to put it in a 29 year old. They sent him home on beta blockers (contraindicated in Mobitz II, bradycardia) — clearly worse than when he was admitted.
On June 21 a 2nd & 3rd opinions from private teams of general cardiologist and electrophysiology cardiologist led them to put in pacemaker. It has clearly saved his life. The pacemaker is being utilized 30% of the time (8 hours roughly out of every 24 hours) to correct his symptomatic Mobitz II conduction block and the symptomatic bradycardia, PLUS the tachycardia is greatly improved without beta blockers.
With the dual lead pacemaker he is a new person and can now tolerate normal activity without shortness of breath, chest pain, chest pressure, confusion, syncope, etc. In other words he was previously a "cardiac cripple" and is now a normal 29 year old. Why do you think that UCLA as a major teaching hospital med center took the chance of sending him home without a pacemaker, with his symptoms worse than when he was admitted — especially when it is so clear now that his life could at the very least be greatly improved by a pacemaker — not to mention that his life was in danger without the pacemaker?
Thank You!
KT
I have to say thank you for this posting. It has to be one of the best posts I've read in a long time! I'm so glad your son is doing so well! As you write, you fill in so many more details that a picture forms in everyone's mind of what you have been through. In the end you, as a mother, gain a strength that few mothers will ever know.
You asked about my daughter so I will try to answer a bit about her. She was 3 when she started having a lot of pain from Juvenile Rheumatoid Arthritis, but it was not until she was 5 that they actually diagnosed it in her. I wouldn't wish this disease on anyone. There is so much pain involved with it. They told us that most kids outgrow it by their teen years. We now know that it simply goes into hibernation to reappear during adulthood, at least for a lot of people. It took us a year of physical therepy and home to straigthen her knees out due to the contractures of the knee and hip joints. Good news now is that even though there are times where her joints are painful, she's on immunosupressent drugs so the immune system doesn't kick in to destroy her joints! When she was 10, she had a stroke and her doctor didn't belive me until an EEG was done and the neurologist confirmed the stroke. They automatically assumed it was due to her heart disease even though HCM doesn't cause strokes. Turned out that she had a platelet coagulopathy. When her first pacemaker was put in, she bled so badly that she hemorrhaged so badly that she went into shock and nearly died. Boy, when a cardiac nurse comes out and tells you there's a problem: that they can't stop the bleeding, it scared me half to death! They were telling us that she may not make it through the pacemaker being inserted. Now they know to give her an IV of DDAVP. Doctors do have a real problem dealing with sick children who are terminally ill; I do know that. The doctors always took my daughter's heart related symptoms seriously as well as her JRA, but everything else it was a hard go. I tried to tell them that i thought she was having kidney problems and even though her Creatinine and BUN were elevated, they didn't want to believe me.....in the end, I was right. A lack of perfusion to the kidneys damaged them and now the drugs she takes for the transplant continues to damage them more. One of the biggest gripes I had when she was a child was that she lacked muscle strength; she couldn't even snap up her jeans as an 8 year old. The pediatrician told me: "You don't want to give her another diagnoses!" I just wanted to know what was wrong! He agreed to send her to a physical therepist to prove to me she wasn't having problems with weakness and if the therepist said there was a problem, he's believe her! Not only did she find weaknesses in her muscles, she added to that the contractures of her legs and scoliosis! The pediatrician never gave me a hard time after that! When they think you are dealing with a lot, they don't want to hand you anymore. That's a problem because you can't take care of issues at hand. At this point in her life, the muscle weaknesses have gotten much worse and next month she will be going back to see the neurologist. The transplant anniversary was this month, the 5th and it's been 10 years since her transplant. She has had 3 seperate bouts of Congestive heart Failure with this heart, one because to the negligence of the hospital staff!!! Her BNP, during her first CHF event was over 7700 (normal 0-100) I didn't think she was going to make it, but she did. We were on a trip when this happened and so she ended up at Duke University. That was really hard to deal with. But, you know, she keeps going. Last fall she was married and even though she has a lot to deal with, she handles it pretty well. How much life she has left, we don't know; transplants are not a cure and they tell you that upfront, it is a band-aid which can extend life. I wish you well!
You asked about my daughter so I will try to answer a bit about her. She was 3 when she started having a lot of pain from Juvenile Rheumatoid Arthritis, but it was not until she was 5 that they actually diagnosed it in her. I wouldn't wish this disease on anyone. There is so much pain involved with it. They told us that most kids outgrow it by their teen years. We now know that it simply goes into hibernation to reappear during adulthood, at least for a lot of people. It took us a year of physical therepy and home to straigthen her knees out due to the contractures of the knee and hip joints. Good news now is that even though there are times where her joints are painful, she's on immunosupressent drugs so the immune system doesn't kick in to destroy her joints! When she was 10, she had a stroke and her doctor didn't belive me until an EEG was done and the neurologist confirmed the stroke. They automatically assumed it was due to her heart disease even though HCM doesn't cause strokes. Turned out that she had a platelet coagulopathy. When her first pacemaker was put in, she bled so badly that she hemorrhaged so badly that she went into shock and nearly died. Boy, when a cardiac nurse comes out and tells you there's a problem: that they can't stop the bleeding, it scared me half to death! They were telling us that she may not make it through the pacemaker being inserted. Now they know to give her an IV of DDAVP. Doctors do have a real problem dealing with sick children who are terminally ill; I do know that. The doctors always took my daughter's heart related symptoms seriously as well as her JRA, but everything else it was a hard go. I tried to tell them that i thought she was having kidney problems and even though her Creatinine and BUN were elevated, they didn't want to believe me.....in the end, I was right. A lack of perfusion to the kidneys damaged them and now the drugs she takes for the transplant continues to damage them more. One of the biggest gripes I had when she was a child was that she lacked muscle strength; she couldn't even snap up her jeans as an 8 year old. The pediatrician told me: "You don't want to give her another diagnoses!" I just wanted to know what was wrong! He agreed to send her to a physical therepist to prove to me she wasn't having problems with weakness and if the therepist said there was a problem, he's believe her! Not only did she find weaknesses in her muscles, she added to that the contractures of her legs and scoliosis! The pediatrician never gave me a hard time after that! When they think you are dealing with a lot, they don't want to hand you anymore. That's a problem because you can't take care of issues at hand. At this point in her life, the muscle weaknesses have gotten much worse and next month she will be going back to see the neurologist. The transplant anniversary was this month, the 5th and it's been 10 years since her transplant. She has had 3 seperate bouts of Congestive heart Failure with this heart, one because to the negligence of the hospital staff!!! Her BNP, during her first CHF event was over 7700 (normal 0-100) I didn't think she was going to make it, but she did. We were on a trip when this happened and so she ended up at Duke University. That was really hard to deal with. But, you know, she keeps going. Last fall she was married and even though she has a lot to deal with, she handles it pretty well. How much life she has left, we don't know; transplants are not a cure and they tell you that upfront, it is a band-aid which can extend life. I wish you well!
You asked about "why the discrimination on the chest pain". People seem to have such a hard time understanding this. There are only 3 reasons for there to be TRUE CARDIAC chest pain: structural disease of the heart which is referred to as Cardiomyopathy (which literally means heart muscle disease), some, but not all, of the structural problems in Congenital Heart Disease or CAD (Coronary Artery Disease) The reason there is chest pain is because of a lack of blood flow to the heart muscle either through blocked ateries (CAD) or through the heart muscle walls being to thick where the blood supply has been outstripped (Hypertrophic Cardiomyopathy) or too thin where the heart itself is enlarged and walls are stretched (Congestive Heart Failure) If you are a woman you are protected from CAD because of the hormones that allow you to bear children. It's a 'safety mechanism. Women don't start having CAD issues until after menopause. It takes at least 20 years, in CAD, for plague to develop in the arteries of the heart enough to cause a problem with chest pain. So the reality of it is, it is physically impossible for you to be having TRUE heart related chest pain. Now, having said that, what most people feel during tachycardias is what they will refer to as chest pain. The hard thumping, the "my heart feels like a balloon thats going to explode, the pressure, the uncomfortable feeling that tachycardias produce, etc; that's what people are calling chest pain; There is a BIG difference between the two.
sorry i posted before i read the other comments, i would just like to say that i too had shortness of breath, fatigue, weakness, CHEST PAIN, etc. etc. and yes when i would have attacks of tachycardia i would become cripple. could not breath, couldnt move. happened three times that severe, would call 911 because it always felt like i was dying. i can only say i think there are different types of fast heart rates because there are also times when my heart will go fast and its not crippiling. since getting my pacemaker i havent had anymore of the crippiling attacks. in my opinion, i think it was a response to my heart having a pause. my pauses were only happening on the monitor at night while sleeping and my crippiling tachycardia attacks in the day or evening while awake. i think it was my mind being alert sending my heart into overdrive saying "no you're not supposed to stop, keep beating" because before it would go fast i would feel a gravity sensation come over my body and i always knew it was coming.
they have never told me why i have chest pain, which i still get. they always bring up my age too, which seems so funny because most twenty seven year olds dont need pacemakers but i needed one, so why the discrimination on the chest pain?
they have never told me why i have chest pain, which i still get. they always bring up my age too, which seems so funny because most twenty seven year olds dont need pacemakers but i needed one, so why the discrimination on the chest pain?
Hi,
im a 27 year old female and had the same thing, mobitz II and bradycardic (30) while sleeping, i was given a pacemaker too. not sure what happen to my heart to need it but what can i say, at least im alive which two months ago i felt like i would die any moment. has your son had any trouble since getting his pacemaker?
im a 27 year old female and had the same thing, mobitz II and bradycardic (30) while sleeping, i was given a pacemaker too. not sure what happen to my heart to need it but what can i say, at least im alive which two months ago i felt like i would die any moment. has your son had any trouble since getting his pacemaker?
I will do the best I can to answer your post. I initially broke your text up into sections and then answered but I couldn’t get it to format right. So people who are interested will have to figure out which parts of your post I am referring to. Hope it’s not too difficult.
If I don’t break it up in some way it becomes too long.
I will answer your first part regarding the legal stuff in a separate post if anyone is interested. May be best to write shorter posts so it is easier to break up the various subjects for future posts. I am going to make mine much shorter from now on unless I'm answering a long one and then I will attempt to break it into parts as I have time.
As far as I’m aware no one has had or does have problems believing me. Not once did a doctor or any medical employee question the veracity of my son’s symptoms or any statements he or I or our family members made. Nor did any of us make statements associating his symptoms with a particular problem. When they asked what he was feeling we simply described this as accurately as we or he could.
It is important also, to realize that whenever he was physically able to speak for himself my son described his own symptoms. He is a grown man after all. It was only when he became confused that either my husband or I (or other family members) helped to describe what was going on. I may have made it sound as if our family just sat there and argued with the doctors. Actually there was a great deal of exhausting conversation between my son, the many different teams of doctors who not only contradicted each other but often themselves, AND myself, my husband, and my young adult daughters.
The complexity of his symptoms as accompanied by the data led to confusion among the doctors, especially with the complexity of his autoimmune disease. There are very few doctors on the planet who understand much about PAN and the ones who do will tell you that anyone who says they understand it are lying.
The symptoms we described may have fit that of a Class IV heart patient in your mind or someone else’s but since anyone could SEE them happening right there it was no mystery. No one mentioned Class IV heart patient, or thought he needed a heart transplant OR was in the process of dying.
His EP cardiologist who put in the pacemaker said he classified my son as a Class I candidate for a permanent pacemaker based on the ACC’s, and AHA’s 2002 formal guidelines as to whether a patient will benefit from a permanent pacemaker implantation. This is the highest classification and indicates a patient needs the PM to live..
I never claimed that this Echo was significant in terms of his symptoms. My point was only the change in echo’s over 6 short months from Dec to June which the cardiologists thought was significant and brought up themselves.
The doctors at UCLA brought up the word cardiomyopathy & that was the first time I had heard it used in my son’s case.
My daughter (now 31 and healthy) had a large ASD diagnosed at age 18 months. She developed severe cardiomyopathy (right heart) with a heart size 3 times normal (enough to have pushed out the bony arc of her ribs significantly over time) by the time they did the open-heart surgery repair.
The pediatric cardiologists had originally said we could wait until she was age 6 to do the surgery but due to her very large atrial defect she went into heart failure with severe pneumonia, fluid build-up, etc that they eventually agreed would not go away until they did the repair.
Other than the few months of heart failure before the surgery she was a fairly normal child. Her symptoms were barely detectable which was why it went undiagnosed until she was 18 months. On the contrary what my son has gone through in terms of symptoms have been dramatic & heart-breaking.
Yes, many people have asymptomatic sinus tachycardia. I know it has something to do with how long the symptoms last and with what other things are going on to cause the tachy. I have had it too as PAN has sent me to the CCU with heart inflammation in the coronary arteries. (malignant hypertension, tachycardia to 200 but episodes did not last for more than a few minutes). My son had severely symptomatic tachycardia with symptoms indicative or an MI and that was one of the most confusing issues. Hopefully the docs at UCLA would be experienced enough with various symptom complexes to figure this out. His private cardiologists and EP docs had no problems with it!
Interesting, so your daughter had an underlying autoimmune disease as well. Does she still suffer from it? 40 is low for a child that age. It has been my experience as a Mom that doctors have trouble taking children’s symptoms seriously. She must have suffered quite a bit before they got that PM in.
I don’t even know what all of those initials stand for regarding your daughter’s electrical system problems. I recognize Sick Sinus Syndrome, Wolff-Parkinson-White — guessing, Left Bundle Branch Block, Right Bundle Branch Block? Mahalm fibers (associated with Pre-excitation syndrome).
No, he has not had any known infection with coxsackie. The evidence in his case indicates that it is the PAN vasculitis that cut off small amts of blood to the electrical system of his heart causing the Mobitz II block & bradycardia.
Thank you! Again, though, remember that he showed a determination to get better NOW! Without his drive to get better I know our efforts would not have been as effective.
I think in the final analysis it is results that tell the tale. Or at least we are lucky that this is the case for us. Now that the pacemaker has been in for 9 days, his current cardiologist and EP doc think it happened this way: the vasculitis did a silent stealth attack on the electrical system of his heart. This cut off a small amount of blood supply through the small to medium arteries, caused the damage that initiated the bradycardia and the Mobitz II block.
Most significant — we now know that he is being “paced” 30% of the time, both day and night. That is eight hours per day on average that he is experiencing bradycardia &/or a Mobitz II conduction block, which as you know is a lot of pacing!
Our theory is that the stress on his heart caused by it having to work so hard to perfuse his organs with blood during these eight hours initiated an increasingly severe tachycardia via a feedback loop (probably autonomic nervous system). It could well have been that his symptoms were due to a combination of the bradycardia/ Mobitz II/ and tachycardia. The bradycardia/Mobitz could have caused the worst symptoms with the tachycardia kicking in to accentuate them.
I wish the same to you and to your daughter.
How is she doing now? You said she had a heart transplant at age 22. Were these electrical conduction problems present just when she was a child? Has she continued to have any problems since the transplant? My sincerest hopes that she is doing well & that she has managed to overcome the long years of illness and disability.
Please keep in touch. I will also write about the legal issue if it is important to you & others. It is just that it takes up quite a bit of space to discuss.
If I don’t break it up in some way it becomes too long.
I will answer your first part regarding the legal stuff in a separate post if anyone is interested. May be best to write shorter posts so it is easier to break up the various subjects for future posts. I am going to make mine much shorter from now on unless I'm answering a long one and then I will attempt to break it into parts as I have time.
As far as I’m aware no one has had or does have problems believing me. Not once did a doctor or any medical employee question the veracity of my son’s symptoms or any statements he or I or our family members made. Nor did any of us make statements associating his symptoms with a particular problem. When they asked what he was feeling we simply described this as accurately as we or he could.
It is important also, to realize that whenever he was physically able to speak for himself my son described his own symptoms. He is a grown man after all. It was only when he became confused that either my husband or I (or other family members) helped to describe what was going on. I may have made it sound as if our family just sat there and argued with the doctors. Actually there was a great deal of exhausting conversation between my son, the many different teams of doctors who not only contradicted each other but often themselves, AND myself, my husband, and my young adult daughters.
The complexity of his symptoms as accompanied by the data led to confusion among the doctors, especially with the complexity of his autoimmune disease. There are very few doctors on the planet who understand much about PAN and the ones who do will tell you that anyone who says they understand it are lying.
The symptoms we described may have fit that of a Class IV heart patient in your mind or someone else’s but since anyone could SEE them happening right there it was no mystery. No one mentioned Class IV heart patient, or thought he needed a heart transplant OR was in the process of dying.
His EP cardiologist who put in the pacemaker said he classified my son as a Class I candidate for a permanent pacemaker based on the ACC’s, and AHA’s 2002 formal guidelines as to whether a patient will benefit from a permanent pacemaker implantation. This is the highest classification and indicates a patient needs the PM to live..
I never claimed that this Echo was significant in terms of his symptoms. My point was only the change in echo’s over 6 short months from Dec to June which the cardiologists thought was significant and brought up themselves.
The doctors at UCLA brought up the word cardiomyopathy & that was the first time I had heard it used in my son’s case.
My daughter (now 31 and healthy) had a large ASD diagnosed at age 18 months. She developed severe cardiomyopathy (right heart) with a heart size 3 times normal (enough to have pushed out the bony arc of her ribs significantly over time) by the time they did the open-heart surgery repair.
The pediatric cardiologists had originally said we could wait until she was age 6 to do the surgery but due to her very large atrial defect she went into heart failure with severe pneumonia, fluid build-up, etc that they eventually agreed would not go away until they did the repair.
Other than the few months of heart failure before the surgery she was a fairly normal child. Her symptoms were barely detectable which was why it went undiagnosed until she was 18 months. On the contrary what my son has gone through in terms of symptoms have been dramatic & heart-breaking.
Yes, many people have asymptomatic sinus tachycardia. I know it has something to do with how long the symptoms last and with what other things are going on to cause the tachy. I have had it too as PAN has sent me to the CCU with heart inflammation in the coronary arteries. (malignant hypertension, tachycardia to 200 but episodes did not last for more than a few minutes). My son had severely symptomatic tachycardia with symptoms indicative or an MI and that was one of the most confusing issues. Hopefully the docs at UCLA would be experienced enough with various symptom complexes to figure this out. His private cardiologists and EP docs had no problems with it!
Interesting, so your daughter had an underlying autoimmune disease as well. Does she still suffer from it? 40 is low for a child that age. It has been my experience as a Mom that doctors have trouble taking children’s symptoms seriously. She must have suffered quite a bit before they got that PM in.
I don’t even know what all of those initials stand for regarding your daughter’s electrical system problems. I recognize Sick Sinus Syndrome, Wolff-Parkinson-White — guessing, Left Bundle Branch Block, Right Bundle Branch Block? Mahalm fibers (associated with Pre-excitation syndrome).
No, he has not had any known infection with coxsackie. The evidence in his case indicates that it is the PAN vasculitis that cut off small amts of blood to the electrical system of his heart causing the Mobitz II block & bradycardia.
Thank you! Again, though, remember that he showed a determination to get better NOW! Without his drive to get better I know our efforts would not have been as effective.
I think in the final analysis it is results that tell the tale. Or at least we are lucky that this is the case for us. Now that the pacemaker has been in for 9 days, his current cardiologist and EP doc think it happened this way: the vasculitis did a silent stealth attack on the electrical system of his heart. This cut off a small amount of blood supply through the small to medium arteries, caused the damage that initiated the bradycardia and the Mobitz II block.
Most significant — we now know that he is being “paced” 30% of the time, both day and night. That is eight hours per day on average that he is experiencing bradycardia &/or a Mobitz II conduction block, which as you know is a lot of pacing!
Our theory is that the stress on his heart caused by it having to work so hard to perfuse his organs with blood during these eight hours initiated an increasingly severe tachycardia via a feedback loop (probably autonomic nervous system). It could well have been that his symptoms were due to a combination of the bradycardia/ Mobitz II/ and tachycardia. The bradycardia/Mobitz could have caused the worst symptoms with the tachycardia kicking in to accentuate them.
I wish the same to you and to your daughter.
How is she doing now? You said she had a heart transplant at age 22. Were these electrical conduction problems present just when she was a child? Has she continued to have any problems since the transplant? My sincerest hopes that she is doing well & that she has managed to overcome the long years of illness and disability.
Please keep in touch. I will also write about the legal issue if it is important to you & others. It is just that it takes up quite a bit of space to discuss.
Thank you for the long posting. It explained a lot. I see the frustration you have had over all that your son has been through. Legally speaking UCLA would have been up a creek without a paddle had a lawsuit ensued because of something happening to your son. UCLA would not be able to blow him off in the manner that you have described if their was suffiecient data backing what you are saying with things like the EKG strips. I too, have worked extensively in the medical field, everything from being an OR secretary to Aid work in nursing homes as well as in the hospitals. Having said that my main field of work was an EKG supervisor and Cardiopulmonary Technician. I would classify cardiology as my primary field. The EF of 45% is not bad, not really. 50-70% is normal. A lot of things can affect the EF something as simple as just how well the body is hydrated at the time of the echo. The symptoms you are describing of your son's condition are that of a Class IV heart patient as in cannot function, I need a transplant now, I'm in the process of dying. That's why no one is believing you. An EF of 45% would NEVER give symptoms of that degree. I, myself, have SVT and my heart rates can run anywhere from 140 to over 200 without even getting out of bed. You start getting up around the 180 mark, you can feel pretty crummy, rates of 140 aren't really that bad. Having said all of that, your son's symptoms of bradycardia make total sence to me. When my daughter was 3 years old she developed Juvenile Rhuematoid Arthritis and we used to have to wake her up at night to give her medicine; it was close to impossible to wake her up. (she was diagnosed at the age of 6 years of heart disease) Her pulse rate was always 40 at that point in her life, which is extrememly low for a young child. They finally put her pacemaker in when she was 8 years old. Even though she was having severe dizzy spells, it wasn't until she had a WAKING pulse rate in the 30's that they implantred the pacemaker; Why on earth Houston waited for that to happen was beyond me! But they did! We never had a problem with our daughter being confused or anything like that, even as low as her heart rates got, we never had this issue. She did lose cognitive issues after her open-heart surgery which they now know can happen due to the immune system kicking in because of blood going through the tubing of the heart-lung machine. The immune system attacks the brain. People with cardiomyopathies can have mental issues when the disease progresses to a severe state because of the lack of blood flow to the brain. My daughter's electrical system problems were numerous: SSS, W-P-W, LBBB, RBBB, a Maheim Fiber. When she was young, she had the Coxsacie Virus which basically destroyed her elecrical system. Did your son ever get diagnosed with this virus? I'm really glad that you stuck to your guns on getting your son the help he needed; you would have regretted not listening to your own instincts and I'm also glad that your son is doing so much better. I wish you both well!
Thank you so much for your comments. I didn't realize it would hit such a nerve! VERY comforting to hear from you all who at least underst& something of what we have been through. Yes, westfield60, it is scary & we were not prepared for the journey we were about to embark on prior to June 28. & you & sukumar794 are both correct that there can be really good doctors & really bad ones, that misdiagnosis can happen & that quality of care varies tremendously from patient to patient & from medical center to medical center. To grendslori, thank you so much for your information-packed post. So sorry to hear about the extent of what you went through with your daughter. ONE of those things they diagnosed would have been awful but to have such a combination. My son was apparently just beginning the slippery slope to cardiomyopathy at UCLA. His echo done at USC University Hospital in Dec was normal & the one they did at UCLA on June 30 showed that between the two tests, in 6 months, his ejection fraction had dropped from 67 to 45, they also said the heart muscle itself (forget the exact word they used) was no longer pumping normally whereas his heart muscle had been normal in the earlier test. They described his status as being a 5% heart failure, whatever that was supposed to mean! [FYI — Horrible as it is to contemplate, I should say here that I do believe there was a strong Medico-Legal component at UCLA & I’ll tell you why. My son is one of the most highly regarded young musicians — singer, songwriter, guitarist, performer, producer, engineer, recording artist — in Los Angeles. He has been a professional since the age of 14. I got the strong feeling that behind the scenes there were these teams of lawyers saying “Hey, if you put a pacemaker in this kid & something happens we (UCLA) are going to be liable for his entire projected lifetime income (which will be considerable if as long as he is healthy enough), plus be liable for extensive psychological damages to the family, etc, etc.” Whereas if they simply discharged him & something happened they could claim a scenario like “Well, we didn’t have sufficient data to diagnose him correctly. His case was very complicated & we needed more (outpatient) time to figure out what to do. Etc.”] Also FYI I never used the word "cardiac cripple" at UCLA because I realized these docs were treating a pt population which consisted mostly of VERY sick heart pts (like your daughter) & also those expecting to have or having had a heart transplant/ heart lung transplant, etc. Although I knew my son had life-threatening & life-altering heart problems I realized throughout that bradycardia, Mobitz II conduction block, & a sinus tachycardia were relatively easy to treat comparatively speaking. It’s pretty hard to ignore this fact when all of the surrounding pts have far more complex & dangerous issues! As a parent I had prior experience with cardiologists when my daughter (now healthy & 31) was dx with a large atrial septal defect (ASD) & required open heart surgery for repair at age 3. It was done at UCSF where we got top-notch care. I also have education & training in the field of medicine & human physiology which CAN hurt me as a parent/ patient advocate. Many doctors are put off when a mere patient or patient advocate/ parent appears to know too much. Am aware of trying to save space on these posts & by trying to save words I did not give a good enough definition of what I meant by a “cardiac cripple.” It is confusing as he was having 2 distinct sets of symptoms — 1 set due to the tachycardia & 1 set due to the bradycardia/ Mobitz II. As we entered UCLA on June 28 we were not aware he was having hours of bradycardia while he slept. To ME, our family & friends, & to my son the definition of “cardiac cripple” is used to describe someone whose activity is seriously restricted due to a heart condition. I know there are various other definitions. To us it means the following: When a 29 year old professional musician, singer (trained professionally for since the age of 12), songwriter, guitarist, etc is so out of breath that he cannot hold a conversation while sitting in bed; that so little blood is perfusing his brain that he becomes terribly confused & cannot even frame a thought, has trouble reading & comprehending, etc; that he feels as if he has run a marathon although all he has done is moved from a reclined sitting position to a st&ing position — & it gets worse from there the more activity he attempts; that he develops chest pressure/pain in a direct relationship with his activity level; that he is too weak to st& up let alone live any kind of a “life”; that upon walking to the bathroom & back he is disoriented, tachycardic at 150-180, on the edge of passing out, first gets hot & sweaty, followed by shaking chills that require 7 blankets & 20 minutes to get under control.
The nurses were great though & they kept saying “he needs a pacemaker for the Mobitz II & bradycardia & then treat tachycardia w/ beta blockers,” & “if it were my son I wouldn’t let him leave the hospital w/o a pacemaker,” etc. THEY were the one’s who kept running into his room @ night as the monitors set off ear-splitting alarms minute after minute, hour after hour, due to his bradycardia while he slept soundly. Too soundly — (he is NORMALLY a light sleeper & would have been woken in a second by this kind of noise, not to mention all of us huddled around his bed.) NOT a normal sleep. We had trouble waking him up & when we did he was terribly confused & disoriented & did not remember it later. I kept describing this to the doctors but they just pooh-poohed it as if it were nothing. Plus, if they had wanted to, they had miles of monitor strips to prove both the bradycardia & the Mobitz II conduction blocks, PLUS the times he went into complete third degree heart block, not-to-mention his severe tachycardic episodes whenever he talked or moved during the day. I mean the tachycardia happened right in front of them! I was VERY careful about what I said to the doctors. I stuck to what the monitor strips & test results showed & the symptoms related to his heart but they just weren't seeing it. I kept repeating the mantra that you cite, which is why wouldn't they consider the idea of putting "a pacemaker in & then give the drugs to control any faster heart rates." The EP cardiologists were in charge & everyone deferred to their opinion. Other than the medico-legal concerns I describe above being the paramount concern I believe the secondary concern was the rigid bureaucratic political hierarchy among the doctors, attorneys, hospital administrators. Concern for the patient’s well being came in a (very) distant third. Bottom line though, despite whatever games the doctors & their bureaucratic buddies were playing my son & our family knew something serious was going on & once we saw UCLA was going to stick to their hardball we got out of there & within 48 hours were in the hands of both general cardiologists & EP cardiologists whom we felt we could trust. The nurses at UCLA has told us that many heart transplant patients began their journey to that point just where our son was at & we had no intention of letting it go that far if we could help it. His private doctors believe it was the PAN (polyarteritis nodosa) vasculitis that he has had for 26 years that did the initial damage to the electrical system of his heart. We can only hope that the damage is limited to those things the pacemaker & the beta blockers can help & engage good doctors to keep a close watch on things. It is tremendously gratifying to know that his pacemaker is working 30% of the time to prevent his bradycardia & to keep his Mobitz II heart conduction block from becoming worse (which it is known to do, especially for people with underlying autoimmune diseases.) I am writing a separate message to you, grendslori, as I could not possibly fit it all into one post.
The nurses were great though & they kept saying “he needs a pacemaker for the Mobitz II & bradycardia & then treat tachycardia w/ beta blockers,” & “if it were my son I wouldn’t let him leave the hospital w/o a pacemaker,” etc. THEY were the one’s who kept running into his room @ night as the monitors set off ear-splitting alarms minute after minute, hour after hour, due to his bradycardia while he slept soundly. Too soundly — (he is NORMALLY a light sleeper & would have been woken in a second by this kind of noise, not to mention all of us huddled around his bed.) NOT a normal sleep. We had trouble waking him up & when we did he was terribly confused & disoriented & did not remember it later. I kept describing this to the doctors but they just pooh-poohed it as if it were nothing. Plus, if they had wanted to, they had miles of monitor strips to prove both the bradycardia & the Mobitz II conduction blocks, PLUS the times he went into complete third degree heart block, not-to-mention his severe tachycardic episodes whenever he talked or moved during the day. I mean the tachycardia happened right in front of them! I was VERY careful about what I said to the doctors. I stuck to what the monitor strips & test results showed & the symptoms related to his heart but they just weren't seeing it. I kept repeating the mantra that you cite, which is why wouldn't they consider the idea of putting "a pacemaker in & then give the drugs to control any faster heart rates." The EP cardiologists were in charge & everyone deferred to their opinion. Other than the medico-legal concerns I describe above being the paramount concern I believe the secondary concern was the rigid bureaucratic political hierarchy among the doctors, attorneys, hospital administrators. Concern for the patient’s well being came in a (very) distant third. Bottom line though, despite whatever games the doctors & their bureaucratic buddies were playing my son & our family knew something serious was going on & once we saw UCLA was going to stick to their hardball we got out of there & within 48 hours were in the hands of both general cardiologists & EP cardiologists whom we felt we could trust. The nurses at UCLA has told us that many heart transplant patients began their journey to that point just where our son was at & we had no intention of letting it go that far if we could help it. His private doctors believe it was the PAN (polyarteritis nodosa) vasculitis that he has had for 26 years that did the initial damage to the electrical system of his heart. We can only hope that the damage is limited to those things the pacemaker & the beta blockers can help & engage good doctors to keep a close watch on things. It is tremendously gratifying to know that his pacemaker is working 30% of the time to prevent his bradycardia & to keep his Mobitz II heart conduction block from becoming worse (which it is known to do, especially for people with underlying autoimmune diseases.) I am writing a separate message to you, grendslori, as I could not possibly fit it all into one post.
I have no idea why they would have sent him home without a pacemaker. Heart rates in the 30's are low enough to stop the heart from beating all together. I can relate to what happen ed to you however, because it happened to us with our daughter when she was only 6 years old. We were sent to (GOS) Great Ormond Street Children's Hospital in London to their cardiology department. (This hospital is the oldest childrens hospital in the world and is quite famous) Our daughter was sent there by the Air Force facility because they found 3 seperate problems with her heart: Sick Sinus Syndrome (which she eventually recieved a duel chamber pacemaker), Wolfe-Parkinson-White Syndrome and (HCM) Hypertophic Cardiomyopathy that had invaded all ot the ventricular walls as well as both sides of the septal walls. He wall thickeness was that of an adult man. HCM is a terminal heart disease. The doctor who performed the echo there agreed that she did have HCM, there was no doubt. We were sent home with a W-P-W diagnoses and told that was her only problem; there was no HCM. HCM robbed her of both her childhood years as well as her teen years because of the progression of the disease and without her transplant, she would have died. Her HCM was one of the worse they have seen in this country; by the time she had her transplant at 22, her walls were so thick there wasn't much chambers left in the ventricles and what chamber there was had a lot of bridging muscle fibers running through the chambers. But to GOS, she didn't have this disease. Like so many on here, we have had our fair share of lousy doctors as well as excellent doctors. We been everywhere from the medical centers in Houston to the National Institutes Of Health in Besthesda to the Universties of Texas at San Antonio and Michigan. The only thing that I do wonder about which may have contributed to your problem with UCLA is some of the description that you have given on here, if you gave the same to UCLA they may have not taken you seriously enough. You described your son as being a cardiac cripple, The symptoms that you described don't add up to what a true cardiac cripple life is really like. The symptoms that you describe is that of a patient with severe CAD (Coronary Artery Disease) which it takes at least 20 years of built up plague in the arteries to cause true heart-related chest pain, your son's a bit too young for that problem. The other causes for heart-related chest pain in young people is due to structural problems with the heart itself such as any of the Cardiomyopathies, which your son also does not have. Some of the things you are saying don't quite add up to the type of problem your son was having. The slow heart rates can make a person pass out or have pre-syncope, where the person is close to passing out, but doesn't. It can be hard to wake a person up if their heart rate is too low. They can have some fatigue, but I can't imagine it being to the degree of being a cripple. My daughter's rates were in the low 40s and when they started dropping to the 30's while up and awake, they put a pacemaker in her asap, because the heart could just stop beating. After the pacemaker was put in, she too, did much better as far as her presyncope was related. The HCM was the killer for her ability to do anything. Eventually, she was having heart attacks all the time and had non-stop chest pain even while sitting in a chair or trying to sleep because the walls were so thick there was no blood supply to the muscle. She eventually got oxygen and that didn't even phase the problem. Sometimes you get a doctor who listens to a statement by a parent and that doctor heads in the opposite direction. I don't have a clue as to what you have said to the doctors at UCLA, I can only guess based on what you have written here. If you went to these doctors, who are used to seeing transplant patients who are dying, and described your son as being a cardiac cripple, they will more than likely walk away saying you have no idea how lucky you are. They won't take you seriously and that may be the reason they sent your son home. It makes no sence that they would have given him a beta blocker with a heart rate in the 30-40s. The standard for that is to put a pacemaker in and then give the drugs to control any faster heart rates. It is very difficult for a parent, especially a mother, to watch anything happen to their child; it's scary especially when it concerns the heart. You did what you felt you had to do to help your son, to some degree it may have backfired. What is important is that he now has his pacemaker and is feeling so much better!! I wish you both well!
These sort of things do happen in most hospitals and erratic treatments meted out to poor victims. Old AWMI,the cardio disregarded my irregular heartbeats and rather preferred to apply a whole lot of medications to combat my ailment. Proper investigations necessitates an Electrophysiological study and pacemaker implantation. Strange but true !misdiagnosis does happen.
This is really scary to read this, but through my experience of being a heart patient over the past 6 years, I have to say that the level of competence and level of quality in the physicians I have seen varies so greatly that it frightens me. Some physicans are so hurried (maybe to get back to their golf game) that they overlook something important or they simply don't care. Having said that I also have run into some really dedicated and brilliant doctors out there that make your head spin at their knowledge and advice and their ability to give you total confidence in their abilities. I'm sorry to hear the treatment your received at UCLA
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