Looking for input regarding my dad

[Aerovette]

This has reached the point of ridiculous from a medical standpoint, and sadness for me to see my dad this way.

He has/had afib and has a pacemaker. Prior to the pacemaker, they did an ablation. While most everyone I have heard about, was draggy for a little while after their ablation, but then snapped back good as new. Not my dad.

He is constantly fatigued and short of breath. He can't walk 20 feet without having to sit and rest. It takes him a few minutes to climb the stairs. His behavior would have you believe he was chasing the dog or chopping wood when all he did was walk from the stairs to the kitchen table. It takes a few minutes to walk from the car to the door and he comes in breathing like he just ran a mile.

Doctors can't figure it out. BP is fine, heart rate is fine, bleed time is fine, oxygen level in blood is fine. Afib is controlled. It just makes no sense and physically, everything checks out, but he is just a mess.

I'm looking for similar stories. You, someone you know, neighbor? Anyone else know of a situation like this? What was the cause?

[z06psi]

COPD?

[steve's 74]

Originally Posted by aerovette

He is constantly fatigued and short of breath. He can't walk 20 feet without having to sit and rest. It takes him a few minutes to climb the stairs. His behavior would have you believe he was chasing the dog or chopping wood when all he did was walk from the stairs to the kitchen table. It takes a few minutes to walk from the car to the door and he comes in breathing like he just ran a mile.

What was the cause?

I'm currently sitting in the hospital as they administer a drug known as Tikison (sp?) to try and get my afib under control. I have dealt with severe afib for 18 years, and have been told it's the worst case anyone has seen. Drugs, ablations, maze procedure, nothing has worked.

The above issues you are describing happened to me, exactly as you have written. It took 12 months to figure out that the cardiologist who performed my ablations went too far. Ablating nerves (literally burning them away) creates scar tissue in the area where the pulmonary veins connect to the heart. Some ablating is performed inside the heart, some inside the veins. In my case, excessive scar tissue in my pulmonary veins blocked one vein 100%, and two others by up to 50%. As the scar tissue grew, I became weaker, ultimately causing me to be nearly unable to climb stairs or walk more than 25 feet. I was initially diagnosed with Pulmonary Arterial Hypertension, which is ultimately fatal, as the symptoms are very similar. A right heart cath showed blood pressures within my lungs were off the chart. Normal PH treatments, however, had no impact.

What ultimately led to the correct diagnosis was an MRI of my lungs. In the MRI, the lungs show as black ovals with white pinpricks of light where blood is flowing. Halfway up on my right lung, the lung went completely black due to the complete lack of blood flow.

In my case, the correction involved installing a stent into the blocked pulmonary vein (not an artery, which is where one normally expects to have stents). I was on the table for 5 hours, and the cardiologist came out smiling to tell my wife and son that it had been a success and blood (seen via dye in the vein) was flowing again. Two days later I was making laps around the ICU. It made a huge difference. My work was performed at VCU Hospital lin Richmond VA. This type of stent installation had never been heard of before, and I was their first attempt to correct the ablation screw up.

My problem now is the loss of muscle from the incapacitation I experienced. I lost 30 lbs. over two years and due to recurring afib haven't been able to regain my strength. I hope to get back at some point.

Unless your father deals with a cardiologist who understands the dynamics caused by excessive ablations, they won't be able to diagnose the problem, if indeed it's similar to my situation. It may be entirely different from what I've been through, but you described my experience word for word.

[BOTY]

My MIL is going through that right now. I wish I had an answer. Just did two Afib bouts and a triple bypass. Seems like Steve 74 may be onto something.

[C3C7NIC]

Originally Posted by aerovette

This has reached the point of ridiculous from a medical standpoint, and sadness for me to see my dad this way.

He has/had afib and has a pacemaker. Prior to the pacemaker, they did an ablation. While most everyone I have heard about, was draggy for a little while after their ablation, but then snapped back good as new. Not my dad.

He is constantly fatigued and short of breath. He can't walk 20 feet without having to sit and rest. It takes him a few minutes to climb the stairs. His behavior would have you believe he was chasing the dog or chopping wood when all he did was walk from the stairs to the kitchen table. It takes a few minutes to walk from the car to the door and he comes in breathing like he just ran a mile.

Doctors can't figure it out. BP is fine, heart rate is fine, bleed time is fine, oxygen level in blood is fine. Afib is controlled. It just makes no sense and physically, everything checks out, but he is just a mess.

I'm looking for similar stories. You, someone you know, neighbor? Anyone else know of a situation like this? What was the cause?

Hard to give input without more information or access to diagnostic tests that have been done.

I am going to assume that all other cardiac function has been assessed. "everything" checking out would indicate to me he has had angiography and echocardiogram. The symptoms described most match up with CHF (congestive heart failure), with this he would also have presentation of swelling of legs, more difficulty breathing when laying down (orthopnea) as well as the symptoms you described above.

As Top mentined, COPD could be a cause as well, but can easily be ruled in or out with PFT (pulmonary function tests) and CXR (Chest xray).

Even though cardiac or pulmonary malfunction are the likely cause, there is a possibility he has been recently started on new medications that could ALSO be contributing to these symptoms.

Hope that helps buddy.

Watched my dad literally wither away with a combo of Cancer and COPD, I will never forget those horrible months. Sorry man.

ALSO>>> if his doctor cannot figure it out, time to get a second opinion!!!

[steve's 74]

C3C7NICl is correct. All possibilities should be checked and properly diagnosed. My case is unique, but the team at VCU felt like my situation was going to become a much more common as many hospitals are now doing ablations, some without proper training and/or experience. Make certain that your Dad has a great team in both cardiology and pulmonology.

[LisaJohn]

Pulmonary hypertension??

[Aerovette]

Originally Posted by steve's 74

I'm currently sitting in the hospital as they administer a drug known as Tikison (sp?) to try and get my afib under control. I have dealt with severe afib for 18 years, and have been told it's the worst case anyone has seen. Drugs, ablations, maze procedure, nothing has worked.

The above issues you are describing happened to me, exactly as you have written. It took 12 months to figure out that the cardiologist who performed my ablations went too far. Ablating nerves (literally burning them away) creates scar tissue in the area where the pulmonary veins connect to the heart. Some ablating is performed inside the heart, some inside the veins. In my case, excessive scar tissue in my pulmonary veins blocked one vein 100%, and two others by up to 50%. As the scar tissue grew, I became weaker, ultimately causing me to be nearly unable to climb stairs or walk more than 25 feet. I was initially diagnosed with Pulmonary Arterial Hypertension, which is ultimately fatal, as the symptoms are very similar. A right heart cath showed blood pressures within my lungs were off the chart. Normal PH treatments, however, had no impact.

What ultimately led to the correct diagnosis was an MRI of my lungs. In the MRI, the lungs show as black ovals with white pinpricks of light where blood is flowing. Halfway up on my right lung, the lung went completely black due to the complete lack of blood flow.

In my case, the correction involved installing a stent into the blocked pulmonary vein (not an artery, which is where one normally expects to have stents). I was on the table for 5 hours, and the cardiologist came out smiling to tell my wife and son that it had been a success and blood (seen via dye in the vein) was flowing again. Two days later I was making laps around the ICU. It made a huge difference. My work was performed at VCU Hospital lin Richmond VA. This type of stent installation had never been heard of before, and I was their first attempt to correct the ablation screw up.

My problem now is the loss of muscle from the incapacitation I experienced. I lost 30 lbs. over two years and due to recurring afib haven't been able to regain my strength. I hope to get back at some point.

Unless your father deals with a cardiologist who understands the dynamics caused by excessive ablations, they won't be able to diagnose the problem, if indeed it's similar to my situation. It may be entirely different from what I've been through, but you described my experience word for word.

Over aggressive ablation is EXACTLY what we have suspected from day one, but no doctor is willing to toss another doctor in front of the bus.

[Sea Six]

He’s not still fulltiming in his RV is he?

[MrPeabody]

Originally Posted by aerovette

Over aggressive ablation is EXACTLY what we have suspected from day one, but no doctor is willing to toss another doctor in front of the bus.

Maybe, but the pacemaker is supposed to counteract that. My wife has had three ablations with little and short term results, but no negative effects because of her pacemaker.

I guess every case is different, though, that's how medial science is.

[steve's 74]

Originally Posted by aerovette

Over aggressive ablation is EXACTLY what we have suspected from day one, but no doctor is willing to toss another doctor in front of the bus.

As Nicole has said, all issues need to be reviewed, because it may be something else. Again, the MRI of my lungs was what finally caught the issue for me. And you are partially correct about the doctor thing. Only a referral to another doctor at another hospital found my problem. Once the other hospital's cardiologist had found the problem, it was difficult for someone to say that it wasn't the previous cardiologist's fault.

Maybe, but the pacemaker is supposed to counteract that. My wife has had three ablations with little and short term results, but no negative effects because of her pacemaker.

A pacemaker struggles to control afib when it includes high heart rate, which is what I'm dealing with. My rate has topped 220/minute on occasion, which is completely disabling. In my case, they would have to sever the nerve between heart and brain and install a pacer, which would then run my heart full time and turn me into an android. May still have to go that route, but it's obviously irreversible. I just went into aflutter at 12:30, which has caused mildly elevated heart rate but normal sinus rhythm.

Aerovette, if you want to talk, my number is 5409081957. Feel free to call. I'm stuck in the hospital for a while longer apparently.

[Aerovette]

Originally Posted by Sea Six

He’s not still fulltiming in his RV is he?

No. They had to give that up long ago. Between repairs to the RV and repairs to my dad, the dream went bust. I still feel bad for them. That was a mess.

[Aerovette]

Originally Posted by C3C7NIC

Hard to give input without more information or access to diagnostic tests that have been done.

I am going to assume that all other cardiac function has been assessed. "everything" checking out would indicate to me he has had angiography and echocardiogram. The symptoms described most match up with CHF (congestive heart failure), with this he would also have presentation of swelling of legs, more difficulty breathing when laying down (orthopnea) as well as the symptoms you described above.

As Top mentined, COPD could be a cause as well, but can easily be ruled in or out with PFT (pulmonary function tests) and CXR (Chest xray).

Even though cardiac or pulmonary malfunction are the likely cause, there is a possibility he has been recently started on new medications that could ALSO be contributing to these symptoms.

Hope that helps buddy.

Watched my dad literally wither away with a combo of Cancer and COPD, I will never forget those horrible months. Sorry man.

ALSO>>> if his doctor cannot figure it out, time to get a second opinion!!!

COPD was ruled out. It seems they are ruling out all other possibilities before concluding it was the ablation. The doctor that did it told us he was as aggressive with it as he felt safe being and eventually called it done. My guess is it should have been called done sooner.

He is having a lung MRI done now...the complication being the impact of the dye on his kidneys. Kidney function is just a hair above the lower limit. Right now he is being hydrated (4 hours). Basically a flush and fill.

[Aerovette]

@steve's 74

How long ago was all you listed done?

[MrPeabody]

Originally Posted by steve's 74

As Nicole has said, all issues need to be reviewed, because it may be something else. Again, the MRI of my lungs was what finally caught the issue for me. And you are partially correct about the doctor thing. Only a referral to another doctor at another hospital found my problem. Once the other hospital's cardiologist had found the problem, it was difficult for someone to say that it wasn't the previous cardiologist's fault.

Maybe, but the pacemaker is supposed to counteract that. My wife has had three ablations with little and short term results, but no negative effects because of her pacemaker.

A pacemaker struggles to control afib when it includes high heart rate, which is what I'm dealing with. My rate has topped 220/minute on occasion, which is completely disabling. In my case, they would have to sever the nerve between heart and brain and install a pacer, which would then run my heart full time and turn me into an android. May still have to go that route, but it's obviously irreversible. I just went into aflutter at 12:30, which has caused mildly elevated heart rate but normal sinus rhythm.

Aerovette, if you want to talk, my number is 5409081957. Feel free to call. I'm stuck in the hospital for a while longer apparently.

The bolded part you quoted from my post may have been misunderstood. I did not mean that a regular pacemaker can control afib. It doesn't. I was saying the pacemaker would counteract the results from an overly aggressive ablation. Some people come out of an ablation procedure with a pacemaker installed because that happens, and it's one of the things you are warned about going in. In my wife's case, she already had a pacemaker before her first ablation. She is on her third one now.

[Aerovette]

UGH

Lung MRI shows no blocked veins. The mystery continues.