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Cardiologist Visit And Update: Surgery Is Scheduled

Iron Woode

Iron Woode

Elite Member
Super Moderator
OK, some of you may or may not know that I was born with a very rare heart defect known as Partial Anomalous Pulmonary Venous Return.

I had an echo-cardiogram done last year and the results showed a strong heart but also a swelling of the right atrium. This lead my doctor to refer me to a cardiologist. The cardiologist wanted a better view of what my hearts' plumbing looks like so he sent me to get an MRI.

The MRI was on August 20, 2019. I just finished the follow up appointment with him.

These are my results:

  1. confirmation of my congenital defect
  2. it involves only 1 pulmonary vein
  3. the swelling is more than he likes
  4. the calculated blood volume of the vein that goes to the right atrium is lower than what should be causing the swelling. He thinks the calculation is off and more blood is entering there.
  5. He has referred me to a cardiac surgeon for another opinion. This means I may have to undergo surgery to correct this condition.

I have to admit that I feel a bit overwhelmed. The thought of surgery makes me nervous.

I thought I would share this with everyone. I will keep this thread updated as things progress.
 
Here's hoping they will be able to come up with a non-surgical solution. Please do keep us in the loop - at least we can sympathize and provide a shoulder to lean on.
 
Thanks everyone!

I didn't sleep well due to having a lot on my mind.

I now have to play the waiting game for the referral appointment. I should hear something within 2 weeks they said.
 
Worrying about what might or might not happen is fruitless but every single one of us does it. Honestly it's best to get a medical problem taken care of before it gets too bad. About the only thing you can do is make sure you go the best facility and see the best surgeon you can within your means. After that it's out of your hands.

Try not to worry since it's only going to cause you grief. If you have to have surgery medicine has come a long ways and most surgeons are pretty darn good at what they do. Don't give in to the random thoughts and enjoy the next two weeks of summer.
 
balloonshark said:
Worrying about what might or might not happen is fruitless but every single one of us does it. Honestly it's best to get a medical problem taken care of before it gets too bad. About the only thing you can do is make sure you go the best facility and see the best surgeon you can within your means. After that it's out of your hands.

Try not to worry since it's only going to cause you grief. If you have to have surgery medicine has come a long ways and most surgeons are pretty darn good at what they do. Don't give in to the random thoughts and enjoy the next two weeks of summer.
Click to expand...
What really bugs me is I should have started this journey 10 or 20 years ago. I am in my 50's now.
 
Iron Woode said:
What really bugs me is I should have started this journey 10 or 20 years ago. I am in my 50's now.
Click to expand...
I had both my heart surgeries before I could drive. I'm approaching 50 myself and if the narrowing continues to the point it affects me I'll need another to replace the valve once again. I understand your worry about surgery and aging. It will be tougher to bounce back the older we get. With that said I do know that my life was much better after the surgery. If I didn't have it I wouldn't be here right now. If this defect is affecting you your quality of life should improve if you need to have surgery.
 
Iron Woode said:
OK, some of you may or may not know that I was born with a very rare heart defect known as Partial Anomalous Pulmonary Venous Return.

I had an echo-cardiogram done last year and the results showed a strong heart but also a swelling of the right atrium. This lead my doctor to refer me to a cardiologist. The cardiologist wanted a better view of what my hearts' plumbing looks like so he sent me to get an MRI.

The MRI was on August 20, 2019. I just finished the follow up appointment with him.

These are my results:

  1. confirmation of my congenital defect
  2. it involves only 1 pulmonary vein
  3. the swelling is more than he likes
  4. the calculated blood volume of the vein that goes to the right atrium is lower than what should be causing the swelling. He thinks the calculation is off and more blood is entering there.
  5. He has referred me to a cardiac surgeon for another opinion. This means I may have to undergo surgery to correct this condition.

I have to admit that I feel a bit overwhelmed. The thought of surgery makes me nervous.

I thought I would share this with everyone. I will keep this thread updated as things progress.
Click to expand...
s ALLISOLM said -- Here's hoping they will be able to come up with a non-surgical solution. Please do keep us in the loop - at least we can sympathize and provide a shoulder to lean on.

I have one word of advice -- my friend if it turns out they are going to put a bandaid on the problem and not do surgery, understand that the problem is still there and will eventually need to be addressed!

They did that to me about 15 years ago -- put a bandaid on the issue using medicines and I am scheduled to have surgery as soon as my health allows me to be a candidate for surgery!!
Hang in there and live everyday to its fullest!!
 
I forgot to add something that makes surgery less complicated.

I not only have the PAPVR but I used to have the associated ASD (Atrial Septal Defect) which in simple terms is a hole between the atria. That was caused by the PAPVR's pressure on the right atrium blowing a hole to the other side. When I was 16 years old I went in for a heart catheterization to see if that hole was closing on its own. Keep in mind that the only imaging back then was X-rays. This would determine if I needed surgery. The hole was closing on its own and so they decided to leave it be.

In my echo-cardiogram I did last year, it showed no ASD at all which I verified with my cardiologist.

This makes PAPVR surgery much less complicated. I am hoping if it has to be done that they could use the less invasive method.
 
A small update:

I called about the referral and was told that they are waiting for the surgeon to reply back.

The name of the surgeon is Dr. Bob Babak Kiaii. He has an impressive resume:

www.schulich.uwo.ca

Announcement: Dr. Bob Kiaii re-appointed as Ray and Margaret Elliott Chair in Surgical Innovation, Department of Surgery

Dr. Bob Kiaii has been re-appointed as the Ray and Margaret Elliott Chair in Surgical Innovation in the Department of Surgery, Schulich School of Medicine & Dentistry, Western University, from July 1, 2018 to June 30, 2023.
www.schulich.uwo.ca www.schulich.uwo.ca

When I learn more I will add to this update.
 
Iron Woode said:
A small update:

I called about the referral and was told that they are waiting for the surgeon to reply back.

The name of the surgeon is Dr. Bob Babak Kiaii. He has an impressive resume:

www.schulich.uwo.ca

Announcement: Dr. Bob Kiaii re-appointed as Ray and Margaret Elliott Chair in Surgical Innovation, Department of Surgery

Dr. Bob Kiaii has been re-appointed as the Ray and Margaret Elliott Chair in Surgical Innovation in the Department of Surgery, Schulich School of Medicine & Dentistry, Western University, from July 1, 2018 to June 30, 2023.
www.schulich.uwo.ca www.schulich.uwo.ca

When I learn more I will add to this update.
Click to expand...
Thanks for the update!! Hang tough!!
 
I have another update and it's not what I expected. I received a call from the surgeon's office today.

The cardiac surgeon has accepted a position in California. 🙁

However, my referral was moved to a new doctor, Dr. Guo. Now I will have to wait and see what happens next.

I was told that my condition was very unusual and is not seen to often so more tests and consultations need to be done.
 
Iron Woode said:
I have another update and it's not what I expected. I received a call from the surgeon's office today.

The cardiac surgeon has accepted a position in California. 🙁

However, my referral was moved to a new doctor, Dr. Guo. Now I will have to wait and see what happens next.

I was told that my condition was very unusual and is not seen to often so more tests and consultations need to be done.
Click to expand...
Thanks for the update!! Hang tough!!
 
Sorry you had to hear this news during the most stressful time of year 🙁.

I would probably be doing a little research and some phone calls to try and find a staff more familiar with your condition. It kinda sounds like your current docs might be in over their heads. Heck, I would point blank ask them if you needed to go somewhere else and if so where would they suggest.
 
balloonshark said:
Sorry you had to hear this news during the most stressful time of year 🙁.

I would probably be doing a little research and some phone calls to try and find a staff more familiar with your condition. It kinda sounds like your current docs might be in over their heads. Heck, I would point blank ask them if you needed to go somewhere else and if so where would they suggest.
Click to expand...
Well, I am not overly stressed.

However, I did some checking on the new Dr. and discovered that he is Dr. Kiaii's right hand man.

southwesthealthline.ca - Health Services in London, Middlesex and Oxford, Ontario

Local health services, news, careers and events for South West, Ontario including London, Bruce, Elgin, Huron, Middlesex, Perth, Oxford, Grey and Norfolk.
www.southwesthealthline.ca

Specialty Information
Specialty: Cardiac Surgery
Practice focus within specialty: * heart valve repair and replacement surgery * adult congenital heart disease * great vessels * pulmonary thromboembolism
Click to expand...

The bolded section applies to me.

I am sure I will be in good hands.
 
Iron Woode said:
Well, I am not overly stressed.

However, I did some checking on the new Dr. and discovered that he is Dr. Kiaii's right hand man.

southwesthealthline.ca - Health Services in London, Middlesex and Oxford, Ontario

Local health services, news, careers and events for South West, Ontario including London, Bruce, Elgin, Huron, Middlesex, Perth, Oxford, Grey and Norfolk.
www.southwesthealthline.ca



The bolded section applies to me.

I am sure I will be in good hands.
Click to expand...
I googled him...I feel your in good hands!!
 
JEDIYoda said:
I have one word of advice -- my friend if it turns out they are going to put a bandaid on the problem and not do surgery, understand that the problem is still there and will eventually need to be addressed!
Click to expand...

I agree with this wholeheartedly (pun intended, and it's not every day I agree with JediYoga!). Whatever course of action you take, I hope it works out for the best!
 
Well, my latest update is that everything is on a semi-permanent hold due to covid-19.

My referral is in limbo. All surgeries have been cancelled which means rescheduling for everyone once the crisis is over.

Looks like I am going nowhere fast.
 
Iron Woode said:
Well, my latest update is that everything is on a semi-permanent hold due to covid-19.

My referral is in limbo. All surgeries have been cancelled which means rescheduling for everyone once the crisis is over.

Looks like I am going nowhere fast.
Click to expand...
so sorry to hear that,,,hang in there!!
My heart surgery scheduled for March 20th has not yet been cancelled!!
 
I have an update:

They called me to let me know that the surgeon is going to call me Monday morning for a consult of sorts. All in-person appointments are cancelled so they are doing them on the phone. I will have more info then.

🙂
 
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