Mended Hearts Open Forum

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Greetings Tim,

I've attached the diagnosis flow chart for you to show a doctor and ask for tests to rule out cardiac amyloidosis. I can help you with  finding a knowledgable cardiologist - where are you located?   Keep in mind until recently doctors did not have any therapies to offer if they did diagnose, so its just not on their radar for most docs. They treat the symptoms and not the underlying disease process. Here is a good info source and I'll be happy to answer questions for you and help you get your heart health back. 

https://arci.org/about-amyloidosis/ Sally- PNW Amyloidosis Support Group 206-819-3025

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Greetings Tim,

I've attached the diagnosis flow chart for you to show a doctor and ask for tests to rule out cardiac amyloidosis. I can help you with  finding a knowledgable cardiologist - where are you located?   Keep in mind until recently doctors did not have any therapies to offer if they did diagnose, so its just not on their radar for most docs. They treat the symptoms and not the underlying disease process. Here is a good info source and I'll be happy to answer questions for you and help you get your heart health back. 

https://arci.org/about-amyloidosis/ Sally- PNW Amyloidosis Support Group 206-819-3025

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Hi Tim, Baylor has an amyloidosis clinic in their advancedheart failure clinic- Call the scheduler for the Amyloidosis Dept Tamika @ 214-820-6856.

Please let me know if you'd like additional resources. There are other Amyloidosis clinics in TX near you but since you are in Baylor please check with them about scheduling testing for ruling out cardiac amyloidosis. Hopefully they will be able to rule it out. Keep me posted. I care.

Greetings Tim,

I've attached the diagnosis flow chart for you to show a doctor and ask for tests to rule out cardiac amyloidosis. I can help you with  finding a knowledgable cardiologist - where are you located?   Keep in mind until recently doctors did not have any therapies to offer if they did diagnose, so its just not on their radar for most docs. They treat the symptoms and not the underlying disease process. Here is a good info source and I'll be happy to answer questions for you and help you get your heart health back. 

https://arci.org/about-amyloidosis/ Sally- PNW Amyloidosis Support Group 206-819-3025

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Hi Tim, Baylor has an amyloidosis clinic in their advancedheart failure clinic- Call the scheduler for the Amyloidosis Dept Tamika @ 214-820-6856.

Please let me know if you'd like additional resources. There are other Amyloidosis clinics in TX near you but since you are in Baylor please check with them about scheduling testing for ruling out cardiac amyloidosis. Hopefully they will be able to rule it out. Keep me posted. I care.

Greetings Tim,

I've attached the diagnosis flow chart for you to show a doctor and ask for tests to rule out cardiac amyloidosis. I can help you with  finding a knowledgable cardiologist - where are you located?   Keep in mind until recently doctors did not have any therapies to offer if they did diagnose, so its just not on their radar for most docs. They treat the symptoms and not the underlying disease process. Here is a good info source and I'll be happy to answer questions for you and help you get your heart health back. 

https://arci.org/about-amyloidosis/ Sally- PNW Amyloidosis Support Group 206-819-3025

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Did you speak with Tamika specifically? Curious so I know what you are up against. This is not unusual unfortunately practitioners don't expect patients to know more than they do about their own health  so you need to persist... Find attached an AMYLOIDOSIS SYMPTOM CHECK LIST for you to check off your symptoms and send this via My Chart to your GP suggesting your concerns and ask them to help you arrange getting the necessary tests- assuming you tick off a number of the Symptoms on this list. You should also please ask for a different cardiologist for a fresh start given your symptoms have not resolved. Please let me know how things go. 

Hi Tim, Baylor has an amyloidosis clinic in their advancedheart failure clinic- Call the scheduler for the Amyloidosis Dept Tamika @ 214-820-6856.

Please let me know if you'd like additional resources. There are other Amyloidosis clinics in TX near you but since you are in Baylor please check with them about scheduling testing for ruling out cardiac amyloidosis. Hopefully they will be able to rule it out. Keep me posted. I care.

Greetings Tim,

I've attached the diagnosis flow chart for you to show a doctor and ask for tests to rule out cardiac amyloidosis. I can help you with  finding a knowledgable cardiologist - where are you located?   Keep in mind until recently doctors did not have any therapies to offer if they did diagnose, so its just not on their radar for most docs. They treat the symptoms and not the underlying disease process. Here is a good info source and I'll be happy to answer questions for you and help you get your heart health back. 

https://arci.org/about-amyloidosis/ Sally- PNW Amyloidosis Support Group 206-819-3025

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Did you speak with Tamika specifically? Curious so I know what you are up against. This is not unusual unfortunately practitioners don't expect patients to know more than they do about their own health  so you need to persist... Find attached an AMYLOIDOSIS SYMPTOM CHECK LIST for you to check off your symptoms and send this via My Chart to your GP suggesting your concerns and ask them to help you arrange getting the necessary tests- assuming you tick off a number of the Symptoms on this list. You should also please ask for a different cardiologist for a fresh start given your symptoms have not resolved. Please let me know how things go. 

Hi Tim, Baylor has an amyloidosis clinic in their advancedheart failure clinic- Call the scheduler for the Amyloidosis Dept Tamika @ 214-820-6856.

Please let me know if you'd like additional resources. There are other Amyloidosis clinics in TX near you but since you are in Baylor please check with them about scheduling testing for ruling out cardiac amyloidosis. Hopefully they will be able to rule it out. Keep me posted. I care.

Greetings Tim,

I've attached the diagnosis flow chart for you to show a doctor and ask for tests to rule out cardiac amyloidosis. I can help you with  finding a knowledgable cardiologist - where are you located?   Keep in mind until recently doctors did not have any therapies to offer if they did diagnose, so its just not on their radar for most docs. They treat the symptoms and not the underlying disease process. Here is a good info source and I'll be happy to answer questions for you and help you get your heart health back. 

https://arci.org/about-amyloidosis/ Sally- PNW Amyloidosis Support Group 206-819-3025

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Did you speak with Tamika specifically? Curious so I know what you are up against. This is not unusual unfortunately practitioners don't expect patients to know more than they do about their own health  so you need to persist... Find attached an AMYLOIDOSIS SYMPTOM CHECK LIST for you to check off your symptoms and send this via My Chart to your GP suggesting your concerns and ask them to help you arrange getting the necessary tests- assuming you tick off a number of the Symptoms on this list. You should also please ask for a different cardiologist for a fresh start given your symptoms have not resolved. Please let me know how things go. 

Hi Tim, Baylor has an amyloidosis clinic in their advancedheart failure clinic- Call the scheduler for the Amyloidosis Dept Tamika @ 214-820-6856.

Please let me know if you'd like additional resources. There are other Amyloidosis clinics in TX near you but since you are in Baylor please check with them about scheduling testing for ruling out cardiac amyloidosis. Hopefully they will be able to rule it out. Keep me posted. I care.

Greetings Tim,

I've attached the diagnosis flow chart for you to show a doctor and ask for tests to rule out cardiac amyloidosis. I can help you with  finding a knowledgable cardiologist - where are you located?   Keep in mind until recently doctors did not have any therapies to offer if they did diagnose, so its just not on their radar for most docs. They treat the symptoms and not the underlying disease process. Here is a good info source and I'll be happy to answer questions for you and help you get your heart health back. 

https://arci.org/about-amyloidosis/ Sally- PNW Amyloidosis Support Group 206-819-3025

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Hey Tim, PCP- USE the Patient Portal- I suggest you send your list of symptoms - use the checklist I sent you - and ask for an ASAP referral. Please let them know cardiac amyloidosis is a medical emergency and should be triaged as such.  YOU should not need a PCP appt to get the referral. If they do require an visit take the first available appt with an ARNP - whatever to speed up getting the referral. USE THE PATIENT PORTAL to communicate your concerns and make it a LOUD CRY FOR SUPPORT. They can't ignore you when it comes to cardiac issues it should be given a priority to manage. Stay strong and keep pushing the water up the hill!  

Did you speak with Tamika specifically? Curious so I know what you are up against. This is not unusual unfortunately practitioners don't expect patients to know more than they do about their own health  so you need to persist... Find attached an AMYLOIDOSIS SYMPTOM CHECK LIST for you to check off your symptoms and send this via My Chart to your GP suggesting your concerns and ask them to help you arrange getting the necessary tests- assuming you tick off a number of the Symptoms on this list. You should also please ask for a different cardiologist for a fresh start given your symptoms have not resolved. Please let me know how things go. 

Hi Tim, Baylor has an amyloidosis clinic in their advancedheart failure clinic- Call the scheduler for the Amyloidosis Dept Tamika @ 214-820-6856.

Please let me know if you'd like additional resources. There are other Amyloidosis clinics in TX near you but since you are in Baylor please check with them about scheduling testing for ruling out cardiac amyloidosis. Hopefully they will be able to rule it out. Keep me posted. I care.

Greetings Tim,

I've attached the diagnosis flow chart for you to show a doctor and ask for tests to rule out cardiac amyloidosis. I can help you with  finding a knowledgable cardiologist - where are you located?   Keep in mind until recently doctors did not have any therapies to offer if they did diagnose, so its just not on their radar for most docs. They treat the symptoms and not the underlying disease process. Here is a good info source and I'll be happy to answer questions for you and help you get your heart health back. 

https://arci.org/about-amyloidosis/ Sally- PNW Amyloidosis Support Group 206-819-3025

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.

Hey Tim, PCP- USE the Patient Portal- I suggest you send your list of symptoms - use the checklist I sent you - and ask for an ASAP referral. Please let them know cardiac amyloidosis is a medical emergency and should be triaged as such.  YOU should not need a PCP appt to get the referral. If they do require an visit take the first available appt with an ARNP - whatever to speed up getting the referral. USE THE PATIENT PORTAL to communicate your concerns and make it a LOUD CRY FOR SUPPORT. They can't ignore you when it comes to cardiac issues it should be given a priority to manage. Stay strong and keep pushing the water up the hill!  

Did you speak with Tamika specifically? Curious so I know what you are up against. This is not unusual unfortunately practitioners don't expect patients to know more than they do about their own health  so you need to persist... Find attached an AMYLOIDOSIS SYMPTOM CHECK LIST for you to check off your symptoms and send this via My Chart to your GP suggesting your concerns and ask them to help you arrange getting the necessary tests- assuming you tick off a number of the Symptoms on this list. You should also please ask for a different cardiologist for a fresh start given your symptoms have not resolved. Please let me know how things go. 

Hi Tim, Baylor has an amyloidosis clinic in their advancedheart failure clinic- Call the scheduler for the Amyloidosis Dept Tamika @ 214-820-6856.

Please let me know if you'd like additional resources. There are other Amyloidosis clinics in TX near you but since you are in Baylor please check with them about scheduling testing for ruling out cardiac amyloidosis. Hopefully they will be able to rule it out. Keep me posted. I care.

Greetings Tim,

I've attached the diagnosis flow chart for you to show a doctor and ask for tests to rule out cardiac amyloidosis. I can help you with  finding a knowledgable cardiologist - where are you located?   Keep in mind until recently doctors did not have any therapies to offer if they did diagnose, so its just not on their radar for most docs. They treat the symptoms and not the underlying disease process. Here is a good info source and I'll be happy to answer questions for you and help you get your heart health back. 

https://arci.org/about-amyloidosis/ Sally- PNW Amyloidosis Support Group 206-819-3025

Greetings Folks,

If you thought the TAVR procedure would be the finish line. A new valve, a new lease on life but you're still struggling to catch your breath  and feeling worn out. It's not because your TAVR failed. It might be because it uncovered a second, hidden condition. I would  like to introduce you to Cardiac Amyloidosis-a condition where sticky, abnormal proteins build up in your heart muscle, making it stiff and preventing it from pumping properly.

It's surprisingly common in TAVR patients (up to 16%), and its sympt

oms-fatigue, shortness of breath, and leg swelling-are the exact same as what you felt before your procedure. It hides, making it easy to miss.

Here's the game-changing info:

1. A New Class of Medication: For the first time, we have highly effective treatments that can target this protein and stop the disease from progressing.
2. It's Not Just "Getting Older": If you are still feeling the same symptoms months after your TAVR, it's time to find out why.
3. Your TAVR was Step 1: It fixed the plumbing. If you have amyloidosis, you need Step 2 to fix the muscle.

Don't wait for your symptoms to get worse. Start a conversation with your cardiologist that could change your entire recovery journey.