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jhoffmanj
@jhoffmanj

Posts: 24
Joined: Apr 27, 2016

Cardiac Amyloidosis

Posted by @jhoffmanj, Nov 4, 2017

On November 1 had nuclear scan of heart to determine if protein transthyretin present in my heart. Presence of this protein causes heart to become thicker and ultimately weaker. Condition called amyloidosis. Symptoms include fatigue, shortness of breath, abdominal and leg swelling etc. Treatment is what I am undergoing now. Diuretics, blood thinner and treatment for heart arrhythmia. I am also on Entresto which has been helpful. Any others out there with amyloidosis?

REPLY

There are some great videos by cardiologists at Mayo that explain cardiac amyloidosis.

i WONDER why no one has responded to my message re cardiac amyloidosis. It is a genetic disease and it appears is the culprit for my thick and rigid heart which has led to my heart failure. Am I not coming across on the forum?

Hi Jim,
I’m not sure why no one has responded to your discussion about cardiac amyloidosis. Let me see if I can help by tagging a few members that I know would be interested in joining you to talk about this diagnosis. @oldkarl will most certainly jump and join you in this discussion.

Like you, Karl also appreciates the videos presented by Mayo expert, Dr. Martha Grogan. Here are a couple for others reading this:
* Cardiac Amyloidosis – What is Amyloid and How Does it Affect the Heart https://www.mayoclinic.org/diseases-conditions/amyloidosis/multimedia/what-is-cardiac-amyloidosis-video/vid-20112205

* Cardiac Amyloidosis – Treatment Options https://www.mayoclinic.org/diseases-conditions/amyloidosis/multimedia/cardiac-amyloidosis-treatment-video/vid-20112207

Most of the discussions about amyloidosis can be found in the Blood Cancers & Disorders group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/, including this webinar presented by Dr. Grogan.
* Video Q&A about Amyloidosis – What Patients Need to Know https://connect.mayoclinic.org/webinar/amyloidosis-what-patients-need-to-know/

Jim, I read in another discussion that you were once a marathon runner. What level of physical activity are you able to do now?

@colleenyoung

Hi Jim,
I’m not sure why no one has responded to your discussion about cardiac amyloidosis. Let me see if I can help by tagging a few members that I know would be interested in joining you to talk about this diagnosis. @oldkarl will most certainly jump and join you in this discussion.

Like you, Karl also appreciates the videos presented by Mayo expert, Dr. Martha Grogan. Here are a couple for others reading this:
* Cardiac Amyloidosis – What is Amyloid and How Does it Affect the Heart https://www.mayoclinic.org/diseases-conditions/amyloidosis/multimedia/what-is-cardiac-amyloidosis-video/vid-20112205

* Cardiac Amyloidosis – Treatment Options https://www.mayoclinic.org/diseases-conditions/amyloidosis/multimedia/cardiac-amyloidosis-treatment-video/vid-20112207

Most of the discussions about amyloidosis can be found in the Blood Cancers & Disorders group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/, including this webinar presented by Dr. Grogan.
* Video Q&A about Amyloidosis – What Patients Need to Know https://connect.mayoclinic.org/webinar/amyloidosis-what-patients-need-to-know/

Jim, I read in another discussion that you were once a marathon runner. What level of physical activity are you able to do now?

Jump to this post

@jhoffmanj HOHOHO! I knew somebody read my long-winded stuff! And thank you Colleen, for noticing about Cardiac Amyloidosis. And, Jim, I do have a lot to talk about. First, Working through a diagnosis with any sort of Amy is fierce. The chances of finding a doctor who can spell the word are very slim, and improved only slightly by going to Mayo or Stanford etc. But the symptoms of cardi-Amy are pretty straight if you find some good techs .First, a good 12-lead EKG tech will pickup on the QRS (pumping and resting signals) given off by the ventricles. The Amy fibrils get into the heart muscles, leatherizing them, making it difficult to squeeze and relax. So they jerk and jump a lot while they work. And because the fibrils also get into the brain-cardiac sensory-motor nerves, the voltage is very low. That makes the jerking and jumping of the QRS so tiny and faint that it almost looks like a straight line. With mine, One has to use a magnifying glass to pick up on the sawtooth line. There are other good symptoms, of course. The EF usually runs pretty good at around 60%, but mine was running about 40% for a time. Then My blood pressure dropped, and the doctor thought I was healed. In truth, my disorder had simply progressed to the next stage because the heart could not beat hard enough to get a full load of blood to pump, relax to refill, and pump again. The sudden death comes when the fibrils in the nerves interrupt the beat/relax signal so much the brain can not tell the heart to pump or relax. Anyway, sorry I didn’t see your first note. Must have been all that pumpkin pie for Thanksgiving, I suppose. Have a great weekend. Karl

Thanks very much for your observations. It helped me understand a bit more of my issue.

@colleenyoung

Hi Jim,
I’m not sure why no one has responded to your discussion about cardiac amyloidosis. Let me see if I can help by tagging a few members that I know would be interested in joining you to talk about this diagnosis. @oldkarl will most certainly jump and join you in this discussion.

Like you, Karl also appreciates the videos presented by Mayo expert, Dr. Martha Grogan. Here are a couple for others reading this:
* Cardiac Amyloidosis – What is Amyloid and How Does it Affect the Heart https://www.mayoclinic.org/diseases-conditions/amyloidosis/multimedia/what-is-cardiac-amyloidosis-video/vid-20112205

* Cardiac Amyloidosis – Treatment Options https://www.mayoclinic.org/diseases-conditions/amyloidosis/multimedia/cardiac-amyloidosis-treatment-video/vid-20112207

Most of the discussions about amyloidosis can be found in the Blood Cancers & Disorders group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/, including this webinar presented by Dr. Grogan.
* Video Q&A about Amyloidosis – What Patients Need to Know https://connect.mayoclinic.org/webinar/amyloidosis-what-patients-need-to-know/

Jim, I read in another discussion that you were once a marathon runner. What level of physical activity are you able to do now?

Jump to this post

Colleen, thanks for your info. You are right. I once was very active physically. I now go to our local YMCA and use the bikes. I can pretty easily do a half hour at moderate resistance. I am a little unsteady on my feet so I have not done as much walking as I would like.

@colleenyoung

Hi Jim,
I’m not sure why no one has responded to your discussion about cardiac amyloidosis. Let me see if I can help by tagging a few members that I know would be interested in joining you to talk about this diagnosis. @oldkarl will most certainly jump and join you in this discussion.

Like you, Karl also appreciates the videos presented by Mayo expert, Dr. Martha Grogan. Here are a couple for others reading this:
* Cardiac Amyloidosis – What is Amyloid and How Does it Affect the Heart https://www.mayoclinic.org/diseases-conditions/amyloidosis/multimedia/what-is-cardiac-amyloidosis-video/vid-20112205

* Cardiac Amyloidosis – Treatment Options https://www.mayoclinic.org/diseases-conditions/amyloidosis/multimedia/cardiac-amyloidosis-treatment-video/vid-20112207

Most of the discussions about amyloidosis can be found in the Blood Cancers & Disorders group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/, including this webinar presented by Dr. Grogan.
* Video Q&A about Amyloidosis – What Patients Need to Know https://connect.mayoclinic.org/webinar/amyloidosis-what-patients-need-to-know/

Jim, I read in another discussion that you were once a marathon runner. What level of physical activity are you able to do now?

Jump to this post

Same here my friend Jim. It is a scary time and I did not get any support here. I am backing out of this group and let others know this was not a good experience for me at all.

@colleenyoung

Hi Jim,
I’m not sure why no one has responded to your discussion about cardiac amyloidosis. Let me see if I can help by tagging a few members that I know would be interested in joining you to talk about this diagnosis. @oldkarl will most certainly jump and join you in this discussion.

Like you, Karl also appreciates the videos presented by Mayo expert, Dr. Martha Grogan. Here are a couple for others reading this:
* Cardiac Amyloidosis – What is Amyloid and How Does it Affect the Heart https://www.mayoclinic.org/diseases-conditions/amyloidosis/multimedia/what-is-cardiac-amyloidosis-video/vid-20112205

* Cardiac Amyloidosis – Treatment Options https://www.mayoclinic.org/diseases-conditions/amyloidosis/multimedia/cardiac-amyloidosis-treatment-video/vid-20112207

Most of the discussions about amyloidosis can be found in the Blood Cancers & Disorders group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/, including this webinar presented by Dr. Grogan.
* Video Q&A about Amyloidosis – What Patients Need to Know https://connect.mayoclinic.org/webinar/amyloidosis-what-patients-need-to-know/

Jim, I read in another discussion that you were once a marathon runner. What level of physical activity are you able to do now?

Jump to this post

@mehlisue Sorry you feel you did not get any support here. I respond to every note I see about these matters. But I do have other things I have to do, sometimes just to stay alive. And I have family, community, church, world-wide friends to pay attention to. That is part of the reason I put my 48-page letter on Dropbox at https://bit.Ly/1w7j4j8 for anyone to download and read. I figure I put everything in there that will be helpful to anyone. In fact, though, that exercise of writing “Amyloidosis” has been most helpful to me. So I think every person should write their own, and if you wish, you can model it after my own. So I miss a day or two sometimes, and some notes go unanswered. Unfortunately, your letters escaped my attention. The note you sent two hours ago is the first time I have seen your name on here. Of course, in the meantime I have made a trip to Nashville, had a family reunion, written about twenty more pages in “Amyloidosis”, been to Church several times, ten visits to doctors, shopping on line for medicines, and fought neuropathy and diabetes and psoriatic and rheumatoid arthritis, and lost a good part of my vision, all in the last 22 days since you joined. I prepare two of my own meals every day, do all of my own home testing, including 4xDaily Glucose, blood pressure, 02 and pulse, hematuria, proteinuria, simple cardiac-amyloid EKG. Broken my pinky toe by putting on my compression stocking. And been to clinics for X-rays, blood testing. Now, again, I offer you the best help I can give, at https://bit.Ly/1w7j4j8 And I have tried to keep up with other lines on Mayo Connect in case I can help someone. And I have 4 children, 10 grandchildren, 16 great grandchildren, 7 siblings and dozens of cousins. All of my children, my siblings and most of their children are showing signs of various forms of Amyloidosis of some kind, probably AL and/or hATTR, ACys, AGel, or Evans Syndrome, MM, Crohn’s, or Lupus. One sister died a few years ago, her daughter died of sudden Cardian Amyloid death. Now, Cry if you want for lack of sympathy, but do take advantage of my story at https://bit.Ly/1w7j4j8.

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