1. < Heart & Blood Health

Complicated Situation Guidance

Posted by zichichvj @zichichvj, Oct 16, 2017

Hodgkins Disease and the radiation I received from that back in 1974 has caused several heart issues now that I'm in my mid-60's. I've had (2) Stents implanted, (1) aortic valve TAVR, and now. less that 1 year post stent implant, the last stent, done 8 months ago is blocked; a stent which I never felt got to the root of the issue. My heart appears to have built a bi-pass, however, I am having trouble with severe shortness of breath. In addition, I understand I have a Mitrol valve that does not completely open/close and some electrical issues in the left bundle branch. I need a Doctor, not predisposed to surgery or an other method, to help develop a Plan. I have had every cardiac test know done in the last 3 years, don't wish to repeat them, avoid radiation like the plague, and want to know the alternatives and risks to each approach. Since I live in CT, I want a Generalized, yet Changeable Plan prior to any long distance travel. Can someone at the Mayo Clinic help... They should be well-versed in radiology-induced heart and lung issues, coupled with the latest procedures in coronary artery, valve and electrical abnormalities. I am looking to either the Mayo Clinic, Cleveland Clinic or NY Presbyterian to get the comprehensive evaluation I seek. Where do I go from here...

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 16, 2017

Welcome to Connect, @zichichvj.
I moved your message to the Heart Health group so that you can meet others talking about similar heart complications such as yours. In fact, back in 2013 @osprey650 wrote a very similar message to yours. I hope s/he will return to share with you. I'm also tagging @hopeful33250 and @predictable who both have experience with cancer and heart problems, albeit not Hodgkin's disease.

Zichichvj, you can contact Mayo Clinic at one of our 3 campuses in AZ, FL or MN. Here is the contact information http://mayocl.in/1mtmR63 Our experts can review your medical history and test results, and provide an evaluation prior to traveling. @cynaburst @lynnkay1956 @PatMattos @ronaldpetrovich and @vdouglas may be able to provide more insight about evaluation of your medical records before traveling to Mayo, as well as Mayo's multi-disciplinary approach.

REPLY
Von, Alumni Mentor | @vdouglas | Oct 16, 2017

Hello @zichichvj, I would like to welcome you to Mayo Clinic Connect along with @colleenyoung. I can certainly agree with you about not wanting to repeat test or to be exposed to additional unnecessary radiation and I understand the road that you have ahead of you to get your health taken care of. It looks hard and long but goes very quickly when looking back at it. I do not share all of the same issues you have described but some similarities. I have been to the Rochester Mayo Clinic. I was diagnosed with a rare disease that no other doctors were familiar with. I traveled from Las Vegas, Nevada to Rochester Mn Mayo Clinic because I wanted the best care possible without undergoing all of the unnecessary and repeated tests my local doctors were performing and recommending.

You asked where do you go from here? The first step is to go to the site that @colleenyoung suggested, http://mayocl.in/1mtmR63 , click on "Make an appointment" and just fill out the information. If you would like to just go to the site and look around. There are no commitments until they accept you and are reviewing your history and previous test results. I went to the site a dozen or so times before I decided to just fill the information out and see what happens. I requested a specific doctor for a specific reason and and was praying for a specific outcome and that is exactly what I got.

"To avoid repeating test" you may need copy's of the test that you have already had done. I would imagine this would be required wherever you decide to go. I called all of the hospital radiology departments and requested copy's of my tests on Compact Disc and or Paper, then picked them up in person to avoid issues. I obtained copy's of all ER reports and Doctors reports. There was no charge for copy's of my tests. Once the Mayo Clinic staff has reviewed the information you fill out on the Make an Appointment page, they will call you and tell you their decision. The Clinic representative may then request specific copy's of your tests. Once they are reviewing your tests there may be some commitment and insurance obligation. On the, Make An Appointment page, put all of your concerns in writing to make sure everyone is on the same page. There are phone numbers at the same link to speak to a real person if you wish to do that in advance of filling anything out.

@zichichvj, I know you have more questions, but I just wanted to get the ball rolling. I would also invite others @osprey650 @hopeful33250 @predictable @PatMattos @ronaldpetrovich to share any information they can offer you regarding this. I hope this is not too much information at once. Feel free to come back and ask specific questions.
Best wishes that you receive guidance as to where you should go.
Von @vdouglas

REPLY
3 replies
zichichvj | @zichichvj | Oct 18, 2017
In reply to @vdouglas "Hello @zichichvj, I would like to welcome you to Mayo Clinic Connect along with @colleenyoung. I..." + (show)
@vdouglas

Hello @zichichvj, I would like to welcome you to Mayo Clinic Connect along with @colleenyoung. I can certainly agree with you about not wanting to repeat test or to be exposed to additional unnecessary radiation and I understand the road that you have ahead of you to get your health taken care of. It looks hard and long but goes very quickly when looking back at it. I do not share all of the same issues you have described but some similarities. I have been to the Rochester Mayo Clinic. I was diagnosed with a rare disease that no other doctors were familiar with. I traveled from Las Vegas, Nevada to Rochester Mn Mayo Clinic because I wanted the best care possible without undergoing all of the unnecessary and repeated tests my local doctors were performing and recommending.

You asked where do you go from here? The first step is to go to the site that @colleenyoung suggested, http://mayocl.in/1mtmR63 , click on "Make an appointment" and just fill out the information. If you would like to just go to the site and look around. There are no commitments until they accept you and are reviewing your history and previous test results. I went to the site a dozen or so times before I decided to just fill the information out and see what happens. I requested a specific doctor for a specific reason and and was praying for a specific outcome and that is exactly what I got.

"To avoid repeating test" you may need copy's of the test that you have already had done. I would imagine this would be required wherever you decide to go. I called all of the hospital radiology departments and requested copy's of my tests on Compact Disc and or Paper, then picked them up in person to avoid issues. I obtained copy's of all ER reports and Doctors reports. There was no charge for copy's of my tests. Once the Mayo Clinic staff has reviewed the information you fill out on the Make an Appointment page, they will call you and tell you their decision. The Clinic representative may then request specific copy's of your tests. Once they are reviewing your tests there may be some commitment and insurance obligation. On the, Make An Appointment page, put all of your concerns in writing to make sure everyone is on the same page. There are phone numbers at the same link to speak to a real person if you wish to do that in advance of filling anything out.

@zichichvj, I know you have more questions, but I just wanted to get the ball rolling. I would also invite others @osprey650 @hopeful33250 @predictable @PatMattos @ronaldpetrovich to share any information they can offer you regarding this. I hope this is not too much information at once. Feel free to come back and ask specific questions.
Best wishes that you receive guidance as to where you should go.
Von @vdouglas

Jump to this post

Thank you for you guidance in getting the ball-rolling - - I filled out the appt. form. Now, how do I locate the very best physcian or team of physcian's for this? I need someone who understands Radiation-induced heart/valve issues, an Interventional Cardiologist, and a Cardiac Surgeon that specializes in Minimally invasive valve and artery procedures? Today, doctors don't have the time to cloose-the-loop on basic physical exams, let alone a comprehensive evaluation/recommendation.

REPLY
Martin Jensen, Volunteer Mentor | @predictable | Oct 18, 2017

Like you, @zichichvj, I'm raking through my memory in search for possibilities of top medical professionals to study your situation. This approach is necessary, in my case, because complex situations and complicated evolution of problems -- such as you report -- are the stuff to which great medical institutions such as Mayo Clinic are drawn and most often successful. Also, I'm not a medical professional, just a well-treated past patient and current therapy-receiver whose advice should be taken with a grain of "maybe so."

@colleenyoung and @vdouglas have given you some excellent counsel on how to engage Mayo Clinic in opening the door to a treatment plan that will meet your needs and your hopes. I will keep an eye on your communications with Mayo Connect in my own hope of contributing something worthwhile.

FYI, my experience over the past 10 years includes bladder cancer, atrial fibrillation, hypertrophic cardiomyopathy, chronic kidney disease, and hypertension. So far so good, thanks to my medical team and a half-dozen medications; together they keep me intact and active at age 82.

Martin

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Oct 18, 2017
In reply to @vdouglas "Hello @zichichvj, I would like to welcome you to Mayo Clinic Connect along with @colleenyoung. I..." + (show)
@vdouglas

Hello @zichichvj, I would like to welcome you to Mayo Clinic Connect along with @colleenyoung. I can certainly agree with you about not wanting to repeat test or to be exposed to additional unnecessary radiation and I understand the road that you have ahead of you to get your health taken care of. It looks hard and long but goes very quickly when looking back at it. I do not share all of the same issues you have described but some similarities. I have been to the Rochester Mayo Clinic. I was diagnosed with a rare disease that no other doctors were familiar with. I traveled from Las Vegas, Nevada to Rochester Mn Mayo Clinic because I wanted the best care possible without undergoing all of the unnecessary and repeated tests my local doctors were performing and recommending.

You asked where do you go from here? The first step is to go to the site that @colleenyoung suggested, http://mayocl.in/1mtmR63 , click on "Make an appointment" and just fill out the information. If you would like to just go to the site and look around. There are no commitments until they accept you and are reviewing your history and previous test results. I went to the site a dozen or so times before I decided to just fill the information out and see what happens. I requested a specific doctor for a specific reason and and was praying for a specific outcome and that is exactly what I got.

"To avoid repeating test" you may need copy's of the test that you have already had done. I would imagine this would be required wherever you decide to go. I called all of the hospital radiology departments and requested copy's of my tests on Compact Disc and or Paper, then picked them up in person to avoid issues. I obtained copy's of all ER reports and Doctors reports. There was no charge for copy's of my tests. Once the Mayo Clinic staff has reviewed the information you fill out on the Make an Appointment page, they will call you and tell you their decision. The Clinic representative may then request specific copy's of your tests. Once they are reviewing your tests there may be some commitment and insurance obligation. On the, Make An Appointment page, put all of your concerns in writing to make sure everyone is on the same page. There are phone numbers at the same link to speak to a real person if you wish to do that in advance of filling anything out.

@zichichvj, I know you have more questions, but I just wanted to get the ball rolling. I would also invite others @osprey650 @hopeful33250 @predictable @PatMattos @ronaldpetrovich to share any information they can offer you regarding this. I hope this is not too much information at once. Feel free to come back and ask specific questions.
Best wishes that you receive guidance as to where you should go.
Von @vdouglas

Jump to this post

Hello @zichichvj,

More than 160 physicians make up the Department of Cardiovascular Medicine at Mayo Clinic's campus in Rochester, Minnesota, and care for approximately 60,000 patients annually in a highly integrated and cooperative group practice. Mayo Clinic doctors collaborate as team members. At Mayo Clinic, you don't get just one opinion, you get multiple opinions.

Given your symptoms and your conditions, you would derive the most benefit at Mayo Clinic's Heart Failure Clinic: http://www.mayoclinic.org/departments-centers/cardiovascular-medicine/overview/specialty-groups/heart-failure-clinic/overview

You will be able to consult with doctors on the latest advances relevant to your condition, the heart failure specialists will determine which part of your heart is responsible for the shortness of breath, and will refer you to the appropriate sub-specialist or be treated in the catheterization lab soon after. http://mayocl.in/2xOC7QI

After treatment, you'll have the option of continuing your care with a Mayo Clinic doctor, or you may return to your own doctor.

You may be referred by your primary doctor, or you may make an appointment without a referral. For more information about the Heart Failure Clinic at Mayo Clinic's campus in Minnesota, call the Department of Cardiovascular Medicine at 507-284-3994 from 8 a.m. to 5 p.m. Central time Monday through Friday or complete an online appointment request form.

I hope this helps, and I wish you all success.

REPLY
Von, Alumni Mentor | @vdouglas | Oct 18, 2017
In reply to @vdouglas "Hello @zichichvj, I would like to welcome you to Mayo Clinic Connect along with @colleenyoung. I..." + (show)
@vdouglas

Hello @zichichvj, I would like to welcome you to Mayo Clinic Connect along with @colleenyoung. I can certainly agree with you about not wanting to repeat test or to be exposed to additional unnecessary radiation and I understand the road that you have ahead of you to get your health taken care of. It looks hard and long but goes very quickly when looking back at it. I do not share all of the same issues you have described but some similarities. I have been to the Rochester Mayo Clinic. I was diagnosed with a rare disease that no other doctors were familiar with. I traveled from Las Vegas, Nevada to Rochester Mn Mayo Clinic because I wanted the best care possible without undergoing all of the unnecessary and repeated tests my local doctors were performing and recommending.

You asked where do you go from here? The first step is to go to the site that @colleenyoung suggested, http://mayocl.in/1mtmR63 , click on "Make an appointment" and just fill out the information. If you would like to just go to the site and look around. There are no commitments until they accept you and are reviewing your history and previous test results. I went to the site a dozen or so times before I decided to just fill the information out and see what happens. I requested a specific doctor for a specific reason and and was praying for a specific outcome and that is exactly what I got.

"To avoid repeating test" you may need copy's of the test that you have already had done. I would imagine this would be required wherever you decide to go. I called all of the hospital radiology departments and requested copy's of my tests on Compact Disc and or Paper, then picked them up in person to avoid issues. I obtained copy's of all ER reports and Doctors reports. There was no charge for copy's of my tests. Once the Mayo Clinic staff has reviewed the information you fill out on the Make an Appointment page, they will call you and tell you their decision. The Clinic representative may then request specific copy's of your tests. Once they are reviewing your tests there may be some commitment and insurance obligation. On the, Make An Appointment page, put all of your concerns in writing to make sure everyone is on the same page. There are phone numbers at the same link to speak to a real person if you wish to do that in advance of filling anything out.

@zichichvj, I know you have more questions, but I just wanted to get the ball rolling. I would also invite others @osprey650 @hopeful33250 @predictable @PatMattos @ronaldpetrovich to share any information they can offer you regarding this. I hope this is not too much information at once. Feel free to come back and ask specific questions.
Best wishes that you receive guidance as to where you should go.
Von @vdouglas

Jump to this post

Hello @zichichvj ,
I thought this might help as well, here are just a couple of Mayo Clinic's Interventional Dr. that came up on a GOOGLE search. You can also do a search with a query of "Interventional Cardiologist Mayo Clinic". Look them over and see what you think.
https://www.mayoclinic.org/biographies/rihal-charanjit-s-m-d/bio-20053956
http://www.mayoclinic.org/biographies/bresnahan-john-f-m-d/bio-20053192
http://www.mayoclinic.org/biographies/sandhu-gurpreet-s-m-d-ph-d/bio-20054631

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