Welcome researcher09 (Rei)

2017 Forum topics and posts

Moderators: Suzanne, ~guin, Moderators

Post Reply
User avatar
freckles1880
Moderator
Posts: 8664
Joined: April 18th, 2009, 7:19 pm
Location: Broomfield, Colorado

Welcome researcher09 (Rei)

Post by freckles1880 » April 8th, 2016, 7:28 am

researcher09 wrote:My name is Rei and I am here for my father in law. He is in heart failure right now after 2 recent heart attacks and I am helping him research his options after he asked about the possibility of a heart transplant. I have looked in many places and there is a lack of patient centered support groups like those available for more common conditions such as AF. My father in law has AF too and that is complicating things for him right now. I am very familiar with AF too for that reason and belong to the lone AF forum as well. Anyway, I am here to research choices, mainly ablation and want to see what others have experienced. I will be happy to share my research on the topic. I am a retired research scientist that continues researching.
howdywelcome and we are glad you are trying to help your father in law. As you know there is so many things that can go wrong with our hearts and some can be assisted with ICD's or pacemakers. We do have several members who have had ablations, mostly successful and many times it takes more than one try to get all of the areas necessary. At the top of the page is a "search" function and you can search our posts and see what others have said. We have also had a couple of members get a heart transplant.
Thanks for joining.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

User avatar
mrag
Posts: 4382
Joined: February 10th, 2009, 4:56 pm
Location: The Former Mushroom Capital of World when America was great

Re: Welcome researcher09 (Rei)

Post by mrag » April 8th, 2016, 11:05 am

Hi Rei, welcome. How old is your father in law, where do you live (nearest big city) and time and severity of the "recent heart attacks?" If you want to catch up a little on transplants, you might want to read the following recent thread:
http://www.icdsupportgroup.org/board/vi ... 24&t=14472
Transplants are apparently not for everyone and over a certain age, well over a certain age can be a problem. I can only speak of ventricular ablations-highly recommended if done by the right EP. I have non symptomatic AF and my doctors who normally love catheters have no interest in discussing ablating there. What does his current cardiologist say?
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

User avatar
David882
Posts: 882
Joined: July 12th, 2014, 8:58 pm
Location: 49 06' 42.42" N 113 49' 52.52" W

Re: Welcome researcher09 (Rei)

Post by David882 » April 9th, 2016, 9:13 am

http://my.clevelandclinic.org/ccf/media ... Insert.pdf
https://en.wikipedia.org/wiki/Caldwell_Esselstyn

The above links provide info about a Cleveland Clinic Doctor, by the named of Caldwell Esselstyn; he treated a group of heart patents using a vegetarian diet/exercise. These patients were not in the best of heart health. It was a small study, less than 25 patents as I recall, the group by and large did well. However, one has to be careful of drawing any conclusions from such a tiny study. Dr. Esselstyn work was based on some prior research that indicated the vega diet may be of benefit to heart. For example Dr, Esselstyn may have filtered the group membership in some way so as to bias the outcome.

I provide this information to make note of a few things;

1] There are a ton of small studies that prove just about anything one may care to believe.
2] Small studies rarely have universal applicability and the results have to be understood with care.
3] Fear of our own mortality can drive us to embrace a lot of stuff, which does not cure the problem but does transfer wealth from our pocket to others. The snake-oil trade is not new but the basic methods have not changed. I watched a relative pour everything she had into herbal products that were going to help her. Sadly, her life expediency was about what the doctors had predicted based on the incurable and rare cancer that she had. She went to 3 different doctors (1 in the USA, 1 in California, and 1 in Canada) who all came to the same conclusion.
4] I suggest that you do exactly what you are doing, that is the research. Find a hospital/clinic/doctor that is an expert in the given condition/illness that you can travel to and go there for a second opinion. Take your research with you. Take a notebook and write down what you are told. Write down your questions and make sure you get answers you understand. If the Dr uses big words, just tell them I don't understand. Let the Dr. explain/answer so you understand.
5] As for Dr. Esselstyn's research and published diet book I am not aware of any large studies and published results. Perhaps someone here has such evidence?

PS:
this is only my view and worth about what you have paid to access this message board.
With Respect,
David

11 Sept 2012 / Idiopathic Ventricular Fibrillation
At about 2AM I started storming at home, and in the ambulance, and in the ER.
Sometimes I restated and sometimes I had to be defibrillated.
A number of times I went into arrest and stopped breathing.
External defibrillation count exceeded 18 and at some point the team induced a coma.
24 hours later I was revived and have never had another event.
13 Sept 2012 / Medtronic ICD was implanted.
My diagnosis is still idiopathic.

researcher09
Posts: 62
Joined: April 7th, 2016, 11:38 am

Re: Welcome researcher09 (Rei)

Post by researcher09 » April 9th, 2016, 11:21 am

Thanks everyone for the warm welcome. FIL is WWII veteran that lives in the SF bay area, tough as nails until the recent setbacks. Prior to his first MI, he was still digging tree roots and repairing his own driveway and masonry. Things went downhill quickly after he tripped in his beautiful garden and he suffered his MI crawling back to his garage. Second MI happened during recovery period a month or so after. He had stents put in after the first MI but because of AF medication, he could not do standard post-stenting drug therapy to prevent clogging. Heart transplant is probably inappropriate given his age and condition. ICD is questionable until he is regains enough physical strength and also the complication risks assiciated with implant and shocks. Ablation maybe beneficial if it can prevent VT reduce the risk of VF/SCD. His mind is sharp and he is having rational thoughts/debate of living (asking about heart transplant) vs not. I would like to start a topic on ablation resources and pros and cons. I will go ahead and do that now.

InSync
Moderator
Posts: 996
Joined: July 21st, 2012, 10:26 pm
Location: The Edge of America, SC

Re: Welcome researcher09 (Rei)

Post by InSync » April 12th, 2016, 7:08 am

Welcome. I'm sorry your FIL is having a rough time. Ablation isn't appropriate for all VT or VF. Has his doc suggested ablation?
What is it about his condition that makes the ICD implantation questionable? The surgery is minimally invasive except that the leads enter the vein, the anesthesia time is minimal, and the recovery is very easy. Lot of folks have the ICD implanted during open heart surgery or shortly after. Best of luck to you guys!
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

User avatar
David882
Posts: 882
Joined: July 12th, 2014, 8:58 pm
Location: 49 06' 42.42" N 113 49' 52.52" W

Re: Welcome researcher09 (Rei)

Post by David882 » April 13th, 2016, 6:52 pm

Insync:

Very nice to c u.
With Respect,
David

11 Sept 2012 / Idiopathic Ventricular Fibrillation
At about 2AM I started storming at home, and in the ambulance, and in the ER.
Sometimes I restated and sometimes I had to be defibrillated.
A number of times I went into arrest and stopped breathing.
External defibrillation count exceeded 18 and at some point the team induced a coma.
24 hours later I was revived and have never had another event.
13 Sept 2012 / Medtronic ICD was implanted.
My diagnosis is still idiopathic.

InSync
Moderator
Posts: 996
Joined: July 21st, 2012, 10:26 pm
Location: The Edge of America, SC

Re: Welcome researcher09 (Rei)

Post by InSync » April 14th, 2016, 6:17 pm

Hi David.
Nice to c u 2.
This post seems to have been continued in another post. I'm glad you checked in here.
Hope all is well in your world.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

morrissm00
Posts: 9
Joined: February 23rd, 2016, 1:27 pm
Location: Virginia Beach

Re: Welcome researcher09 (Rei)

Post by morrissm00 » April 27th, 2016, 2:42 pm

Hi Rei,
Are you also on Medhelp? The same username is used there. I posted a question in January before I got my ICD on MEDhelp and the answers from reserarcher09 were very helpful.

Welcome to the group.
Diagnosed with Left VT and RVOT
ICD: Feb 4, 2016

Theme song: "The Rhythm is Gonna Get You"

researcher09
Posts: 62
Joined: April 7th, 2016, 11:38 am

Re: Welcome researcher09 (Rei)

Post by researcher09 » April 27th, 2016, 3:15 pm

Yes. Glad I was able to be helpful. I started there by letting people know that there is an AF forum popular with athletes (Lone AF) and not knowing much about VT. Now my FIL is a VT customer too unfortunately. He was formerly only an AF customer. A lot more difficult to task to research VT ablation (relatively new) compared to ICDs. I find myself preoccupied with FIL condition and don't have much time to help out AF folks at medhelp currently. Hope you are doing well with ICD. I listed some VT ablation trial sites on the other thread. Hope you can find one close to you in case you need to be ablated in the future.

Post Reply