Just CRT-D implanted people

categories

by Tracey_E - 2023-09-19 21:21:30

If there is enough interest, I can add a category. 

That would be awesome!

by R2D2 - 2023-09-19 21:25:57

I greatly appreciate you considering it. We shall see who all responds and if it is something worth doing. Since the CRT-D is larger and more complex in nature, it would definitely be interesting to hear what others are experiencing with theirs and maybe even help people to decide what to do in regards to getting one in the future. 

Thanks!

Janene

Just CRT

by Beni - 2023-09-19 21:54:00

Count  me in........

CRT-D

by Stacy P - 2023-09-19 22:50:37

Hi, I'm brand new to this, I recently had the CRT-D placed about 2 weeks ago. I think having it as a category would be great. I know only the little that I've been told about but would really love to talk with someone else that has this type of device and how it's working for them. 

Stacy-P

by R2D2 - 2023-09-19 23:02:35

Hi! I'm a CRT-D newbie too, I got mine July 17 and have been dealing with all kinds of new sensations and experiences. You can message me if you like. I was very scared, never having any surgery since my appendix in 1981. It went better than I imagined, but it's still a strange thing to say the least. Do you feel yours "pacing?" I wish I wasn't so aware of everything it does, it makes me a bit nervous and anxious. But it is getting better, I'm not so fixated on it like I was the first month. 

If you need to talk, I'm here. 

Janene

CRT-D

by Julros - 2023-09-20 00:14:40

I would be interested, too. I had a CRT-P originally, and upgraded to a CRT-D a year ago. Yes, I could feel the beats originally, and after some adjustments, the pulsations were gone. 

"Just" Cardiac Resynchronization Therapy/Defibrillator members?

by Gemita - 2023-09-20 02:37:07

Janene, I hope you are now getting help from other CRT-D members and that you do not feel so alone.

I suggest we could add CRT to the forum category ICD which already exists, since many CRT members will also have or require defibrillators and I think it would be helpful to have these two categories placed together? 

I also think we need a category for leadless pacemakers, although still in a minority, leadless Pacemaker Club members should be represented.  We are moving fast in this area and I note that doctors at my hospital have already implanted a CRT, (three leadless heart devices) in one patient.

Janene, we are currently working on some improvements for this site, like improving "frequently asked questions", so it is good to receive your suggestion.  With respect, though, I do not think it is ever helpful to say in posts this is “just” for CRT-D implanted people, since this would exclude a lot of potentially helpful comments from other members too who do not have CRT-D but who would like to comment or who might be interested in CRT-D.  All posts are open to ALL members and we need to encourage conversation not to discourage it.

It also has to be remembered that to have a successful discussion on CRT-D or on any other topic, will require members to visit the forum more frequently, to look for such messages, to respond to such posts and to post their own messages but this would take time and commitment.  Not sure how we can encourage this to happen?  Although members can already post on any subject, at any time, I have considered posting a  "dates for your diary of topics for discussion" but it would only work if sufficient members participated in these discussions

crt-d since May last year

by Martino - 2023-09-20 03:46:05

67 year old. CRT-d for me works great. The D was an extra as  actually needed the CRT part more. That works like a charm and even ejection fraction is back to normal with heart capacity  upto 90%. Cannot expect more according cardiologist. In the gym 5-6 days per week and working hard like back in the days, just more effort and less weight. Hahaha.

Drink and eat what I want, no diet other than plant based and protein heavy. But I won't let a good steak pass my plate.....

CRT

by Aberdeen - 2023-09-20 05:11:44

I have had a CRT-P for 2 years. I would be happy to join a discussion group and share my experience of the CRT-P.

CRTs

by Beni - 2023-09-20 06:47:33

The new category should include all CRT recipients- not just those of us who have the model with the defibrillator. There are, I suspect, certain common experiences  all CRT recipients share - defibrillator  or no defibrillator.   But don't  lump us  in with ICDs.   Biventricular pacing is a different kettle of fish from traditional pacing.  Having a defibrillator  is but one aspect of it.

When I am looking for info on CRTs specifically,  it it difficult, not to mention, time consuming to wade through the many posts pertaining to a variety of things.  People frequently under "general", because it is easier rather than under "coping" or "ICD".  I know I do.  And the "search" function can be less than optimal.

I cannot speak for R2D2 but it was not my impression that her intention was to exclude anyone.  Tracey_E's suggestion was excellent.  It would simplify things. What to know about CRTs?  Click on the category. Same for the new lead less models becoming more common.  I think greater ease of use, including more filters in the form of separate categories,  will encouage more "eyeballs on the page", which would be advantageous for all of us.

R2D2:

The "pacing" sensation you are experiencing to become far less noticeable after 3 or 4 months.  Mine did. It was very noticeable before that, especially when lying/leaning on my left side at night. I suspect it took time for the sites in my heart wall to heal around where leads ends were actually embedded.  Now, I occasionally notice it and, when I do, it is very faint.

It was just one of the many weird sensations in and around that area I experienced for the next several months.  But a year on, most have them have subsided.  I still get the odd twinge but that is about it.

Cardiac Resynchronization Therapy pacemakers

by Gemita - 2023-09-20 09:05:57

Beni, when the search facility proves ineffective and returns “no matches for your search”, you could try doing a search in your main general browser by typing in Pacemaker Club CRT-D (or other questions).  I can often get more responses that way than might be available under our Search button “Q”, but I agree, our search facility doesn’t always work well.

On the question of not wanting to place CRT members under the ICD members’ category, I do appreciate what you are saying.  However, this could potentially pose a much larger question; whether we should really be having separate categories for all pacemaker recipients and that would include:  single lead pacemaker, dual lead pacemaker, CRT pacemaker, Defibrillator, leadless pacemakers?  

The more we narrow down the categories, to include sub categories, the better of course to find specific answers, but it can become over complex sometimes, and I am not sure how much we can practically change on this site at the moment due to cost, time, resources.  

Any comments however are always welcome.  I personally try to keep records of members’ suggestions and am slowly working my way through them to make this forum a useful place to meet.  I am sure that if there is sufficient interest and there would certainly appear to be, Tracey_E  can get another category going on CRTs specifically and I would fully support this too.

Sounds good

by R2D2 - 2023-09-20 11:24:11

I agree with what everyone said, and certainly wouldn't want anyone to feel excluded. I think the CRT and ICD people could group together, although I admit I wasn't aware of the meaning of either until later. It's confusing, especially for newbies. Is there a place on this website that explains the differences between each device? (Just curious) 

I wish to acknowledge the wonderful people who run this website; it's very time consuming and difficult to please everyone all of the time. I greatly appreciate all of your efforts and will do my best to offer support to those who reach out with issues I may be able to help with. 😊 

a note...

by Tracey_E - 2023-09-20 13:27:04

I suspect a lot of people do what I do, go to Recent Messages rather than a subcategory. All categories showup under Recent Messages so it's not like it's a truly separate area. 

We are trying to add the new category. 

Something you may want to try that we used to do years ago is set up a time to meet in chat. At one time it was quite active. 

Thank you Janene

by Gemita - 2023-09-20 13:28:42

I am in the process of updating our FAQs.  If you go to the top of the home page and press Learn, then FAQs, then click on Club Information and you will get a drop down menu, go to:  the Pacemaker/Defibrillator and then press the red box CHOOSE CATEGORY, then scroll down to “What are the types of pacemakers” you will find some answers.  As you will see, this category really needs upgrading and I will make sure that a description for a CRT pacemaker is included here in the next day or so as well as giving a better description for an ICD.

Pacemakers are most often used when your heart beats too slowly. CRT pacemakers are used when we need to synchronise the left and right ventricle to help the chambers to contract at the same time.  This can be extremely helpful for heart failure patients.  ICDs are mainly used if we are at risk for fatal ventricular arrhythmias.  Most new ICDs can act as both a pacemaker and a defibrillator.   I will make sure all categories are updated.