Who is sorry they got the CRT-D?

Are you sure that's the right question?

by Grateful Heart - 2017-05-23 19:36:41

From your post, it sounds like your doctors of over 20 years did you wrong.....not the CRT-D.

I can hear (see) the frustration in your writing.  Maybe now you will get proper care.  I don't know how long you have had your device but there are so many settings and parameters within these devices.....don't give up hope yet.

 Maybe now that you are off of the Maxide you will see some improvement. 

From the limited amount of info you posted.....I don't see how the CRT-D is to blame.  Maybe I am missing something.  

Grateful Heart

Who is sorry they got the CRT-D?

by lindajeschke@hotmail.com - 2017-05-24 12:58:24

I don't have a CRT-D ... I'm trying to find out ALL the terrible things that will happen with one since doctors don't tell full truth.   They only want to keep you alive (no quality of life) for their records.

This forum has huge postings of all the problems out there.  I spent most of yesterday reading about all the terrible things that happen.  

That is why I'm asking ... who wishes they never started down this road.   Please be honest because I'm thinking there are a lot of you out there who wish you could go back and say "No, thank you."

I HAVE A CRT-D

by BOBJ - 2017-05-24 14:35:08

I love mine. 

Which door is the tiger behind?

by Gotrhythm - 2017-05-24 15:21:14

A 66% success rate means a 34% failure rate. Great if you're in the 66%. Tough, if you're in the 34%. It's like the Lady and the Tiger story, but in this case there are 3 doors.

So I think it's good you are researching the downside of CRT-D. Only you can decide what benefits are desirable enough to justify taking a chance that the CRT-D might not work for you, or could make you worse.

Like you, I have found that MDs are not open to discussion of quality of life issues when talking about treatment options except when the odds of success are very low. As long a a treatment has good chance, doctors are going to err on the side of treatment that will prolong life, even when treatment might add to a patient's problems.

I don't blame them. If I were a doctor, I'd probably think the same way. But as a patient, and the one who will have to live with the consequences (good or bad) of any treatment I agree to, I find doctor's limited view frustrating.

While you are researching, you might want to look into BHP, Bundle-of-His Pacing. For some it is an alternative to CRT-D.

Good luck making a decision that will yeild you the quality of life you are hoping for.

Thanks

by lindajeschke@hotmail.com - 2017-05-24 16:13:57

You seem to be the only one who understands my concerns!  It's all about "quality of life" both now and after.

I'll look at the Bundle-of-His and see what I can learn ... this is something I've read VERY little about.

Do you have a CRT-D?  Experience with someone who does?  Good/Bad?

I FEEL I SHOULD ELABORATE

by BOBJ - 2017-05-24 16:43:21

Long story short.

I found out that I was in stage 3 chf. Docotors were telling me to make no long term plans. The first attempt at implant was a night mare, but in the short time I had it, there was a major difference.

Had to have that one removed. I went through a lot to get reimplanted. My next implant is the one I have now. I have had it since 2-27-17. Not quite 3 months. I went from not being able to walk 30 yards to yesterday I swam the length of an olympic sized pool UNDERWATER! I am improving everyday.

So I was missing something :)

by Grateful Heart - 2017-05-24 16:53:55

None of us wanted a device but....

Most people find this site after having problems or concerns with their devices, hence the complaints and frustrations.  I found this site about 18 months after my implant when I had a lead revision problem. 

There are a little more than 30,000 members on this site now.  While that may sound like a lot, it is a very small number when compared to the actual number of people pacing all over the world....estimated at 3 to 4 million.   

I also have LBBB, SSS and my EF was 24%.  After my CRT-D my EF increased to 50% and last Echo was 55%.  The outcome is not always that positive for some, as you have already mentioned, but what are the alternatives?   I've been paced for 8 1/2 years.  It can take a few tries to get the settings right for each individual but I know I wouldn't be here without mine.  I go to the gym at least 3X a week, yoga 2X and I am excited about starting a Pilates class soon.  I am more active now than in the past 20 years, thanks to my CRT-D and doctors.

Attitude is very important in recovery.             

BTW, CRT's can be very effective for patients with LBBB.  

Feel free to question more or private message me if you like.

Grateful Heart      

Thinking it over

by Gotrhythm - 2017-05-25 12:02:09

The reason I could "hear" you is that I am asking some of the same questions. No, I don't have a CRT-D. I have a pacemaker that's no longer adequate to the job, and which could be causing problems at this point. Unfortunalely, because of pecularities of my heart, a CRT-D won't work for me.

I learned about BHP here. I'm going to Duke in a couple of weeks to learn more. But I'm clear that I'm only interested in improvement of my quality of life. The promise of living more years but with no improvement over my present level of function holds no attraction for me.

I understand your frustration that it's so hard to find an MD who will help weigh the pros and cons. 

To answer the other part of your question. My brother-in-law had a CRT. It made a huge positive difference for him, and gave him no problems that I know of.

Thank you, again

by lindajeschke@hotmail.com - 2017-05-25 12:04:01

I now feel I am getting a more complete picture.  Quality (of what I have left) Life  is much more important than extending a painful life.

I've had constant pain from two biopsies (breast; 10 yrs) and lymph node removal (24 yrs ago that sent me into full blast Lupus).

I've read over all my medical notes from various doctors (kept only since 2008) and was never told I had Heart Failure ... just "some type of Cardiomyopathy" (Cleveland Heart Clinic) and needed an angiogram (which I have refused every step of way for the above reasons).  Imagine my shock last month when I was ordered to Heart Failure Clinic and will most likely never see my cardiologist, again, since she handles ALL types of heart problems and the clinic ONLY focuses on HF.

I've taken any med. that didn't make me horribly worse (several different beta-blockers  actually caused an arrythmia I never had before .... lasted 15 years until I went gluten-free and mysteriously disappeared/cardiologist was shocked but happy for me since it was her idea to be GF).

I would love to talk to "Grateful Heart" privately ... but just getting to this area is a real challenge.

BobJ ... what happened to you sounds just horrible!  Glad you are now doing so much better and are happy with your CRT.

  I've had very poor outcomes for over 24 years and live precariously with Lupus hoping I don't send myself into a flare ... that can take me out for 6 months!   I just want peace without pain.

Thanks, Got Rhythm

by lindajeschke@hotmail.com - 2017-05-25 12:14:39

 Sorry about the pacemaker.  Sounds like you will try something VERY new.  I only found info on how "His" works not much about helping.

Amen

by The real Patch - 2017-05-25 17:05:53

After 10 years with ICD's we discovered I developed LBBB to go along with the many other features I enjoy. We all thought that it would forestall the inevitable which is sneaking up faster and faster. Like you I'm interested in quality, not quantity.

Device was implanted and worked great, felt better and more energy instantly. Went in for a follow-up at the 10 day post implant point and things went downhill fast. When I walked away from my appointment I knew something was different. Old hand at interrogations and figured it was due to racing my pacing that made me a bit uncomfortable.

Au contrare, my third lead was giving me the third finger so to speak. It moved north for the summer, in fact into another zip code and was trying to pace my atrium. So back to the cutting board for a lead revision.

After recovery, it was never right, I never enjoyed the benefits I felt initially. Ah they discovered I was enjoying pacemaker induced tachycardia. Adjustment with a pipewrench and off I go to live life.

...hold on there Jack, is it normal for the shoulder to swell and tear the skin open at the incision? The heat eminating from my incision was adequate to cook an egg, well I may be exaggerating just a bit there, but not much I assure you.

Ring my Electrophysiologist only to be told he was busy, go to the ER. Off we go for another adventure in the American medical system. When they finally got around to listening to what I had to say, they realized I probably had developed an infection in the incision site. Yah think?

By now I have a raging fever and my chest looks like I'm possessed with a second head trying to squeeze out. Make a short story even longer, after the doctor jerked me around for a week, he was coerced into extracting all of my shiny new hardware, including the two old leads. After another week incarcerated, they kicked me free with a massive vacuum pump (the size and weight of a womans shoulder bag) An infusion pump injecting drugs directly into my beleagured heart, and a life vest.

I got to juggle all this new bling for 4.5 months while the massive hole in my chest healed and the infection retracted. Another implant with three new leads in the opposite shoulder. Noiw I have a lovely divot in the left pectoral area that looks nifty and a bulge on the right.

So that was a year ago. Been through numerous adjustments and even tried standing on one foot while breathing out through my nose and still EF is in the toilet and spending more time in the oval office than the president. Like him as well, my problem is self induced, I am eating lasix like they are jelly beans.

So, everything has gomne downhill, not improved as promised in the sales brochure and we have been trying all kinds of things to allieviate the problems to at least an acceptable level to no avail.

Now let's just put the icing on this cake. I discovered by accident that my beautiful new CRT-D that doesn't do squat has been recalled, well St. Jude's calls it an advisory but the NIH says otherwise for battery failures. Seems they were buying up all the lithium Ion batteries Samsung didn't want. Oh and no they didn't bother to tell me, in fact they claim mine isn't on this list even though NIH says yeah it is and all indicators say yeah it is. Are they really Saints?

So here I sit with a piece of crap in my chest that doesn't even keep good time. Do I regret getting this thing crammed into my chest and going through two years of h$&&...I'll let you decide how I feel

Other than that minor detail, I'm good and you?

Linda

by Grateful Heart - 2017-05-25 20:33:00

I sent you a private message as a start so it would be easier for you to message me. 

Patch:  I'm sorry to hear you are having further problems.   You have certainly had your share.

Grateful Heart