Did CRT-d improve your quality of life

Interested in other peoples experience of CRT-d on quality of life.

It's been four and a half years since my implant.  I am a super responder - EF back to normal after 3 months.   My kidney disease has improved (but largely due to a very low fat plant based diet IMHO)  and I'm alive, bonus I guess.

But I'm finding my quality of life is not great.  I'm on a minimal dose of beta blocker (bisoprolol) and I am always always tired, really tired.  I'm on insulin for diabetes and I've put on weight because of that.  I hate how I look and how I feel.  I'm a 67 year old female.

I can do more than I could do immediately post implant but because my heart failure was caused by a virus I didn't have any long period of disability before.   So I'm quite fed up with my seeming inability to get fitter.  Maybe I magically transmuted into a lazy drone, but I do try.  Even half an hour of seniors aerobics leaves me exhausted for two to three days regardless of how slowly I build up to it.  I can walk 1 kilometre but pay in exhaustion for any more than that.  

The hardest thing is I don't know what to say to my doctors because maybe it's just me.  No shocks, no a-fib just dragging exhaustion. CRT-d seemed to promise so much, but so much of what.  Just glad that being in Australia I didn't have to pay for it.  

 


8 Comments

CRT quality of life

by Gemita - 2022-06-15 07:14:17

Renny, when I read your message I thought incredible achievement and outcome with heart failure and then I saw the bit about diminished quality of life.  I am not in heart failure, but have a pacemaker for bradycardia.  I am also on Bisoprolol minimal dose too. I have started putting on unusual amounts of weight (in the abdomen) and beginning to find it difficult to exert myself and I need to address this too.  I am 73, in the UK.

Reading your message it seems that you have had an excellent response to CRT to bring your EF back to normal.  Not everyone is so successful.  Have you recently had your EF checked again?  Might be worth asking about, to see whether it has changed.  The other point is that beta blockers (all of them) can cause symptoms you describe.  Some of us just cannot tolerate them at all, but on minimal dose Bisoprolol I cannot imagine that this is the only cause for your symptoms.  

My other thought is the virus which led to your heart failure.  Could this still be causing problems for you and have you spoken to your general doctors/heart failure team about this possibility?  Was the virus ever identified?  Alternatively, have you had any general checks for other causes for your symptoms like anaemia, thyroid?  I note you are a diabetic.  My husband is also on insulin (and has a pacemaker too) and it can be very difficult for us to keep his glucose levels controlled especially in the presence of any infection, viral or bacterial.  Yes insulin can cause weight gain, but then so can many other conditions which is why I would recommend a thorough health check and a long chat with your doctors/diabetic nurse.  And just because you are not getting shocked or haven’t noticed any Atrial Fibrillation, this doesn’t mean that you are not getting “slow” benign arrhythmias, or even slow AF, and remember any slow heart rhythm disturbances can certainly cause extreme fatigue too, they do for me.

How to speak to our health professionals?  That is difficult for many of us too and something that is often discussed here, so you might perhaps want to do another post sometime?  I hope members with CRT-D pacemakers will see your message and offer support.  You are definitely not a lazy drone but someone who is trying really hard to overcome the fatigue that can come with heart failure and with many other health conditions.  I wish you well

Crushing Tiredness

by SeenBetterDays - 2022-06-15 07:53:22

Hi Renny

My heart went out to you when I read your post.  I know how debilitating fatigue can be and how it completely dominates your life.  It is also sometimes difficult to express to others including medical professionals how we feel and how devastating it can be to lose your ability to be as active as you once were.  Gemita is right that medications including beta blockers can have fatigue as a side effect.  I am not sure if you are on other medications for your kidney disease but it might be worth reviewing with your doctor any interactions which potentially could be contributing to your problems. 

You mentioned that you were on a low fat diet.  I have personally found that increasing my level of healthy fats (seeds, nuts, olive oil, oily fish etc) has had some benefit to how I feel but there may be individual reasons why you can't do this.  I am always wary of giving advice without knowing the full picture and I certainly don't claim to be a nutritional expert! 

The symptoms you describe about being exhausted for a long period after exertion are symptoms I have also experienced and raises the possibility of chronic fatigue or a post viral syndrome which may affect your mitochondrial function (the mitochondria are basically your body's tiny engines which allow you to produce energy).  This is another thing you could discuss with your doctor.    From a personal perspective, I know I am unwell and continue to seek out more knowledge, ask questions and take action where I can in the hopes of improving my health.  You absolutely shouldn't suffer in silence as you, above all people, know if something doesn't feel right.  Unfortunately, we are extremely complex beings and it can be very difficult to pin down the underlying reason for a problem.  However, that shouldn't stop us from trying and challenging medical professionals where we feel there is scope to improve our quality of life.  I am sending you love and best wishes and hope that you can get some answers and start to feel better soon. Take care Renny.

I can relate

by lukerbee - 2022-06-15 14:00:41

on metaprolol and sometimes (often) feel like I'd rather have my ticker quit than set and try to work up the effort to walk out and check the mail. I am also 85, but had no physical efforts prior to my heart failure at 83. I am getting more active, but it is forced. God bless you all, Chuck 

Hmm

by ROBO Pop - 2022-06-15 17:59:32

Well my CRT-D didn't improve my quality but it's kept that stinking ratty smoking creaking thing I call my heart going so...

Many reasons could be the cause of your complaint. In my case, my mitral valve has given up for the second time, and I've just plain outlived my expiration date. So my CRT is jist delaying my kids inheritence.

Look, consult with your Cardiologist, you may find there's a different reason for your issue but. I found taking my beta blocker at bedtime helped. If not, there are a lot of other medications that can be swapped out and may work better for you. Hang in and work with your medical team.

Good luck

They're talking to me about new procedures

by islandgirl - 2022-06-15 22:46:02

I was upgraded to a CRT-D from an ICD in January.  I switched EPs after 23 years in February......and now I wish I would have changed several years ago.  Oh, well, can't look back. My EP is a great electrician but definitely not managing the evolving HF properly, without access to the new opportunities to help my symptoms. I am now seeing university-based EP and heart failure surgeon.  My HF is significant and find that's been causing my SOB, extreme fatigue, swelling.  I was on no HF meds with my former EP.  The new team is convincing/encouraging me to go through a Barostim procedure.  I am still hesitant, adding another device, and I now have an appt with a vascular surgeon and am at the top of the cancellation list.  She also wants me to have a MEMS? procedure, where they put a paperclip type device in the pulmonary artery that monitors the pressure. She said they have had great early intervention results for HF patients.  I am not having any organ impacts yet.  My lab values show a slight improvement with my heart failure but the numbers are still quite high.  I am still having arrhythmias, but nothing sustained, and I had no VT since the device upgrade.  I do not have high BP so I am unable to take the full dose of Entresto.  I'm just learning about this.......

CRT-D helped significantly

by ezrk - 2022-06-15 23:09:34

I had a CRT-D implanted about 16 months ago due to HF and it more or less immediately made a significant difference.  EF went from 20% to 35% in about a month with major improvements in aerobic endurance.  A combination of drug adjustments, time and exercise has seen that improve to about 50% now.

Fatigue

by Selwyn - 2022-06-16 08:33:30

Wonderful that your ejection fraction is back to normal.  Cause to celebrate

So what causes your fatigue?

1. Beta blockers?

2. Renal Function?

3. Depression?

4. Post viral fatigue?

5. Diabetes mellitus?

6. 'Other' physical illnesses?

Given at least 6 very real  possibilities, you need a medical overhaul. Everything else is speculation. Do please find someone to give you a proper diagnosis. Don't be afraid to consider the depression, you have more than enough to affect your well being, though you should be celebrating your heart has responded to the CRT-d. As most of the aforementioned are eminently treatable, go for it, and get this sorted.

Fund somebody?

by Renny - 2022-06-30 03:23:01

I actually have a team f specialists two talk to each other.  i live in a regional area so specialists are in short supply.  1 or two if each,  it's always hard to know if it's me, what is to be expected, or something going on.  Part of figuring it out is finding  other peoples experience.  For me anyway. 

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