Should I have a CRT-D

Has anyone had a CRT-D due to an enlarged heart because of Chemo. My blood is not pumping through my left side of my heart properly. EF is 20's. Cardio said would not do surgery, if EF comes up to 30's. On Entresto and insulin. Couldn't tolerate bisoprolol and other medications. I have nerve pain under arm after lymp nodes removed. Just want to know what to expect, if I have surgery. Thanks!

[Pommel]

Hello! I have LVSD due to chemo. I was diagnosed with an EF of 10 and scheduled for a CRTD too but a year after diagnosis my EF was 40 on the meds and so I've not had it fitted. Sorry I can't help with knowledge of how the surgery might affect you but I know there are lots of people who've had it done on here. Sending you best wishes x

[Hidden in reply to Pommel]

Pommel, I forgot to ask what meds you were or are taking? Thanks

[Pommel in reply to Hidden]

Hi there, I take bisoprolol, candesartan and eplerenone. Entresto wasn't available 5 years ago when I was first diagnosed but reckon I'd have probably been on it if it was! There's a good website and fb group called pumping Marvellous, they have lots of info on the meds and crtds. X

[Hidden in reply to Pommel]

Thanks again, Pommel, Did you have any side effects on bisoproplol? I don't know if taking Entresto and bisoprolol together would of caused the side effects I had on bisoprolol. Appreciate the website will check out.

[Pommel in reply to Hidden]

Hi there, I was just really tired and sleepy, and dopey in my thinking! Each time they increased it, felt odd for a while. Been on 10mg for 4 years or so now and I'm fine, got used to it. But I was so slow at everything to start with! Don't think I have any other side effects. I hope the entresto works well for you! What happened with bisoprolol for you? Was it your blood pressure too low?

[Hidden in reply to Pommel]

Hello Pommel. Entresto was a miracle for me and my husband would tell you so. I had congestive heart failure in 2015 and was starting to go into congestive heart failure again until I got me a new Cardio, who put me on Entresto 2018. It helped lower my BNP of the heart slowly. I was not looking for surgery yet because of breast cancer surgery 2013. I was looking for other options. The Lord provided. My cardio is trying do everything he can not to have to put a CRT-D in. It's the last resort. My EF is in their 20's. See him this month. The Bisoprolol had more side effects than I've had with any other medicines I could not tolerate. One is swelling of both my feet, my teeth (no top teeth) was hurting terribly, coldness in hands & feet, could not focus or concentrate on doing things, like finance. That was it for me. I decease my 1/2 of 5mg to 1/4 and stopped after 3 months. I am not having any of these problems any more. Bisoprolol was used to lower my pulse not blood pressure. I noticed it was causing my blood pressure to go up. I am on the lowest of Entresto and can not go up higher because it dropped my blood pressure to low. Entresto has blood pressure medicine in it already. Did you have a heart attack? I checked my own records and don't see that I had a heart attack. Bisoprolol could prevent heart attack/blood pressure; eplerenone is blood pressure after heart attack, and candesartan is for blood pressure/ARB. Medicines can interact with each other. Sorry, for the longer reply.

[Pommel in reply to Hidden]

No, I didn't have a heart attack. The meds I'm on are classic heart failure medicines. Sorry to hear you had a bad reaction to bisoprolol.. I Definitely get freezing hands and feet in cooler weather! And a runny nose! But not too bad other than that. Got used to it and was able to think clearly enough to go back to work 6 months after I started taking them!

[Hidden in reply to Pommel]

Hi Pommel, I want to Thank You, again for letting me know about your medications. I am going to talk to my Cardio about eplerenone.

[Denise2011]

I've not had chemo, so I'm not in the same position as yourself. I have though recently had a CRT-D for my heart failure. My ejection fraction was 27% earlier this year and my heart is also enlarged. I imagine your concern is because the lymph nodes removed were on the left? My experience will have been different, but am happy to take the time and tell you of my experience if you wish? I can offer you this advice if you do go ahead, and the one thing I can suggest is this .... I was having so much discomfort on my left as I felt my shoulder was hanging down in bed. This is more than likely because my mattress could do with replacing perhaps, I don't know. Anyway, what I did was a folded a large towel (not quite bath size towel) in half and then folded it into 3. I positioned that so that it gave me shoulder/arm/arm pit support. It really did help, gave me much comfort and I'm sure having done this, helped all in all. I'm still using it even though I feel much better and will take it away once my month is up.

[Hidden in reply to Denise2011]

Thanks Denise2011! I will keep your suggestion in mind. Is the CRT-D helping you feel better?

[Denise2011 in reply to Hidden]

I had around 10 fabulous days and I thought my life had changed forever. To say I was on cloud 9 is an understatement. But, please don't forget I have arrhythmias, so my situation is quite different. Anyway, I am all but back to square one and I am this morning, 100% and more beside myself. My heart is old and worn and it doesn't need to beat like this, but I have horrendous reactions to beta-blockers. In fairness, what it did do though is allow me to walk 80.5 miles in July. I had no choice. There is only me and I had to walk everywhere to get shopping. Much of those journeys were/are uphill. I keep hearing it is working fine. The thing is this and that is that I have a handheld ECG machine (Prince 180B) that I was eventually forced to use. It tells a different story. All that said, I know for a fact that I have problems with my valves and to date, no one will give me the details of my CT Angiogram. So on that note, I think I have other issues that the Pacemaker will not and cannot correct. Today, I am miserable and feel once again up the creek without a paddle. Bye for now and do please let me know how it goes for you, should you go ahead? Thanks.

[Hidden in reply to Denise2011]

Thanks Denise2011. If I should decide to do I'll let you know.

[Hidden in reply to Denise2011]

Update Denise 2011. Saw Surgeon today about CRT-D but also learned about CRT-P which is smaller with no defibrillator. After talking to my cardio and him explaining what I needed. I am leaning toward CRT-P. Because of lymph nodes being removed my surgeon said it would be wise to use right side in case of infection. Had a port for chemo on that side too.He also said that they try to use medicine if at all possible in my case. So I am trying elplerenone to see if I can tolerate. If not, since I can tolerate Entrestro, go up on it. Surgery is my last option. Have a Wonderful Day. Are you feeling better with your CRT-D?

[Denise2011 in reply to Hidden]

Lovely to hear from you. I think it fair to say you have a wonderful Cardiologist. I hope you get on with trying Elpleronone and please do keep in touch to let me/us know if it works? Thanks. I find this really interesting (as the old BT Advert said "It's good to talk".

I can understand that this is the best option at present and I hope it goes well for you.

I also have Heart Failure (27% EF) in April and am on Ramipril.

Thanks for asking about how it's going. The CRT-D is clearly helping my heart to pump, but last Sunday the VT was back and it won't leave me alone. I'm pretty well beside myself as I had 6 weeks and 3 days (not quite as beautiful as I had in the beginning, because the PVCs returned with a vengeance as well.) If they cleared up for all those weeks, I struggle to understand how it is they have returned. I'll start a new thread I think ... to see if this has happened to anyone else.

Do have a lovely weekend ... and I'm so glad that you are getting sorted and I hope it goes really well. As I say, please keep in touch and let us all know how you are? Bye for now.

Best wishes, Denise.

[Hidden in reply to Denise2011]

Hi Denise2011. Sorry for not updating soon. Gynco checking polys for cancer. Good News-No Cancer! But still wants to get rid of polys. Another bump in the road. Thisgave Eplerenone extra time to work. I have not had palpitations as before and I am tolerating it well too. Will check with cardio how long before I can have another ECG.

If Eplerenone does not work I will move to CRT-P which will have to be placed on right side. I had to look up VT (Ventricular tachycardia Pulse Rate) and PVC (Premature Ventricular contractions) to understand what you were talking about. You are right that our heart situation are different. I hope you find answers to your questions on the new thread. Thank You for sharing your journey with your heart.

Have a Blessed Day!

[Hidden]

I forgot to ask you what meds you were taking? Thanks

[Bigbrian]

Hi, I had a CRT-D fitted 18 months ago and its been great, operation took about 45 minutes and the recovery was just that I was not to raise my arm over shoulder height on that side for about 6 weeks. So fully recovered, scar has almost gone and my EF has gone from 30 in heart failure to 50-55 , so not in heart failure now. A “low normal” as the heart nurse called it. On entresto max dose, and bisoprolol and eplerenone . I have reduced my bisoprol from 10to7.5 as blood pressure had dropped, due to heart recovery. So don’t be worried about it, it was a day patient stay for me and out same day. Also having a built in defibrillator makes it a bit easier to live with, all those poor people who don’t have a built in lifesaver………. Any other questions just ask.

[Hidden]

Hi, Bigbrian I wonder if you had a heart attack before getting the CRT-D. I see you are taking eplerenone which is for blood pressure after heart attack. I am only on Entresto low dosage since 2018 because PB was already low. I tried bisoprolol for 3 months had side effects. Are you having any? My Cardio is trying everything. CRT-D last resort. I had lymph nodes removed on left side because of breast cancer. At times, I have swelling and burning on that side. I want to be at peace with this decision being the right one. I am so Happy 😃 for you. It is great to have someone to do so well after surgery and the CRT-D is working well for you. Keep up the encouragement to others. Have a Blessed Day!

[Enonykasper in reply to Hidden]

Hi I have hypertrophic cardiomyopathy and had a CRTD fitted on the26th April 2021

I take eplerone for my blood pressure I have not had a heart attack I take it with beta blockers

If you have a problem with the left hand side it says in my information they can fit a CRTD to the right side so perhaps you can inquire about that

Good luck 👍🏻

[Hidden in reply to Enonykasper]

Hi Enonykasper What bet blockers are you using?

[Enonykasper in reply to Hidden]

Hi I take bisoporsolI take 3.75 in the morning

And 2.5 in the evening

And 25 mg eplerone 👍🏻

[Hidden in reply to Enonykasper]

Update Enonykasper. Saw surgeon and said he preferred right side but because of lymph nodes being removed and possible of infection we would have to go right side to be safe. I had a port for chemo on the right side, too. Thanks for the suggestion. His evaluation of 1-4, I am a 2 because I am able to still do things. He preferred also, that I could do it by medicine to strengthen the heart. One last try on different medicine. Fingers X.

[Enonykasper in reply to Hidden]

Hi that all sound good at least you have answers now Glad I could help it’s good that we can pass on information that we have gathered

When they said I needed a CRTD I did a bit of research and came across the CRDP but it was not suitable as it does not have a defibrillator built in

The inherited gene I inherited

Can cause sudden death my dad died 30 years ago with sudden death and they have found a heart rhythm in my heart that contributes to sudden death so I need a defibrillator

Glad you have a few options

Take care please keep us up to date

Have a lovely day 👍🏻😘

[Hidden]

Thanks Enonykasper! I will check with Cardio about different placement of CRT-D tomorrow when I see him. Have a Blessed Day!