Surgery in 10 days

Hello all,

I'm new to the PM club, but I am so glad I have found it. I have already found some great information and I am feeling not so alone. Apologies in advance for the long post, I am just so frustrated and feel the need to vent to people that have been in this situation.

I have been diagnosed with cardiomyopathy, chronic systolic heart failure, congestive heart failure, LBBB, enlarged LV, EF 25-30%; has not been above 40% in two years. I also have severe and debilitating migraines (which I think is because I don't have enough oxygenated blood getting to my head). Because my ejection fraction is so low, I can't take any of the triptans for migraines, so I suffer through them or when that get to the point I can't stand anymore, I go to doc to get a shot. Sometimes he gives me strongest oxycodone and phenegran to have at home. I pass out, I get very dizzy & light-headed. I've been maxed out on all of the typical meds for my heart and the meds dropped my BP and HR so low i couldn't get out of bed. I have worn a life vest since April 17 and I am already in cardiac rehab.My doc has no idea why my heart is so weak. I do not have any blocked arteries, no calcium deposits, no viral infections, and no family history of heart disease. Doctor says it is all stress related?? I am 44 and was in relatively good shape when all of this started 2 years ago. Now I am lucky if I can walk my dog down the block. At first medicine controlled it. I am so frustrated because I can have a couple of good days when I am able to get up and maybe cook a meal or load the dishwasher. Then I have 4 or 5 days that I struggle to get out of bed to go to the bathroom. Taking a shower exhausts me. I feel like I take 1/2 a step forward and 10 backwards. My resting HR is usually between 125-130. It's like I am running a race 24/7. I've been in cardiac rehab since June, but it is difficult to make "connections" with people because I am so much younger than anyone there and have really no reason as to why I have heart failure. I am scheduled to have a CRT-D implanted in ten days. Doctor said I would have to have my arm in a sling for 4 weeks. How long is the average recovery time? I have dislocated my left shoulder in the past and am concerned about having to have my arm immobile for four weeks. Has anyone had device implanted that did not help improve their health? Any advice or words of wisdom will be greatly appreciated. Thanks for taking the time to read!

7 Comments

sling

by Tracey_E - 2013-09-21 09:09:17

Talk to the dr again about the sling! Most of us only wear it for a day or two. After that, if you keep your arm immobile your shoulder can freeze up. Most drs say no lifting anything heavy or raising it above shoulder level for 4-6 weeks. Anything else not only is ok but encouraged.

Have they mentioned an ablation to get your resting heart rate down?

There is no guarantee that the CRT is going to make you feel better. Many do feel better so hopefully you will be among them. Be aware that it is not a cure-all in your case. It will fix the LBBB and it should get your EF up by synchronizing the ventricles. It won't help the other conditions, and it can't slow down a heart rate that is too fast.

I had really amazing luck with migraines going to a chiropractor that specializes in neck (as opposed to one that does more sports medicine). Worst case it doesn't work, you have nothing to lose by trying because it's non-invasive and temporary. I still go back about once a month but I haven't had a full blown migraine in 15 years now. Once upon a time I spent a 1-2 days a week in bed with them and never left home without meds in my purse.

Tracey is right

by Many Blessings - 2013-09-21 11:09:28

Hi Angzee,

Tracey is right. A CRT won't bring your rate down without an ablation, or at least, that's what I was told prior to mine.

I was in the same situation as you (different underlying issues, and we know the cause of mine, but the same result). You can look at my bio to see my history so I don't have to write it here.

Meds weren't an option, as none of them worked (we tried every one out there for years), nor did cardioversions work any longer (I had those for years, sometimes several times a month). It was getting inconvenient going into the ER or hospital for heart failure symptoms (draining the fluid around the heart and lungs procedure wise). I work full time, and need to work full time (financially & insurance wise) so I was doing my hospital/ER treatments on the weekends.

Finally, the cardiomyopathy and heart failure symptoms were getting worse and they told me I had to have a transplant within a year, or I wouldn't be here (is a transplant an option for you). Soon after that, things got worse very quickly and they said I wouldn't be here in 3 months if we didn't do something now. They found out I wasn't a candidate for a transplant because I had too many electrical issues and they wouldn't put a transplant heart in someone who would damage that one too.

I had the CRT with AV Node ablation. Please research this with all of your might before doing it! Try any and every other option out there first! My EF did improve initially, but it has gone back down (I have had my CRT for a year and a half). Because of the AV Node ablation, my rate is controlled (I'm paced at 80-150), but I still have cardiomyopathy, A-fib, heart failure, and all of the other heart problems that were there before. I was told, the CRT/AV Node ablation, would not cure anything, but would hopefully, give me a little more time, and make me feel better during that time, which it has, somewhat.

For me, and this is my opinion for my case only, but yes it did help me feel somewhat better, but not as much as they hoped it would. I still have every single problem I had before, and things are still getting worse, just at a slower rate. At first, my coloring was better, and I was able to do more things, but hat has changed within the last 3-6 months.

The AV Node ablation is permanent, and once that is done, you are no longer a candidate for any new meds or procedure treatment that may come along. This is one of my regrets, though I was out of time and really had no other option (people & physicians were pushing me to do this now). Make sure you have NO other options before even considering it. Look EVERYTHING out there first including traditional medicine, alternative medicine, and anything else out there (I actually tried it all.)

In all honesty, if I had it to do over again, I would not have had the AV Node ablation done. It has not been worth it for me. Again, that is only my opinion for MY situation. Hopefully, others out here will give you more positive feedback.

If you are only having the CRT done without the AV Node ablation, that may be a different story. I would actually consider trying that if it were me. You just need to make sure you understand what exactly the device and procedure(s) will and won't do for you, so you can make the right choice for you.

Blessings, and best of luck.





PS: CRT-D

by Many Blessings - 2013-09-21 12:09:13

I just thought of something else. With my CRT, the ICD part wasn't an option, because of my A-fib and other arrhythmias. They said it would confuse the ICD and cause it to fire too many times (if not constantly) throughout the day and night.

Do you have arrhythmias as well as the high rate? If so, do ask your cardio doc & EP doc if this is a good idea. Even with your high rate, I wonder if it would still confuse the ICD. Maybe others out here can answer that for you too, but do check with your EP & Cardio docs on that.

I am one of the lucky ones

by Grateful Heart - 2013-09-23 08:09:57

I was diagnosed with cardiomyopathy, congestive heart failure, SSS,LBBB, enlarged heart and an EF 24% almost 5 years ago. I too had clear arteries.
My CRT-D has helped me tremendously. I hope the same for you.

My heart is no longer enlarged and my EF is now 50% (considered normal). The Doctor said it was an idiopathy. He said “that means we're idiots....we don't know what caused it”. They said it was probably due to a virus that attacked my heart but not sure.

I would go for a 2nd opinion unless you completely trust your Doctor. The fact that he is saying this is all stress related is bothersome. Based on your diagnosis, it is electrical. Is your Doc an EP? You want an experienced EP to do the CRT implant. Your reasoning for the migraines makes sense to me. Take the pain meds while you need them but then get off of them as soon as possible, jmo.

I am thrilled to hear you are already in Cardiac Rehab. I think it should be mandatory for those of us who can exercise with Doctors approval. I was 51 when this all started for me and believe it or not, the youngest in my Cardiac Rehab group too. Just start to talk to people about why you are there and you will make connections. I used to get invited for coffee afterwards by some in my group and I would sometimes go when I had the time. They all knew each other from high school (they are in their 70's now, 2 Marines, 1 Army and 1 other women) and they invited me into their circle and they had great stories of the old days and military days. I learned about their families and they, mine. To this day when I see them, it's like an old friend now. We stop, hug and talk for a while. My point is....you can do this, just be yourself...age shouldn't matter.

I was never offered a sling and never had a problem with frozen shoulder.

Many Blessings: I hope things improve for you and you feel better.

Angzee, if you need to talk, feel free to private message me.

Grateful Heart

Thank you

by Angzee - 2013-09-24 01:09:39

Thank you all of your support and ideas. I went today to have blood drawn as prep for surgery. I have a pretty bad sinus infection/cold so they sent me to my PCP to get that kicked out so I could go ahead and have surgery next week. I should be better by Wednesday, if not we will have to postpone surgery. PCP prescribed antibiotic and cough syrup. Could the Cardiologist not have done that...lol. What happened to the continuity of care. All of my doctors are in the same group and all medical records have to be electronic, so it seems to me that they should all know what's going on. JMO as a lay person.

Tracey,

I'll definitely talk to doc about the sling. I am really concerned that immobilizing my shoulder for that long will cause problems. She did say that I would not be able to lift anything or raise my arm above my head. I had a friend go with me to see the EP, bc my memory is so fuzzy these days and she confirmed what I thought the EP had said for wearing the sling 4 weeks. But I will make sure. Also, I am going to try the chiropractor to see if it will help my migraines. Right now, I either have to get shots or take massive amounts of narcotics (which I do not like). I've built up an extremely high tolerance to them. The amount that I can take and still function well would put most people to sleep for a week.

Many Blessings,
I am sorry to hear that the procedures have not helped you. I think a lot of times the medicine and treatment is worse than the disease. Doc has not said anything about ablation.

Grateful Heart,
Your situation does sound a lot like mine. Mine is idiopathic, but cardio says it's stress and I should stop stressing...duh. I don't really like my cardiologist, but he is one of the best around here. I don't like him because he is very dismissive with me and says there is no other explanation than stress. I believe it was shingles virus that attacked my heart as well, but he said that type virus would not have done it. I love my EP. She is also one of the best around here. She is very comforting and takes the time to answer any questions and explain exactly what is going on and what she is going to do.

I thank all of you for sharing with me. I'll update as I can.

Update

by Angzee - 2013-09-26 02:09:57

The nasty cold/sinus infection/respiratory infection I have has caused my implant surgery to be postponed....until December. The infection is now in my lungs and it makes it even more difficult to breathe.The good news is that I have more time to research everything. The bad news is that I get to wear my life vest for three more months. I'm thankful that this device is available and provides a little piece of mind, however I would like to have my skin back....lol. By the time surgery rolls around, I will have worn the vest for 8 months.

Thanks to all,

Ang

Meant to be for now

by Many Blessings - 2013-09-28 01:09:35

Hi Angzee,

I'm so sorry you're not feeling well, and the infection is causing a delay for your surgery. Please take care in knowing the postponement was meant to be for whatever reason. When the time is right, everything will fall into place, and you will do great with your surgery/procedure! Since you're not having the AV Node ablation, I'd be a LOT more comfortable doing it. If you absolutely need the AV Node ablation later, then you can do it then.

I will keep you in my prayers. Make sure to let us know how you do.

Blessings!

You know you're wired when...

You get your device tuned-up for hot dates.

Member Quotes

At age 20, I will be getting a pacemaker in few weeks along with an SA node ablation. This opportunity may change a five year prognosis into a normal life span! I look forward to being a little old lady with a wicked cane!