15% EF

I have CRT-D, 100% dependent, AV Node Ablation and 15% Ejection Fraction. How does one cope with the such dire circumstances?

12 Comments

Some quick math

by sfbaywalk - 2011-10-09 07:10:00

Normal ejection fraction for a healthy person is about 55%-60% .... let's say 60%. Therefore, when you say you are at 15%, you can rethink that to say that you are about 25% of normal.

Obviously that is low. I'm running about double your level. I can walk reasonably fast, and I can swim. I am unable to jog for more than a couple of minutes.

But I do try to exercise some on a daily basis.

Other people here know a lot more than I.

Hi:)

by Pookie - 2011-10-09 07:10:06

Hi & welcome to our group.

I don't have an answer for you, but I can offer you a shoulder to lean on. From past experiences with my pacemaker surgeries, and coding not once, but twice, all I can say is to never ever ever give up hope. I know that is difficult to wrap your head around as I'm sure you don't feel like that right now, but one never knows what is in store for us. There have been several members where their ejection fraction has actually improved. If you use the "search" feature - upper right hand corner of this page - and type in "ejection fraction" you will find oodles of past posts from members on that particular subject.

Perhaps some of our members in a similar situation will response to your post as well.

As far as coping is concerned, I hope you have a support system full of caring family & friends. Sometimes just being able to speak about our issues, help.

At the hospital where I received my pacemaker there is a psychologist who will work with patients that are having a difficult time coping with anything to a heart transplant, to having a defib. I went to see him because I went through such a difficult time with not only dieing twice but also having 4 surgeries within 10 days and then another surgery 5 months later to reposition my pacemaker that migrated into my armpit.

Many of us experience some level of anxiety after any type of heart procedure...it's normal. My anxiety had taken over my life. Today, for me, things are much better, but it took a lot of time and a lot of work.

Coping in any situation is difficult, but the answer, I think, is finding what works for you. What may work for me may not work for you. All I can say it keep believing things will improve, keep the hope, and surround yourself with support. It can't hurt, right?

I wish I had the magic answer, but I don't:(

I truly wish the best for you,
Pookie

Hi:)

by slgeagle - 2011-10-09 08:10:00

Hi, I have seen your name on a lot of post. And I truly appreciate your quick response. And you are right, I have to find out what works for me.

We are in Maine and heading back to Florida in a few weeks. All of this heart process has taken place in Maine and I have been very pleased with the doctors, hospital, etc. The first thing I do when I get back to Florida is get established with the cardiologist down there and join a Cardiac Rehab Center. I think that is the best thing I can do for myself at this point.

Again, thanks so much.

Hi again:)

by slgeagle - 2011-10-09 08:10:07

OK, and thank you. You are the first person who has lifted my spirits a bit. I will keep in touch.

Tuesday is my first appointment the with PM tech. My device was downloaded twice at the hospital when I had episodes, I am really looking forward to the visit with the PM tech. Who knows, maybe he will have some setting suggestions.

Sue G

Hi again:)

by Pookie - 2011-10-09 08:10:11

What an excellent idea of going to cardiac rehab. I totally forgot about that. I was offered that, but declined as I was convinced in my head that that wasn't right for me......low & behold, 5 and a half yrs later, my EP (never had one until then) and my PM Tech decided to change one little setting on my pacemaker and instantly I had my life back.

So...what I am trying to say is: perhaps cardiac rehab could be your answer:)

Keep us posted on how you do........ok?

Pookie

Low EF

by SMITTY - 2011-10-09 09:10:25

Hello,

My first question is how do you feel? If you are feeling even half-way decent, I say don't pay too much attention to the EF numbers reported for you. Of course if you have an EF report of 15% and feel like the devil to go with it, about all I can do is I wish you the best because I don't have anything to offer. There is a biventricular PM that some people get to increase their EF, but I'm not a candidate of one of those.

I have been up and down the scale on EF numbers. During the last few years I have a low report of 27% and a high of 70% in March of this year. Then in August I got a report of 43% EF.

I have CHF and I was going through a period of feeling my worst shortly after getting the 70% number. Turned out I was retaining fluid in spite of having my diuretic dose increased. After changing diuretics I started to feel much better and I decided to put more stock in the way I felt than what the EF numbers indicated. Especially since I know EF numbers are really nothing more than some person's (supposedly a Dr) estimate of the amount of blood your heart is pumping. At least I haven't heard of an in line flow meter they can use to measure our heart's out put.

I saw your mention of heart rehab. I went through three months of that about 5 years ago. It did make me feel much better, and I was told it improved my heart function. I'm sure you will benefit from it too. Unfortunately my benefits didn't last but I guess there is really not much that could do for a 77 year old heart that was simply tired.

Good luck,

Smitty

Low EF

by slgeagle - 2011-10-09 10:10:30

Thank you Smitty, You said just what the nurses said, don't pay attention to the numbers. And my doctor also told me she has patients with a 40% EF who can't function as well as I can at 15%.

I do have a bivent pacer/ICD and so far it has not improved the EF. But the heart size has gone down a bit. So maybe the EF will go up at some point.

Thank you for your support. Hope you are doing well.

Sue G

Your stroke volume might be fine

by nofib - 2011-10-10 01:10:11

Susan,

Don't worry about the EF. I made a post about that today, basically the ejection fraction is an inside joke among cardios.

OTOH, the size of your left ventricle may return to "your" normal, following the installation of the Bi-V PM. It took only a few weeks for mine to shrink after they took out the single pacer - which had caused the dilation - and implanted a Bi-V. Then, of course, the cardio's EF numbers made him happy (didn't do anything for me, but someone was pleased at least).

Naturally, if your left ventricle is the size of a basketball, the cardio can't tell you that you have a 55% ejection fraction -- that would be saying you are pumping a gallon of blood with each contraction. Blimey, your eyes would be bleeding at that rate. So, an EF of 15% with a dilated (read "huge") heart might be the same stroke volume as a healthy person... they don't know, so you are free to believe as you will.

All the best,
Reed

Your stroke volume might be fine

by slgeagle - 2011-10-10 03:10:39

Great point! I had not looked at the EF in that manner. It does make sense. And since I am able to function daily life without problems I can really see your point. So no more dwelling on the EF for me.

Thanks so much.

Sue G

Low EF

by fishfighter - 2011-10-10 07:10:44

First off, Smitty, there is a ture way for them to get a true heart flow. I just went thru this test. They go into the right side of your heart with a cath. Using your height and weight, they can come out with a true flow of what your heart output is.

Sue, I been thru a lot in the last year. My EF was at 15-20%. After a lot of druges with no change, the doctors put in a CRT-D. More meds and more adjustments, they got my EF up to 30%. Well, that lasted for about 2 months and then I started feeling real bad. Back into the hospital and after more test,ultrasounds and more adjustments of my pm. Now my EF is below 15%. My doctor sent me to a heart transplant cardo and they did the right heart cath. For my size, my heart flow should be at 2.0-2.4liters, but its at 1.1. Not good! They are putting me on the heart transplant list.

Sue, you really didn't say what had happen to you in the first place. I my case, I have a viro infection attacking my heart which they is no real treatment. With the EF at 15%, you will have a good chance that it will improve with time.


Good luck and may God look over you in your time of need.
Paul

EF Numbers

by SMITTY - 2011-10-10 11:10:10

Hi Fish,

I have had an EF determined by the catheter method. I can understand why it may be the most accurate method since they have larger images to work with but it too is based on displacement. Like all the others the EF is based on displacement, or difference in the heart chamber size before and after pumping blood.

I think what we really need is a flow meter that can be inserted into the aorta just as it leave the left ventricle and measure the amount of blood passing through it. Then we can have a trued EF that is not based on measurements and interpretation by a Dr. Now I don't know if that would even do the job or not, if it were possible. But after my 70% EF only to be followed by a 43 a few months later, I will take any EF numbers given me with a grain of salt and like I said I will depend on how I feel to give me the best indication of my EF.

I will add that 70% number was not arrived at by some cardiology resident. I made the mistake of asking how much experience did that cardiology resident have that came up with that number. I was told pretty quick that it was not a resident but was by the cardiologist I have been seeing for about 10 years and that he didn't believe the number and did a recheck.

So, again, I think the EF numbers we have reported are just numbers and until we have something better we have to accept them for what they may be worth.

Hope you have a good day,

Smitty

Low EF

by slgeagle - 2011-10-10 11:10:16

Hi Paul, nice name, that is my husband's name!

They don't know what damaged my heart possibly a virus, but the virus is gone. When I went in two weeks ago, the electrophysiologist said he thinks that I have been having a-fib (never felt it) and that is what damaged my heart. The 15% has been consistent since the first echo back in April. No change with meds, etc. Although the size of the heart has gotten smaller which is a good thing. As of April I never knew I had damage, it was found during a yearly physical.

How long do they think you will have to wait? How do you cope? Do you live near a big city with heart hospitals?

Thank you for writing, please keep in touch.

Susan

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I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.