CRT-D success

This is Texas54 checking in with fantastic news. I had an ejection percentage of 30 prior to having a St. Jude CRT-D implanted a year ago, January 31st. I have a left Bundleblock, enlarged heart and the Cardiomyopathy that goes along with that. I am participating in a research study for St Jude. They pick up my heart activity at night and I go for 6 month adjustments. Today was my first Echo since the surgery. I had an ejection percentage of 65!!! Normal results. The cardiologist said he has never seen such an increase while he has been in practice . I was on three meds and now down to two and one of the two has been cut in half for dosage. I hope my story helps some of you to know that it is possible to obtain these kind of results with the correct device and settings. I feel very lucky and blessed.

15 Comments

Thank you for sharing

by SparkyNoel - 2014-02-05 04:02:16

That is wonderful news. I know you, your family and friends are very grateful that you are doing so well. I'm sure your story will help inspire others:)

Success

by Texas54 - 2014-02-05 05:02:07

Thank you both for your response. If I can inspire or lift anyones spirits I would love that. I learned so much from this club prior to and after my surgery . It helped so much to know what I went through was normal. There was always a positive reply to my concerns.

Thanks to all that responded to me a year ago. I am now at a point where I dont even think I have a device most of the time.

Ride 'em cowboy!

by Theknotguy - 2014-02-05 05:02:09

Hey! Great news! Glad you shared with us. It really helps when people tell us what's going on.

Really happy for you!

Theknotguy

Great news

by Bostonstrong - 2014-02-05 06:02:21

Glad to hear things are going well

texas 54 Thank you!!

by coppertop - 2014-02-06 02:02:50

I wanted to thank you so much for sharing your echo results. I also have the same condition as you. my CRT-D was in implanted may 2013. soon after my leads pulled back the left lead way back and started pacing my diaphragm. on Dec 13, 2013 I was shocked 4 times that day. had SVT that never had showed up prior to that day! that second shock finished off the left lead. so it longer paced me. spent 4 days in hospital. My doctor did a ablation which was successful. 2 weeks ago I had my lead revision done.
and he was able to put left ventricular lead in the vein that he wanted the last surgery.was unable at time. he also put the right lead back in place that pulled back at some point. So seeing your post has given me hope!
Thank you!

Thanks Texas54

by Major - 2014-02-06 08:02:20

Hi Tex

That is very encouraging news regarding your EF. I have just come home from the hospital today, just upgraded from an ICD to a Medtronic Viva XR CRT-D. Treating non-Ischemic Dilated Cardiomyopathy with EF of 10 to 15 but feel relatively good except for breathing is up and down. THe first thing I noticed right away after the implant yesterday is that my breathing has already improved. Did you get improvement gradually over the year and how quickly did you see improvements? The EF improvement you have received is quite amazing and gives us all hope.

Best regards,
TM

PS Texas54

by Major - 2014-02-06 08:02:26

Thanks for sharing!

TM

Answer to Major

by Texas54 - 2014-02-07 12:02:58

It was gradual for me. I saw the surgeon and the St. Jude technician one month after surgery, then six months and then just recently after a year. The St. Jude technician made adjustments each time to so that the device was working for my particular situation working to its maximum. The left problem side is now in sink with the right. The recent adjustment I felt quite a change in how I felt. I will go for six month adjustmenst and see the surgeon until the point I do not need any more adjustments and then I will go annually. I am using more of the battery then the average person or what St. Jude predicted. I used a year and half of battery in 12 months. I guess this shows how much it is working for me. It will just likely need a replacement sooner than we thought. This is not bad though as when it comes time I will get the latest device which is bound to be even better. I am an optimist, have to be to get the very most I can out of every day life. You have seen improvement already so that is a good sign. My improvement was so gradual that it was not as noticeable as yours. You are going to be amazed at your increase in EF when you go for an echocardiogram to how you are progressing. These high tech devices are amazing. Mine has 12 different settings so it works for all different types of conditions. Best wishes and keep a positive attitude.

Stem Cell

by Texas54 - 2014-02-08 01:02:13

I am from Houston also. I just passed the requirements for the third lead when the surgeon obtained insurance approval for me last year. I am a bit worried when I need a replacement as I will likely be on Medicare then and I know they will be much harder to obtain approval for a high tech device/newest on the market.. I am very interested in how you got in the research program and had stem cell replacement and gene replacement. I am not good on the heart lingo, what is LV?

If you want to share your information on this just to me there is a link that lets you just connect with me. I am so interested in what you have to say about the stem cell and gene replacement.

Major

by Grateful Heart - 2014-02-08 02:02:52

Was the stem cells your own? I am also interested in the stem cell and gene replacement information. Others may be as well, so if you don't mind sharing, it would be nice of you to educate us all.

My condition is similar to yours and Texas' and I too have had success with my CRT-D, 5 years and counting now. Happy for you both.

Grateful Heart

Reply to Texas54

by Major - 2014-02-08 10:02:53

Dear Tex,

Thank you for the reply! I am very happy for you. This is all great feedback and I am with you on keeping the positive attitude toward all of this. I am already less sore than when I came home on Thursday and the little bit of pain is well worth the outcome. I'm sure a little of my fast improvement on my breathing could well be placebo effect, but I will take any improvement as it comes. It is really great to have this blog for all the folks that are not sure or have reservations about these treatments. My cardiologist in Houston recommended the Bi-V CRT device the first time around 4-years ago, but at that time had to settle for 2-lead ICD because the parameters for the insurance were more stringent requiring a much higher QRS on the EKG than the 125 I had at the time, the FDA as since lowered the QRS requirement to 120 if the EF is less than <30. Since then I have been in two heart studies, had stem cell replacement injected into my LV and the 2nd one was gene replacement into the LV, showed definite improvements after both, every bit helps. These studies are great because they educate us on our heart desease as well as benefiting us and others for the future. I will keep my progress posted here and again, thanks for the fast reply, it really is very encouraging for me and all that suffer with these heart issues.
Cheers and best regards,
The Major

reply on Heart studies to Tex & others from the Major

by Major - 2014-02-09 04:02:13

Hi Tex, & Grateful Heart

Sorry about that, I was shortening Left Ventricle to LV - I think that once you need the replacement, medicare could not deny replacement to an existing device. If you find out about this, please inform us because we will all be heading for medicare some time soon. Here is some info on studies.

As far as the heart studies go, the Stem Cell studies I was in were at Minneapolis Heart Institute Foundation, (google Aastrom Stem Cell) and the Gene Replacement Study was at Fletcher-Allen Heart Institute in Burlington VT, it is the Ad5.hAC6 Gene Transfer for CHF or Heart Failure Study. This study is still enrolling in The Minneapolis and Burlington sites and at some other locations. I think the AC-6 study was sent out to several more locations, including Houston Med Center, Cedars Sinai in LA. VA San Diego. The folks at Minn and Burlington are great and very helpful.
This is how you find the studies go to www.ClinicalTrials.gov and in the search box type in your primary condition, i.e. Dilated Cardiomyopathy, Heart Failure etc, or type in the type of study, i.e. AC6 Gene replacment for CHF or Stemm cells for CHF/Heart failure etc. and it will bring up the studies. There is a filter in the search engine so that you can bring up studies just in the US and even in specific States, you can start in your home State and fan out if you don't find any.. If you find one that sounds interesting to you, read the protocol to make sure you qualify, they are very specific
Here is the link to the AC 6 Gene Transfer Study, if you scroll down it shows you all the requirements, Hospitals participating and the coordinators names. You are better off contacting the coordinators by phone to see if they have a place avaialable and unless you have a really progressive Doctor, don't get them involved until you have all the details and you are signed up, you do not need your own Doctors calling or it may never happen. Like anything else, there is always some element of risk, no risk, no reward. My philosophy is I have nothing to lose. You get the best medical care available in these fields with some of the most advanced Heart Specialists and Professors in the world. Here is the link to the AC-6 Study, when I talked Fletcher Allen afew weeks back, they were still recruiting patients. http://www.clinicaltrials.gov/ct2/show/NCT00787059?term=AC6+CHF&rank=1
Good luck and GOD bless to ya'll
PS Tex, I am originally from London, living in Maine and Florida now.
Cheers
The Major

Strange Symptoms after CRT-D Implant from The Major

by Major - 2014-02-09 04:02:21

Hi to all,

Has anyone here had symptoms like this, nothing urgent, however, a little uncomfortable.

As mentioned, I have just upgraded from an ICD to a Medtronic Viva XR CRT-D last Wednesday. I'm feeling great, my breathing has definitely improved and my wound is healing very well. When I lay down on my left side or lean on my left elbow and arm in a certain way with my elbow trapped between my ribs and the bed, I feel a heart beating sensation in my lower left side of my rib cage just about the location of where your elbow hangs normally at your side. It is intermittent, does not hurt but makes me feel a little queasy and I'm not the queasy type, it just feels strange, like the area may be getting stimulated by one of the device leads. Anyone else had this, if so please share.

Of course I will have a one week follow up on Wednesday and will mention it there.

Best regards to all

The Major

PS - Stem Cell Reply from The Major

by Major - 2014-02-09 04:02:26

Hi Grateful and Tex again,

Yes, the Stem Cells were my own. They take the cells from your own bone marrow and harvest them with the Aastrom patented Stem Cell process. When the cell are ready they inject them via heart catheter into the ventricle site areas that need it. It is an amazing process that I found fascinating to watch. Of course they will knock you completely out if you want. I definitely received the cells, but was processed in the control group in a crossover program where the control group, 8 out of 24 of us did not get the cells until 6-months after the last person was processed. It is purely luck of the draw. Some studies, like the AC-6, 1 out of 4 get a placebo in a double blind program, since it has been one year in this study, I will not find out for a couple of months if I received the Genes or placebo, good odds I did since I was the first one at this location to get it done.
As far as the Stem Cell study, I definitely showed some improvements after the treatment, which I was aware of right away, better breathing and more stamina. If you have any more specific questions please let me know on here. If you have a more private question, my email is ScaffoldTM@aol.com

Good Luck

The Major

Major

by Grateful Heart - 2014-02-09 11:02:04

Yes, there are others who cannot lay/ sleep on their left side, myself included. I can feel my heart beating into the mattress but my device and skin get squeezed so it hurts and is very uncomfortable.

Many of us can hear our heartbeat while your left ear is pressed against the pillow.....and that was even before a pacemaker/ CRT.

Try a small pillow under your arm, that may help.

Many others do not have a problem so I guess it just depends.

Thanks again for the info above, truly fascinating.

Grateful Heart

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But I think it will make me feel a lot better. My stamina to walk is already better, even right after surgery. They had me walk all around the floor before they would release me. I did so without being exhausted and winded the way I had been.