HEART UPDATE

Dragon_MD · Feb 19, 2010

As of now there has been no change. I still have an ejection fraction of about 20%. I went to Stanford last Friday. Excellent docs. They added another diuretic called inspra to my lasix, and upped my coreg to the ideal dose of 25mg twice a day. I had really only been being treated with meds for about 6 weeks at the time I went to Stanford, so it is not so terrible there has been no change yet.

The plan now is to remain on my current regimen of meds, lisinipril, digoxin, coreg, lasix, and inspra. If I show no improvement in the next 4 months, I will have to have an ICD, internal defibrillator(shock box) put in at that time. Actually, they will if my EF% doesn't improve to about 35%. Of course if it gets close, 33-34%, they will consider continuing meds and hope for more improvement.

So at the moment, that is where my medical treatment stands. On my end, I am now on a completely salt free diet. I am also allowed to do light cardio, until I get short of breath. But I am not allowed to push it. SO right now I can get a decent paced walk on a tread mill for about 10 minutes. I can also use very light weights, like 5lbs or those rubber bands in place of cardio. But I am 100% restricted on and heavy lifting.

So right now it wait , hope, and pray for improvement. Unfortunately my meds make me very tired, so that is rough. But I am hanging in there

Thanks again for asking!

Dragon

maldorf · Feb 19, 2010

GET THE ICD

Dragon_MD said:
As of now there has been no change. I still have an ejection fraction of about 20%. I went to Stanford last Friday. Excellent docs. They added another diuretic called inspra to my lasix, and upped my coreg to the ideal dose of 25mg twice a day. I had really only been being treated with meds for about 6 weeks at the time I went to Stanford, so it is not so terrible there has been no change yet.

The plan now is to remain on my current regimen of meds, lisinipril, digoxin, coreg, lasix, and inspra. If I show no improvement in the next 4 months, I will have to have an ICD, internal defibrillator(shock box) put in at that time. Actually, they will if my EF% doesn't improve to about 35%. Of course if it gets close, 33-34%, they will consider continuing meds and hope for more improvement.

So at the moment, that is where my medical treatment stands. On my end, I am now on a completely salt free diet. I am also allowed to do light cardio, until I get short of breath. But I am not allowed to push it. SO right now I can get a decent paced walk on a tread mill for about 10 minutes. I can also use very light weights, like 5lbs or those rubber bands in place of cardio. But I am 100% restricted on and heavy lifting.

So right now it wait , hope, and pray for improvement. Unfortunately my meds make me very tired, so that is rough. But I am hanging in there Thanks again for asking!

Dragon

Im telling you, get that ICD. It could save your life someday. I went into a lethal arrythmia before I had mine put in and came very close to death. I passed out, bad tachycardia, and was going into ventricular fibrillation. Luckily I called 911 and the medics were right there, they had only been there maybe 5 mins when I passed out! They shocked me 2x to get my heart going again.
I went to the hospital and was there for almost 1 week for observation and then got the ICD. I feel so much safer now. Its a safety net. The surgery doesnt hurt at all, and its easy recovery. It pales in comparison to the agony I went through with triple hernia surgery!
As far as meds go, youre still on a much lower dose than me. I take a 25 hour tablet of coreg, coreg cr i think its called, which is 80 mg. Once I went on that 80 mg of coreg my ejection fraction climbed from 20% up to about 27-28% now.
No matter what, get that ICD. If I had chosen not to call 911 for help that night I would be dead today. If I had been driving a car with my kids in the back seat, I may have crashed. I dont carry a cell phone, I hope you do, because without a phone if you have an arrythmia like I had you might as well dig your own grave.

minister · Feb 20, 2010

Bro, I'm glad you're fighting and going forward, I admire your determination, my prayers will be with you and your family. God bless you. The Minister.

pesty4077 · Feb 20, 2010

I will be praying for your recovery.

Oldlifter · Feb 20, 2010

Dragon_MD said:
If I show no improvement in the next 4 months, I will have to have an ICD, internal defibrillator(shock box) put in at that time.
Dragon

My dad had this before he passed. It worked GREAT!. When they researched the data, it had saved him at least 250 times! In other words, he would have lived 10 years less. I wish you the best!

.

Dragon_MD · Feb 20, 2010

Yeah, The ICD doesn't seem like a bad Idea. I get the feeling they will want to put one in anyways.

Maldorf, how was the surgery like for the ICD? can you see it in your chest? Is there always wires sticking out?

maldorf · Feb 20, 2010

Dragon_MD said:
Yeah, The ICD doesn't seem like a bad Idea. I get the feeling they will want to put one in anyways.

Maldorf, how was the surgery like for the ICD? can you see it in your chest? Is there always wires sticking out?

The surgery wasnt bad at all. I think they told me it should take about 1 hour or so, but mine took over 2 hours. I was awake the whole time! No pain at all, just a little tugging sensation as they dig around your chest,lol. It was pretty cool to be awake and they even played some good music to calm me during the operation and it probably helped the surgeon do his thing too.
Mine took longer because my subclavian vein, i think thats where they go in, was rather thin and he had trouble feeding the leads down it into my heart. I asked him what was up and he explained during the surgery.
The only part that scared me some was when they put me all the way under, unconcious, so that I wouldnt feel any pain when they stop my heart. Yeah, they have to stop you heart to simulate cardiac arrest. They do that to test the ICD and see if it fires and starts your heart. That way youre not walking around with an ICD that wont work when you need it. Needless to say, mine worked fine. Ive never had to use it since then, thank god, but it makes me sleep better at night knowing its there for me if I should need it. Remember, I almost died once when I didnt have it. Im so glad to have it now.
There are not any wires to be seen! Its all under the skin. ALl that you can see from the outside is the buldge, square shaped, under your skin around the clavicle area or upper pec. Small price to pay. I go to the beach, swimming pool etc and dont worry about it. You geta few glances, but who the hell cares.
The battery is good for about 7 yrs and then you have to go in for a new ICD. They just open the skin back up and pull the old one out and put the new one in. This is good too because you get a new and improved ICD. they keep getting smaller and more powerful, so new is going to be better. they leave the old leads and use them again.

elvisman99 · Feb 20, 2010

?CARDIOMYOPATHY?

Dragon_MD said:
As of now there has been no change. I still have an ejection fraction of about 20%. I went to Stanford last Friday. Excellent docs. They added another diuretic called inspra to my lasix, and upped my coreg to the ideal dose of 25mg twice a day. I had really only been being treated with meds for about 6 weeks at the time I went to Stanford, so it is not so terrible there has been no change yet.

The plan now is to remain on my current regimen of meds, lisinipril, digoxin, coreg, lasix, and inspra. If I show no improvement in the next 4 months, I will have to have an ICD, internal defibrillator(shock box) put in at that time. Actually, they will if my EF% doesn't improve to about 35%. Of course if it gets close, 33-34%, they will consider continuing meds and hope for more improvement.

So at the moment, that is where my medical treatment stands. On my end, I am now on a completely salt free diet. I am also allowed to do light cardio, until I get short of breath. But I am not allowed to push it. SO right now I can get a decent paced walk on a tread mill for about 10 minutes. I can also use very light weights, like 5lbs or those rubber bands in place of cardio. But I am 100% restricted on and heavy lifting.

So right now it wait , hope, and pray for improvement. Unfortunately my meds make me very tired, so that is rough. But I am hanging in there Thanks again for asking!

Dragon

BRO I UNDERSTAND EVERYTHING YOUR GOING THRU.. LAST FEBRUARY 2009 MY BROTHER BECAME VERY ILL AND WAS MISDIAGNOSED WITH A LUNG DISORDER AT KENNEDY HOSPITAL AND BATTLED SICKNESS FOR 2 MONTHS UNTIL GOING TO THE E.R. AT OUR LADY OF LORDS HOSPITAL IN CAMDEN, NEW JERSEY.. WHEN THEY SEEN HIS CONDITION AND REALIZED THEY COULDNT HELP HIM THEY AIR LIFTED HIM TO UNIVERSITY OF PENNSYLVANIA AN AT THAT TIME HE WENT INTO CARDIOGENIC SHOCK... WHILE AT PENN THEY DID ALL TYPES OF TESTING CARDIOECHOGRAM, CARDIAC CATHERIZATION, ETC. AND FOUND THAT HE HAD ENLARGED HEART ABOUT THE SIZE OF A NERF FOOTBALL PROTRUDING DOWN HIS RIBCAGE.. HE HAD AN EJECTION FRACTION OF 5-10%.. IN MAY OF 2009 HE HAD THE DIFIBRILLATOR PUT IN AND HAD TO CARRY A MEDICINE PUMP THAT CARRIED THE MEDS FROM HIS WAISTBAND TO HIS JUGGULAR IN HIS NECK.. HE WAS ABLE TO COME HOME FOR PART OF SUMMER BUT HAD TO RETURN INDEFINITELY JULY TO SEPT IN WHICH HE RECEIVED A HEART TRANSPLANT SEPT. 3, 2009.. AND IS DOING GREAT SINCE THEN AND IS EVEN BACK IN THE GYM..
NOW SINCE HEART DISEASE IS A PROBLEM IN MY FAMILY I DECIDED TO GO TO A CARDIOLOGIST IN NOVEMBER. WHILE I HAD A ECHO DONE IT REVEALED AN ARYTHIMIA , SO THEY ORDERD A NUCLEAR STRESS TEST ( WHICH SHOWED MY HEART WASNT GETTING THE BLOOD IT NEEDED SO THEY ORDERD A CARDIAC CATHERIZATION IN WHICH THAT SHOWED I HAD A 15%DILATED LEFT VENTRICLE AND AN EJECT. FRACTION OF 40% POSSIBLY DILATED CARDIOMYOPATHY.. SINCE THEN IVE BEEN ON COREG 3.125MGS / 2 TIMES DAILY AND 2.5MGS OF RAMIPRIL 2 TIMES DAILY. I GO BACK TO U OF PENN IN MARCH FOR AN ECHOCARDIOGRAM..

BRO LISTEN IF YOU WANT YOU CAN PM ME AND WE CAN EXCHANGE INFO IF YOU LIKE.. YOUR IN GREAT HANDS AT STANFORD..TAKE CARE BRUTHA AND LET ME KNOW IF YOU NEED ANYTHING..

ELVISMAN

king1033 · Feb 20, 2010

look into coq10 (ubiquinol) 400mg daily I have heard good things about it improving EF%, anything at this point is better than nothing, give it a shot.

maldorf · Feb 20, 2010

king1033 said:
look into coq10 (ubiquinol) 400mg daily I have heard good things about it improving EF%, anything at this point is better than nothing, give it a shot.

Yeah, Im on I think 500mg/day on that. I take crestor, so I wanted to counter the effects of that.

maldorf · Feb 20, 2010

elvisman99 said:
BRO I UNDERSTAND EVERYTHING YOUR GOING THRU.. LAST FEBRUARY 2009 MY BROTHER BECAME VERY ILL AND WAS MISDIAGNOSED WITH A LUNG DISORDER AT KENNEDY HOSPITAL AND BATTLED SICKNESS FOR 2 MONTHS UNTIL GOING TO THE E.R. AT OUR LADY OF LORDS HOSPITAL IN CAMDEN, NEW JERSEY.. WHEN THEY SEEN HIS CONDITION AND REALIZED THEY COULDNT HELP HIM THEY AIR LIFTED HIM TO UNIVERSITY OF PENNSYLVANIA AN AT THAT TIME HE WENT INTO CARDIOGENIC SHOCK... WHILE AT PENN THEY DID ALL TYPES OF TESTING CARDIOECHOGRAM, CARDIAC CATHERIZATION, ETC. AND FOUND THAT HE HAD ENLARGED HEART ABOUT THE SIZE OF A NERF FOOTBALL PROTRUDING DOWN HIS RIBCAGE.. HE HAD AN EJECTION FRACTION OF 5-10%.. IN MAY OF 2009 HE HAD THE DIFIBRILLATOR PUT IN AND HAD TO CARRY A MEDICINE PUMP THAT CARRIED THE MEDS FROM HIS WAISTBAND TO HIS JUGGULAR IN HIS NECK.. HE WAS ABLE TO COME HOME FOR PART OF SUMMER BUT HAD TO RETURN INDEFINITELY JULY TO SEPT IN WHICH HE RECEIVED A HEART TRANSPLANT SEPT. 3, 2009.. AND IS DOING GREAT SINCE THEN AND IS EVEN BACK IN THE GYM..
NOW SINCE HEART DISEASE IS A PROBLEM IN MY FAMILY I DECIDED TO GO TO A CARDIOLOGIST IN NOVEMBER. WHILE I HAD A ECHO DONE IT REVEALED AN ARYTHIMIA , SO THEY ORDERD A NUCLEAR STRESS TEST ( WHICH SHOWED MY HEART WASNT GETTING THE BLOOD IT NEEDED SO THEY ORDERD A CARDIAC CATHERIZATION IN WHICH THAT SHOWED I HAD A 15%DILATED LEFT VENTRICLE AND AN EJECT. FRACTION OF 40% POSSIBLY DILATED CARDIOMYOPATHY.. SINCE THEN IVE BEEN ON COREG 3.125MGS / 2 TIMES DAILY AND 2.5MGS OF RAMIPRIL 2 TIMES DAILY. I GO BACK TO U OF PENN IN MARCH FOR AN ECHOCARDIOGRAM..

BRO LISTEN IF YOU WANT YOU CAN PM ME AND WE CAN EXCHANGE INFO IF YOU LIKE.. YOUR IN GREAT HANDS AT STANFORD..TAKE CARE BRUTHA AND LET ME KNOW IF YOU NEED ANYTHING..

ELVISMAN

I would like to talk to him someday about his transplant. that is what lies down the road for me, eventually. Doc's cant predict exactly how long my heart will hold out, but one thought 10-15 yrs maybe. I have myself convinced that life would be misearable after the surgery, but it sounds like he is doing ok? Ive never spoken to someone who has gone through that. Id be intereseted in how he feels and the meds he has to take to fight autoimmune problems. If you think he wouldnt mind talking to me could you send me a PM with info how to reach him?

Dragon_MD · Feb 21, 2010

maldorf said:
I would like to talk to him someday about his transplant. that is what lies down the road for me, eventually. Doc's cant predict exactly how long my heart will hold out, but one thought 10-15 yrs maybe. I have myself convinced that life would be misearable after the surgery, but it sounds like he is doing ok? Ive never spoken to someone who has gone through that. Id be intereseted in how he feels and the meds he has to take to fight autoimmune problems. If you think he wouldnt mind talking to me could you send me a PM with info how to reach him?

I am interested in his status as well.

kid1dakota · Feb 21, 2010

I too have some pretty serious health issues which I have been dealing with for years and truly feel for you guys.Stay strong and keep a positive attitude.Unfortunately in life these are the cards we were dealt and have to play with them

Sounds like some of you guys are going to teaching hospitals which truly is the best place you can be.I go to Shands in Gainesville,FL.

I actually have a Doctorate of Chiropractic degree.I sat and listened for 3 1/2 years in school how western medicine is so bad, people are living out of medicine cabinets, Medical Doctors only want to remove sick body parts instead of try rejuvenate them etc etc..I could go on for days...

Well I went to these very people when my health went south and asked for help and they couldn't,lol. So I don't practice chiropractic and my life has been saved literally by these big bad drug companies and Medical Doctors.

Its funny Sometimes on here you see guys bitching and moaning about things like diet, contest prep etc... and I wish those were my biggest problems in life,lol.
Be thankful if you are healthy and don't ever take it for granted.I'm sure the above posters will also tell you quality of life diminishes with decline in health.

My condition is familial and the result of a near fatal automobile accident.But you healthy guys don't put your very valuable health at risk for a couple pounds of muscle.

Stay strong

elvisman99 · Feb 21, 2010

Dragon_MD said:
I am interested in his status as well.

Ill have him shoot you a pm.. How old are you Dragon?

qbkilla · Feb 21, 2010

bro you will get through it, best of luck to you.

maldorf · Feb 21, 2010

Well Put

kid1dakota said:
I too have some pretty serious health issues which I have been dealing with for years and truly feel for you guys.Stay strong and keep a positive attitude.Unfortunately in life these are the cards we were dealt and have to play with them Sounds like some of you guys are going to teaching hospitals which truly is the best place you can be.I go to Shands in Gainesville,FL.

I actually have a Doctorate of Chiropractic degree.I sat and listened for 3 1/2 years in school how western medicine is so bad, people are living out of medicine cabinets, Medical Doctors only want to remove sick body parts instead of try rejuvenate them etc etc..I could go on for days...

Well I went to these very people when my health went south and asked for help and they couldn't,lol. So I don't practice chiropractic and my life has been saved literally by these big bad drug companies and Medical Doctors.

Its funny Sometimes on here you see guys bitching and moaning about things like diet, contest prep etc... and I wish those were my biggest problems in life,lol.
Be thankful if you are healthy and don't ever take it for granted.I'm sure the above posters will also tell you quality of life diminishes with decline in health.

My condition is familial and the result of a near fatal automobile accident.But you healthy guys don't put your very valuable health at risk for a couple pounds of muscle.

Stay strong

I wish I had thought more like that when I was younger. When youre really young sometimes you feel as if nothing bad like this is going to happen to you, youre just too young. Heart problems only happen to older folks. I really agree with you too about how petty some of the complaining is, how some guys are fretting over losing 5% bodyfat when we are just glad to be alive now. You really dont realize what you have until its gone, yeah I know Cinderella song lol!

Dragon_MD · Feb 22, 2010

elvisman99 said:
Ill have him shoot you a pm.. How old are you Dragon?

I am 30yo bro. And thanks, that would be nice.

maldorf said:
I wish I had thought more like that when I was younger. When youre really young sometimes you feel as if nothing bad like this is going to happen to you, youre just too young. Heart problems only happen to older folks. I really agree with you too about how petty some of the complaining is, how some guys are fretting over losing 5% bodyfat when we are just glad to be alive now. You really dont realize what you have until its gone, yeah I know Cinderella song lol!

This is the truth. I have been told that my CHF nay have been do to damage earlier in life, and just went untreated for many years until I am where I am at now. Were talking a 4 year period in my life as a teen ager that may have caused this

Oldlifter · Feb 22, 2010

Dragon, I hope the best for ya, man. My wife had a heart catherazation (sp?) 2 days ago. We were nervous as you can imagine. She checked out ok, no blockage. So, with my father going thru this and my wife giving us a scare, I can sorta relate to what you are experiencing. hang in and be positive.
Again, best wishes!

.