.·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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Greg a
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Joined: June 4th, 2010, 10:24 pm
Location: Kitchener, Ontario, Canada
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Post by Greg a » June 8th, 2010, 8:37 am

ABOUT ME

May 8, 2007 enter hospital short of breath and have an angiogram that shows numerous blockages

May 11 open heart surgery lasting 7 hours and comprising of five bypasses and one valve ring support

May 11 -25 Life support as the Dr's cant awake me and they tell my family that they don't know if i'll ever come out of it

May 26 fourteen days after surgery I wake up

Still unaware of my situation i am weaned from all of my IV's

I am moved to a recovery floor where a groin infection plagues me

I am then moved to a rehab floor where upon complaining about a sore lower back a surgeon removes a cyst

June 13 my original surgeon looks at my incision and he sticks a finger in it up to his knuckle and then informs me that he is going to have to tiighten a wire holding part of my breast bone in place and so..............

June 16 i am back in surgery to tighten the wires holding my sternum and ribs in tact

I was home in July but dropped in our drive in August

Gee since then i was back in hospital with a massive infection and that resulted in them removing my sternum/breastbone in August again i was out of it (coma) for 14 days and the family was all gathered but i pulled through and was finally out of hospital mid october

I am still off work (don't know if I even have a job) but it is GREAT to be alive

I have a Medtronics ICD implanted in July 2008 and a patient in the RAFT study by the Ottawa Heart Institute but implanted at London Health Sciences and Monotored by St Marys here in Kitchener

I was "paced" on August 17,2008 but was not aware until Sept when I attended at the Implant Clinic for my second monitor reading then on Nov 23 it once again tried to pace me but failed so the defibultor kicked in and brought me back... It was 10:30 am and I was sitting injecting insulin and wondered why it was taking me longer than usual and only found out in Jan when I was on for the RAFT study monitoring

Then Feb 18,2010@2:30pm I was once again revived unbeknown to me until I was at the Heart Function clinic @ St Marys and as my Cardiologist was telling me I could not drive he said that on the bright side we knew it worked and I should stop testing it ..... sure he has never been a passenger with my wife driving ........ just kidding honey you are a much better driver now that I keep my eyes shut

My ICD has saved my in more ways as stated I have no sternum and CPR would do me in .... by the way my implant was done as an out patient booking in at 8am and leaving at 2 pm.

I have been in touch with only a couple of others whom have had a radical sternectomy and have given me hope in knowing that I am not alone. If you feel the need I can provide you with more personal contact information for us ( I say us as my wife may be better able to see it from your side) I will provide you with email info and from there we can send phone numbers...I think Sharon would be great to talk to as she was there all along doing the hard work while i slept
LIVE
LOVE
LAUGH
ITS ALL GOOD

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ABOUT ME:
http://www.icdsupportgroup.org/board/vi ... &start=570

ScorpD
Posts: 81
Joined: June 11th, 2010, 6:32 am
Location: Southern Illinois

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Post by ScorpD » June 19th, 2010, 11:08 am

Hello everyone.

My name is Clif and I am 50 years old. I had my first MI back in December of 99 and a second one in March of 2000. I had a St. Jude ICD implanted in 04 due to a low ejection fraction and a high number of PVCs.

Well everything went fine for around 4 years with no events of any kind and then last year I had three cases of non-sustained VT that resulted in my ICD charging but not actually zapping me. Then on May 19 at 10:33pm I was suddenly awakened by what felt like a hard thump in my chest. Next thing I knew I was sitting up holding my chest with pin pricks going off all over my body, dazed and gasping for air. Needless to say it was not the best way to wake up.

At the doctor's office it was determined that I had gone into what he called a ventricular flutter at a rate of 240 per minute and if not for my ICD it would of been fatal. So even though it was a very rude awakening it sure beat the alternative.

Oh my wife will attest to the fact that when my ICD fires I yell very loudly.

Clif
Maybe the only number that really matters is "On a scale of One to Ten, How do you feel today?"

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DaveLevenson
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Location: Warren, NJ
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Post by DaveLevenson » June 19th, 2010, 6:17 pm

Hello All:

Just found this group; I've had a St Jude V-168 ICD since August of 2007.

I'm 63 and live in New Jersey (outer NYC suburbs) with my wife of 41 years and a poodle (no kids). I'm originally from Washington, DC. I have spent most of my working life writing computer software. I also own a couple of small businesses: a pay phone route and a laundromat.

Image

I've never been overweight; I've never smoked. I kept my cholesterol around 120 or less with the aid of some statins, and got a lot of physical exercise. I'd never had any serious health issues. One afternoon at the laundromat, while I was taking apart a malfunctioning washing machine, I experienced a cold hard sweat. I felt so weak that I could barely remain standing. A 7/16" socket wrench in my hand began to feel as heavy as a sledge-hammer. No chest pain; no arm or shoulder pain; none of the classic symptoms of heart trouble. Just hard cold sweats and physical weakness. I drove a couple of blocks to the local hospital. By then I was weak enough that somebody delivered me to the ER in a wheelchair. I was quite surprised when a doctor introduced himself as a cardiologist, and told me: "you're having a heart attack -- now lie still and I'll see you in the cath lab in a few minutes". An hour or so later, he told me that he'd opened up the most critical blocked coronary artery, but that more work would be needed when my condition had stabilized. I spent a day or two in the ICU and was then moved to a regular room. After a week, they sent me home, equipped with a wearable defibrillator (a Zoll Life-Vest). They told me to plan a visit to the big hospital, where they perform non-emergency cardiac work, in a week or two. It was great to be home. I took a shower and had a good night's sleep despite the vest.

The following day, I had two more incidents of cold sweats. I put in a call to the cardiologist to advise him of this symptom. 30 minutes later, he returned my call. As I sat up in bed to take his call, the lights all went dim ... and I woke up face down on the floor, next to the bed. My wife and our poodle had come into the room. As I learned later, I had experienced V-fib and had lost consciousness. The vest had delivered two shocks, probably resulting in a convulsion that tossed me out of bed and onto the floor. An ambulance was called, and arrived with an EMS team. They took me off to the aforementioned big hospital. The next day, the same cardiologist who had helped me a week earlier at the local hospital opened up the remaining coronary arteries -- by now I had five stents. On the following day, I met the electrophysiologist. On the next day, he implanted the ICD.

Since then, I have had regular checkups and ICD checks, but no shocks and no further heart trouble. I'm semi-retired now, and work part-time installing and servicing telecommunications equipment. Still operate the laundromat and the pay phone route.

As a hobby, I write filks (new words to old songs). A sample:

(with apologies to Johnny Cash)

I keep a close watch on this heart of mine;
I keep my ICD on all the time.
It looks for beats off-key or out of time.
But I feel fine,
I walk on-line!

I'd find it very, very easy to turn blue.
I'm glad to be alive when each day's through!
Yes I'll admit: I've had a scare to two;
But I feel fine,
I walk on-line.

-Dave Levenson, NJ
Dave Levenson, NJ
St Jude V-168 Implanted August '07

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SuzieQ
Posts: 417
Joined: June 16th, 2010, 5:45 am

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Post by SuzieQ » June 19th, 2010, 7:14 pm

Hi. . .My name is Carolyn and I am 76 years old. I have been reading the comments here for the past several weeks hoping to learn more about my ICD, a Medtronic Virtuoso II DR which I received 2/17/10. I was told very little about it, but was given a pamplet. Was so ill for the weeks following I'm just able now to research it more. My journey with heart problems started three years ago with pancreatitis caused by a stone from the gallbladder in the duct. While recuperating, I suddenly developed AFib and was hospitalized again, was given heparin for several days and then cardioverted. NSR only lasted a few days, but became sporadic and ,although it made me very tired, it was not debilitating. Then last Christmas time a very severe attack with a high, very sporadic, heart rate landed me back in the hospital again. This time it was debilitating. . .couldn't walk from bedroom to kitchen. . .breathless and weak. Rhythm meds were not working for me and they tried to get my INR to a therapeutic dose for three straight weeks before another cardioversion. Also developed CHF. Then I had a major heart attack and SCD. Two stents were implanted and five days later the ICD. I am not sure what it is programmed to treat, but I know the pacemaker is set for rates 60-130. After the implant, developed a clot in left arm near implant and was hospitalized; another severe attack of AFib sent me back to hospital again after which I had an infection in right arm from IV. . .$1700 worth of antiobiotics because had tested positive for MRSA. Now am waiting until August when I'll hopefully be far enough along to stop my coumadin and Plavix for a breast biopsy. Has anyone here had breast cancer surgery and treatment with an ICD? Is radiation therapy possible. Thanks for any help you can give me. Carolyn
2/11/09 MI, SCD
2/12/09 2 stents in LAD, 1 drug eluting, 1 bare metal
2/17/09 Implanted Medtronic Virtuoso II DR
AFib, Leaky Mitral Valve
My intro at http://www.icdsupportgroup.org/board/vi ... 650#p61650

drwturnswood
Posts: 1
Joined: June 18th, 2010, 9:24 pm

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Post by drwturnswood » June 20th, 2010, 12:13 am

Hi,

I'm a retired engineer, 64 years old, and live in Arizona. I had an acute myocardial infarction 15 years ago, for which I had an angioplasty performed. Since then I have been on several different medications. In addition to the heart problem, I've had COPD for a number of years and am on O2 full-time. Last week I visited an electrophysiologist, was told that as a result of my latest echolcardiogram, with an IF of about 15%, I'm a prime candidate for an ICD implant. This procedure is scheduled for the 7th of July. Needless to say, I'm very nervous about this procedure and its implications, so I'll be rapidly reading messages here, and probably have questions I'll ask shortly.

Thanks ahead of time.

Don

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Donna London ON
Posts: 17
Joined: May 26th, 2010, 10:28 pm
Location: London, Ontario, Canada

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Post by Donna London ON » June 20th, 2010, 1:11 am

Hi Don,

I'm Donna from London, Ontario, Canada. When an ICD implant was recommended to me in May, like you, I was uncertain about it and definitely nervous, despite other surgeries in the past. But it was a piece of cake ! Really ! I asked for as much "conscious sedation" as they could give me !! - I was conscious enough to respond to the nurse or doctor when asked how I was doing but other than that, it just felt like someone was tamping something down on my chest; all I felt was some pressure; also had local anaesthetic at the implant site. I was tender and sore for a few days but that gradually faded. My procedure was on May 27 and except for the evidence of the scar which too is gradually fading, I don't know that I have the device. Before the procedure, I did my own Internet research and my husband and I met with the clinicians at University Hospital here in london for a "briefing" on the procedure and the purpose for the device. I came to terms with the fact that it is a life-saving device and if I wanted to continue the lifestyle that I have - travelling etc. then having the implant was the best decision to make.

I developed Congestive Heart Failure following a severe bout of pneumonia in January. At that time my Ejection Fraction was 20%. It has since improved to 30% assisted no doubt by the medication I take. I was told by my truly wonderful cardiologist that an ICD is recommended for anyone with an EF lower than 35%.

This is truly a great website. You'll find lots of personal experiences from people far and wide and of all ages.

Welcome to the group and best of luck,
Donna
CHF Jan 2010 following viral pneumonia
EF 20% Jan.; 30% May
Carvedilol 12.5; Spironolactone 12.5, Lasix 40
ICD May 27, 2010-Telegen E102 (Boston Scientific) " ... the smallest, thinnest high-energy ICD in the world ...."
30 yr Ins. Dep. Diabetic, 10 yr Breast Cancer Survivor, Sarcoidosis (Lungs) 2004
GLAD to be planting daisies instead of pushing them up .... !

NanCee
Posts: 2
Joined: June 12th, 2010, 1:17 pm

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Post by NanCee » June 22nd, 2010, 6:23 pm

Hi - My name is Nancy and it has been 1 month since I recieved my St Judes ICD. I had a atrial septic defect (hole between chambers) repaired in '89 in Chicago when I was 31. Everything has been fine, but on routine echo- my heart had gotten larger and I developed mitral valve regergitaion and was to get it repaired at St. Lukes in Milwaukee. When they did a pre op cath they discovered I have Left Ventricle Non-Compaction. It is a condition that they dont know that much about treating and am being treated with alpha/beta blockers and the ICD. I am still a little bit freaked as I dont have a 'plan' or solution to this. I have been lurking here and taking comfort from all you brave folks. Thanks & Hello.

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Donna London ON
Posts: 17
Joined: May 26th, 2010, 10:28 pm
Location: London, Ontario, Canada

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Post by Donna London ON » June 22nd, 2010, 8:36 pm

Hello NanCee,

Welcome to the Group ! I'm a Newbie also !

I'm sure you must be dealing with a lot of uncertainties right now, but it does appear that your physicians are on the right track. There does not appear to be much information on Left Ventricular Non-Compaction. What I did find was that there is a link between patients who have an Astrial Septal Defect who later experience LVN. Both conditions are generally attributed to genetics as you're probably aware. ACE inhibitors, anticoagulants like Warfarin, and Beta Blockers like Carvedilol (which I take) are on the front line of treatment. Having the ICD (which I also have) is added protection in case the heart's having a "bad day" and decides to speed up or slow down without letting us know ahead of time !!

The furthest thing from my mind in January of this year was having an ICD implanted. My husband and I were all set to go for our 4 month winter in Florida. Then pneumonia hits me at Xmas time and the next thing I know my heart's Ejection Fraction is only 20% and I'm diagnosed with Congestive Heart Failure. Bye, bye Florida ! well - at least until next year !! Now that I've been scoped, scanned, and ... grammed, treated with an ACE inhibitor, diuretic and beta blocker, and having the ICD implant, I feel more confident about my condition and I feel much better physically. That's not to say that the early days weren't distressing, they were. But moment by moment,, day by day, it became easier to deal with. I still suffer from fatigue and my energy level is not close to what it once was. But that's OK - if I accept that that's the way it's going to be then I learn to live around that.

This is a great website. There are so many of us, far and wide, and of all ages, who have similar conditions. Knowing that is it's own form of empowerment, I think.

Be Ever Hopeful,
Donna
CHF Jan 2010 following viral pneumonia
EF 20% Jan.; 30% May
Carvedilol 12.5; Spironolactone 12.5, Lasix 40
ICD May 27, 2010-Telegen E102 (Boston Scientific) " ... the smallest, thinnest high-energy ICD in the world ...."
30 yr Ins. Dep. Diabetic, 10 yr Breast Cancer Survivor, Sarcoidosis (Lungs) 2004
GLAD to be planting daisies instead of pushing them up .... !

Thomas
Posts: 1
Joined: June 11th, 2010, 11:19 pm

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Post by Thomas » June 24th, 2010, 8:16 pm

Hi, All.

I'm Thomas and I'm 40 years old. I've been living with apical hypertrophic cardiomyopathy all my life, but wasn't diagnosed or symptomatic until 10 years ago.

Until 2009, I had no symptoms what would suggest the use of an ICD. However, I have had several episodes of non-sustained VTACH on my holter monitors. My doc is a bit concerned, but my EP and another doc say I'm "in the gray area" and it's all up to me. My doc is being protective and obviously wanting to be safe.

I'm leaning toward getting the ICD, although I'm not in a huge hurry. My life will change significantly when I get this done, so I know it's a big change.

One thing I'm not very excited about is the idea of the ICD sticking out of my chest so far. I'm still active and have a decent looking chest with my shirt off. Though I'm happily married and not out on the prowl, it's still a nice feeling to have a good looking chest, even if it means a scar. Such is life, I guess.

I'm glad this forum exists and I'll keep you posted when I pull the trigger on the ICD. Thanks all.

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Donna London ON
Posts: 17
Joined: May 26th, 2010, 10:28 pm
Location: London, Ontario, Canada

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Post by Donna London ON » June 24th, 2010, 10:27 pm

Hi Thomas,

Welcome to the Group !

I'm also new - joined in May after my ICD was implanted. I won't repeat my "history" - everything's on my profile if you'd care to read it. Heart disease came out of the blue for me so it's been an adjustment.

When it was suggested to me by my Cardiologist that an ICD would be beneficial since my heart's Ejection Fraction had only improved from 20% in January to 30% in May, like you, I had some trepidation. I imagined this foreign body sticking out of my chest, and since I've already gone through a Mastectomy and Reconstructive Surgery for Breast Cancer, having another scar was the last thing I wanted. But, it's not so bad. The device is quite thin and the scar is healing nicely. I'm going to try and upload a picture - bear in mind the scar is not quite 4 weeks old but as you can see it does not protrude much from my chest and I'm hoping with time and Vitamin E oil the scar will be less visible.

Whatever the case will be for you, I'm sure you will be able to find lots of information and personal experiences on this website. And "meet" some very remarkable people.

Donna London ON
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CHF Jan 2010 following viral pneumonia
EF 20% Jan.; 30% May
Carvedilol 12.5; Spironolactone 12.5, Lasix 40
ICD May 27, 2010-Telegen E102 (Boston Scientific) " ... the smallest, thinnest high-energy ICD in the world ...."
30 yr Ins. Dep. Diabetic, 10 yr Breast Cancer Survivor, Sarcoidosis (Lungs) 2004
GLAD to be planting daisies instead of pushing them up .... !

glh17
Posts: 5
Joined: June 19th, 2010, 11:09 pm

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Post by glh17 » June 30th, 2010, 2:39 pm

Hello,
My name is Gary and I live in Murfreesboro, Tn, about 30 miles southeast of Nashville. I'm 57 years old. I had a St. Jude ICD (model CD3231-40) implanted at Vanderbilt Heart Center about 3 weeks ago on June 7, 2010. My follow-up with my surgeon is tomorrow morning.
Prior to receiving my ICD I was diagnosed with congestive heart failure and had experienced a previous "silent" heart attack some time ago. I've had an irregular heart beat (left bundle branch blockage) for several years. Over the past couple of years I've had a great deal of difficulty doing routine daily activities. Fortunately, my work is not physically demanding so I am still working but not doing much of anything else. I hope the ICD gives me enough energy to return to a more active life.
I'm a college professor and enjoy woodworking as a hobby. I am also a big fan of the Tennessee Vols, Tennessee Titans, and the St. Louis Cardinals.
I have a great wife (34 years), two daughters, and three grandchildren (ages 4-9).
Have a great day,
Gary

gerry
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Post by gerry » July 1st, 2010, 12:12 am

Hi ,my name is Gerry, 47 years old,a few years back I had a mild heart attack,back then I was told it was a virus,until this last december I started to show signs of a irregular heart rhythm,having muga scans done my ejection fraction is at 29 percent,and my family doctor is taking this serious,since she says I had a heart attack before,shocked to actually hear her say it,and not a virus.I currently have type 2 diabetes as well,.just last friday saw my heart specialist and he recommends me to have a ICD,that I qualify for one,booking me a appointment with a specialist to go over the device and its pro's and cons,I'm assuming,I'm at 80/120 for blood pressure but he wants me at 60/120 in a few months,my next follow up appointment is in four months,a follow up I guess,I'm completely in the dark,On the drive home it really started to sink in,that I will need surgury,and to be honest I'm really scared-about the operation,the ramification of getting zapped, losing my drivers license,I'm a single parent to a 14 year old son,who I don't think he really understands the scope of whats happening,.
there are many nights after work that I feel my chest sucking in,or my heart flutters and I feel faint,and I stop what I'm doing and just relax myself,then I think how many times this could zap me if I had it on now,physically I know I need it,emotionally I not ready.In another week I'm on holidays for a week,during that time,I'm really going to try to start thinking positive of the procedure,when I get back I see my doctor who will have a few changes to make in my medication,I'm hoping she will go through the steps in this journey.I'm sorry for rambling on,like this ,just being single is hard to keep so much bottled up,later perhaps I will have better coherant questions to ask of you guys,thanks for listening.
type 2 diabetes
ICD implant june 28/2011
1 Device Medtronic Protecta XT DR D35
1 Atrial Medtronic 4076 CapSureFix
1 RV Medtronic 6935-65 Sprint Quatt
40mg Atorvastatin-120 mg Diamicron-80mg Asa
-10 mg ramipril-100 mg Carvedilol-.
Class II CHF level.from level III.

telewiz
Posts: 1
Joined: June 21st, 2010, 5:32 pm

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Post by telewiz » July 1st, 2010, 8:11 pm

Hi everyone I'm Steve, age 54, live near SLC UT (with only 1 wife). I had a preventative ICD implated Dec. '08. No zaps and in good condition. After reading through a sampling of posts on this board I thought I should come to the "experts" for advice on living with an ICD. Looks like a lot of very positive group of people that want to get the most out of life.

Pre-ICD I was very active and have tried to continue aerobic activities. I believe I'm gettting unwanted pacing that my EP does not seem to understand or address. Okay, so now you know I'm an engineer too. Always thinking gadgets should work better and wanting to fix them! Is there a topic on pacing (or no pacing) for active ICD users?

I'll continue to watch the carvedilol posts too. I'm on 12.5 mg and have resting HR of 40-43. Low pacing set at 40 and I'm a little concerned about amount of low pacing too. I tried 18.75 mg per Doc's recommendation that I needed to be on a higher dose. My arms were falling asleep instead of me at night. I can't imagine taking 100 mg!

Steve

madd-trapper
Posts: 2
Joined: June 27th, 2010, 9:25 pm
Location: Lake In The Hills illinois

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Post by madd-trapper » July 1st, 2010, 9:31 pm

Hi my names Bill just turned 43. Heart attack in 2005, triple bypass and ICD in 2008. Still on the job as a police officer even though the doc's wanted me to retire, the no job/no health insurance thing just wouldnt work out to well. Still run 4-6 miles everyday, ride the motorcycle and still pretty much live normal. had to knock off all the crazy parting, well most of it at least.

Adeanathurston
Posts: 1
Joined: June 29th, 2010, 2:03 pm

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Post by Adeanathurston » July 2nd, 2010, 12:02 pm

Hi my name is Adeana, I am 37, just bought a house in April and am working on fixing it up. Have a little dog named Millie and just love hanging with friends and enjoying life.

I just got my first ICD on June 25th. Still healing from surgery and actually feeling pretty good. No shocks yet, far as I know, going to have a check up next Tuesday to see how it is functioning. Not sure how to feel about the whole thing, it has happened pretty fast. Diagnosed with cardiomyopathy in March, started on blood pressure med and beta blocker at that time. Meds have not increased my ejection fraction, still between 20-25. No definite cause found as of yet for the damage, probably will never know. Hoping the EF will increase, but if not, life is still good and I know my Savior Jesus Christ, so when it is my time, I am ready to meet my Maker. Until then, thanking God for the amazing medical procedures that can be done and the meds that help as well. HE sure made our bodies to be miracle machines, despite the flaws that arise. :O)
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