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New Member & Newly Implanted

WandaJ
0 Recommendations

Greetings, all.
I could use some support.

In July 2008 I was diagnosed with Idiopathic Dilated Cardiomyopathy (DCM).
In January 2009 I was diagnosed with Left Ventricular Non-Compaction (LVNC).
On April 19 I experienced several PSVTs which sent me to the emergency room.
On April 21 after even scarier heart events I received an AICD.
The incision site is healing beautifully.

However, I now suspect I am suffering from anxiety and stress, and of course am hypersensitive to anything connected or related to my heart.
I am the first one in my family diagnosed this specifically, and I am the first with an implant of any kind.
We do know this is familial, since at least five members over four generations died from CHF and/or SCD, the most recent in 1996.
Cardiology has come a long way since then.

Specifically right now I am feeling palpitations and an increased need to take deep breaths and yawn.
With no fluid retention (ankles not swollen, weight holding steady) and no fainting, dizziness, or light-headedness, I strongly suspect anxiety.
My cardiologist is 2 hours away, and I don’t want to make too many trips in to see him because it wears me out.

So yes, I am feeling alone, and feeling the need to connect with others who have gone through something similar.
The doctors are good about telling you to take care of the incision site, but terrible at connecting you with an emotional support group.
I’d like to know the emotional rollercoaster will settle out, about the highs and lows, about anxieties and stresses.
I live in MN, so e-mails are welcome, with the added benefit of being able to re-read as needed.

I know someone out there has been here and triumphed.
I'd just like to hear her story.

Sincerely,
Wanda J
wkothlow5191@charter.net

Explore topics in this discussion:

Exercise Heart disease Heart transplant Heart failure Dizziness Surgery Bypass surgery Paxil Cardiomyopathy Anxiety Beta blockers Menopause Pain Pacemaker Stress

20 replies

ckgoduto

Dear Wanda,
Welcome with open arms to our WomenHeart site. You will get all the help and conversation you desire here.

I too have dilated cardiomyopathy and problems with my lower left heart where it does not beat in sync. (left branch block).

I had my ICD implanted on April 21, 2008 exactly a year from your implant. Today I had my one year electrophysiologist exam and everything is working very well. No new settings, no new meds ----------I have not had any problems with the ICD in the past year. It never has gone off and it is doing a great job. I feel more secure knowing that it is there if needed.

Any time you want to talk there will be someone here for you.

Another heart sister,


Christine

Nancy-in-KC

I had my ICD implant on April 6th, but mine was put in for Vtach episodes likely due to scar tissue from my surgeries. I am healing well, still a little swelling, and getting used to being on beta blockers. It is an adjustment. Welcome!

Nancy

Katz

Welcome Wanda -
I have not had an implant, but have other heart issues. Just wanted to let you know that I care and will be here to listen and support you whenever you need it. I have been so grateful to these women. I have learned so much about heart health/disease from them (things the doctors don't tell you - like you will always suffer from fatigue!) The doctors tell you that you will be fine, but they don't say that you will be different. These ladies have helped me find my way and lifted me up on very low days. I don't write much, so they probably don't know how much support they have given me. I hope being part of this group will help you.

Scottie

WandaJ

Thank you, Heart Sisters!

Wow, Christine - April 21 must be a red-letter day! I'm so glad things went well for you and you had an awesome report! How long ago were you diagnosed? And how long did it take for you to get through most of your adjustments? I'm still trying to figure out how deep my anxiety is, and on what my anxiety is focusing. Even with the assurance the ICD brings, there are so many changes, and I suspect most of those are psychological.

Nancy, April has been a busy month! My incision site is "beautiful" according to the gal who did my second interrogation and my CNP. Most of the swelling is gone, as is most of the tenderness. Last week my Medical ID necklace came, so that brings another level of security. My laminated ICD card came in the mail yesterday, now I'm just waiting for the communicator. So what have you done to help yourself through the emotions and mental adjustments?

Scottie, I truly appreciated the comment you made about being fine yet different. How true! And I am just beginning this journey! What were some of the changes you noticed in yourself? How were you different? What adjustment did that difference require you to make? If you don't want to reply to group, please reply to my e-mail.

Blessings to each of you.
Wanda

ckgoduto

Hi Wanda,

Just wanted to answer your questions. I was diagnosed in July 2006 (july 27th) and the first year I was a basket case. Not only was I diagnosed with dilated cardiomyopathy but my husband was in the hospital too. I had to keep it a secret from him because he is too fragile to cope because of his mental condition. At that time they wanted to place him in a nursing home and forget about him, but i changed doctors and now he can at least function. He is not normal, but he can function. He remembers things from 50 yrs ago like it was yesterday and yet he does not know what day of the week or date on the calendar we are on. I think I really started to feel more at ease with my life after the implant and after the complications of that hospitaliztion. (I picked up one of those infections from the hospital - C-Difficile). Hopefully I will feel even better when I see my doctor at the end of May.

Nancy-in-KC

Wanda,

As you see from my profile, I have been dealing with "heart" issues all of my life. This was another bump in the road that I am taking in stride, thankfully without too many emotional issues. I have a small, but supportive family, a great job, wonderful friends, and my wonderful heart sisters, all which keep me focused on living each day with positive energy. Not that I don't have a few down days every now and again, but they are very few and far between. Again, welcome to this wonderfully supportive sight!

Nancy

WandaJ

Thanks, Christine.
In church circles the joke is that we can all look on the bright side of things, since Moses was a basket case too!
Since it's now been almost three days that I've had the palpitations and need for deep breaths, I did call to set up an appointment tomorrow with the local clinic. I'm hoping they can at least help me figure out if this is physical or psychological (anxiety). If they suspect something one way or the other,I'm going to ask that they contact my cardiologist's heart clinic to talk to a CNP or PA before we take any other course of action. No new meds w/o my dr's approval and so on. I see my cardiologist May 20, and I also have an appointment May 11 to see my counselor, whom I had been seeing for work related issues. This was going to be my graduation session, tho now with this new development in my life we might go another three or four sessions.
Who knew things could get so involved? As Scottie said, physically we may be fine, but we will definitely be emotionally & psychologically changed and different.
I hope all goes well for you at the end of this month!
Wanda

WandaJ

Thanks, Nancy!
One gift I noticed you have, which is a tremendous blessing, is your sense of humor! Partridge in a pear tree, indeed!

I've often considered myself an optimist, glass-half-full kind of gal, and do try to find the bright side of things. I try not to panic, and even in dire situations I try to put others at ease, particularly thru humor. So I went into the ER on the 19th knowing I would be receiving my ICD, and trying to keep my spirits up thru the entire event.

Now that I'm home, I want to get to whatever the new normal will be for me, but I suspect I'm subconsciously feeling pressure to get back to work. That can't be helping the situation.

So, now that the appointment is made for tomorrow morning, I think I need to let go and rest for the remainder of the day. Maybe cuddle with one of the girls (see photo) or take a walk around the house outside. And then maybe I need to let my friends know what's been happening, since they all live at a distance none of them have heard my recent news.

Blessings to you and your family, Nancy!
Wanda

laurali

Hi Wanda -- Today (May 6) is the 3-year anniversary of my ICD implant. I had mine done on a emergency basis after having 3rd degree heart block in the middle of the night. I was in the process of cardio related tests during this time. The whole thing was a complete shock (literally!) to me as had no family history or previous problems. I was in great physical shape, walking 2-3 miles per day, etc. I had a lot of anxiety at first. My cardiologist put me on a very low dose of Paxil before I left the hospital. Even so, it took about 2 weeks for that to kick in. I was hyper-sensitive to changes in my blood pressure, and worried that I would get shocked while home alone. My family was: "She's got a pacemaker now --she's cured!" which, of course, is not the case! I did have one great role model -- the young women who was my personal trainer at the gym. She suffered cardiac arrest at age 22 while playing college basketball and had an ICD implanted. She continues to do really well and is back playing ball.
Anyhow, I got right back doing all my regular activities and made sure I got all the follow-ups for the ICD and meds. Saw my cardiac continuing care person every 3 weeks for awhile, which helped a lot. Within about 6 months I pretty much forgot that the device is there I have had a couple of ups and downs but for the most part I feel great and do everything I did pre-ICD! I'm glad you found this site (as I did about 4 months in). I also was diagnosed CHF at the time with EF at 30% but within 1 year of being on meds, I'm now considered "normal" in that category! If your anxiety is bad and continues, I'd recommend Rx. They really do help and in the long run anxiety is not good for your heart. Things will get better and the hyper-sensitivity will fade with time. Take care! Hugs, laurali

Katz

Wanda -

Probably the most pronounced difference in me after heart disease is fatigue! I deal with that by resting more (not always possible). I still work full time, so work gets just about all the energy I have. I have learned to "pace" myself. Chores that I once would have done in a couple of hours are now spread over several days. (Once in a while, if it is a good day, I overdo). When I do that, I completely run out of steam and have to rest. I have heard some of the other ladies call it "hitting the wall" - just can't go any longer. That is very frustrating as I was always very energetic and did whatever I wanted. It has taken most of the 2 years since my bypass surgery to come to terms with that change.

I have to tell people "no", I can't do that. I hate saying those words. After all, I look normal and healthy, so I'm not sure anyone (especially family) understand. I also live with a certain amount of fear - fear of another incident, fear of not waking up in the morning. I was lucky the last time. I went to an ER where they took my symptoms seriously, found the problem and performed surgery. With time, those fearful thoughts don't come as often as they did. Time does help, but they will never go away completely. I have actually become rather selfish. After a lifetime of putting others first, I have to put me first. I have to take care of myself. (refer back to saying "no").

I have learned to take things one day at a time, sometimes, one hours at a time. I have learned that I have no control over anything - life just happens, I try to just go with the flow. Before this life changing disease, I was foolish enough to think that I could control some events. Now, I know that all I can do is make the very best of whatever happens.

Oh, I also try to remind myself that I am still a living and breathing woman who can laugh, love and share, not just a heart disease patient. I am still someone's wife, mother, daughter, sister, friend, just like before, only different!

Scottie

susiet

Hi Wanda - I had my pacemaker implanted in August 2003 and it was upgraded to an ICD in October 2006 because of VTach and an EF of 37%. I was fine mentally with the device until I got my first zap (April 2007). Then, just about the time I forgot that I have my ticker zapper, I got zapped again (February 2009).

It has changed my life. I don't like to walk anywhere by myself because I'm afraid I'll get zapped. The last time I got zapped, I had just sat down in my car in the parking lot at the train station after work. It took about a week after I went back to work to feel comfortable walking to my car. I'm OK now, but I'm always wondering when and if it's going to happen again. I'm OK if I'm with people and didn't have any problems when we went to Italy about a month after my first zap, so I know I can do these things. Sometimes it's just hard.

This site has been wonderful. It's very comforting to know that I'm not the only somewhat-young (early 50s) woman with these problems. The support that these heart sisters show for each other is amazing.

I also know that the alternative is not good, so I'd rather have my zapper than not, but I think doctors need to realize the psychological toll that heart disease can cause. I mention this website to my doctors and nurses whenever I get a chance. Because unless you've experienced heart problems, you can't really understand how we feel.

It can be difficult to deal with. I just try to keep a positive outlook and understand that I'm not the same person that I was, but that's OK. I'm alive. I also work with an amazing group of people who have supported me through this journey and pick me up when I'm down. They may not understand what I'm going through but they have always been there for me.

Sue

kathybg

Wanda-is your implant anything like mine, I have a pacemaker w/defibrillator. Either way, I know what you are feeling but you are not alone no matter what your heart condition is. So many of us are out here facing the same fear, anxieties, dealing with the same emotions and frustrations but we are all in this together & we're here for you. I felt very angry & isolated after my implant but for much different reasons-my 1st dr. put in the incorrect one for my condition which I didn't find out til 3 1/2 yrs. later. Didn't care for her blowing me off regarding my continued symptoms so went to another dr. at different hospital in my area. Symptoms continued and worsened for 3 yrs-1st he told me it was menopause, then stress, then I'm out of shape & should exercise, then finally said I need a psychiatrist! Finally had enough, listened to my body thank God and went back to the teaching hospital that did my open heart when I was a kid. I am now 48 and on list for heart transplant because the 1st pacemaker ate away the good muscle left on one side of my heart like pac-man, teaching hosp. switched implants hoping to reverse damage but too late. So you see-may have different condition/experiences but our reactions/feelings and challenges are the same. Write me back ok, would like to know more about your situation and implant, maybe I can help how you're feeling. Til then, stay strong & positive, believe in yourself, Kathy

Patybluetx

Hi wanda and welcome!

"However, I now suspect I am suffering from anxiety and stress, and of course am hypersensitive to anything connected or related to my heart"

Man do I feel you on this one! I was a complete mess after my heart failure mess and had to do some intense therapy and I highly recommend it! It did wonders for me to not only deal with my heart issues and the loss I had but past unresolved issues as well. It's really been a wonderful experience and a key component to my recovery. On top of that I found this site where I found a unique support system of wonderful women that have gone through similar things. I hope this site is as healing as to you as it was for me.

((HUGS))
Martha

Julie5

Hi Wanda,
You've gotten some great replies from this website, so I'm not sure I have anything new to tell you. I have an enlarged left ventricle and also non-compaction. I've had an ICD for about 2 1/2 years, which was implanted because I went into Vtach. I did get shocked - 5 times the first time and 19 in a row the second time. I was frightened and wanted to rip the thing out of my chest. It is not pleasant to say the least. But, that happened when it was first put in and I've been fine since then. I'm on 3 meds, and am pretty active - hike, bike, jog, walk, do yoga. It took me a while to adjust to the meds, but I'm feeling pretty good these days. The anxiety you feel will dissipate with time and you'll come to understand why you have the ICD and the freedom it gives you. Give yourself time to adjust to all of this and be good to yourself. If you've never done "selfish" things for yourself, this is a good time to start! :) This is a great website for support. Keep writing in.
Julie

sunshine3D

I don't feel NEARLY as bad now as I did a few months ago..............TODAY MAKES 9 MONTHS SINCE ICD IMPLANT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I'm thankful to be here.
It has taken quite some time to feel more normal. I still tire easily but have learned to listen to my body. When I'm SOOOOOOOOOOOOO tired, I rest. I am working full time (40 hrs. wk.) now, which I was beginning to wonder if I would actually be able to do. Unfortunately, I am still not able to exercise very often, due to lack of energy. I feel like I must preserve my strength for what is necessary, like getting supper, getting ready for another day, getting ready for bed........but not always exercise. I'm looking forward to improving on that issue.

Keep being positive and trusting in God, ladies...that's our ONLY hope.
"I can do all things through Christ which strengthens me." Phillipians 4:13

Sunshine in 3D

nanamo

hi wanda and welcome to such a love and caring site
i had a massive mi and bypass surgery in 1999 at the age of 32 and just last year i got and icd which i named trigger the ladies got me to name it all i can say is take one day at a time and go from there i have agreta loving family and they are my will my everything also my major thing is i control this disease it doesnt control me....... lifeis fun and even though we live with deadly disease and have major hardwrae in our body doesnt mean we are dead we are so alive and you shoudl live that way
once again welcome


god bless
surviving heart disease one day at a time
with trigger 04/08
for 10 years now
nanamo

WandaJ

Dearest Heart Sisters,
WOW!!! Do I feel your hugs!!! Thank you so much! The good Lord definitely blessed me when this site came up during a web search for support!

Thank you for sharing your stories, frustrations, journeys, victories and triumphs. I have some more news to share (mainly good news), and will post that separately.

Hugs to each of you: (((YOU)))
Wanda

heart39

We're all here for you...

- Peg

jeanncnc

i was diagnosed with idiopathic cardiomyopthy in dec 08. ejection fraction 20% I am now at 25% but not good enough . Next week i will get a defib and pacmacker placed, not looking forward to that at all . i guess i am still in denial. like many of us on this site , i have ideal weight , watch what i eat and exercise.

kathybg

Please let us know how you make out-my 1st pacer was replaced with a defib/pacer in 2007 & that's working well. Don't really feel the benefits of it though except yes I am alive. The 1st pacer, put in by another Dr/hosp. was the wrong one for my condition & proceeded to destroy whatever good heart muscle I had left. The 2nd pacer is doing the job but damage was already done-am in severe heart failure & on transplant list for 17 mths now at ripe old age of 48! It's cool though-could be worse. Am waiting at home, keep occupied w/home, reading, crafts. You will be fine next week-just make sure you take it easy and give the site time to heal & don't go lifting anything!! The only problem I have is an aching pain at times at the incision site due to scar tissue from 2 procedures on same spot but not a big deal. You shouldn't have that from one. The scar bugs me though even though it's not big-have a long up & down scar from the open heart surgery when I was 12 & that one never bothered me, made me look like I had more cleavage than I do!! The pacer scar messes w/the look-oh well. Take care of you, you are in my prayers-Kathy

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