Need some advice please..

[emopunkcore]

My name is Chris. I am a 21 year old male. I currently live in Lyndhurst, NJ. I have HCM. I have a Medtronic pacemaker/ICD pacing my heart 100%. and I am taking Flurocortizone(sp?) and Tenormin(sp?). I also take Lexapro. I guess you can say that after having a pacemaker implanted I didn't feel all to good about it. Now it's a year later. I have had the pacemaker "re-pocketed" because it was growing out of my body. I am 6 feet tall and weight 155lbs. Needless to say, it sticks out like a sore thumb. It recently went off about a week ago. It was the scariest thing I have ever experienced, because I was not exerting myself. I woke up from sleep, turned off my alarm, and went back to lay down. Then I got shocked. I spent the next day doing nothing, scared to move, get out of bed. Also I work two jobs, and roughly around 60-75 hours a week.

As it is now, I barley go on vacation. I have sworn never to goto the beach for I don't want to be seen without a shirt on. It tends to be a problem in the summer, and with girlfriends/girl in general. Everyone says "It's not a big deal." "No one will notice" "You can barely see it." "Don't worry about what other people think." But to tell you the truth, none of it helps. I can see it. I notice it. I know it's there. I have to wake up with it everyday, and go t sleep with it every night. I know it's supposed to keep me alive, but I don't think this is living. Maybe I never accepted who I am, and what I have. But I don't want this.

I am trying to find another way. Something that will help more. That won't make me feel soo alien. It may sound childish, but I want to control my own heartbeat, without the help of anything. I know there are other (risky) options. As it is right now, my doctor won't do anything but a pacemaker. He doesn't want to believe in depression linked to the implanting. Or that I'm tired because I'm depressed, because I have this. He won't even think about alcohol ablation, because he doesn't want it to leave scar tissue. I don't really know much about any procedure so I buy into whatever is told to me. All I know is that I want to try something else.

Being that it paces my heart all the time, plus administering shocks as needed. It will need to be replaced every 3-5 years. I originally didn't want it done, but I needed to buy time until I could research other procedures. $35,000+ every 3-5 years in medical insurance money is a lot. Plus if I didn't have a job with insurance, I'd be in trouble..

I don't really know what to ask for. I guess I want to know if anyone knows where to turn. I don't want to goto somewhere to "be ok" with what I have now. I want to go somewhere where they hear me out, and try to do something about it. I know the risks that are attached to any steps up. But it would be a major disappointment not to try.

Thank you for reading.. :(

[Largehearted]

Hi Chris.

Thanks for letting us in on your difficult times. It sounds like you are carrying a heavy load just now, so sharing with us will hopefully lighten the load just a bit.

I wish I could give you information on what to do to alleviate your pacing/ICD needs, but I have no idea how to do that. It took me a while to get used to having my device, but I never felt as strongly as you about not wanting to have it. So now I rarely think about it.

When your device fired were you able to get it checked to see if it was an appropriate discharge? I can well imagine that would be a scary experience. So far I have been lucky.

What other "risky" options are out there for pacing? I don't believe I know what you are referring to. Have you been able to get a second opinion?

I wish you all the best and will pray that the depression will not be so heavy for you. Please check the board often and feel free to vent. Also you can call the HCMA office and speak with Lisa. She is a wealth of information and very helpful when it comes to HCM issues. The number is at the bottom of the page.

Peace,

Leon

[Midge Rollins]

Chris, depression is very normal for all that you are going through. In todays age however your Dr. can help you and prescibe something to raise the seratonin level that will help with depression. I had both a ICD and separate pacemaker. I too at first was self conscious as the ICD was huge. But after a while I said to heck with this and wore whatever I felt good in. Even now at 58 with scars up and down my chest I am not embarrassed. Hang in there. If you are pacing 100% you need that device. Remember your life is more important than anything.

[Pam Alexson]

Chris,

Welcome. I am sorry to hear of your difficult times and struggles. It is something we all face but deal with uniquely for our own selves . Our stories are just that "our stories." From each other we often garner a sharing and a feeling of relating to someone elses struggles but we have to find what best works for us. To say no one has felt the way you describe would be that maybe we were in some sort of denial when we felt that way. It can be tough for a bit . I remember that for awhile( long enough) when I first got my device after my diagnosis and many tests , poking and proding , I felt that this could not be life . I had reviewed what I had planned in my mind for my life and this was certainly not in the plan. I had found this site( I do not believe it was set up like this back then and it was more for information) and really did not think anyone could help me process this whole thing or come to terms of acceptance ( at that time that is how I truly felt). I was not going to risk someone telling me I may be wrong . So I went away from here for about a year or so .

By that time my doctor was telling me , he was sorry but there was nothing presently available to help me. I felt worse and wished the earth would just swallow me up. I was mounfull of all that was my life with HCM. I hated it and , I hated me.

Some months passed and my son ( my youngest ) confronted me about my hopelessness. He begged me/ challenged me to once again dig in and try to seek another avenue of help . I did , I called Lisa Salberg, ordered the book she co- authored, talked to her, got a referall to someone who could offer me hope, read the book and began to finally come to terms with what I hated so much; HCM.

Chris, you will find here that we do not like or love HCM , we have just tried to learn to live our lives around it, instead of it being the center of our lives. Somedays it is the center of our lives , But I and others try to find perspective so it does not control us 24/7..this has taken a long time.

I noticed that you take Lexapro. It is a serotonin reuptake inhibitor, maybe you could first talk to your doctor about the doseage , and it may need increasing, or if it is not working then another form of the med. It is not uncommon for these feelings of depression to take some time to work out and to take meds for a period of time to help get through the rough times. You have HCM and you need help to learn to accept all aspects of the disease. This does not happen in a short time and without help. We are all here to help you also , so please stick around, ask questions and give feedback to others as well. Talking and sharing can only help to dilute some of the intensity that you are now feeling.

I know this has been lengthy but, I wanted to explain as best I could in order to try and help.

Best wishes to you. Pam

[Toogoofy317]

I too was diagnosed with this disease at 21 (just turned 25). I got my AICD at 22 , am paced 100%, and also take fludrocortisone for low bp. Is that what you take the fludrocortisoe for?

I was very angry too. This disease ruined the life I had. Now I've had to make a new life. And yes I grieved for my old life of working all the time going to school and being able to hang out with my friends. I remember the first time my device was interrogated I was very anxious about someone else having the power to control my heart. I mean what if it got into the wrong hands. Believe it or not I thought about that.And now to make it worse I have one of the defective models that is going to need replacing about three years early.

There is not a day that goes by that I am not reminded about my hcm. But, I decided that there were other things I needed to be reminded about daily and that is I'm alive!

Unfortunately, I don't think you will be getting rid of this device anytime soon. Esp if you have appropriately been shocked. No doctor in their right mind would do that because of malpractice. Their creed is first do no harm and if they removed the device they could be doing just that. I believe the only way to be shed of a device is through transplant. Then I think you still keep the generator for a year in case you need it then it is removed.

Sorry not to have given you an answer you wanted to hear.

Mary S.

[karen cicconetti]

Dear Chris

Being depressed is very common. My son even though he is only 15-14 when he had his ICD pu in he was very depressed. He felt just about the same way you do. He never took his shirt off last summer he didn't feel like he fit in any more. This year he needed it replaced because of a recall. Before he had it done he was so miserable angry all the time but I am hoping tha since it has been changed he will be himself. As for the depression we spoke to his doctors who found people who were going through some of the same things and he spent alot of time talking to them and finally began to feel better. He still hates the scar but the girls think it's cool. I quess at fifteen thats all that matters.I had a pacemaker and then a transplantI hated my scars but loved my life and would do just about anything to stay alive. You have found a great place for resources. Everyone here will do everything they can to help you.
But the first thing you need to do is call Lisa. I live here in Jersey not to far from you so if you need to talk let me know.

Karen

[Sarah]

I think you would find it helpful to be seen by either Dr. Barry Maron (the co-author of the book on HCM), his son (in Boston) --you may find the rapport with a younger guy better--.

If anyone is going to have alternatives for you, it would be those guys. And they will give it to you straight.

Also, depression around this is very normal --also the Tenormin can cause depression, so you may want to see about changing to a calcium channel blocker if that would work for you.

And while you say you don't want to "be ok" with what you have, you still need to learn to be ok with YOU. The reality is that you will have HCM with or without an ICD. No ICD just makes it easier to ignore. If you are not ok with having HCM, no treatment will be enough to get you out of being depressed or unhappy.

It sounds like a silly self-help book, and it may be, BUT I was furiously angry about my HCM until I read "Why People Don't Heal and How They Can," by Caroline Myss. It gave me a perspective on my health that allowed me to come to terms with having HCM. It is not specific to heart conditions, but it doesn't have to be.

All I'm saying is that while you pursue all your medical options, also think about how you feel about yourself and your self image and what it is linked to.

good luck,

S

[emopunkcore]

I want to thank you all for your input. It makes me feel a lot better knowing that there are people out there going through the same thing. I'll try to answer as many questions as I remember being asked. I was prescribed florocortisone for low blood pressure. My normal blood pressure used to be 80 over 60 at the highest. I take Lexapro at the highest milligram which is 20. Some days I could go without thinking about my HCM. Not even knowing that I have an ICD. But other days, and especially in the summer I really feel the weight of the disease. It bears down on me so hard. Everyone is out, going swimming, getting a nice tan. And I don't. I know it's all in my mind, and I really shouldn't care what other people thing. But it's something I can't NOT think about. I am pacing 100%. I had about four heart murmors before getting my ICD. With my last check up, my doctor had said that he didn't hear any. Which is good news.

As for my shock. It was unexpected. But I called my doctor that day. Being that I just turned 21 I was out the night before with some friends at a bar. I didn't drink much at all, but somehow I got sick. My doctor had said that the alcohol may have made me dehydrated, and could make my heart not beat to the "right" rhythem. That is the reason I had gotten a pacemaker in the first place. When I had my halter monitor on, before getting my ICD, they found that my heart skipped 4 beats in a row. The week after that I had went in for the operation.

I'm thinking that maybe a second opinion is what I need. For some sort of closure. Even if I get told the same thing. That this is as far as they want to go right now. I just don't know which doctor's in my area are the best with my condition. If anyone could let me know of any doctors in the northern nj area, that would be much appreciated.

Thank you to everyone again. I know that if I ever have a question or problem I can always come here. This is a great place for anything and everything relating to HCM.

[Largehearted]

Chris.

By calling Lisa at the HCMA office you can get the best info on where to turn for an expert second opinion. Take crae.

Leon

[Sarah]

Yup, Lisa likes to give referrals over the phone as they are based on more personal info than you may want to share on the board. Give the office a call to make a phone appt with her. She also has an ICD and can talk to you about coping with them.

As for drinking, yup. It is bad. It makes you dehydrated which in turn makes the heart work harder and more likely to screw up.

Please drink more water and keep us posted.

S