Getting ICD on 8/12

[AngelaGP]

Hi, I am new here too. I was diagnosed with HCM about 11 years ago after my mom was diagnosed (I am 37 now). We found out the gene that causes our HCM about 6 years ago. I have 2 kids and thankfully, neither of them are carrying the gene. A couple of months ago, I had 4 presyncopal episodes and saw my cardiologist about it. He said I was having v-tach and recommended an ICD. I didn't want to believe it so I had him set me up with an event monitor, and sure enough, I didn't have any of the presyncopal episodes similar to what I had experienced previously, but I was having some non-sustained vt and svt. So, after several opinions from different doctors, all concurring, here I am scheduled to get one next Tuesday at Johns Hopkins in Baltimore. I am terrified though. The only surgery I ever had was wisdom tooth extraction in 1989! Other than my beta blocker, I rarely take medication--I didn't even take anything post childbirth with my kids! I am so scared that something awful is going to happen that I have lost about 10-15 lbs in the last couple of months worrying over this whole thing, and I didn't have a whole lot of weight to spare to begin with.
I am currently unobstructed with a septal thickness of about 2.6. If anyone has any words of wisdom regarding the ICD/surgery, I would appreciate it. I am really glad to be able to talk with the other people on this board going through the same things. It can feel so isolating sometimes to be going through stuff that most people are not--does anyone else feel this way?

Thanks so much!
Angela

[AnnetteP]

It can feel so isolating sometimes to be going through stuff that most people are not--does anyone else feel this way?

Yes, often! That is why we come here; to be with people that understand and have been through it.

Surgeries differ from doctor to doctor and hospital to hospital. You will most likely arrive early in the morning, have the surgery, spend the night and then go home the following day. In my experience, there was pain in the shoulder area where they had to “make a pocket” for the device. (I am thankful the devices are MUCH smaller than they used to be!) I took the Percocet they gave me and was able to deal with the pain. You will need a few days to recover at home also. Just listen to your doctor and follow his/her instructions and you will be back to normal in no time.

Since you have had presyncope episodes and have documented VT and SVT, I think you are making the right decision. By the end of the month, you will be wondering what you were so worried about. AND you will have the peace of mind that comes with knowing the device is there whenever you need it.

Best of luck to you!!
Annette

[Reenie]

Hi Angela. I'm sorry you're having to go through this right now. Annette gave good advice already. In my husband's experience they didn't keep him overnight, which I think is unusual, but they did prescribe darvocet for the pain. He said the pain was tolerable with just tylenol and we never even filled the prescription. I'm sure you will have so much less anxiety once this is all over with.

On a side note, I'd like to know about your surgery when you've completed it. My husband will probably get his ICD replaced around December at Johns Hopkins and, although I've visited the facility, I don't know much about the surgical part. Any observations or thoughts you have would be helpful.

[AngelaGP]

Thanks so much for the advice. I know that they are keeping me overnight so I think that is probably a good thing. I am allergic to acetominophen, so that is sort of a concern as well.
I will definitely let you know about the situation at Hopkins once I have everything done. My cardiologist is up there in the HCM ambulatory clinic at the outpatient center and I was sort of going back and forth between having it done here at a local hospital or Hopkins, which is about an hour away. I felt a little more comfortable with the EP doc/surgeon at Hopkins and had a great experience when my son who is now 3.5, had surgery there to separate conjoined fingers and toes at 6 mos and then again at 18 mos.

Angela

[Reenie]

Thanks for the information. We were debating about local doctors vs. Johns Hopkins too, and have decided since they have more expertise at JH we'll go there. We will continue with a local cardiologist in the meantime if we need to see someone or for ICD checkups until the replacement. I live in southern Maryland.

[java.jane]

Hi Angela,

It looks like I'm sort of in the same boat as you, just living it vicariously through my 13 year old son who will get his ICD put in a week after you. I'm trying to learn more about the surgery and the what to expect afterwards, just for some peace of mind.

I, too, am thankful for this site. Best wishes on your surgery.

Hang in there,
Alisa

[BAK0226]

Angela...I just got my ICD two weeks ago. I, too, was a nervous wreck. I fought getting this for the last two years. If I only knew how easy this would be! I am telling you, this was a piece of cake. No kidding. If you had two children (I have 3) you could do this standing on you head. (not that you'd want to :) TRY not to worry, you will be just fine. An yes, I think alot of people feel isolated at times, I know I do. But there really are people out there that do understand. Take care...Barb

[mbcube]

I echo what everyone else has said - It an easy operation & the recovery might be a bit difficult depending on your situation. You can be limited on arm movement/lifting and driving for a period, so check with your doctor and ask LOTS of questions.
You'll be fine.

[AngelaGP]

Thank you so much for the vote of confidence! Barb--that makes me feel better--I was chuckling at your comment! Thank goodness for this site and all of you guys!

Alisa--best of luck with your son. I can imagine what you are going through with it being your child. Both of mine have had different health issues and surgeries, so I can sort of relate. It is so tough when your "baby" has to go through surgery--I think that even at 37 my parents still sort of feel a little that way! Hang in there too!

Reenie--I am close to DC. The good thing about Hopkins is that they told me that once the ICD is in, I could see an EP closer to home on a regular basis.

Thanks so much guys! You have definitely made me feel better!

Angela

[Pam Alexson]

Best wishes on the implant Angela. We are all here for you.


Pam

[kathyn2]

Angela, I am glad you are getting the ICD soon. I was in the same position as you. I had a black out or 2 and wore the monitor for a month but actually on the first few days they discovered I have svt and vt episodes and wanted me to get an ICD asap. I got one about a year ago. I always prayed it would never go off and wondered if I really needed it and yesterday it zapped me! Pretty scary for me and I don't know much about it but it may have saved my life. I am going Tues to have it interrogated to see exactly what happened. I think I got the lower jolt because it did not knock me to the ground. So far, so good today but now I am living in fear of getting another shock. :-(

[AngelaGP]

Thanks so much for the encouraging messages. Going in tomorrow--trying to disctract myself with the kids today so I don't completely freak out!

Oh my Kathyn! Let us know what comes of the interrogation! I can imagine how frightened you might be. I will be thinking of you!

Angela

[Reenie]

Angela, we'll be thinking of you tomorrow.