Theme Parks & rides

[Mom2four85]

Finally after more than a year, I feel good enough to go off with my family....I'm taking a huge plunge and we're going to Disney for the wknd coming up...craziness I know, but we've all suffered enough we need something fun to do - I've been walking abit the past 2 weeks and even fired up my wii exercise programs again a few days ago (my arms and chest burn like mad LOL) spending days at disney used to be no problem for me, but now eh who knows how I'll do

I'm contemplating taking my Inderal - should I take it as a precaution so my pvc's/cp won't worsen while we're active?  and should I take it every 4 hours as directed or just take as needed? there's no way I could call the EP that prescribed it to ask that he won't talk to me :P  

I know there's some things now I have a pacemaker I can't do or ride that I used to do, any ideas?  Anyone have any problems with theme parks with pvc's or PM/ICD's?  I know I can go to guest services and get a lanyard so I can in quicker to places and won't have to stand in line or the heat, any other suggestions?

[Mom2four85]

The burning may also be from inflammation; which happened to me also and you may need an anti-inflammatory to help.

I've had lead problems since the day after I got mine implanted...why didn't they fix it then I'm still shaking my head over.  

The dr's said sometimes the leads are high and will settle down, and mine seemed to.  What changed I don't know....my lead impedence was 809/840 L/R, but then 5 months after implant it went to 848/937 L/R and by April 2010 they were both almost 1100.  I was told I had failure to capture problems, probably from lead or insulation fracture and to come back in 6 months...

In Nov when I go to a new dr, I really hope I don't have to have the device removed and leads replaced - that's open heart surgery and I'm not too keen on having something that extensive done anytime soon, but I have a feeling that's what it is.  

I have so many questions about that too - is there a warranty on the devices, do I have to get the same dr to redo what he botched up to begin with or can I go to a new doctor; another doctor I've trusted and listened to when he should have fixed his mess before it was grown in.

[Pamz]

I have a burning feeling when I am working at my desk, sitting.  Before the icd, my bpm would have been in the low 40's but it's set to pace at 60 so that means it's pacing all the time while I'm at work.  And, it sometimes burns pretty good.  I asked about it at my 3 month check up and they just told me it'd probably go away or I'd get used to it - some people are more sensitive than others.  It feels like it's on the upper left and it started as soon as I got out of the hospital.  At my 1 week check up with my regular doctor, I actually thought it was my lung burning so I thought I might be catching a cold and he gave me an antibiotic.  My son says he doesn't feel anything like that but his pacer is set at 40.  Haven't asked my daughter yet what she feels but she's also set at like 45 and she's only had it a couple of weeks now.  Haven't heard of anyone else feeling that until you said you did.

I hope you don't have a lead misplaced.  Doesn't that eventually mean you'll need another surgery, possibly before your battery change out?  My daughter's was misplaced and she noticed it on day one and they had to move it the next day.  She got periocarditis from it and it was very painful for a week.

Well, good luck and, once again, so sorry about your father.

[Mom2four85]

Pamz, thanks =)  

I wish I knew what was causing the feeling - I can't go to the dr until November after my new insurance kicks in  - after then i'll find out what's going on hopefully

I think mine is cardiomyopathy & LVH and my lead is misplaced, so the tip is touching the inside because the heart has thickened more leaving a smaller space inside (hope that makes sense)

[Pamz]

I'm so sorry to hear about your father.  Cancer is a hard thing on everyone, not just the patient.  

It is nice to hear that you had a great time on your trip, even if you are sore.  You deserve time like that with your family.

I have a question, what causes the burning feeling where your lowest lead is placed?  

[Mom2four85]

Thank you for your kind words and thoughts chuparosa and Cindy =)

I'm sure he knew Cindy; even was even more proud than and I was and I know he died knowing he didn't reach out to me when I sent him cards & letters. I'm just sad he was in pain for so long with Cancer and glad the last time it hit, he went quickly - I wouldn't want anyone to suffer a prolonged time like that.

btw...interesting thing did happen at Epcot - we were walking under the monorail; which says - danger high voltage and something magnetic - my HR went out of control :P

[cindy707]

I am soooo sorry about your dad...my relationship with mine was a little difficult too...we totally clashed but...............Lisa is it NEVER too late to tell your Dad that you love him...and i think a little premature to believe that you will never see him again....no matter what your beliefs are i find it hard to believe that when we are gone we are just planted in the dirt or tossed over the ocean...and no doubt more than that read my profile and you may be able to understand a little more of what i experienced and it did not stay limited to the O.R. believe me.....but you are a wise wise woman when you say leave no rifts in your life...i have a hard time believing that your Dad does not know what you are feeling today....sometimes our destinys are pre ordained for us and maybe we don't understand today what it is about but we will eventually...i loved that movie the 5 People We Meet In Heaven...it hit pretty close to home for me.....i think first we need to learn to forgive ourselves before we can move on....message me Lisa if you need a friend...u know how......

[chuparosa]

Lisa, so sorry to hear about your father. Very sad news. Don't be too hard on yourself. Remember, forgive and try to heal.

[Mom2four85]

I came back from a pretty good weekend to find a message that my dad died after a 4 year battle with Lymphoma, which put me into some serious arrythmia's and a burning feeling where my lowest lead is placed.

I didn't do as good as I thought I would this weekend, even with Inderal but it was alot of fun.  I had chest discomfort and some breathing issues,  but the worst part was my legs! gosh I am so out of shape after a year of not being able to do anything - here's a friendly tip DONT be a couch/bed potato even if you are dealthy sick! :P j/k

back to the serious stuff - I didn't know my dad until I was 14 and demanded to find him; then as an adult we clashed and had a huge disagreement and I moved away from where he lived (AL to FL) and haven't talked to him other than sending Christmas cards since - like 14 or 15 years.

Please do yourself a favor if you have a rift in your life like this - mend it and don't be like me - full of pride and not willing to forgive someone even if you love them - for me it's too late, I'll never see my dad again.

[lasseire]

Have fun, Lisa!! I'm so glad you're going and just keep thinking positive.  Everything will be GREAT and you'll have a wonderful time!  I have to tell myself this sometimes just going to the grocery store - out of fear of getting on the news as well!  Don't let those nasty thoughts ruin your fun!!

Colleen : )

[Mom2four85]

I decided I'm going to take the Inderal; I'm excited about going and don't want to pass up a free weekend of fun! but I'm so apprehensive about going.

Keep your fingers crossed nothing major happens and I don't get my name in the local papers like some do LOL [woman's ICD fires and knocks her off splash mountain! details at 11] I can see it now :P

[Mom2four85]

Jerry :P I chuckled at that thanks hehehe I feel like I'm breaking out! finally - in my mind I'd love to run around the parks again - that used to be so much fun and my kids had a blast; and I'll get back there one day.

Chicky, I found the scooter rentals =) my oldest daughter's b/f works at WDW so I'm going to see if I can get a discount hehehe  

[chicky2001]

You can get a little scooter to ride around on like at a grocery store.  Just call them and see how to get one.  That way you go on the rides easier too.  I rode one at Disney World and had a blast.  My son and DIL just walked along with me.  Have fun.

[Jerry_NJ]

Sorry I can't help with any medication or pacemaker advice but I do send my congratulations on your "breaking out" for some fun.

Good that you are careful, but have fun.

Jerry