Guest guest Posted January 25, 2001 Report Share Posted January 25, 2001 In a message dated 1/25/01 3:47:42 PM Eastern Standard Time, Scherb@... writes: << Last night when checking the kids Garry came and got me. JJ was laying on his tummy, legs bent up to his butt, elbows on the bed, hands on his cheeks, sound asleep. It was so cute! Garry picked him up, laid JJ on his back, he never even moved his hands. What a kid. >> Ahhhhhhhh! How cute ! Should have got a pic of that to post. :-) Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2001 Report Share Posted January 26, 2001 In a message dated 1/25/01 3:47:47 PM Eastern Standard Time, Scherb@... writes: << Last night when checking the kids Garry came and got me. JJ was laying on his tummy, legs bent up to his butt, elbows on the bed, hands on his cheeks, sound asleep. It was so cute! Garry picked him up, laid JJ on his back, he never even moved his hands. What a kid. >> Oh how sweet !!!! Get a pic? Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 ita, Welcome to our group. Sorry to hear about the ICD, but than everyone here isn't Glad we have it. Let us know the circumstances surrounding your unit. JCB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 welcome and god bless juanita..... bob in pa --- [This E-mail scanned for viruses by IAS, an Archiventure Company] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 Hi Chet - I'm new to this group -- just had my ICD implanted last Wednesday and get my staples out tomorrow -- we ended up going to Target and getting one of those "chair pillows"? (my husband calls them "husbands" -- they are like a pillow with arms.) Then I put other pillows on top of those to make it comfortable. Last night, for the first night, I managed sleeping on my right side with pillows propped under the right side of my body. I'm with you -- I hope that part gets better over time -- I am a definite side sleeper! Anyway, good luck as you search for the perfect sleeping option -- let me know if you come up with other good ideas! ita Stow, OH Sleeping positions Chet, for the first few weeks I slept in the recliner and found that helped a lot. It was much easier to get comfortable. Please visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 Hi JCB -- Thanks for the welcome -- I thought it was pretty cool that a group like this exists! I'm a 35 yr. old female -- married (6 years last Friday) and have one daughter - will be 5 on March 27th. I was born with Tetralogy of Fallot (hole in the heart) - had a stint put in when I was 2 and then had corrective open heart surgery at age 7. When I was 15, I had ventricular tachycardia and they had to use shock paddles to slow it. They controlled it by medication for awhile, but the meds had LOTS of side effects, and eventually I stopped using them. Surprisingly, I have gone 20 years now without ANY problems -- went to college, got married, had a baby etc. AND cardiac check ups have gone fine throughout the 20 years. Then, suddenly without warning and no apparent reason, went into extreme ventricular tachycardia in late February (the 25th) -- was rushed to emergency, had to be shocked again to slow the rhythm. Then had several EPS studies and several medication trials, but I guess with some TOF patients, the scar tissue as they age creates electrical problems and my doctor was able to keep finding new arrhythmia's during the EPS study, so decided and ICD was the best option - especially since I'm only 35 and hope to have many more years to enjoy my family! I'm glad that such life-saving technology exists, but after 20 years of no problems, this whole heart thing is a bit of an adjustment. So far, mine is not giving me a lot of problems (other than the normal discomfort from surgery), but I also just started on Toprol and find myself drowsy and having shortness of breath in the evenings, so don't know if that will have to adjusted or not. I get my staples out tomorrow -- woohoo! The highlight of my week was being able to shower on Monday morning!! (Do you all remember that first wonderful shower after not being able to take one for 5 days?!!) I've enjoyed reading the posts on the board and think it's pretty cool to be able to talk to other people who can really understand what it's like (not just from a textbook. - ) Looking forward to getting to know you all better! ita Re: Sleeping positions ita,Welcome to our group. Sorry to hear about the ICD, but than everyone here isn't :)Glad we have it.Let us know the circumstances surrounding your unit. JCBPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 Thanks, Bob - glad to be here. ita Re: Sleeping positions welcome and god bless juanita..... bob in pa---[This E-mail scanned for viruses by IAS, an Archiventure Company]Please visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 ita, Boy, I sure do remember being able to get that first shower after implant. Thanks for bringing a big smile to my face. And welcome to the group. Tom in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 I tried that, but can't seem to fall asleep. I tried the pillow that was suggested in an earlier post and that seems to work okay. Chet Sleeping positions Chet, for the first few weeks I slept in the recliner and found that helped a lot. It was much easier to get comfortable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Chet - I'm new to this group -- just had my ICD implanted last Wednesday and get my staples out tomorrow -- we ended up going to Target and getting one of those " chair pillows " ? (my husband calls them " husbands " -- they are like a pillow with arms.) Then I put other pillows on top of those to make it comfortable. Last night, for the first night, I managed sleeping on my right side with pillows propped under the right side of my body. I'm with you -- I hope that part gets better over time -- I am a definite side sleeper! Anyway, good luck as you search for the perfect sleeping option -- let me know if you come up with other good ideas! ita Stow, OH ----- Original Message ----- ita, So you had yours implanted the same day I did. How do we celebrate this? Where do you place the chair pillow? Tell me more, please. How is the pain in your chest and shoulder? Chet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Chet and Hi ita. Welcome to a group of really priceless people. We come in all shapes and sizes, ages and backgrounds. Some have ICDs and some are related to those who have them. What we share is our support, especially when one is facing surgery or is depressed. We share our knowledge and often opinions. We share our experiences, and our (alleged) humor. We are delighted that you are sharing this part of your life with us. Welcome. Although all this is very new to you, and every day (or hour) you are wondering when the ICD is going to go off and what its going to feel like. (like its a time bomb ticking inside you), whether life will ever be the same, there are a few things that you might want to be aware of. First, there are no 'dumb' questions. So feel free to ask anything. We've probably all had the same questions. We may be able to provide some answers. Second, we are not doctors so a lot of what we have to offer is experiential (which coincidentally is exactly what your doctors may not be able to offer. Third, its pretty normal to get depressed from time to time about having an ICD, especially after having an event (therapy/shock.) Depression distorts reality making the negatives in life seem overwhelming. Your doctor can/will prescribe a suitable med or meds to help you short and/or long term. Don't be afraid to ask. If you need therapy, get therapy. Fourth, its normal to be very wary about getting therapy (shock), apprehensive about when it will come and whether you'll have any warning and whether it will be painful. Some of us have had ICDs for a long time and they have rarely, if ever, gone off. You could become blase about having your ICD. Others will tell you about episodes of multiple shocks. The good thing is that usually they go off to save your life. Repeat to yourself often, " getting therapy is a good thing. " Fifth, some models have 3 levels of therapy (shock) and the lowest level of therapy may not be more uncomfortable than " merely annoying. " Sixth, your unit probably has pacemaker functions, so your probably covered for other things besides VTach. There is no extra charge for this. Finally, you are not alone. There are a lot of zappers out there. Here on the internet, Zap News has all sorts of news and stories, Zaplist (this forum) is open all the time, the Chatroom is open several times a week for one to one, and Turks Paltalk is open from time to time for face to faces, and you can write to someone directly by clicking on their address next to their name in " FROM " above. And the ICD companies are thinking about you, coming out with new stuff all the time. This year its a box which works on Congestive Heart failure CHF. By the time you need a replacement, it will be smaller, and much more capable. Lots more for another time. Stu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 ita..... > Thanks for the welcome -- I thought it was pretty cool that a group > like this exists! I'm a 35 yr. old female > > > Wow, so young. Welcome to a great group, lady. I'm not the ICD > person here, my husband Rich is. > I'm sure you'll have a lot of good info to share, and you'll find some > here also. Nice to meet ya! > Sue > > -- " She was not quite what you would call refined. She was not quite what you would call unrefined. She was the kind of person that keeps a parrot. " -- Mark Twain Rich and Sue Owens http://www.geocities.com/Yosemite/Meadows/7457/index3.html http://www.nothnbut.net/~reo77/aurora.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hello ita; Welcome to the group, If you have any questions doubts fears feel free to talk about them that is what we are here for. I am a 42 year old Turkish Immigrant who got his ICD february 2nd of 2001( Hard to believe Its been a year). During the past year I have been thru some tough times like everybody here when they first get their ICD but after a while Thanks to my friends in the Zapper Group especially to Jon Duffy whom without him we wouldnt be without any fears and have The Best Support group in the world like this, anyway again welcome to our world and we'll try to help you as best as we can. Good Luck, Good Health and Good Heart. TURK Re: Sleeping positions ita.....> Thanks for the welcome -- I thought it was pretty cool that a group> like this exists! I'm a 35 yr. old female>>> Wow, so young. Welcome to a great group, lady. I'm not the ICD> person here, my husband Rich is.> I'm sure you'll have a lot of good info to share, and you'll find some> here also. Nice to meet ya!> Sue>> --"She was not quite what you would call refined.She was not quite what you would call unrefined.She was the kind of person that keeps a parrot."-- Mark TwainRich and Sue Owenshttp://www.geocities.com/Yosemite/Meadows/7457/index3.htmlhttp://www.nothnbut.net/~reo77/aurora.htmlPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi All, Welcome back Stacie. So glad you are able to be home again. We all missed you on here. How are you feeling? Welcome to you new comers, too. I just want to say that I have learned so much from these people here. Whenever I have a problem, I can always come here and ask and usually someone else has had the same problems and can help with very good advice. I had open heart surgery in 98 and my ICD implanted in 99. Mine has not zapped me yet and I am sooooo glad. When I hear some of the others talk, it sounds so awful but I know if it happens to me, I'll work through it all just like they did, with their help, of course. I have pain most of the time in my chest area. And yes, it is hard to get comfortable when sleeping. Remember the good old days, when we could crawl into bed and lay anyway we wanted and no discomfort or pain. BUT...consider the alternative and then you become ok with it all. Ruth in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Bye the way this goes to everyone if you'd like to have a small gorup voice communication/chat and talk about anything go to www.paltalk.com and once you downloaded and installed the software(if you need help with that im here) add turk123 , smileyface_4 and stu953 and zapperuk1000 as a buddy and you'll se us when were on paltalk. Ohh bye the way we have a branch in U.K. whick is zapperuk and the old Dawg Collin Kerridge is doing a wonderful job there and i can never say enough about Jon Duffey what a job he is doing with the Zapper site and the newsletters and services"Thanx Jon". Anyway Good Luck, Good Health andGood Heart.TURK Re: Sleeping positions Hi Chet and Hi ita.Welcome to a group of really priceless people. We come in all shapes and sizes, ages and backgrounds. Some have ICDs and some are related to those who have them. What we share is our support, especially when one is facing surgery or is depressed.We share our knowledge and often opinions. We share our experiences, and our (alleged) humor.We are delighted that you are sharing this part of your life with us. Welcome.Although all this is very new to you, and every day (or hour) you are wondering when the ICD is going to go off and what its going to feel like. (like its a time bomb ticking inside you), whether life will ever be the same, there are a few things that you might want to be aware of. First, there are no 'dumb' questions. So feel free to ask anything. We've probably all had the same questions. We may be able to provide some answers.Second, we are not doctors so a lot of what we have to offer is experiential (which coincidentally is exactly what your doctors may not be able to offer. Third, its pretty normal to get depressed from time to time about having an ICD, especially after having an event (therapy/shock.) Depression distorts reality making the negatives in life seem overwhelming. Your doctor can/will prescribe a suitable med or meds to help you short and/or long term. Don't be afraid to ask. If you need therapy, get therapy. Fourth, its normal to be very wary about getting therapy (shock), apprehensive about when it will come and whether you'll have any warning and whether it will be painful. Some of us have had ICDs for a long time and they have rarely, if ever, gone off. You could become blase about having your ICD. Others will tell you about episodes of multiple shocks. The good thing is that usually they go off to save your life. Repeat to yourself often, "getting therapy is a good thing." Fifth, some models have 3 levels of therapy (shock) and the lowest level of therapy may not be more uncomfortable than "merely annoying." Sixth, your unit probably has pacemaker functions, so your probably covered for other things besides VTach. There is no extra charge for this.Finally, you are not alone. There are a lot of zappers out there. Here on the internet, Zap News has all sorts of news and stories, Zaplist (this forum) is open all the time, the Chatroom is open several times a week for one to one, and Turks Paltalk is open from time to time for face to faces, and you can write to someone directly by clicking on their address next to their name in "FROM" above. And the ICD companies are thinking about you, coming out with new stuff all the time. This year its a box which works on Congestive Heart failure CHF. By the time you need a replacement, it will be smaller, and much more capable. Lots more for another time.StuPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 Hi Everyone - How nice to hear from so many of you -- you seem like such a friendly supportive bunch! Tom in PA - Glad to bring a smile to your face. -- and the shower was really delightful! PS - Does all that goop from the monitors ever come off?!! Chet -- my cyber-heart twin! -- How funny that we had them implanted the same day. With the pillow thing -- the head of our bed is against a wall, so I basically prop my pillow against the wall and then put 2 other pillows kind of angled on it. I tried using a neck pillow one night, but that didn't work as well for me. The angled pillow thing was working pretty well and I was even able to manage a "semi" side sleeping thing a couple of nights, but now it's 3:49 a.m. and I'm "sleepless in Ohio", so I don't know -- I guess maybe it's just trial and error. I'm not having as much chest/shoulder pain tonight, but woke up with funky heartbeats - not fast, but kind of irregular feeling -- like some beats were harder than others or something. Decided to get up awhile to see if the feeling passes if I distract myself with a little cyber fun. Anyway - glad to know you're out there and can identify with my situation. I look forward to getting to know you better. Stacie -- so nice to meet you. You sound like quite a fighter -- what a great attitude! I can see why you are inspiring to so many! Hang in there! You sound like you have wisdom way beyond your 18 years! Stu -- What a nice welcome! All of the info. you sent was so helpful. It's really nice to know that there is a place to go to ask questions and actually, just to talk. I find that I hate to "bring up heart stuff" all the time with my family, but it seems like especially when you first get the thing implanted, it's really on your mind alot. It's also nice to get feedback from other people who have "been there", because it makes it all feel a little more normal. (if there is such a thing! - ) Sue - Yes - I guess I am kind of young (but fiesty -- I have red hair!) -- I was definitely one of the youngest on the cardio unit at the hospital. My "heart problem" memories are mostly of pediatric hospitals -- in fact, with tetralogy of fallot, they still often consult pediatric cardiologists because that's who seems to deal with it the most. I feel fortunate with my particular problem though -- many children with TOF are also born with Down's Syndrome and additional complications -- I'm fortunate not to have the additional struggles. Most of the doctors say that we are "charting new territory", because the surgery was fairly new when we had it, so kids who had it in the 60's and 70's are just now getting into adulthood. I guess that's why they are just now discovering some of the electrical problems and other aftermath that seems to be part of the TOF package. In any case, I'm so thankful for all of the technological advances in medicine -- saved my life! Thanks to all the others who sent kind welcomes -- Turk, Bob in PA, Jon Duffey etc. so glad to know you all. Turk, I love your saying -- "Good Luck, Good Health, Good Heart" -- how perfect! Well, must go for now and see if I can maybe squeeze in a tiny bit of sleep on the couch. I've got an active 4 year old that I need energy for in the morning. Her grandma bought her a camping lantern and we're supposed to be having a "living room" campout tomorrow! She's so much fun! Full of imagination and energy! It's so nice to have our whole family home again. Talk to you all soon! ita Sleepless in Ohio Re: Sleeping positions ita.....> Thanks for the welcome -- I thought it was pretty cool that a group> like this exists! I'm a 35 yr. old female>>> Wow, so young. Welcome to a great group, lady. I'm not the ICD> person here, my husband Rich is.> I'm sure you'll have a lot of good info to share, and you'll find some> here also. Nice to meet ya!> Sue>> --"She was not quite what you would call refined.She was not quite what you would call unrefined.She was the kind of person that keeps a parrot."-- Mark TwainRich and Sue Owenshttp://www.geocities.com/Yosemite/Meadows/7457/index3.htmlhttp://www.nothnbut.net/~reo77/aurora.htmlPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 aita... welcome to the group... as w/Chet, hope your pain is subsiding w/each day... side sleeping does return, eventually ... I was a " belly sleeper " and w/my unit going in abdomin, talk about long time before I was able to return to that position... but after a few years, I did ... good luck to you!! JES in NJ... God Bless America > Hi Chet - > I'm new to this group -- just had my ICD implanted last Wednesday and get my staples out tomorrow -- we ended up going to Target and getting one of those " chair pillows " ? (my husband calls them " husbands " -- they are like a pillow with arms.) > ita > Stow, OH > Sleeping positions > > > Chet, for the first few weeks I slept in the recliner and found that helped a lot. It was much easier to get comfortable. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 My God ita; I feel for you. I heave twin daughters 6 and a half years old and i miss those days when they werew 2 3 4 now they are a tornado, typhoon what ever like a giant earthquake as soon as they get in the house the house is distroyed. but of course they are twice the fun. Enjoy your 4 year old your gonna miss it. Good Luck Good Health and Good Heart. TURK PS: Thanks for the lovely email, addressing most of us. Re: Sleeping positions ita.....> Thanks for the welcome -- I thought it was pretty cool that a group> like this exists! I'm a 35 yr. old female>>> Wow, so young. Welcome to a great group, lady. I'm not the ICD> person here, my husband Rich is.> I'm sure you'll have a lot of good info to share, and you'll find some> here also. Nice to meet ya!> Sue>> --"She was not quite what you would call refined.She was not quite what you would call unrefined.She was the kind of person that keeps a parrot."-- Mark TwainRich and Sue Owenshttp://www.geocities.com/Yosemite/Meadows/7457/index3.htmlhttp://www.nothnbut.net/~reo77/aurora.htmlPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Thanks for the welcome -- yes, it does seem to get better each day. Got the staples out yesterday, but found a was a teeny bit sorer after they were actually out. Maybe the incision stretches differently once the staples are out -- gradually though, things are feeling more normal. (whatever that is - ) ita Sleeping positions> > > Chet, for the first few weeks I slept in the recliner and found that helped a lot. It was much easier to get comfortable.> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Turk - Twins! How fun! They sound like they are at a cute (even if active) age. My little one is actually really well behaved, but we're just not used to all this "staying home" -- we're usually on the go all the time, and we're both getting just a little stir-crazy. We've done lots of scrapbooking to help pass the time. I think I'll be able to drive sometime in the next few days, though, so that will help alot! Hope all of you are doing well today! ita Re: Sleeping positions ita.....> Thanks for the welcome -- I thought it was pretty cool that a group> like this exists! I'm a 35 yr. old female>>> Wow, so young. Welcome to a great group, lady. I'm not the ICD> person here, my husband Rich is.> I'm sure you'll have a lot of good info to share, and you'll find some> here also. Nice to meet ya!> Sue>> --"She was not quite what you would call refined.She was not quite what you would call unrefined.She was the kind of person that keeps a parrot."-- Mark TwainRich and Sue Owenshttp://www.geocities.com/Yosemite/Meadows/7457/index3.htmlhttp://www.nothnbut.net/~reo77/aurora.htmlPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Thanks ita, Muchas Gracias. Thaks to you too you have been a wonderful addition to our group. It is an honor to have Ladies and Men like you and these in the group. Although Duffy (The Man) found this group since it had helped me quite alot(cant describe how much) I feel as if this is my group.(Thanks Duffy). I am really happy to hear you can drive because i know how it is not to be able to drive and it sucks(sorry). Good Luck Good Health and Good Heart. TURK Re: Sleeping positions ita.....> Thanks for the welcome -- I thought it was pretty cool that a group> like this exists! I'm a 35 yr. old female>>> Wow, so young. Welcome to a great group, lady. I'm not the ICD> person here, my husband Rich is.> I'm sure you'll have a lot of good info to share, and you'll find some> here also. Nice to meet ya!> Sue>> --"She was not quite what you would call refined.She was not quite what you would call unrefined.She was the kind of person that keeps a parrot."-- Mark TwainRich and Sue Owenshttp://www.geocities.com/Yosemite/Meadows/7457/index3.htmlhttp://www.nothnbut.net/~reo77/aurora.htmlPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Yesterday was our first day with the Doc band and needless to say, last night was terrible. My son appeared that he could not get comfortable with any position that I tried to put him in. Today, it seems that his stomach is the most comfortable way to sleep. Does anyone have any suggestions on sleeping positions? Will he get used to sleeping on his back with the band on? How long did it take your child to be able to get comfortable independently and sleep through the night? Please help! Quote Link to comment Share on other sites More sharing options...
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