Speak for my Down's daughter
My 23 year old daughter with Down's will receive an ICD next Monday April 25. She has had a pacemaker since she was a baby. She is not able to communicate sufficiently to let me know what she is feeling regarding her pacemaker and her developing ventricular tachycardia. I have read with deep interest the postings which express what many recipients have felt at different times.
My daughter has a great deal of trouble falling asleep at night but none in the car. She has attempted to express many things about her pacer over the years, but I'm not sure I understood her.
I am hoping that what all of you express about your own experiences can help me understand what my daughter may be trying to tell me. So that we can be more responsive and compassionate.
Is there anything that will be helpful for me to understand about the first weeks after the implantation?
Thanks
5 Comments
This is so nice that maybe we can
by janetinak - 2011-04-20 03:04:04
help you & your daughter thru our experiences. I agree with daisey's comments above. I took Tylenol as I was allergic to a couple of the narcotics that I was given. So I guess I would get together with her medical provider & see what med can be given to her to help the discomfort. Doesn't seem like most of us have had a lot of discomfort but it would be a good idea to work on this. As it seems to that this will be a new incision/pocket that daughter has had since 1st surgery if I understand it. Also my PM area was uncomfortable for several months (almost a yr) & I was told that is not unusual & didn't need to take any meds but if your daughter doesn't understand & can't tell you, I guess that is something you need to be aware of. Also discuss with the doc/staff about not raising the affected side's arm but to move the shoulder so doesn't get frozen. Sleeping on the PM side is uncomforatble for awhile & propping up with the a pillow on the other side helps. You can use the "search" button top right of this page to do the research also. Hope this helps.
Janet
Helping
by kiml1123 - 2011-04-20 11:04:22
Hi, I think It's a great idea for you to ask for input.. I wish I had found this site before my surgery.
I think sleeping propped up the first few day or weeks is a good idea. laying on the incision side does hurt.. .when standing up do it slowly.she may be dizzy. people react differently to the anesthesia so this may make her sick a day or two after surgery. she will not be able to use her left arm for days and may be put in a sling to prevent this. This lessens the chance of pulling the leads out.Help during the shower, mostly I needed it to wash my hair. kinda hard one handed.
Putting on a bra. the strap may be more comfortable off her shoulder for a while, or even a strapless. I do recommend wearing one though because even the weight pulls slightly on the incision.
What a great, considerate mother you are. <3<3<3
Your daughter
by LadybugC - 2011-04-26 10:04:01
I also just recieved my own ICD on April 6th of this year. My major problems were getting off chairs, beds, and off Dr tables. My husband was kind enough to let me take a couple of breaths be for holding the not PM site side and letting me pull my way up or he gave me the boost I needed.
Also the sling is a great idea. It helps you and her to remember that that side is still tender. The first week it hurts really bad but by the second it is a duller pain.
The other thing I would like to say is let the strips over the stiches fall off on their own. That way it doesn't cause more pain.
Colleen (o;
Just had replacement
by vikki1 - 2011-05-12 02:05:33
Hi, I'm 37 mum of 2 and just had 1st replacement ICD yesterday. Right now feeling extremely bruised & tender, much more than with initial implant. Although I am allowed to move arms as this surgery didn't involve lead placement, it still feels way too uncomfortable to attempt. I would advise a zip up sweater or light cotton shirt to minimize movement - not worn a bra but am pretty flat chested so luckily weight of bust not an issue for me!. Last night I slept on my back with arm supported by pillow underneath although ended up with very stiff neck. Would advise plenty of fluids - nurse said helped aid recovery plus helps keep blood pressue elevated (mine is very low). Emotionally everyones journey is very different. After 1st implant 6yrs ago felt extremely panicked about having a device that could shock me at any moment. I found listening to music when going to sleep helped me relax as the anxiety alone made my heart feel like it would explode .. sometimes I would have to sit up and walk round to calm myself down as it really felt like heart was racing. I would imagine that I could feel it doing things - even went to hospital to check but all was fine (just in my head!). However, my uncle who also had ICD experienced lots of VT's and used to be afraid to sleep - maybe she gets paced when her bp drops whilst in bed and feels this to? Hope this is of some help - wish you & yr daughter all the best. Vikkix
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by daisy41763@yahoo.com - 2011-04-19 08:04:34
I assume that it will be implanted in the chest wall, right below the collar bone. I kept my arm on a pillow for several days and when I was sitting in a chair especially.
My range of motion was very limited for a while.
They did give me something for pain and discomfort., I dont remember what it was., Maybe Motrin or tylenol.
She might need help in the bath washing hair or any parts where she would have to reach with that arm.
My biggest advise would be to avoid touching the pacer site and avoid looking at it in the mirror too. It made me queesy to look at, and it made me nervous that it was there.
Good Luck Dear.