A Christmas Wish
- by Gemita
- 2022-12-22 11:56:07
- General Posting
- 427 views
- 13 comments
Hello everyone, if you could change one or two things about your pacemaker, what would it be and what message would you send to your pacemaker manufacturer?
My message would be:
Dear Medtronic, My husband and I would both like to know if you could develop a pacemaker setting that could prevent a fall in our blood pressure like you have so successfully developed to prevent a fall in our heart rate? We are taking blood pressure and heart rate reducing meds but very occasionally we are still getting into difficulty with a rapid drop in our blood pressure, for which our pacemakers can only stand idly by while we struggle with our symptoms. Your response would be much appreciated.
Dear pacemaker manufacturer
by Lavender - 2022-12-22 21:55:04
Please put a notice in every pacemaker recipient's discharge papers directing them to this support group so that Gemita and the crew can be the step down unit team to guide the newly initiated. 💕
Dear Boston Scientific
by Julros - 2022-12-22 22:42:54
I wish you would interview patients about their activity needs prior to implant and choose the best device and settings. I wish you could devise a means to better sense and respond to cycling and stair climbing.
by AgentX86 - 2022-12-22 23:06:58
I'd "only" like a true physiologic rate response. A Tracey_E's dial-a-beat would be nice, too, but we might just as well go for the gold.
I hope pacemaker manufacturers will see our message
by Gemita - 2022-12-23 06:58:49
I can see that better Rate Response and other settings that may make exercise a more comfortable experience is high on our wish list for improvements. It is good that we have active members challenging their doctors and pacemaker manufacturers to improve their devices since we will all benefit in the longer term, even those who are elderly or less active.
I agree that it would have been so helpful to have been given more information about the device I would be receiving and asked about my expectations and lifestyle. Yes I too would appreciate more honesty and openness from my medical team and manufacturer about their devices, their success/failure rates, implant risks, what a device can and cannot do for me.
Thank you Tracey, Angry Sparrow, Lavender, Julros and AgentX86 for sharing your valuable wish list. I hope Santa will not disappoint
by Happygirl8 - 2022-12-23 12:28:30
Develop a pacemaker they enable you to get an MRI safely! With mine, it is not an option!
by Marybird - 2022-12-23 12:51:58
I'd have to add my wish to those of Tracey's and Agent's for a "dial-a rate response" ( LOL!) so this setting really could be physiological. I need the rate response setting I have for my everyday activities, but it'd be nice to be able to rock in a rocking chair again or to flip over in bed at night without going into tachycardia. But it's a small tradeoff, in my opinion.
I wish all of you great pacemaker and other ICD people here a very Merry Christmas, and a New Year that's better than the last one😊 Mary
by Mad Hatter - 2022-12-23 14:09:52
If you have any pull with Biotronik, a self monitoring app that works would be nice and better support than "It must be something with your phone; we can't help you with that." Please leave coal for that rep.
+1 on Dial-a-rate response and full disclosure/interviewing patients about activity needs.
Mad 🎩 hatter
by Lavender - 2022-12-23 15:22:30
"Leave coal for that rep"
Feeling grateful today despite wanting more . . .
by Gemita - 2022-12-24 10:15:16
Although our doctors and manufacturers could do so much better, I suppose we are all in a happier place right now, aren't we?
I hope this Christmas brings us all the gifts we need to live quality lives and to give us the strength to continue to challenge our health professionals in the years to come, to further improve and develop our devices and to tailor them to suit our personal needs.
Happy Christmas to each one of you, stay safe wherever you live and thank you again for your valuable contributions xx
by Mad Hatter - 2022-12-24 23:27:48
Merry Christmas Gemita, you're right, we are all blessed by this technology as frustrating as it can be. As long as our hearts are still beating there is still hope and purpose for each of us. I pray everyone here will find that in 2023. Thank you and everyone here for the great support and encouragement.
Beautiful just beautiful
by Lavender - 2022-12-25 11:27:28
Feeling very blessed.
by Beanfor - 2022-12-25 23:21:17
I am so thankful I found this site. Thank you to all of you as your problem and messages have helped so much.. I have not had a lot of problems so far. I have my 6 week check on Jan. 13, 2023. Merry Christmas to all of you
You know you're wired when...
You can finally prove that you have a heart.
I'm a runner, mountain climber, kayaker, snow skier, bicycler and scuba diver. The only activity among those that I'm not yet cleared to do is scuba diving, and when I am cleared, I'll be limited to diving to 50 feet.
by Tracey_E - 2022-12-22 16:46:26
I would like to be able to turn on the aggressive rate response when I work out then turn it off when I'm done.