Pacemaker defibrillator two weeks ago

Hi, I too for many years delt with water retention. The out of breath was a hint to me that i was retaining. Not everyone gets swelled ankles so I was taught to weigh myself daily. The beauty of water retention is you weight will change quickly up and down. (unlike just regular weight gain is more gradual) Working with my doctor we came up with a plan to regulate my water retention by watching my daily weight. Now this needs to be worked out with you doctor but for me if I saw a weight gain of 3 lbs or more in a day or 2, I could take an additional lasix to bring it down. Please don't do this without permission and your issue may be something else but I do know watching your weight was real important to monitor water retention.
So have you been weighting yourself already? I remember it was important to do it first thing in the morning so you had a good base weight without having eaten or had anything to drink which can raise you weight during the day. I hope maybe that may be an area to discuss with you doctor.

You take as needed lasix? My cardio told me to never take diuretics with HCM, again, these discrepancies in information is why I am
Seeing COE in March, I do not think the card team here in Louisville have the needed experience to manage this. I ended up not needing an ICD at this time, I have SVTs and PCCs but they said this did t warrant a pacemaker. I do feel a little better after a mo th, but I now have a UTI, have o ly had one before, 30+ years ago, I know it’s related to Camzyos but they won’t listen, I’m waiting for them to call me about treatment for that because I know it’s very dangerous to have infection of any kind while on Camzyos. Always something. Hope everyone had a great Christmas 🤶

@cash298 Hi, I might mention that you may be correct about the use of Lasix for HCM but as for pacemakers there are many reasons to get one. I had VT or Ventricular Tachycardia. Im not sure what @diab has but with VT i was on Diuretics for many years. I also had a Pacemaker with Defibulator. Just wanted to point that out. I hope you are also successful in getting your questions answered. If your looking for others with HCM I might suggest this group has others who are dealing with HCM and many discussions on some of the areas you mentioned.
https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/

Hi @danab, I am not sure about all diuretics, and at this point I’m not sure about anything, I don’t trust my team at all, esp the NP at the Heart Failure Clinic. I have another week until I see anyone so I guess I’ll just see what happened. I have always had HCTZ prn, I think my pressure gradient freaked my cardio out and she told me to not take any, then I called her and told her my legs were swelling and she said one once in a while wouldn’t hurt. Who knows at this point. The NP at the Heart Failure Clinic also refused to discuss the “ severe left atrium dilation” because “ it doesn’t have anything to do with the HOCM, it’s a completely different issue”, which it 100% is caused by the HOCM, I am quite literally terrified for my own health.

@cash298 Did you have a chance to go to the other Group? You may find others with some of the concerns you have and have more information. It includes HOCM also. I'm not familiar with your particular condition. Here is the link to that Group and you will see many different threads on different subjects with your particular condition. I hope it helps.
https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/
Also for severe dilation of the left atrium here is a thread discussing that issue. https://connect.mayoclinic.org/discussion/atrial-septal-aneurysm/