Denise's Journal

Rita Savelis  It can take a long time to get yr INR up and then it will continue to vary, as that is what it does. I was so freaked at first and then I calmed down and now manage my own med doses. Sorry about the kidney stones. I've heard those are so painful. And kidney stone + antioagulant most probably caused the blood in yr urine. I found that after anticoagulants I bled/spotted after sex because my tissues were just more prone to bleeding. But no other real bleeding issues in 10 yrs. Take care.

Susan Bodner  I have been on coumadin since june 1990. I was pretty unhappy at first. At 27 years old i needed 15 mgs daily to keep me therapeutic, than menopause at 44 changed me to
8mgs daily. Now at 62, i have setteled into 5mgs daily. I check my own INRs with home machine. I have had blood in my urine, according to test strips, since coumadin start. I can't see the blood but detected by strips. A nuance of being on med for me. Use of home monitor is such a bonus to help in times when med change or surgery or summer and eating out of garden.

Marie Myers  I am betting Rita S will  understand your situation.  She has mentioned having the experience of a pacemaker on a really thin body. I bet she will chime in on your post…

Kathy Ozio  Hi Denise! I ended up with an ICD (defibrillator) after MV surgery. Yes, it does feel like that. It may take months - even a year- until you get used to it. It still bothers me at times when I bend my arm a certain way, or lying on my left side. I could bend my left arm to wash my right side for a very long time. But, eventually ,  it does get better. 

Rita Savelis  Hi Denise. I am skeleton skinny and my pacemaker, implanted in 2015 a few weeks after double valve surgery, is a big bulge. Yuck. It's a double chamber model and was used because it has a longer battery life. I remember not being able to lift my left arm very high but that passed. 

Now, 10 years later in April 2025, I had to have the top part, which contains the battery, removed to place a new battery (they keep the leads in yr heart in place as they can be difficult to remove). I ended up with a replacement as bulky and ugly as the last one. In fact, worse, as it has a protuberance that sort of sticks out under my arm?!? To be honest I don't feel the pacemaker at all as I go about my day. But I can lierally feel every detail of the pacemaker battery box if I put my hand on it and feel around. And I have a shock every time I see my skinny bod and pacemaker in mirror. So I try not to look. Very very jealous of those with tiny devices, which are definitely out there, but I was always told that I could not have those modern models because of my double chamber, yada, yada, yada.

Well now they have decided that the new pacemaker has skin sticking to it, which means that sooner or later it could break through my skin. Yuck! This could allow bacteria down into my heart through the leads... So last week it was decided I needed the whole device + leads removed. They are very reluctant to remove leads, once placed, especially after 10 yrs, because it is a delicate procedure and who knows how the leads have implanted. 

BUT the replacement pacemaker will now be a tiny quarter-sized device screwed into the heart directly and with no leads. And no battery changes. Placed by catheter through an artery.
Wish I could be happier about this but have had too much surgery and am confused about how this all happened. It's no one's fault, as nothing is. I have a complicated health past and a very damaged heart.

So Denise, I am not being helpful to you and just sharing my story. I remember being shattered by needing a pacemaker and angry about it.

But you will get used to yours and it should settle. It's still early. Talk to your rhythmologist about it if you have questions. So sorry that you ended up needing a pacemaker.

Denise Agnew  Kathy, thanks for giving me a perspective on how long it might take to get used to it. I figured I would, but then again I knew that others here would help me keep things in perspective!

Denise Agnew  Rita, thanks for sharing your story. It sounds like your situation has been quite a journey! That sounds like amazing news, though, that the new pacemaker will be so small. I understand your apprehension, though. I'm sure I'd be wound up about it as well. When you've gone through as much as you have with it. Appreciate you taking the time to chat with me about this and it's good to know the mind and body get used to these things. :) 

Rose Madura  Hi Denise it sounds like you've have a rough day to go!  I'm sorry you've had to deal with so much but glad you are on the mend. Yes, scratchy throat is normal from the breathing tube. I don't remember how long mine felt that way but do know it will get better in time. Throat losengers will help. 

Robert Miller  They put me on a temporary pacemaker and initially that think really zapped me. In any case, to address your question about the throat, I did feel a  bit bad for the first couple of day or so. But it goes away. Try to eat food that is easier to swallow like jell-o, soup, salad, etc. Eventually, it should go away.  

Denise Agnew  Thanks Rose and Robert. Fortunately my throat has never been sore, so that’s a plus. This is just scratchy, hoarse throat that sometimes becomes a cough. I’ve considered the throat lozenges and thought I’d check with my pharmacist if they recommend a particular kind that don’t in any way interfere with meds I’m taking.