Back from post-op checkup #2. . . mixed bag of findings.

[epstns]

Well, post-op check-up #2 was today. Long day, at that.

The good news - All of the incisions appear to be healing fine. The fluid around my left lung has decreased a bit more, and they increased my lasix yet again to help resolve the fluid issues, as my ankles are better but still swollen. I am also cleared to drive short distances around the weekend.

The less good news - At the moment, I am almost entirely dependent on my pacemaker. They slowed it way down today, and my heart rate did not pick up on its own. Also, I still have some bouts of A-fib and flutter. I go in for another check in 6 weeks, and am hoping that my heart heals more by then and maybe reduces the dependence on the pacer.

I'm still here, and still in recovery mode - it is just going to be a bit longer and slower than I originally hoped.

 

[Jeff Edmonton]

Good to hear your getting checked out and they are working towards hopefully getting you off the pacer. Driving already for short distances, I will have to test my GP on that on Friday.
I have an appointment with my surgeon on April 11, not even sure if my cardiologist even knows who I am anymore.
Did you have an Echo or chest x-Ray since leaving the hospital?

 

[epstns]

Jeff - No echo's since leaving the hospital, but I have had 2 chest X-Rays since. That has been the primary diagnostic tool to identify the fluid retention around my left lung. It has improved, but is still there. I cannot comfortably lay in a bed, even with the head of the bed elevated. I find that I'm "working hard" to breathe if I try to lay flatter than my recliner. Hopefully the added lasix will help remedy this one.

 

[Bryan B]

Steve...give it some time. I know it can be frustrating but your heart is really pizzed off right now lol. Hopefully as it heals the other problems will lessen or go away all together. It's good to hear that the fluid around your lungs are diminishing. I looked at my x-ray report from the day I went in with the bad cough and I had no pleural effusion on the right side but still a small one on the left side. My appointment on the 16th showed no pleural effusion. BTW I can look at all my test results online through Duke's online "Healthview Portal". You can check test results, appointments, billing, and a few other things as well that I can't remember.

 

[epstns]

Bryan - I am hoping that the fluid will respond to the increase in my lasix dosage. Today is the first day at the newest higher level, so time will tell.

IIRC, Northwestern Memorial Hospital also has a patient portal where we can view test results, I just haven't felt motivated to go upstairs to my home office and find my user ID and password to see what's there.

Isn't technology cool?

 

[Lynlw]

Steve, I know this seems like things are moving slowly to you, but for about 3 weeks post op, you really seem to be doing well, especially since you had the bump right in the beginning so staid in a little longer.

Beside the increased lasix did they suggest anything else that might help with the plueral fluid, Like maybe Motrin to help with the inflamation that is probably part of the reason there is fluid? Are you still doing your breathing excercises every hour or so and getting your walking in? Our weather has been rather crappy so I know that makes walking tough unless you go to a mall or big store.
Hopefully you will become less dependent on your pacer, did you see my post to you the other day not to give up hope because sometimes Justin was 100% paced and suddenly months later, the first time was 6 months, his own heart took completely over.

Hopefully things start moving a little quicker, but even baby steps as long as they are in the right directions are good too, even if it seems a litle discouraging.

 

[Duffey]

Steve,
I think you're doing well for 3 weeks. Another three weeks, and I bet you're feeling more like your old, pre-surgery, self.

 

[epstns]

Lynn and Duffey,
Thanks for the encouragement. Lyn, it is especially good to hear that Justin's own rhythm took over - for two reasons. Firstly, great for him! Secondly, there is hope for me, and I sincerely do hope to become less dependent on the pacer. My newest cardio did say that at this point the heart is doing a lot of healing and remodeling, and that this is a common and usual step in the process. What cannot yet be known is how much of the job my heart will be able to take on in the future. I will have to hold judgement for a couple of months to see.

Lyn, my surgeon's assistant did suggest taking ibuprofen to help with inflammation, but not to over-do it as this may affect my INR (temporarily on warfarin).

 

[Greg a]

Steve, you may want to ask the cardiologist if the fluid does not go down about a couple of IV lasix treatments ....when I left hospital my shoe size was UP TWO SIZES and I had seepage from my ankles and belly but a few weekly lasix IVs and I was back in my old shoes and pants .....now if the throwdowns work new pants on the horizon

 

[epstns]

Greg - They have increased my oral lasix dosage, starting today. I'll give it a few days and see - early indications are promising.

 

[Lynlw]

Steve,
I'm glad it helped a little to know Justin's heart started working on its own after a couple months. He actually tended to go into Complete Heart Block after Caths, that he had almost yearly for a few years. Everytime he would be 100% paced for a while sometimes weeks and sometimes it would be months, but then his heart would kick itself into working and his pacer wouldn't go off until his next cath.

Hopefully the plueral fluid goes away soon, I know you'll be much more comfortable especially laying down, even in your recliner with out the fluid pushing on your lungs. I forgot you're on Coumadin, usually when Justin only had a small amount of pericardial fluid the Motrin made a big difference, but sometimes he needed to go on prednisone for a litttle while to help.

I know from experience with Justin and my Mom, one of the biggest things that helped in getting fluid off, either over all body fluid, or "just' pericardial or plueral fluid, is walking and just getting everything moving better.
I don't know if you mentioned it, (sorry if i missed it if you did) Since the weather is probably keeping you from getting a few walks in every day, have you considerred asking about starting rehab or starting it sooner then planned, so you can get a good workout in a couple days a week.

Justin's had surgeries both in the middle of winter when it is too cold and summer when it is too hot and humid, so I know what a pain it can be trying to get walks in, doing laps inside the house and up and down the stairs, gets pretty boring really quickly and who wants to get a ride to the mall or store a couple times a day just to get some walking in. Luckily for Justin for the surgeries in the summer, he could at least get walks in early in the morning before it got too hot or later at night, but the winter there is just no "better" time of the day to be out walking a few blocks.

All in all tho is sounds like you are doing pretty good, especially since you also needed a bypass in addition to the valve and you sound much better just in the 2 weeks you've been home. Thanks for taking the time to give the updates, I'm sure they will help other members in the future to read when you were able to do different things etc.

 

[epstns]

Lyn - In a city like Chicago at a season like this, one must get imaginative to find ways to walk. Yes, I do the stairs in the house, many times a day. But. . . that is not the same as an extended walk. Today's walking was across the parking lot and up and down the aisles of the grocery store with my wife. If she needs to do some shopping, I may as well walk with her to get some exercise. Today was better than yesterday -- I felt that I could get across the parking lot at a more normal speed. Of course, not wanting to freeze in the cold may have had something to do with it, too.

In fact, I find that most of the time I am very cold - even in the house. Right now I am sitting at the kitchen table wearing a fall-weight jacket and have set the heat up a couple of degrees. My surgeon's assistant says the coldness is because I am still anemic. Anyone heard of this or had it happen to them?

 

[Adrienne]

In fact, I find that most of the time I am very cold - even in the house. Right now I am sitting at the kitchen table wearing a fall-weight jacket and have set the heat up a couple of degrees. My surgeon's assistant says the coldness is because I am still anemic. Anyone heard of this or had it happen to them?

The same thing happened to me, and I think I (like almost everyone after OHS) was somewhat anemic too.

 

[Jeri]

Steve,

I think you are doing great just 3 weeks post-op.....especially considering everything you have been through. When can you start cardiac rehab? I was shocked to read that you are cleared for a little driving. I was told 6 weeks....WOW!!! That will be difficult. What is the dosage on your Amiodorone sp?? Hopefully it won't be a long term with that and Coumadin. How are you sleeping?? Last night I tried tart cherry juice ..just 2 oz before bedtime and I did sleep better than I have in a long time. I don't know if it was coincidence or if it really does work. My brother-in-law (who lives in Chicago) told me about it. I am going to do it again tonight so we'll see. I was falling asleep right away but then awaking after a few hours and staying awake for a few hours.....very frustrating. But last night, I slept a 5 hour stretch ...woke up for just a few moments and fall back asleep for the rest of night. I was so excited.
Well keep up the great work. You are doing great.....maintain that positive energy and pray. You are in my positive thoughts and prayers.

Jeri

 

[BAVD John]

Hang in there, Steve. Your 3 weeks post op and on the road to recovery. No doubt you feel like your recovery is not moving fast enough. Your heart and body went through some major trauma just not to long ago and it takes time for your heart to heal. I can assure you that I wasn't moving to quickly those first two weeks I was home. I started feeling pretty good 4 or 5 weeks post op but it took almost 6 months before I thought I was feeling back to normal.

 

[epstns]

Jeri - My amiodarone dosage has been a sliding scale (week 1 = 400 mg twice daily; week 2 = 200 mg twice daily; week 3 onward = 200 mg daily). I have a checkup with the electrophysiologist in 6 weeks. If I am still having rhythm issues at that time, the cardio wants to investigate alternative meds to the amiodarone. She (and I agree) doesn't want me on amiodarone long term if we can help it.

I'm still sleeping in my recliner. For some reason (we think it may be the small amount of fluid around my left lung) I cannot comfortably sleep in a flat bed without feeling like I have to work hard for every breath. I'm OK in the recliner, sleepinig around 7 hours/night with maybe one trip to the bathroom (thanks to lasix). It is manageable, but I'm hoping that the increased lasix dosage will resolve the pleral effusion so that I can get back to sleeping in a real bed.

John - at the moment the only thing giving me any anxiety is the fact that I'm pacer dependent. I certainly did not expect this, and all the "what-if" issues are always in the back of my mind. I'm still trying to figure out how they change the battery in a pacemaker when the patient is dependent on it, and how long the battery may last if the pacer is heavily used. I do have much hope that the dependency will be only temporary, but of course nobody can tell if it will be or not.

 

[Jons101]

Steve,

I’ve been reading about your experiences with great interest. I had AVR in 2003 with a bovine tissue valve when I was 32 years old. During that surgery my sinoatrial (SA) node was damaged somehow and I was in complete (3rd degree) heart block. I was 100% dependent on the external pacemaker while I was in the hospital. My surgeon waited and kept me in the hospital an extra week thinking that my normal rhythm would return, but it never did and I finally received a pacemaker. My normal rhythm never did return and I’ve been 100% dependent on my pacer since then. I was also very anxious about having it, but I’ve had zero problems with it and I’m completely used to it, with no restrictions. I go into the office for pacemaker checks every 6 months and have home telephone checks every other month. They told me the battery would last about 7 years, but it’s been over 8 right now and is ready to be changed out soon.

Talking to my electrophysiolgist about the pacer replacement, it sounds like they have plenty of warning before the battery is fully discharged, before it goes into any power saving modes, (which still keeps the critical functions of the pacer). For replacement, they unscrew the leads from the old unit and screw them into the new pacer unit in a matter of a few seconds.

Ironically, my aortic valve, which I thought would last 15 years, has worn out before the pacemaker battery. I’m scheduled for surgery on May 2 for a new mechanical valve. Since I’m due for a new pacer, I’m thinking they’ll replace that at the same time.

Jon

 

[epstns]

Jon - A heartfelt thank you for your post. It answers the two primary questions bothering me, and helps me to realize that things are going to be OK.

A couple of other questions:
1. How well does the pacemaker adjust to your body's demands? In other words, does it adequately speed up its action when you are trying to walk fast or do other activities that would normally result in increased heart rate?
2. Have you noted any limitations to your lifestyle due to the pacer?
3. Which brand (and model?) of pacemaker do you have?

Again, thank you very much for helping to put my mind at ease. That's a relief.

 

[Jons101]

Steve,
For me, with complete heart block, my heart still initiates a pulse on its own from the SA node. But the pacemaker senses that pulse in the atrium, processes it, and then sends out a pulse to the ventricle. My pacemaker adjusts automatically to my body’s demands without me knowing it. As my heart rate increases from activity level, the pacemaker senses the faster rate and pulses the ventricle as needed. I basically don’t even know its there, can’t feel any lag, it just works. I’ve bicycled, skied, hiked and have got my heart rate pretty high and it keeps up. There’s really no restrictions, except no contact sports (football, etc), which I don’t do anyway. I try not to go through metal detectors at airports or entering onto cruise ships, and instead opt for a pat down. I have gone thru metal detectors in some instances, with no affect. Also they say not to stand in between the security detectors placed at the exits of stores for more than a few seconds. I also work with electrical equipment and motors and never had a problem with EMI.

One thing I noticed with mine when I first got it was an upper pacing limit that was set too low for my activity levels. On rare occasions, like bicycling too hard or running though an airport, I could tell my heart rate got high and the pacemaker seemed to go into a mode where I got very out of breath. I assume it didn’t pace my ventricle in sync with the atria for 2 or 3 seconds. Once I stopped and caught my breath, my rate decreased and I was fine. I had the doctor increase that setting for me.

Also, I have a St Jude Identity Pacemaker, model 5376. I signed myself up for Medic Alert and wear a bracelet that has this info on it, in addition to stating no MRIs.

Jon

 

[Nupur]

Steve, sorry to hear about the slow progress and roadblocks. Driving already! Are you sure?

Regarding pacemakers, my experience with my Dad's pacemaker (Medtronic) is that it adjusts to your movement, body temp etc quite well.. so if your heart rate drops while you are asleep it won't pace. I think the battery lasts at least 10-15 years, my Dad got his in 2000 and his paces pretty heavily and it still is not time to change the battery yet.