My rendition and some questions

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KenBeirne

Member
Joined
May 13, 2007
Messages
16
Location
Arlington, Virginia, US
I have to say that I have no idea how you go through this if you are not healthy;) . My heart goes out (literally?) to all of those who have had to do into it in a weakened state, or with other disabilities. Those of you who were keeping count will have noted that I was absent from the forums for about 17 days. This was because I carefully paced out my complications to maximize my time in hospital:D , though I am still in awe of Ross's 10 weeks.
I got my AVR (St. Jude's mechanical) on May 31, after entering the hospital for a heart catheterization on May 30. The operation went well, though the post-operative pain was incredible, especially a period in the first night when my pain meds wore off 20 minutes before they could be readministered. A question -- did I miss the discussions in the forums of the post-operative pain, which on the scale of 1-10 was, well, off the scale? I was told that older patients (yes, even older than I) might have diminished blood and nerve circulation, so their pain might be less, but I developed an appreciation for the John Hurt character in Alien, who had the creature come out of his chest. Not sure whether it is better to be forewarned of this, or to have it come on you unawares, but it was a surprise. What did I miss?
Anyway, things seemed to be progressing, and I was put on coumadin and after a couple of days on heparin as well, until it was realized that my heart, which had made some good initial moves, was not actually reestablishing its proper rhythm, though it had a rhythm. Turns out a node had been disrupted, and I had a third degree heart block, so they had to take me off coumadin, which had not gotten to therapeutic levels anyway, and put on heparin alone until a few hours before they implanted a pacemaker (Medtronics, dual chamber) on June 7. This also went well, and I got to return to consciousness through Toontown, for some reason, so that was amusing.
Then back to the coumadin, and the heparin until te coumadin finally reached therapeutic level, 2.4, but then my cardiologist grew concerned that my blood pressure was remaining low, and my heart rate high, and suspected that I had fluid around the heart. Echocardiagraph, and confirmation. So they had to take me off the coumadin, and feed me fresh frozen plasma, so they could do a pericardial window. Emptied out 775 ml. of fluid on June 13. I felt better almost immediately, but then had another day of post-op recuperation, and a return to the coumadin. By this time we were up to 17 days, and I was feeling like a malingerer.
So finally they sent me home, even without waiting for the INR to reach therapeutic level. I have nurses coming every day to check my PTINR and other vitals. By the way, does any of this sound unusual? The INR is taking it own sweet time to rise, still less than 2.0, though I am now up to 10 mg. of warfarin a day. Otherwise, all is well. I truly appreciate all the good thoughts and prayers from the VR members. I have a few other things to write about, but they probably should go in other forum headings (e.g. respiratory therapy, coumadin).
 
WOW, Ken. You really had an ordeal. I can't help you with the coumadin questions, but I'm sure many others will be along soon. Please take it easy, enjoy "home, sweet home" and have a complete and uneventful recovery- you deserve it!!
 
Hey Ken, I hope you got all the tough stuff out of the way and will continue with a smooth recovery.
I was in for 11 days and had a freaky episode of SVT once at 4 a.m.
My INR bounced around the first 2 weeks also, so once released, I had a home nurse come to check it.
My sternum didn't hurt, but I felt like a walking corpse for a long while:)
 
Ken, I'm so sorry you had such a rough go of it! No, you didn't miss anything about the post-op pain. Most do not go through anything like you did. I'm hoping you are going to do fine from here on out. There are others here that take more than 10mg of Coumadin a day but I am not one of them. It does however take me several days to get back in range after having to have been off of it for various reasons. It takes me less than four days to drop down to an INR of about 1.0 when I discontinue but at least a week to get back into range when I resume.
 
Rough Ride!

Rough Ride!

Yes, it sounds like you've had a rough ride! I had an AVR with a St. Judes and an aortic graft to get rid of an aneruysm. Based upon what you've described, I had an easy go of it.

Experiences with the pain issues vary from individual to individual. I experienced sternum pain, but I wouldn't describe it as off the chart. Pain meds kept things under control. My worse experience with pain in the hospital was when one of my nurses removed my pacemaker wires and chest tubes. It hurt like heck. Coughing and sneezing were quite uncomfortable, but managable with the little pillow that "Mended Hearts" provided. I'm doubt any of us have exactly the same experience coming through the surgery.

I took pain meds for a couple of weeks longer than I wanted to, but my activity level probably contributed to needing the meds. Including my hospital stay, I only missed six full days of work and started cardiac rehab two weeks post-op. At twelve weeks post-op, I still manage to get my sternum sore. Golfing and mountain biking put some strain on it. Advil seems to settle it down.

I was on a coumadin roller coaster for the first couple of weeks after surgery. Like others have reported, I was released from the hospital before I reached the level I needed to be at. After being home my level got too high. I had some nose bleed issues. Interestingly, I'm currently on 5 mg per day which is the same dosage I was on when levels got too high during my first couple of weeks post-op, but now I'm on the low end of the "zone" the cardio doc wants me in.

There are other members who know more about coumadin than I do, but from my experience, body metabolism seems to affect how much coumadain is needed. Again this varies from individual to individual. I needed less during the first couple of weeks post-op because my metabolism was running more slowly than normal. Now that I've resumed normal activities I need more to keep me in the zone. Lots of factors other than activity level probably have an effect upon your metabolic rate.

Hang in there. You're on the right side of things now and it's just a matter of time to get everything back into your comfort zone.

-Philip
 
uh oh - the Mack truck got you, it sounds like. I am so sorry you have had a bad time. Hopefully things will even out and you will be soon on the mend and getting on with your life. Just take it easy as long as you need to, but do try walking some. It's important. Blessins............
 
Bumpiness can be relative

Bumpiness can be relative

Thanks for the supportive thoughts. I hope I didn't overdo the rendition of the bumpiness, though the initial pain was surprising. That part only lasted for about 3-4 days, however, except for the occasional coughing jags. It is interesting how different everyone's pain experiences appear to have been. Since the first week, however, the pain has gone from controllable to pretty much gone, except for the days right around the pacemaker and pericardial window procedures. Actually, by the end, trips in my bed down to the operating rooms were getting to seem quite routine. Odd how one can get used to anything.
Also, since I was in the hospital so long, I think a fair amount of my recovery from the initial AVR got done there.
Which actually leads me to another question. I am trying to figure out where I should consider myself in the recovery process. I.e., I am only one week out of the hospital, but I am over 3 weeks away from the AVR. I feel closer to the three weeks than the one week, stronger and more mobile. I don't want to overdo things, but at the same time, I don't want to underdo them. One suggestion I got was to think in terms of 3 weeks, but minus a couple of days for the pericardial window(which was only 10 days ago). How does that strike everyone? Or is that too ambitious? I will note that I am able to make a couple of flights of steps, though I am not sure I should be doing it. And on good days I can handle at least a 10 minute walk, possibly more if i pressed it, though I have avoided pressing.
 
I remember that the one thing that was stressed when I left the hospital and when I went to this little meeting 5 weeks post-op at the hospital where there was a physiotherapist, is that during the whole convalescence period, things you do should be easy whether it is walking or whatever. Of course, as the weeks go by, more and more will become easy.
 
KenBeirne said:
Thanks for the supportive thoughts. I hope I didn't overdo the rendition of the bumpiness, though the initial pain was surprising. That part only lasted for about 3-4 days, however, except for the occasional coughing jags. It is interesting how different everyone's pain experiences appear to have been. Since the first week, however, the pain has gone from controllable to pretty much gone, except for the days right around the pacemaker and pericardial window procedures. Actually, by the end, trips in my bed down to the operating rooms were getting to seem quite routine. Odd how one can get used to anything.
Also, since I was in the hospital so long, I think a fair amount of my recovery from the initial AVR got done there.
Which actually leads me to another question. I am trying to figure out where I should consider myself in the recovery process. I.e., I am only one week out of the hospital, but I am over 3 weeks away from the AVR. I feel closer to the three weeks than the one week, stronger and more mobile. I don't want to overdo things, but at the same time, I don't want to underdo them. One suggestion I got was to think in terms of 3 weeks, but minus a couple of days for the pericardial window(which was only 10 days ago). How does that strike everyone? Or is that too ambitious? I will note that I am able to make a couple of flights of steps, though I am not sure I should be doing it. And on good days I can handle at least a 10 minute walk, possibly more if i pressed it, though I have avoided pressing.


Im sorry you had a rough time of it. Justin had some surgeries where if there was a bump anywhere in the road he found it and was in and out of the hospital for months. Fortunately he was a toddler so doesn't remember it, but I do. As for where to consider yourself in the recovery timeline, everyone is different and everyones post op experience is different. So unless it is for something definate like how long until the sternum is healed for for driving ect, I would probably go more by how you feel. Unless the doctors have restricted something,like don't lift a certain weight or don't go swimming, I don't see why walking up flights of stairs if you can, would be a problem. I wouldn't worry about when you "should" be able to do something, because others have done so at say 2 weeks post op, but how you feel each day. Alot of the healing also has to do w/ age and I think what kind of shape you were in going into surgery, as well as your hospital stay. Justin just had surgery a few days ago (Tuesday) so he just tries to do a little more each day. For example Friday, he got home, when he was in the hospital he walked around the floor alot, so later that day he walked (slowly)up to the end of the block and back, since that took about the same time as a couple laps around the floor. Since he didn't have a problem or feel wiped out after that, Saturday we went up and back twice a couple times during the day. So today he decided to walk around the block. We try not to compare this surgery, to where other people would be or even where he was for his other surgeries, (altho I do go back and reread our journal to see when he was able to do things just to get an idea.) I think as long as you eat as well as you can, do your breathing and try to make a little progress each day, AND be sure to rest, that is more important than how long it has been since surgery.
If you have any questions, ask your doctor. I would also ask them about cardiac rehab, that is really good for finding out when you are able to do things and if something is still too much at that time for you. I hope this didn't sound more confusing than I was trying for and am very glad you are home and feeling better. lyn
 
Thanks Lyn, my prayers for Justin

Thanks Lyn, my prayers for Justin

Thanks for the helpful comments, Lyn, especially with all that is going on it your life. It is good to read that Justin's latest adventure is going well. He makes me feel like a piker for even mentioning my bumps. Special prayers for him and you.
 
Ken,

Most people have "bumps in the road" during recovery...it just sounds like you had more more than your share of bumps than others.

As for the intense pain the first night...I experienced this as well. Basically what happened is that they (the nursing staff and/or the doctor) did not medicate me enough to keep me ahead of the pain. Once the pain gets intense it's much harder to get it back down to a reasonable level. I finally told my nurse I wanted to talk to the nursing supervior. He saw how much pain I was in and immediately increased my pain meds, then called the doctor to have my "standing order" changed to a more frequent dosing interval. Once they got me back ahead of the pain I had no further issues with pain while in the hosital.
 
Ken,
Never mind a Mack truck, I think that same train that got me got you. I thought that was a New Orleans special. I did not have a lot of problems with pain , except the chest tubes, and I think it was because I am so thin. There was no room in there for them.
But the 4th day after surgery, I was sitting in bed, got all dizzy,...and I flat lined. I had what they called a ventricular standstill. That is the only time I felt really bad pain is when they pushed that Gantz cath in my neck. That got me shipped back to ICU for 5 more days while they debated whether to put in a pacemaker or not. The physiocardiologists wanted to put in the pacemaker but the surgeon wanted to wait. My heart finally got back in sinus rythm by itself.
Then about 8 weeks after surgery, I had some episodes of Atrial Flutter. But that too settled down with meds. I seem to be fine now.
After I was home, I was told to walk as much as I could but not to tire myself out.
I hope the rest of your recovery is boring...just steadily getting better without any more complications.
 
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