What is normal?

[Christina L]

Hi everyone,

I am finally deciding to get on the board and tell you a little more of my experience with my surgery (had complicated mitral valve repair with quadrangular resection and left atrium stapling). Wayne did a good job of filling everyone in on the basics, but I had a few scary glitches right after the surgery and continue to have glitches. Most of you know about my slow sinus node and almost needing a pacemaker. I also had very low blood pressure while in the hospital at 80/50 and my heart rate was very low for a while - in the 40s while sleeping. I was transfused two units of blood and given fluids and then seemed to perk up enough for them to kick me out of the hospital. Personally, I wanted to stay a few more days as I was afraid to leave and didn't know how in the world I would make the flight home to Colorado from Cleveland!! Really I think Wayne had the hardest time with the flight home as he had to do 2x the work - I was just along for the ride. The trip home wasn't as bad as I imagined.

A week ago I went into a slow atrial fibrillation (wavering between heart rates in the 60s and 70s) - a-fib can be slow or fast I guess. They started me on Lovenox injections (per Wayne and he is pretty good at them) and Coumadin, plus Rythmol. I couldn't sleep with the a-fib so I was cardioverted last Friday and now am in sinus rhythm with frequent PACs. Of course, I am still on the blood thinners.

As for how I am feeling, I am amazed that it has been four weeks (as of this Thursday) since my surgery - I think I have been walking around in a fog or something because I don't know where the time went. The tiredness is unexplainable to people but all of you know what it is like - you are so tired but when you try to take a nap, you can't! At least that is the case with me. It takes me a few hours to fall asleep and take a short nap. I am sleeping through the night now and have been sleeping in the bed since surgery - except for the few nights I couldn't sleep with the a-fib and then slept in the recliner in front of the TV. The pain is almost gone, but every morning there is a new sore spot in my chest or back - is going to a dull ache now.

I am wondering if I am "right on schedule" for how I feel. When does the tiredness and fogginess of mind go away?? I have postponed going back to work another two weeks as there is no way I think I can transcribe doctor's reports and hear things right - also don't need the stress right now. I am trying to be very careful about overdoing it. I am walking VERY slowly on our treadmill, and the cardiologist is going to do a low-level stress test on me next Monday to see if I am ready to start cardiac rehab. When did you all start rehab?

I did not have a-fib before my surgery so I am wondering if anyone else experienced this post surgery and the a-fib eventually went away.

As for the Coumadin - it scares me. I need more reassurance on this.

Reassurance - that is what I need!!! Thanks everyone!!! You all have been a Godsend to me through this ordeal.

Have a great day!
Christina L.
Colorado

 

[fyrfytr]

Hey Christina,
I am glad to hear that you are improving. As you know we are all going to heal at different rates and it also depends what all they had to do to our hearts during surgery. They put me on a lopressor to slow my heart down. But they could only give me 12.5 mg twice a day because I also have a very low B/P. I also had to have 2 units of blood and I couldn't believe how much better I felt after they started that. The 21st. of this month will be 8 months since my surgery and I can still tell when I overdue it. Just take it slow and one day at a time.

I started cardiac rehab the 3rd week I was home and that was a big help for me. It lasted 12 weeks. I am still walking everyday and go to the gym 3 days a week to use the treadmill, the arm machine, and to ride the bike.

As for the tiredness are you taking a multi vitamin? That is one thing they told me to start taking after surgery and if you are taking one I would make sure it does not have Vit. K in it since you are on coumadin now, and as far as the coumadin goes it is not really a bid deal. Just remember to be consistent with what you eat.

Again just remember it is going to take more time than most people think for you to get back to normal. I think you will notice a big improvement when you start cardiac rehab.

Who is your Cardiologist? I was seeing Dr. Luckasen but have been seeing Dr. Downes and I really like him.
Take Care

Dave
_________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical

 

[catwoman]

Christina:

Wow! You have been through a lot! I was sooo fortunate with my surgery; my heart must have read the surgeon's textbook because everything went so smoothly, even though I was almost 4+ on regurg pre-op and a repair wasn't possible.

On your fatigue: That's common. At least it was with me.

On memory: My mind was foggy for about 3 months.

On Coumadin: At first I was overwhelmed by it. Only saw the negatives (my favorite foods are high in vitamin K!). But I also knew things could be worse. This is a drug I can and will live with.

I've tested in range for 6-8 weeks at least, probably longer. Take 5.5mg a day.
Have not had any gum problems, and to make sure I stay healthy, my DDS has advised teeth cleanings at least 3X a year instead of twice.
I've always bruised my legs and arms -- stupid filing drawers have always jumped out in front of me! I'm not noticing any increase in this department.
I don't do rock climbing, biking, parachuting or other active things. However, because of my involvement with cats, I am exposed to potential bites and scratches. I carry 7,000 to 10,000 mg of amoxi caps plus liquid Clindamycin just in case. Many cat breeders & exhibitors and most cat show judges carry antibiotics. The most docile animal can be frightened and become defensive.
Last week I received my own ProTime -- have yet to be trained in using it -- and I feel I am in control of my future now.

I am not 100% back to normal yet, but I will be eventually, and I know you will too!

 

[RickKiem]

Hey Chris,
Glad to see your post. I knew from previous posts that you were have a liittle bit of a difficult time. Glad to see that you are doing ok! If you remember I had my surgery on Nov. 4th and so we are on the same timeline for recovery although my surgery was a bit different from yours. I have been feeling a little better each day but am not making the big strides I was when I first came home. I started my rehab the monday after I came home. This was not quite two weeks after my last surgery. The first few sessions we took it very slow but I am amazed how good I feel after a session. I am so much more comfortable pushing myself knowing I am being monitored and that I am right across the street from the hospital. When I walk at home I move much more slowly and really hate to get to far from the house. I hope that you are able to get started in rehab soon.
During my stay at the hospital I had to go back to surgery on Wendnesday to remove some blood and fluid that was pooling around my heart. I also had to have some blood although I am not sure how much I received. It was quite a bit though as they were keeping it in a cooler two units at a time by my bed side. I also experienced afib for a few days while in CCU but they were able to control it with Amioderone which I am still taking. I hope that they will take me off of it this week. I have experience a few episodes of irregular heart beats here at home but this problem has seemed to become less and less frequent as time passes. I still am very tired. Just as you, I find it very hard to fall asleep at night and naps are almost out of the question. My breathing is getting easier but I still have a little fluid in my right side pleural space which makes it uncomfortable to lay down and roll even slightly onto that side. I hope that this does not take to much longer to go away.
I hope that the next few weeks make all the difference in your recovery and mine and that we will be feeling much better for the Holiday season. Please remember that we all are thinking about you and wish you and your family all the best.

Rick

 

[Christian]

Christina:

I've followed your story a bit because my wife (who also has a congenital MV deformity) will someday have a Cleveland Clinic mitral valve repair. I can't speak to your current recovery schedule, but I will provide this tidbit in the way of reassurance (courtesy of a fellow chronic worrier):

You had successful mitral valve surgery performed by one of the top three surgeons in the world at probably the best heart institute in the world. I'm a layperson, but I've read just about everything there is to read about mitral valve repair over the past five years (I even bought subscriptions to most of the cardiology journals) -- you should feel *great* about what you just accomplished. I'd give just about everything I have to instantaneously drop my wife into your post-surgery shoes.

In all probability, your heart problems will be an afterthought by this time next year. Your mitral valve has been "fixed" and it very well could remain "fixed" for the rest of your now-normal lifespan. You're basically cured!! Try to enjoy your holidays and your recovery. You deserve a break from the anxiety.

Best wishes...

Christian

 

[bvdr]

Hi Christina,

Its nice to hear from you again. Everyone heals differently but you do sound pretty much on target. Remember, a "repair" rather than a "replacement" doesn't necessarily mean that it was a more minor surgery.

As for the fogginess. I still feel foggy at times and it has been 3 months for me but it definitely less than what it was at first.

Technically, all atrial fib is fast...........but the ventricular response to the atrial fib can be fast or slow. Sometimes it is referred to as atrial fib with slow ventricular response or just termed slow atrial fib. The fact that your atrial fib is "slow" rather than "fast" is a good thing since many of the problems associated with atrial fib are a result of the rapid ventricular rate. It is better however that you are now in sinus rhythm . If you can stay in sinus rhythm then eventually you will be off the coumadin. Give it some time for your heart to settle down from your surgery.

I had my pre-rehab stress test about 3 weeks after surgery and started rehab exactly 1 month post-op. It is so helpful and helps to rebuild your self-confidence in your physical abilities.

I still have some days when I am so very very tired but not as often as a few weeks ago. I had a period of time when it seemed I wasn't making progress anymore but I think that it over. And even my worst day now is still much better than my best days during the couple of months prior to surgery.

Your aches and pains --they will improve. Life will be more normal than not normal before too long.

 

[Karlynn]

Hi Christina,
Thank you for taking the time to fill us in on your story. I think I'm much like you, in that I tend to evaluate and question everything I feel. On the up side, I think we are people that catch changes faster, which can be good. On the down side, sometimes we over-worry ourselves. Your body went through a lot with your surgery. You had a few added glitches that zapped some more of your energy, so I imagine it will slow your recovery a bit too. (Not that I'm saying it's slow now, but if you feel it is, that could be the reason.) I was so physically worn down before my surgery, that it took me 2 years before I said "Wow, I think I actually feel normal!" But I think part of that was going past my own fears. I didn't like getting in the car and driving anyplace far, by myself, for fear that something might happen. What, I don't know, but I was expecting something. Then one day my Father had a very serious medical emergency and I had to get to him as soon as possible. So I had to get in the car and drive 2 and a half hours by myself. And nothing happened. I was forced to conquer that fear and it worked.

As far as coumadin, I've been on it for 12 years now with no complications or problems. My INR tends to jump around frequently (it's always stumped my doctors) so I test a bit more frequently than most, but I've never had any coumadin-caused issues. (Knock on wood!!!) I take metoprolol to keep my hear rate down, a multi-vitamin, calcium and magnesium.

As others have said, everyone is different. I'm sure I looked pretty silly asking some of the questions I did of the doctors and probably seemed a little paranoid. But there is worse things than looking silly. Getting reassurance always helps.

Karlynn

 

[Granbonny]

Hi Chris

Hi Chris

I was very tired for the first 6 weeks.,,and foggy-headed..so if you are typing..you must be doing good. I was not ashamed to ride in motor carts at grocery stores or Wal-Mart.. I was thinking the other day about last Oct. when I took my Grandson Pumpkin hunting...and I was 7 months post-op...It was a very tiring day for me....so remember it will take quite a while to feel good again...Please do not overdo it at Xmas..Will just set you back..shopping, crowds, ect..Let your family know...Give money, eat out, ect...I really don't think you need to go back to work in 2 weeks...Driving in bad weather in Co..to work and back..unless your foggy-head is gone. How often will you have to go and have your coumadin checked? That will also be stress-ful..Waiting in waiting room, ect............I never went to rehab..The roads where I live are all up and down.. and we walk every day at 11 a.m. in our local community center.Remember..one step forward..2 backwards when you overdo it. Bonnie

 

[Kenny F]

As has already been said, everybody heals differently. I am 2 weeks post and wish I was 100% -but just a couple years ago we would still be in the hospital!

I posted in detail just noe on my own AFib. It developed about ten days post. Today they put me on Coumadin and Cardizem. It was a challenge emotionally, but thanks to the strong pro-coumadin posts I've read, I really believe it can be lived with. Temporarily

It might be hard to do, but I gave up worrying about when I sleep. I have slept 8-1 hour shifts, some 6hr/2hr, 5/3, and one night just 2 hours ( I watched Days of Thunder at 3:00 am). I have decided it is okay to just sit or lay in semi-dark/quiet and ponder.

I believe what everybody keeps telling me - it will get better! And, if we hadn't done it, it would definitely have gotten worse.

 

[Kevin M]

I think the energy level varies a lot by person. I had a heck of a time getting my energy back. I didnt' feel 'normal' until about six months or so.

You have some good things going on:
-You are sleeping through the night and that's great.
-Your pain is subsiding. Those back and shoulder muscles sure ache for a long time don't they? Sounds like you are right on track there.

When you say tired, do you mean too tired to walk on the treadmill? Like feeling wobbly or faint? Or just overall fatigue?

Walking and building up your stamina this way is important and can be one of the best things to help you get back in the game. This being said, you have had some special circumstances you've dealt with, so I'm not sure that would be the case for you.

We all have really energetic, good days and "can't move off the couch" bad days. Take them in stride and don't over do it on the good days. I found that I would go overboard and then pay for it for two days afterward.

Keep walking. You're doing great considering all you've been through!
Kev

 

[ALCapshaw2]

Hi Chris,

It sounds like you had a bit of a rougher time than the average. So did I, but with different issues.

There a LOTS of possible causes for your tiredness.
Who is following your recovery? Cardiologist? PCP?

Let them know how you are feeling. Have they checked for anemia? Proper fluid levels (not too much, not too little)?
Fluid in the lungs or chest cavity? Around the Heart?

Like it or not, you're just going to have to 'go with the flow'.
You WILL get better, but it takes time and there can be
(will be) ups and downs along the road to recovery.
It goes better if you accept that and don't fight it.

Regarding your chest / muscle aches and pains,
MASSAGE is often more effective than pain pills.
I / we used a vibrating / heated disk massager
that quickly subdued SEVERE muscle pain in my
back / shoulder muscles. Stretching also helps.
Did you receive a recovery booklet with recommended
stretches and exercises? If so, go over it again
and do as they illustrate.

As everyone has said, it all takes TIME.

Best Wishes,

'AL'

 

[Nancy]

Hi Christina-

You've been through some rough times with your surgery. But in spite of it all, you seem to be doing well. It can take sometimes a year to fully recover from this surgery, sometimes even longer. The biggest amount of healing takes place in the first few weeks and then after that it sort of creeps along. But you will get there in your own good time. Just need to be patient with yourself and not expect too much right now. Take one day at a time. Everyone heals differently, and no two surgeries are the same.

You're doing well, kiddo.

Now, as for Coumadin: Joe's been on it for 26 years.

Here's what it means to us:

It's a total pain in the rear

It fluctuates quite a bit, sometimes you can figure out why, but most of the time it's a mystery

It keeps Joe safe because it prevents blood clots from forming on his valves which could be fatal for him.

It's a medication with a long track record.

It's track record is very safe

It has few side effects

Joe just considers it another pill he has to take, amongst the 14-15 pills he takes each day, some more than once, not to mention the shots he has to take 3 times per week. So for Joe, It's no big deal.

****************

Now here is what Coumadin isn't:

Joe been on medications which caused him to be nauseous, Coumadin never did that

He's been on medications that gave him excruciating headaches, Coumadin never did that

He's been on medications that gave him massive diarrhea, Coumadin never did that

He's been on medications that raised his blood-pressure, one which raised it to 200 over something. Coumadin never did that

He's been on some medications that caused him to blow up with fluid to such a degree that he developed cellulitis, Coumadin never did that

In the hospital, he was on diuretic so powerful that he had to have a catheter inserted because he wouldn't be able to grab the urinal fast enough, Coumadin never did that

After surgery, he had some pain medications that caused hallucinations, Coumadin never did that

He's been on some medications which caused him to lose his appetite, Coumadin never did that

He's been on medications which made his hands shake, Coumadin never did that

It's a pretty darned good medication and does so much good. It's just a couple of little pills that you have to take to keep you safe, possibly temporarily.

But it could be a lot, lot, lot worse.

If you think of it as just a little pill, it will help to put it into perspective.

Take care, Christina. You really are doing well. Things will straighten out for you.

 

[Ross]

Hey ya lady!

I deem you "Average". Your on track. Like I said before, slow and easy gets it. You'll start feeling better when you can tolerate rehab. Once they get their claws in you, they have a way of getting right down to the business at hand. First few days you think they're trying to kill you, but suddenly, you start feeling better too.

P.S. Can you guess what or should I say who isn't normal? hehe

 

[Kenny F]

Great post Nancy and very well said. I unfortunately stopped reading much on Coumadin, thinking I wouldn't be on it. You have pointed out some huge truths - it is, in the right hands, a very well-used and safe drug. I asked my cardio about side effects of Coumadin and cardizem, and he said what you did (in 2 sentences - he is very reserved). He pointed out that if you read the pharmocology we wouldn't take ANY meds

 

[MelissaM]

Hey Chris,

Good to see you posting! Thanks for the update. Sorry about the glitches, but you will make it through, no worries.

You will have to write down your account of surgery under "Heart Stories" to educate all of the realists out there. I think my friend Denial helped me get through most of recovery. . .deny the pain, deny slight heart fluctuations, deny sluggishness and they doesn't exist, right??? Well, it helped me function, anyway. Otherwise, I would have driven myself nuts thinking fatalistic thoughts.

Your recovery sounds pretty normal - you have plenty of company here on the boards with those who have had a-fib, low blood pressure and coumadin w/tissue valves. Hang in there and slowly, ever so s l o w ly, the tide starts to turn. In the meantime, keep organizing those photos!!

Melissa

 

[LUVMyBirman]

Hi Chrsitina,

Glad to hear you are doing much better.

Just wanted to comment on the low blood pressure. My pressures since surgery have been low. Coming up on 5 years and 80/50 is about my resting rate.

I do feel dizzy at times...but, well enough to exercise at the gym 3 times a week. At that, my top rate when exerting myself is 110-120 ish. Would have to look back into my presurgery records to see where my pressures were prior to.

Like yourself, I had a major setback. Took awhile longer than most to feel 100%.

Hang in there. It will not last forever. Promise.
Take care of yourself

 

[Kathy]

Chris-

I had a similar experience at CCF, although I did have to have the pacemaker put in. I stayed in the hospital for 2 1/2 weeks.

I looked at my calendar and can remember what went on at four weeks post op. I wasn't sleeping well, but would not allow myself to panic over that. My level of concentration allowed me to flip through "People" and read the captions. I had trouble with writing, particularly reversals. Word retrieval was a big problem too. I was walking a quarter mile, twice a day, at 1.4 on the treadmill. I was really sore and the pacemaker site was a killer.

I had to help my daughter organize her things for string camp ( I had done most of the work before surgery)and felt as if I was going to collapse at the end of that project. I did do a few loads of laundry that week. I remember that my husband wanted me to go to the zoo with our daughter. That was the last thing I wanted to do was bounce around in a wheelchair with all the muscle and incision pain.

I was anxious. I didn't want to walk down the block by myself. I was afraid that I was going to trip on the sidewalk and break my sternum open. I was told not to drive for 6 weeks and actually waited until 8 when I saw the doctor. I really had no desire to drive because I was afraid that I might hurt someone. I stayed close to home for the first few weeks when I did drive.


It is now almost 5 months since surgery and I have been in sinus rhythm for about a month. My doctor took me off the coumadin, but I am continuing to take meds to control rhythm for at least 6 months. Unfortunately, the pacemaker stays.

I'm doing an open house for fifty this weekend, so I guess that says something for my improved condition. I have invited all the people who were so helpful while I was recovering.

I do recall that I felt a little better each day at four weeks. I wish the same for you.

 

[ccrawford]

Christina - A couple of things will help the confidence levels. Once you have attended several of your rehab sessions, you will learn how much you can push yourself and how to pace yourself. Once I gained this information, I quit the sessions and started doing my own exercise confidently. As for Coumadin, read all that you can and you will start to get comfortable with it. I'm a home tester and this helps a little in that I know I can test any time I want without a trip to town, but getting some experience under your belt will do wonders. I just got back from a week in Mexico and didn't even think twice about not taking my Protime with me. Several months ago, I probably would have lugged it along. Hope this helps.

 

[Georgia]

Finally, the other side of the mountain

Finally, the other side of the mountain

Christina, you sound like you're doing great. Fog? Did someone mention fog? Let me think - PLEASE let me think. If you'll look there were lots of discussions on "pumphead" last spring and early summer. Certain aspects of it last a long time. Makes a really good excuse for errors, however.

I'm so glad you're home and doing better. Please be patient and don't try to overdo. Just do what you should - walk, breathe and nap. There is nothing else in the world that can't wait.

Take care and be of good cheer.

 

[Lasker]

Dear Christina,

Just to let you know that I did receive your e-mail. I also promptly lost it, after reading it, and am wondering if pumphead sets in even before surgery.

I am glad to know you have reached the four week mark and are getting support from the kind, experienced people on this website on your, hopefully temporary, use of Coumadin. Nancy really spelled it out in an organized, lucid manner.l I expect to be in a similiar state after avr just one week from now, and would like to do as well as you.

I hope you continue to progress, at an even faster rate.

Lorraine