Trying to plan ahead

[KenBeirne]

This is my first post/thread after reading for a couple of weeks. After monitoring what started as a murmur and small calcium deposit some 6 years ago, my PCP and Cardiologist reached the point where they are recommending an AVR in the near future. My cardiologist keeps looking at my test results and, when I tell him I have no symptoms, looks at me as though I have to be wrong. In any case, the left ventricle is thickening, and he wants to go ahead before anything serious happens. So I am meeting with a surgeon today, and having a catheterization on May 30. I expect surgery will be in the first couple of weeks of June, in part because I would like to be in condition to go to my son's wedding (plane from DC to Cleveland) on July 21. Things could be tight, but I am concerned that if I try to ride out past the wedding I might develop symptoms which would require immediate action.

Anyway, I have been reading about the valve options, and will discuss with the surgeon. I saw a reference to a web site in one of the forums which had sample sounds of the mechanical valves, but now cannot find it again. Could someone provide me with it?

I have some practical planning questions, which I haven't seen addressed in the forums (did I miss them?)

One is whether it would be worthwhile to rent a hospital bed to use at home for a couple of weeks. My usual bed is a low platform with a futon. No one seems to have discussed whether it is difficult to get in and out of bed the first couple of weeks (I am 60, in generally good health and reasonably limber).

Second, should I plan on trying to get some people to be around all day after I get home? A couple of adult children will be up for the surgery, but they cannot stay all that long, and my wife works (hard and long days), so I need to know how needy I am likely to be (e.g. does it make sense to get an LPN to visit?)

I am sure I had some other questions, but have by now forgotten them, so I may add them later.

 

[Lynlw]

have some practical planning questions, which I haven't seen addressed in the forums (did I miss them?)
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One is whether it would be worthwhile to rent a hospital bed to use at home for a couple of weeks. My usual bed is a low platform with a futon. No one seems to have discussed whether it is difficult to get in and out of bed the first couple of weeks (I am 60, in generally good health and reasonably limber).

I don't think you need a hospital bed, (BUT I'm also not the patient, my 19 yo son is)If you do a search here for recliner, you'll find lots of post about how many people sleep best in a recliner for the first week or so after they get home, others like the couch w/ lots of pillows or their own bed w/ extra pillows. IF you own or can borrow a recliner(If you borrow one make sure it is easy to get up and down, if you can be "fussy") some people like to put them in their bedroom to sleep there. but Justin liked his in the family room because it's close to the bathroom (one room you don't want to be too far from) and instead of just sleeping in it, in the family room, he could sit in it when he friends came over to play video games, or nap.
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Second, should I plan on trying to get some people to be around all day after I get home? A couple of adult children will be up for the surgery, but they cannot stay all that long, and my wife works (hard and long days), so I need to know how needy I am likely to be (e.g. does it make sense to get an LPN to visit?)

The first few days -week home at least you should have someone there. would it be possible for one of the adult kids to come up a little later then the surgery and could spend a few days at home with you after? My mom had a AAA surgery and I live 4 hours away, so my brothers and dad were there for the surgery, but I came up when see got ome, to help he around the house, in and out of the bath tub things like that as well as do the cooking.
I don't know that you would need a LPN, maybe a good friend could sit with you while your wife is at work? even something as "light" as a gal of milk is to heavey to lift yourself, so manily the person would just help you get up or make you lunch and keep you company, someone to do your short walks with or take you to any appts you might have.
I am sure I had some other questions, but have by now forgotten them, so I may add them later
Good luck Lyn

 

[Philip B]

Questions

Questions

Hi Ken,

Experiences and advice will vary, but here are some thoughts:

Your recovery time will vary. A common issue seems to be your pre-surgery condition. I was in pretty good shape physically and my overall recovery from AVR has gone quickly so far.

There are a lot of opinions out there about valve selection. Mechanicals seem to be preferred by those who wish to avoid repeat surgeries. Age is usually a factor in recommendations by many surgeons. A common theme seems to be that mechanicals are often recommended for older AVR patients. Tissue valves are often chosen by younger folks and older ones who don't mind the prospects of a future replacement surgery. A major factor for many who choose tissue valves is avoidance of coumadin use. One of my surgeon"s major concerns during our discussion of valves involved my willingness to take my meds if I chose a mechanical.

Your bed question is a good one. A number of folks, who have had AVR surgery, have mentioned sleeping in a comfortable recliner post-surgery. Personally, I found that I could not tolerate sleeping in my bed or my comfortable recliner for several weeks after my release from the hospital. I ended us propping my self up with pillows on my comfortable sofa. My problem was related to sternum pain. It simply wasn't comfortable to lay flat. This is not an uncommon issue after OHS. Others have told me it is easier to roll out of a high bed without stressing the sternum than from a low one. Renting a hospital bed was not anything that I considered, but I live in a rural, mountain community where such services are not available.

It is not a bad idea to have some help for a few days after one gets home from the hospital. How long one keeps help around depends upon recovery rate. I was happy to have my wife around for a few days, but I quickly moved beyond needing her at home. I returned to work fairly quickly after AVR surgery. During my first week back at work, I worked ½ days (mornings) and returned home to nap during the afternoon. I didn't need help taking naps. It was nice to have company when I did walks to get myself back in shape. Unless you are in terrible shape or have significant complications hiring a RN or LPN would probably be overkill.

Again, experiences vary depending upon a lot of issues. My wife and I looked at my calendar last week and realized that I had only missed six days of work due to my AVR surgery Three of those six work days involved my five day hospital stay. The best advice about levels of activity post-surgery you can get will come from your surgeon and cardiologist. Listening to what your body tells you about what you can handle is a wise move. If you overdo things, your body will tell you to knock it off. Again, unless you experience complications or difficulties, I suspect you docs can get you in shape to make the July wedding you mentioned in your post.

Getting one's lungs back in shape after surgery seems to be a significant challenge. Religious use of that nifty little spirometer they will give you at the hospital pays off.

-Philip

 

[tprice54]

Have a plan

Have a plan

2 good questions! I went the recliner route for my first week home, then used the big wedge pillow in my own bed. I definetly needed help in and out of the bed for a couple of weeks...it can really hurt if you move that sternum the wrong way.

I think I recoved pretty quickly...thank God I had no real bumps in the recovery road. I neded help the first week home, until I got off all the pain meds. I had so many pills to take, I couldn't keep track on pain meds, and making any kind of simple meal was hard to think about. Once off the pain meds, my wife was able to go back to work.

Hope this helps.....

 

[Karlynn]

Welcome Ken!

The others did a good job answering your questions. I couldn't find the site for mech valve sounds. But I don't know that it will do you much good. All of us experience different things. Most of us can only hear the valve in quiet rooms at night, or in tile rooms when you're quiet. Most of us are not bothered by it. A few members used some sort of ambient sound machine if it bothers them at night. Many of us kind of like the sound when we do hear it. It reminds us we're alive!!! You will notice the sound more right after surgery until you heal. And it can make a great cocktail party conversation piece.

I think you are making a wise move on getting the surgery done soon. I think you should be feeling fairly good by the wedding. I don't think you'll be up dancing every dance.

As far as symptoms go, you may be having them. It's possible that they grew so slowly over time that your body adjusted and compensated, tricking you in to thinking you are doing fine. Many members who have reported themselves to be symptom-free prior to surgery reported that after they had recovered and felt much better, they realized they were symptomatic but just didn't realize it. But then there have been some people who truly didn't have symptoms and had horrible valves. The body can be a mystery.

Best wishes.

 

[Phyllis]

Welcome, Ken. Here's a valvereplacement.com poll that was taken on mechanical valve noise: http://valvereplacement.com/forums/showthread.php?t=20628&highlight=mechanical+valve+sounds

You've received all good answers to your questions. Best wishes to you and please let us know your surgery date when you get it.

 

[Adrienne]

First of all, the chances are good that you will be able to go to the wedding on July 21 if you have your surgery at the beginning of June.

Second, the first week home you really need someone there to prepare meals, etc. Just to explain to you how weak you can feel at the beginning, I had to use a plastic lawn chair in the shower (walk-in shower downstairs) to sit on the first couple of times I took a shower.

 

[geebee]

Welcome Ken,

Sounds like you are covering a lot of bases and planning is so very important.

As far as a hospital bed goes, looking back, I think it would have been very nice to have. I did not have the room in my house for one so did not even consider it. If you have the room and can afford the expense, I say go for it, especially if you find yourself comfortable while in the hospital.

You should have someone around 24/7 for at least the first week. Everyone is different but just knowing there is help around can make you feel a lot more confident.

Let us know how else we can help.

 

[Marguerite53]

Welcome to our wonderful community!

Great answers so far. I will second the motion for a recliner. I slept in mine for several months. It's the full sternotomy which gives you the discomfort....not the heart pain deep inside. Pushing yourself in and out and off and sideways is prohibited for awhile so as to heal. The beauty of the recliner is that you can just sit back...way back; almost to flat -- brace yourself with extra soft, squishy pillows and actually sleep. Speaking of pillows. I was glad that I packed 2 extra very squishy pillows to the hospital. When I got home I rounded up all the extra pillows in the house to brace myself into a comfy position. I found that laying a pillow over my tummy to brace my arms (or as bolsters under my arms while sitting up) was very helpful.

I just returned from a long plane ride type vacation and noticed more than one traveller with a fold up chair/stool while waiting in line. What a great idea!!! I know camping stores carry these (they fold up straight-like and have a strap for over your shoulder) but perhaps medical supply stores have more sturdy ones. While your timetable is very do-able, I think the one thing you will find is that in the early months of recovery, when you run out of energy, there is no reserve. None. Nada. You are kaput. Now you may only need 30 minutes or so of rest, or a good cat nap......but there just is no fighting it. SO. To have a little folding stool to rest on before you get too weary (in case travel turns into a long security line problem) would be very useful.

Please line someone up for the first week home. Mostly just to be there in case you need something. Bring all your necessary items around the house to a level where you won't have to bend over, reach in any way, or lift or slide (like sliding a window or door is tough). You won't even be able to open the refrigerator door the first night home.....I kid you not!!!

You might still be a little mentally groggy at the wedding. Not in a stupor, but more like you were in the depth of your worst cold and taking heavy cold meds.....just not clear as a bell. Even so, I would vote for getting your surgery ahead of the wedding. The sooner the better. Every day there is improvement so each day ahead of the trip will help you to be stronger.

I do remember that site with the valve sounds but I cannot seem to find it with Google. Doesn't Ross know it? Ross?

At your age I would think a surgeon would be recommending a tissue valve. We'll all be curious to know what your surgeon said and how your visit went.

We're here night and day for any and all questions and support. Fire away!

Good luck. Keep posting!

Marguerite

 

[Susan BAV]

Can you stand one more experience or opinion? Welcome to the site, by the way; glad you found it pre-op.

I have read that mechanical mitral valves can be noisier than mechanical aortic valves; can anyone else confirm that?

My recliner, a firm one, was exactly what I needed post-op; but also, the sternum pain was so bad early on that I needed someone to give the chair a gentle push back for the first couple of weeks. I placed the recliner in a convenient location for my needs.

Also, it is not uncommon, apparently, to have at least one post-op trip back to the hospital for some complication, be it A-fib or some other issue.

I definitely needed physical help for the first few days I was home after a week-long hospital day for the valve replacement, and after that, I needed moral support every few/several hours for a few days or more. The post-op emotions can be pretty delicate -- and that goes for men as well as for women. You may even become unnusually emotional at the wedding...

And you likely won't want a lot of visitors around you either, especially germy ones. Your first cough or sneeze post-op can be excruciating, so first of all, you want to avoid that if possible and, second, you will want to hug a pillow to your chest for support.

Also post-op, there can be some significant back pain, which can be worse for muscular people than for people who might be in a less-buff pre-op condition.

Hope this helps. Take care and please post again.

 

[KenBeirne]

Thanks to everyone and an update

Thanks to everyone and an update

First I want to thank you all for your comments and help. I especially appreciate the thoughts about having people there 24/7, since the idea runs counter to every fibre of my being. I will just have to adjust. My wife will be here, of course, but I was hoping to minimize my impact on her. I will have to see what days my kids might be around.

We have a recliner, but it is a little sleek and small as recliners go (style, dontchaknow ), not one of those full and pillowy ones, so I am not sure how sleepable it would be. I can pile some pillows on a wing of our sectional, which is a chaise, if the recliner doesn't work. But we will get the hospital bed as well. I like to have options.

Karlynn, you may be right about the symptoms. I have wondered whether, rather than any large symptoms, I might just have had 5% lopped off the top, in endurance, balance, whatever. And things are always complicated in DC by sinuses, which could mask anything. So if I get a surge of energy or something I am not used to, I will be sure to let you all know.

I did meet with my cardiac surgeon today (Dr. Rhee at Inova Alexandria) and I have a choice of May 31(day after my catheterization) or June 11. I am probably going with May 31. Also discussed the valve. We are almost at a coin toss between tissue and mechanical, but we both have a sight lean to mechanical(a St. Jude's), primarily because we are thinking of getting me to at least 80, and I would like to make it without another surgery, if at all possible(I realize there are no guarantees on this). As near as I can tell, either decision is wrong (or both are right). I am right on the age cusp -- actually on the younger side of it. Even at 65, I might go for the tissue and hope for 15 years out of it.

Again, thanks for all the help. Let me know if anyone thinks of anything else that might help. I will let you know how things progress.

 

[Phyllis]

Ken, I will put you on the calendar for the 31st- let us know if that date changes. Wishing you the best of outcomes!

 

[ALCapshaw2]

I agree with everyone's recommendation to have someone around for at least the first week. It would be nice to at least have someone check in on you during the second week.

Since you are leaning towards a mechanical valve, I would encourage you to take a look at the On-X Valves (www.onxvalves.com) Do a SEARCH on VR.com for On-X and also "burnett" to find considerable discussion and contact information. As an engineer, I am impressed with the improved fluid dynamics and lower potential for clot formation of the On-X valve. That is my choice for my upcoming Mitral Valve Replacement. Second Choice is a standard St. Jude Mechanical Valve. (I already have a St. Jude valve in the aortic position).

'AL Capshaw'

 

[briansmom]

Good luck Ken,
I'm glad you found this site. I couldn't have made it through my son's last surgery without these fine people. My son did not have any problem with the bed, but he certainly wouldn't have wanted to be alone after coming home. Of course, his situation was extremely complicated and difficult. He got an ON-X valve, so far so good.

 

[Mary]

Ken, I will put you on the calendar for the 31st- let us know if that date changes. Wishing you the best of outcomes!

The 31st is a good day for surgery, Ken!
It's my birthday, so plenty of good karma going around!
Regarding the recliner, I thought it was helpful because getting into, and out of, bed was very difficult. Initially, you don't use your arms and sternum very much (at least I didn't). If you can get into bed without using your arms, (you might try it and see) then you might not need an alternate place to sleep.
But then again, you may!
I'm being a little bit silly, but my point is, everyone's experience is different.
Good luck and best wishes!

 

[Mary]

Another thing, Ken . . . I believe Inova is where Marty, another VR member had his surgery.
I really think you will do well.

 

[WayneGM]

I don't have anything more to add to what others have written. Just wanted to welcome you and wish you the best. Glad you found us.

 

[Adam 12-21-05]

Hey there Ken,

Welcome.

Another piece of advice on the hospital bed / recliner question...

Personally, I'm not a fan of either of those ideas.

Why?

One of the stimulants to recovery is engaging in normal day-to-day activity prior to surgery. By trading off comfort for natural motions to avoid pain, I don't believe you are helping your recovery. In fact, it might do just the opposite.

For example, when I was in the ICU at USC, the day after my Ross Procedure... My nurses requested (actually kind of demanded) that I get out of bed and walk through the unit.

Here's a snippet of what one surgeon had to say about motion following surgery:

"We attempt to get every patient out of bed and taking steps soon after surgery," said surgeon , Jamie Brown, who is a cardiac surgeon and head of the aortic valve surgery program at the Maryland Heart Center and an associate professor of surgery at the University of Maryland School of Medicine, "This greatly helps in the recovery process."

I think you can apply that same principal to the limitations of motion generated by hospital beds and recliners.

That said, it will be somewhat painful. (Like you, I have a low platform bed.)

But, I believe this a 'short-term pain, long-term gain' experience.

Cheers,

Adam

 

[Mary]

Hey there Ken,

Welcome.

Another piece of advice on the hospital bed / recliner question...

Personally, I'm not a fan of either of those ideas.

Why?

One of the stimulants to recovery is engaging in normal day-to-day activity prior to surgery. By trading off comfort for natural motions to avoid pain, I don't believe you are helping your recovery. In fact, it might do just the opposite.

For example, when I was in the ICU at USC, the day after my Ross Procedure... My nurses requested (actually kind of demanded) that I get out of bed and walk through the unit.

Here's a snippet of what one surgeon had to say about motion following surgery:

"We attempt to get every patient out of bed and taking steps soon after surgery," said surgeon , Jamie Brown, who is a cardiac surgeon and head of the aortic valve surgery program at the Maryland Heart Center and an associate professor of surgery at the University of Maryland School of Medicine, "This greatly helps in the recovery process."

I think you can apply that same principal to the limitations of motion generated by hospital beds and recliners.

That said, it will be somewhat painful. (Like you, I have a low platform bed.)

But, I believe this a 'short-term pain, long-term gain' experience.

Cheers,

Adam

I disagree that this particular recliner/bed issue has anything to do with the speeding up of the recovery process.
After my surgery, an occupational therapist came to the room to demonstrate the correct procedure for getting in and out of the hospital bed. For the first 5-6 days, your sternum, although wired together, is still vulnerable. You will not want to use your arms to support your weight getting into bed.

Adam, regarding walking, almost without exception patients are up and walking the second day after surgery. Your experience was not unique. Walking does not really correlate with whether you sleep in a recliner or a bed at night. But if it did, I would venture a guess that you are more apt to walk if you're in a recliner because it facilitates greater mobility.

By the way, Adam, did the therapist use a belt or a harness to help you with your walking?

 

[Lynlw]

Hey there Ken,

Welcome.

Another piece of advice on the hospital bed / recliner question...

Personally, I'm not a fan of either of those ideas.

Why?

One of the stimulants to recovery is engaging in normal day-to-day activity prior to surgery. By trading off comfort for natural motions to avoid pain, I don't believe you are helping your recovery. In fact, it might do just the opposite.

For example, when I was in the ICU at USC, the day after my Ross Procedure... My nurses requested (actually kind of demanded) that I get out of bed and walk through the unit.

Here's a snippet of what one surgeon had to say about motion following surgery:

"We attempt to get every patient out of bed and taking steps soon after surgery," said surgeon , Jamie Brown, who is a cardiac surgeon and head of the aortic valve surgery program at the Maryland Heart Center and an associate professor of surgery at the University of Maryland School of Medicine, "This greatly helps in the recovery process."

I think you can apply that same principal to the limitations of motion generated by hospital beds and recliners.

That said, it will be somewhat painful. (Like you, I have a low platform bed.)

But, I believe this a 'short-term pain, long-term gain' experience.

Cheers,

Adam

I never had heart surgery but helped my son thru 4 and my mother thru 2 and sorry, but I disagree with your advice.I guess this could be one of those things we can agree to disagree on, because i realize you are the "expert" BUT I don't see how being able to not be in as much pain and get good sleep if possible, could possibley delay your recovery. Actually I'm pretty sure part of the reason the hospital beds aren't flat and solid but can move so you can be as comfortable and pain free as possible, is for a reason.
I don't see how moving around post op has anything to do with what you sleep on. Justin made it back to the CCU (on the vent tube) at 5pm, w/ his head elevated, and was sitting in a chair before 10 am the next day and was walking that after noon. I would think if anything, IF you can be more comfortable at night and be able to sleep, it helps with your recovery, since sleep is one of the most important "jobs" you have post op. Sleep, breathe, walk...
I really don't believe all the people in this thread that have been doing this for years and many times more than once, are wrong when they say sleeping in a recliner helped..