heart lung machine

[Ted]

I am needing  an aortic valve replacement am intend to do it at your clinic.. I have an appt with a cardiologist next month at your hosp...but have some questions now..

I understand that being on the pump can cause some depression and memory loss.. how bad is this.. how often does this happen and how long will I be on the pump for this operation..is this more a problem with older people than younger ? One surgeon in Phx ariz told me he had people off in 30 mins.. is that possible??

and the minimally invasive option... does it offer adequate room to safely do this procedure?  and I understand that the cut is to the righ hemisphere of the upper chest.. doesn't this cut more through chest muscles than the full sternotomy?  and create a more noticeble scar?? just wondering...is most of the recovery pain from opening the thorax or from the work to the heart?  

And I also wonder about the ventilater .. my mouth doesn't open wide and my jaw hurts at the dentist.. do they have smaller tubes for people like that so you don't have major pain in that area when you wake up.   how long does it have to stay in after you wake?

I will have a million more questions I am sure when I get there but I wonder if these could be answered now.. they are bothering me..

Thanks

[Cleveland Clinic, MD]

Dear Ted,

Q: I understand that being on the pump can cause some depression and memory loss.. how bad is this.. how often
     does this happen and how long will I be on the pump for this operation..is this more a problem with older people
     than younger ?
A: There is a potential for post-operative neurological changes and the risk and degree of changes depends on the person.  In general younger patients have a lower risk.  The pump duration also will depend on the complexity of the case and what type of vavle is used.


Q:One surgeon in Phx ariz told me he had people off in 30 mins.. is that possible??
A: In the best of all circumstances...

Q:  and the minimally invasive option... does it offer adequate room to safely do this procedure?
A: It will depend on the surgeons preference.  Of course if the "mini" approach is taken and more room is needed it can always be "converted" to a full open heart.

Q: the cut is to the righ hemisphere of the upper chest.. doesn't this cut more through chest muscles than the full
     sternotomy? and create a more noticeble scar?? just wondering...is most of the recovery pain from opening the
     thorax or from the work to the heart?
A: There are more muscle layers to go through but in general the muscles aren't cut but divided aside.  The scar is smaller but a scar is still a scar and will be noticable whereever it is.  The heart itself is not not well enervated for pain sensation so most of the post-op pain is due to the incision.

   Q:  And I also wonder about the ventilater .. my mouth doesn't open wide and my jaw hurts at the dentist.. do they
     have smaller tubes for people like that so you don't have major pain in that area when you wake up. how long
     does it have to stay in after you wake?
A: The size of the mouth is not a problem and as you surmised there are all different sized tubes.  Usually one is awake only briefly before the tube is removed.

[Susan]

Hi Ted!  I had my aortic valve replaced last February (99) and had many of the same questions you have.  I think my biggest worry was the tube because I have a low gag reflex!  I now have a shiny new St. Judes valve and glad for it!  I had virtually no pain whatsoever--some discomfort and soreness, but not what I would call pain and only took one of those strong painkillers in the hospital and didn't even fill the prescription when I went home--3 days later!!  I was walking a mile by the end of the first week and 4 miles a day before I went back to work 6 weeks later.  I am a very young 51 year old, who was otherwise healthy and in good shape--my problem was from a congenital heart defect.  I don't even remember the tube as my wakefulness when it was still in was more "twilight sleep" where I could respond to commands but have no memory of it--which my doctor told me would probably be the case.  As for any depression whether from the heart-lung machine or just the general principles of suddenly being in the category of "heart patient", I can't say I was ever really bothered.  Could "cloud up" periodically, but that is to be expected and certainly not long-term or debilitating.  As for memory loss, I never could remember anything anyway so can't say for sure if there is a difference!  Probably not.  But two real important things to remember on the way to recovery after the surgery---walk walk walk and breathe breathe breathe (using the incentive spirometer they give you).  The more you do those 2 things the better you will feel, physically and mentally, and the sooner you will be back to some form of normalcy.  Most of the time I forget that I even had the surgery and it was only a few months ago.  I feel better, can't hear the valve unless extreme quiet, only reminder is I do take coumadin but that is no big deal either.  Yes, there is a scar, but I consider it a badge of honor and is really not so noticeable.  All in all, it was not for me a bad experience by any means and attitude helps.  You are doing the right thing by asking questions and finding out "stuff" so you know what to expect and I think that goes a long way toward a confident feeling going in and coming out.  Take it from one who has "been there, done that"!  Good luck!

[Hank Eyring]

Hello There Ted,

I am writing you to let you know about a list that myself and several other Valve Replacement patients have created.

I am a 33 year old male who had aortic valve replacement surgery in April of 1999.  I often had questions about stuff like what do other people’s spouses think about their valves clicking, to how do the kids deal with Dad having major surgery.  Also issues about what is involved in approaching surgery, going through surgery and recovering from surgery. We also discuss the use of coumadin since most of us have to take it for the rest of our lives.

If you would like to join a mailing list along with folks who have been through this kind of stuff before and are facing it in the future, just go to the following URL and sign up.

http://frontpage.inficad.com/~hanky/heart.htm

You will find much help with this list and we all learn from each other.

Hope you can join us,

Hank Eyring

[Hank Eyring]

Hello There Susan,

I am writing to you also to let you know about a list that myself and several other Aortic Valve Replacement patients have created.

I am a 33 year old who had aortic valve replacement surgery in April of 1999.  I often had questions about stuff like what do other people’s spouses think about their valves clicking, to how do the kids deal with Dad having major surgery.  Also issues about what is involved in approaching surgery, going through surgery and recovering from surgery. We also discuss the use of coumadin since most of us have to take it for the rest of our lives.

If you would like to join a mailing list along with folks who have been through this kind of stuff before and are facing it in the future, just go to the following URL and sign up.

http://frontpage.inficad.com/~hanky/heart.htm

You will find much help with this list and we all learn from each other.

Hope you can join us,

Hank Eyring

[Comment by Susan]

It is so good to hear that your surgery was successful and you're doing great!  

I'm 49 and have aortic regurg. 3 to 4+ and am looking at surgery one of these years.  The thought of this surgery is absolutely frightening to me and occupies about 100% of my mind.

How long did you go with your aortic problem before you had to have surgery?  Did you have any symptoms beforehand?  I visit my cardiologist every four months or so and have yearly echos, although I've only had one and am due for my second soon, which makes me a nervous wreck, fearing the results.  I'm so afraid that I might need surgery soon.  My cardiologist says it could be two years or it could be 15.

Well, anyway, it's really good to hear all of your positive comments!  Thanks!!

[Comment by Sandy to Susan]

I'm sorry, the previous comments was not from Susan.  It was from Sandy to Susan.  

Thanks!!!!

[Mario]

Hi Ted I had my ortic valve replaced with a homograft May 99 and I too had concerns before the surgery. The surgery itself was not bad at all . I stated many times on this forum that the pain was not an issue for me at all.I did not need any painkillers after the 3rd day. The only problem was severe migraines that lasted about 2 months. Yes deppression was a problem for me and the biggest change was with my memory. I have been working in the insurance business for 20 years and up until the surgery was able to keep all appointments and day to day runnung of the company in my head, as a matter of fact people would call me the walking data book. Now I certainly need an appointment book as well as a organizer...memory has really gone downhill compared to before. However Ted it is much better on the othe side and all will be worth it. Remember every person is different and everyone responds differently to open heart surgery. Recover at your own pace and do the  walking and the breathing.Remember when you first wake up and you have the breathing tube down your throat do not fight it and do not try to breathe on your own let the machine breathe for you, you are constantly monitored for oxygen intake and you will not stop breathing while on the machine. Take care and remember it is not that bad....Mario

[Todd]

Hi, now 34, had aortic aneurysm and aortic valve repaired September 1998 - I believe I was on heart lung bypass sometime near 90 minutes - the valve repair is very techinically demanding (only a few in the world are very successful at it).  I did not require any blood transfusion.  Surgery was not bad, I have no recall of them taking the breathing tube out - but I did fight it when I started to come out (I was told).  Pain was not bad.  I do not beleive that my memory is any different.  I did not have any depression - each day got better. by 8 weeks I was jogging 2 miles and by 12 weeks I was playing hockey.  I have two kids who were about 28 months and 9 months old at the time of surgery.  My two year old saw me in the hospital and new that I had a soar chest - he did not really understand much other than I needed to be fixed and he couldn't play rough with me for a while.  He liked to look at my 9" scar.  Life is ceratinly better on this side of surgery.  The risks at good centers for open heart is now very low - usually near that of any major surgery.  Good luck - I hope your recovery goes well - its good to be informed if you don't let is scare you too much.

[Todd]

Hi, now 34, had aortic aneurysm and aortic valve repaired September 1998 - I believe I was on heart lung bypass sometime near 90 minutes - the valve repair is very techinically demanding (only a few in the world are very successful at it).  I did not require any blood transfusion.  Surgery was not bad, I have no recall of them taking the breathing tube out - but I did fight it when I started to come out (I was told).  Pain was not bad.  I do not beleive that my memory is any different.  I did not have any depression - each day got better. by 8 weeks I was jogging 2 miles and by 12 weeks I was playing hockey.  I have two kids who were about 28 months and 9 months old at the time of surgery.  My two year old saw me in the hospital and new that I had a soar chest - he did not really understand much other than I needed to be fixed and he couldn't play rough with me for a while.  He liked to look at my 9" scar.  Life is ceratinly better on this side of surgery.  The risks at good centers for open heart is now very low - usually near that of any major surgery.  Good luck - I hope your recovery goes well - its good to be informed if you don't let is scare you too much.

[John]

Why does the length of time on the pump cause personality changes, depression, agression, etc.?  Wife was on pump at CCF for 6 hrs.  Medication and/or pump run have made changes.  How long does this last?

[Susan to Sandy]

In regard to your questions, I was born with a bicuspid aortic valve and was told all my life (until age 50!) that I had a heart murmur that was nothing to worry about and I would probably outgrow it.  Since I have always otherwise been healthy, as an adult my doctor appts have been very limited to the ordinary routine.  I moved to a new town and a new OB GYN commented on the murmur and suggested I get a new internist and have some overall work-up.  The new internist commented on the murmur and on my second visit wanted me to have it evaluated.  When he mentioned "cardiologist" I almost fell off the chair!  So I saw a cardio and had an echo which pinpointed the aortic stenosis and that it was pretty severe, but could probably wait 2 maybe 5 years before surgery.  Came back for follow up echo and that was reduced to maybe 1,2 or 3 years.  So I said why wait if it is inevitable.  So he did a heart cath (angiogram by some), and determined that I really should not wait, especially considering my lifestyle (very active, stressful job with lots of flying, driving, etc.) and the evident progression.  So we set the date.  All of this took about a year and a couple of months from internist to surgery.  I did not realize until after the surgery really that I was having symptoms because they had built up over 50 years and therefore not specifically noticeable.  But I did realize that I had a low stamina and shortness of breath, just didn't really recognize it.  All of that is much improved since the surgery although I can still get really tired and short of breath (rare and not really heart related), but still go circles around some of my younger staff!  As soon as the internist said "cardiologist" I got on the internet, went to the library, and talked to others and am teased that I learned enough to do the surgery myself!  I have a very strong faith that God doesn't send us anything we can't handle together and that faith certainly help me through the scary parts (whether real or perceived to be scary).  He was with me and my surgeon all the way.  I had a wonderful and talented surgeon (he had recently separated a shared heart of siamese twins and they both lived) and a good support group.  This was much easier than the emergency C-section I had 18 years ago!  So my advice is to prepare by learning the "techno-babble" of the surgery so you can talk to your doctors and have some element of control--the more you know the more they will tell you.  If you are a religious person, call upon your faith and inner strength.  It's not that bad really, but it is a frightening concept.  Recovery takes hard work as well--it's not about laying up in bed slurping soup!  You will do well, let me know if you have any other questions and good luck!  Susan

[Thank you to Susan]

Thank you, Susan, for the support.

I, too, have a strong faith in God and rely a lot on this faith. When my time comes for surgery, I will have it done at Cleveland Clinic.

I've been having some gynecological problems too, and I think the combination of everything hitting at once has me somewhat stressed.  I had an abnormal pap (mild dysplasia) for the first time in my life and will have it repeated in a month or so.  I always think of the worst-case scenario and worry that if I ever have to have surgery or treatments of any time, what this will do to my heart.  I have mod. to severe regurg. and wonder how anesthetic, surgery, etc. would affect me.  It seems that I will have my heart valve problem looming in the back in combination with everything else.  It's scary.

Thanks for listening and responding and have a great day!

[Cleveland Clinic, MD]

Thnaks to all for their comments.

[Ted]

I am getting very close to scheduling my surgery at the Cleveland clinic also.I am very active and in good shape except for prostatitus which is chronic and a hip that has a bunch of arthritus in it..it will need replaced sometime also...

I know  your concern for everything thats piling up ...

My pap smear is normal  :-) but this is all scarey stuff.. Guess we should just take each day as it comes and try to have a good attitude.. They say that what we are is 10 percent what happens to us and 90 percent how we react to it.. hmmmmm

I hope thats right...

Ted

[Cleveland Clinic, MD]

Keeping a positive mental attitude and a strong faith are key to recoverying from surgery and living life.

[George Kot]

I was 56 when I had a heart attack and quintuple bypass surgery using the heart & lung machine.  Surgery went well.  Recovery seemed to take longer due to heart attack than for those without one.  key is to hang in there and walk, walk, walk.  Treadmill from my brother was a Christmas gift of love last year.  Best purchase you can make for yourself.           Eventually, you physical strength comes back to normal after about 6 months, but will take longer it seems if you had a heart attack.  You may want to use light dumbells to help build up your upper body and arms. Directional memory loss was noticed immeadiately after the operation in that I could not zero in the exact spot where I had parked my car in crowed Christmas parking lots.  This has improved substantially but to not 100%.  Also, I sense a slight memory loss (never tested), perhaps more so when fatigued.  Recent articles lead me to believe it is perhaps linked, in part, to use of the heart lung machine.  If I were planning surgury anew, I would inquire about other options, positive and negative considerations, and what hospitals and doctors in your area are capable of performing heart surgery without use of the heart & lung machine.  I am interested in hearing from anyone who had bypass without the heart lung machine.  Does the Clevelend Clinic perform it and who are the leading physicians performing the surgury there.