Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Aortic Valve replacement experiences, anyone?

3stars
0 Recommendations

I am 7 weeks out of aortic valve replacement. I was Code Blue coming out of the anesthetic and defibrillated. My lungs were surrounded with water and I had two pleural effusions. The electrical field of the new heart repair didnt work, so 10 days later they installed a pacemaker.
My left arm doesnt work, and I cannot sleep on my sides.
I do like to walk. My chest feels very tight on the right side and its difficult for me to breathe normally. In fact I never get a full breath unless I take a an egaggerated full one. I am amazed at how much I can sleep. My Drs dont have much to say about any of these conditions. I would like to hear from others who have had aortic valve replacement.

Explore topics in this discussion:

Exercise Heart failure Surgery Pneumonia Lasix Aneurysms Stress Atrial fibrillation Arthritis Stroke Fever Diabetes Pain Edema Pacemaker Heart attack Congestive heart failure Aortic stenosis Diarrhea

19 replies

Rudywg

I had both my aortic and mitral valves replaced in 1999. This was 22 years after my first open-heart surgery at the age of 25, when I had my ASD patched and my mitral valve repaired.

Six months after my surgery in '99, I developed heart block because of the scar tissue and I also got a pacemaker. In my case I had time to heal from the surgery before I got the pacemaker. I can understand you are slow to recover with both procedures so close together.

Did you get a mechanical valve?

My best advice is to listen to your docs (unless your gut tells you otherwise). Give yourself time to heal. I wish you all the best and certainly would like to answer any questions that I am able to. Rudy

mysparetimedesign

I'm 13 days now after my aortic valve replacement and some reconstruction of the aorta due to enlargement.....today has been very painful as I feel someone has punched me with their knuckles right between my breasts....I feel very fortunate though that I came out of the anesthetic with no lasting effects, though I vomited for 24 hours until the right pain med was found.
I can't sleep but on my side and am wondering if I did somthing in my sleep last night to gain this new pain...but I struggle to sleep on my back right now cause it's not normal.
I know you aren't to lift 10 lb or more but I can't lift a big can of soup without a twinge right now...
And I'm finding myself with absolutely no patience...not a good combo as I have a 13 year old and a 19 year old who decided to party and then move out all in the week I was in hospital!
I'm thinking it is just cause I have "control isues" lol and can't do anything myself, but sometimes it feels more than that..I also find myself feeling very cold in my arms and legs at different times of the day for no apparent reason...
I know I'm just out of hospital but it's frustrating.......however I do count my blessings that I had so few problems immediately after surgery....I do hope things get better for you!

scholastic

Hi, I had aortic valve re-placed in 2006, I have a bovine valve in now (cow part). I went through the same things as you , and was in the hospital for 12 days after surgery. It took me about 6 months to get back to as close to normal as you can get, but it was a battle the whole way to get there. It has now been 3 years for me and i still have what is called "pump head" . If you google this it will explain exactly what this means. I Had no time before my surgery to research what would be the best valve choice for me, so the doctor made that choice. I would have choose a mechanical valve and never had to face surgery again for this. Now I will probably never get through another surgery because my lungs are so damaged and no doc. will put me back under to do it . I dont regrete having the surgery done, as it did save my life and I was able to see my now 2 yr old grandson born. I am trying to do everything right so i can take care of this valve as long as possible. I use to be afraid when ever I would feel a strange pain or a different heart beat, but soon learned that too is normal after such a big surgery. I now live each day as full and good as i can, and have finally been able to sleep on my side and get a full nights sleep .( This has taken 2.5 years though). The docs. tell you it takes about 6 ti 8 weeks to feel right again. NOT TRUE! more like 6 months to a year to get all movement and feelings back and be able to lift and do daily chores. I still have to nap every day for about a hour , otherwise I am in bed by 7:30 pm. lol. Good Luck, and remember you are here and ok, even if it takes a while to feel like it , You will get there. So take it easy and go slow , it will get better every day.

3stars

I am only now realizing what a huge surgery this was. I am so grateful to hear from others to understand what has happened to me. I have felt very alone. My valve is bovine. I wasnt given a choice. I was told the new mechanical wasnt ready yet, and that I will have to go through another surgery in the future. I tell myself that the pains and tics, sleeplessness and exhaustion are improving. But it's hard to breathe. That and the rapid heatbeats out of nowhere are frightening. I know a great deal of this is now up to me. It is nothing short of miraculous that I have made it this far. I looked up "pump head". That we survive these surgeries must give us the strength to overcome the hardships that accompany. That's why I sought others with same. I need to know i am not alone.

kk_stl

3flags
My mother had her aortic valve replaced in May. She received a cow valve and the incision was a mini sternotomy about 3 inches long at the top of her chest bone. She is 79 years old.

With any open heart surgery, there is a risk of bleeding. She was fortunate and did not have to be reoperated on. But she did receive a blood transfusion post surgery.

To our amazement she didn't need powerful pain medications. In the past her pain thresholds was always very low so I still don't understand this from a medical standpoint. We had alot of people praying for her and I am guessing maybe that had more to do with it.

Her biggest obstacle post surgery was the residual fluid in her lungs. They add water for the bypass procedure to preserve the organs. She was never short of breath before the operation. In fact you could classify her as asymtomatic for her critical aortic stenosis. Hers was most likely caused by years of high blood pressure which the doctors could not figure out how to lower with medicine adjustments.

They treated her with periodic bipap breathing machine treatments where air is forced both in and out of your lungs. She did not tolerate these treatments very well. They did not want to prescribe her a sedative during these treatments since they have a tendency to decrease your breathing capability. So, we comforted her as best as we could bedside holding her hand and stroking her hair and trying relaxation techniques. It helped soothe her but it about wore us out doing this around the clock.

It sounds like you are walking. That is crucial as well as sitting up in a chair for the fluid to drain properly. If you need to rest, try sitting up in a chair instead of laying down.

Lastly, they doubled her dosage of Lasix to 80mg to get rid of the fluid on her lungs. It was good she was in a hospital setting where they could monitor her closely with blood tests. When her kidney function became impaired, they halted the Lasix for a day and then resumed again. Her kidneys recovered and she is on a maintenance dosage of 40mg daily.

It took awhile for my mother's strength to come back to get in/out of bed and to the bathroom and to gain control of her bladder and bowels.

She just started her cardio rehab. Since she was terribly deconditioned prior to the surgery, it will be a slow process to get her to a level where she can walk beyond a few hundred feet without needing to rest. Her onset of symptoms was gradual so she hasn't recognized an improvement from the surgery until they build up her endurance, etc.

In the hospital, it also took some time for her blood pressure to regulate itself. After they added back her 4 BP pills she took pre-op things settled down back to normal.

She also developed instances of fluctuating quickly between extreme coldness and extreme hot flashes. It was a challenge to comfort her with this but bringing in a fan and using cold wash clothes helped and keeping a stack of blankets nearby to quickly change things.

We were warned that the sinus node is close to the aortic valve and sometimes a permanent pacemaker will be needed. She received hers post op. They restricted the movement on her arm at the side they inserted the pacemaker on. Since she is right handed, they put it on her left side.

When she went into complete heart block and they had to bring her back, they decided it was prudent for her to have a pacemaker. She always had a slow beating heart to start with...in the 50 and 60s.

I had to learn to take each minute at a time with her recovery in the hospital. Just when we thought she was out of the woods, something else came into the picture and she took 3 steps backward.

I think overall she is extremely fortunate that she didn't have more complications or side effects. I heard of patients who had embolisms just before they were ready to go home. One man eventually lost his leg to it. Others needed a trach tube inserted and developed pneumonia. Others had fallen when they were transferred to the step down floor, trying to goto the bathroom by themselves. You learn alot spending time in the ICU waiting room.

When my mom went into complete heart block, they ran a bunch of tests to rule out other problems that could develop. I don't remember the names of those conditions but what I learned is that there can always be complications, if not within the heart in other areas. We almost had a sepsis incident when my mothers bowel was blocked. They discovered it when she went into heart block.

If you are having difficulty breathing it sounds like they need to do something to get the fluid out of your lungs. I would contact the surgeon's office for guidance. I'm guessing both of your lungs have fluid built up with your comment about 2 pleural effusions. We were told it could take several months to determine if the fluid problem will be permanent or not. I never got a clear answer if you called the fluid build up congestive heart failure. Typically the fluid for CHF is blood, not water. Nevertheless, you should be weighing yourself at least every other day and reporting any weight gain/loss of 3 pounds to your doctor.

People remarked that my mother's voice sounded stronger than pre-op. Other than that we will just have to be patient to see additional results. The risk of sudden death from her aortic stenosis was low and it was debatable about whether she had symptoms or not. With symptoms, most folks only live for another 3 years...without symptoms indefinitely. Interesting enough, they reduced the obstruction that occured below her aortic valve when they did the surgery. It is called a septal myectomy. Her heart wall (septal) was too thick. The obstruction developed from the aortic stenosis. I'm thinking that procedure helped improve her blood flow tremendously along with the new valve. The old one was severely calcified.

Other than stroke and afib I think the biggest thing we will have to monitor for her is if her mitral valve will start leaking now. It was classified as minor so the docs decided not to fix this one yet. They do mitral valve repair via robotics now so that should be more mainstream if that need ever arises.

Congratulations on getting through such a major surgery! We will keep you in our prayers that your symptoms go away.

I will be creating a journal in the upcoming weeks detailing her journey. I am amazed how she barely remembers anything in the hospital. So maybe asking the caregivers about what to expect, etc. for surgeries will give patients a more accurate picture of what really happens. I am thankful that I carried the stress instead of her even though I think I aged about 10 years!

Her only concerns post surgery was the bipap treatments, her fear of chronic diarrhea, her arthritis pain flaring up and her restless legs keeping her from sleeping...no complaints about her heart or pain. She kept us all on a short leash but that is the way she has always been. She chewed us out quite a bit during that time about leaving to goto the bathroom or to get something to eat. She had someone with her 24/7 and with only my sister and me, it was exhausting.

Her patience level was low but it always has been that way and her "all about me" attitude with the nurses was a challenge when they had to take care of several other patients besides her and she was bothering them constantly with requests to sit up, heat up her food or didn't like how they timed her medicine, etc. She was in a "hotel" mentality with her expectations instead of a hospital. I was able to keep my cool and let it bounce off but when I had my sister be responsible for my dad and do her hospital shift she about lost it. I told her "welcome" to my world. My dad was not liking all the extra attention going towards my mom so he acted up quite a bit on her.

The only other thing that was somewhat problematic after being home was my mom's appetite. It is coming back now slowly.

KK

sweetbanker

I too have to have the aortic value replaced , this is kinda scary .I am not in a dire need to have it done doc says better to do it sooner then later when my symtoms become a problem., I have severe to moderate stetnosis. I have 9 stents placed in the last 7 years, im now 47. Reading the problems of recovery has me a little worried. I know it takes time and 3stars and mytime you'll be getting better everyday just need to take it one day at a time. Im glad we have some place to share :)

houston

I did not realize that people lost their legs today. I had a lot of problems with the leg and finally went on a wound vac. That is scary. What happens that they can't save the leg?

kk_stl

Houston
I believe loosing the leg had to do with poor circulation as a result of controlling the embolism/blood clot. They tried several surgeries but could not save the leg. Yes, the patient's wife was quite upset and didn't know how her husband was going to deal with it. But she agreed that his life was more important than a limb in the big picture of things.

I don't mean to scare those folks into not having the surgery but do make sure you line up friends and caregivers for post surgery care. As difficult as it is for the patient the emotional stress is probably 10x worse for their loved ones to stand by feeling so helpless. You will need someone there to be your advocate. I also think healing is expedited when you are surrounded with positive support.

Sweetbanker
That is the same advice they gave to us about the timing of the surgery...better to get it done before your condition gets too bad or you develop other comorbidity problems like diabetes. Also, percutaneous replacement of the valve through a catheter, much like your angioplasty test, may become mainstream by the time you need it. For my mother to wait another 5 years was questionable at her age. Both her doctor and we were glad she had it done when she did.

I should also mention that there were other patients who walked the next day after surgery. So, each person has their own schedule for recovering. It was difficult to not get worried when we saw other people around her getting well faster.

Our confidence in the doctors and hospital went a long way in knowing that she was getting the best possible care.

Something else that I wasn't prepared for was the delirium and craziness that can occur from the pain meds. I think this is more of a problem in the geriatric patients.

Underneath my mother was full of fear that she would not make it through surgery. After surgery, some of the nurses called her fiesty but it was her toughness and fighting spirit that made her determined to get better and to get the hell out of the hospital. She was not afraid to be heard when she needed something. A hospital is not a place anyone should want to hang around. :-) She was a different person once home in her familiar surroundings.

Many geriatric patients are discharged to a skilled nursing facility before being able to go home. We discovered this fact just before her surgery. Our third opinion surgeon revealed this fact to us. Yet, we still went into the surgery thinking the 5-7 day hospital stay was the "norm" for her age. That was far from accurate. It made it very difficult for my sibling from out of town to extend her stay. Had we known the average time was much longer upfront we could have prepared better.

Also, unsettling to us was being bumped from first on the surgery list to last for the day finishing around 6:30 or so. Younger patients were getting postponed till the next day so I guess we should be glad that didn't happen to us.

No matter how much I tried to leave no rock unturned in preparing everyone...unexpected things happened. I guess life is that way in general so I probably learned a valuable lesson.

My dad went through open heart surgery 18 years earlier and I was too busy at work to prepare myself or be involved until the day of surgery. I vowed I would not let myself be surprised like that again. I am happy to report that the drainage tubes now empty into a closed container vs. the buckets on the floor. lol They also did a better job covering up the tubes with a gown this time around.

My mom admitted that she did alot of worrying over nothing beforehand. It was not as bad as she had imagined and for her to barely remember anything from the hospital is amazing.

I guess I can understand why more information isn't told to the patient beforehand but somewhere the family or people responsible for their care needs to be forewarned. We found out about the BP fluctuations and edema side affects from a PCP, not the surgeons. Since we were scrambling at the last minute, one week before surgery, to find a new PCP, we didn't have much time for it to sink in and translate it into hospital time vs. general recovery time.

We spent alot of face time with support staff before the surgery but nobody was as candid as this PCP. The surgeon's staff only talked about the risk of death, stroke, or heart attack. Even the anesthesiologist staff we talked to one week before the surgery told us 4-6 weeks was the average hospital stay. When we called her on it she came back and told us to discuss it with the surgical support team. The surgery team gave us canned answers like it varies by patients but it is typically 5-7 days. I just figured the surgery folks knew what they were talking about more than the anesthesia team but I was wrong.

All in all, everything turned out okay in the end but knowledge is power. That is why a site like this is so beneficial for pre-op patients. I'd rather hear all that could go wrong and hope for the best as I'm not one to like surprises. :-)

KK

kk_stl

Ladies,
After rereading my posts I wanted to clarify that those post surgery complications were not solely from AVR surgeries. The ICU was for both heart and lung patients but the common thread is that they had to spend time on the heart/lung machine.

There are 3 surgical options available for isolated AVR. If you need a bypass, the surgeons will probably opt to do a full sternotomy. If you decide to explore minimally invasive surgery options (mini sternotomy or thoracatomy), please do your homework and get solid facts from the surgeon on how many surgeries he/she has performed using this technnique, their outcomes, and their speed (i.e., how much time you will be on the heart/lung machine). If you have a hightly experienced surgeon doing minimally invasive surgery, there should be no increase in risk in doing traditional vs. minimal surgery. You will be able to get around faster with less mobility restrictions after a minimally invasive surgery. There also is a reduced risk of infection at the wound site not to mention a more cosmetic appealing result. As far as I could tell in my research, post operative pain from each type of surgery was the same.

Hope this helps those in the pre-op stage.

KK

kathyinkc

I had my aortic valve replaced four years ago, on cinco de Mayo. This was my second open heart surgery--I had another surgery 30 years prior. In the first surgery, I had a repair for a supravalvular stenosis.This time, I received a mechanical valve, and in the same surgery, I had one coronary artery bypass, the Maze procedure to correct atrial fibrillation, some scar tissue from my previous surgery removed, and a couple of aneurysms repaired. While I certainly had some discomfort after both surgeries, the pain management in the more recent surgery was much improved from 30 years ago. I recovered in about 2 months, enough to feel strong enough to go back to work full time, and I am feeling great now. My neighbor just had his aortic valve replaced, and he, too, is doing very well.
I feel for those of you who are struggling. Whether you are pre-op or post-op. I encourage you to talk frankly with your doctor, describing your fears and/or symptoms--he/she is in the best position to help you.

3stars

These are all pretty amazing recounts. I realize that different ages of heart patients will definately shape a unique recovery. I am not an "old" 59, but i sure had such complications that survival was, and still is, a question. I think once a heart patient, you are more cognizant of the enormity of the task, and of the amazing medical technology. It's 2 months, i still cant use my left arm, i still have trouble breathing because my chest is tight and a deep breath causes pain. I have spoken to the Drs. and like other things, this is just my experience. It doesnt mean it will happen to anyone else. I do know i didnt have a choice, this had to be done immediately. Lately people have been telling me how much better i seem. It's easy to miss that, dwelling with the daily problems, but when i hear that, i remember coming out of the hospital and that condition was truly worlds away from how I am now. So I am letting myself sleep as much as I seem to need, and getting exercise as i can. So, Sweetbanker, no fears, just insight. You have the opportunity to go into your surgery strong and informed. This can only make it better. Time is on your side in many ways. Best to all of us who are the patients or the care givers. What incredible lessons we are learning!

Marilyn37

Just a quick note. I had robotic mitral valve repair (unfortunately it did not hold) and was told that my recovery time would be 3-6 weeks. WRONG! In spite of the complications, I noticed a dramatic imporvement almost exactly 6 months after. I feel that the original expectations complicated my recovery. I felt that I was doing something wrong because I was still so exhausted, but not realize that this is a HUGE adjustment for the body and that TIME is more important than any medical intervention in recovery. I wish I had been given the permission/appropriate expectation. That would have helped.

The other factor that has been important has been regular participation in Cardio rehab--not my idea of fun, but I an doing it as hard as I can 3x a week. For a long time, it seemed to be draining the little strength I had, but slowly I realized that physical strength has increased some and feel muscle in places I have never felt it before, There is some pride in that!

On my most recent ECHO the regurgatation is no worse that it was in February--which is a good thing. The challenge is to live in the NOW, to breathe through the scary times when heart beats seem strange and energy isn't there, and not allow the panic to overwhelm. We are who we are and we are strong sisters who have endured extremely serious surgery. We must give ourselves time to recover.
Marilyn

terodac

Yes, I had the bentall procedure almost three years ago in November. Sorry you had such a ruff time of things :( I am also a member of a web page that is nothing but valve replacement members and other things try it, very good web page also. I only wish I would have found it before my surgery. Good Luck, I am now just getting use to my new normal life! Blessed to be here! Please try the sight!

http://www.valvereplacement.com

terodac

Have you been to rehab? That would really help you if there is one close by your home!

3stars

Hi All, Im back in the hospital with fever and tight chest.
They have ruled out all the diffficult possibilities so I am now waiting for cultures to grow and the fever to go away. This tightness has never gone away, no explanation- after all the Drs and all the echos, and TEE and ultrasounds and xrays. I guess this is my experience.
Terodac I am awaiting response from insurance for rehab. A monitored program strengthening is very productive. Meanwhile I walk as I am able. Thanks for the new web site info. Other experiences are helping me to understand my condition a bit better, and encouraging as well!

Annie7

3stars, I wish you all the best. You are in my thoughts and prayers.
Annie

mysparetimedesign

Aw, sorry to hear about this, but you are in the right place if you are feeling this way....and yes keep walking and keep positive thoughts....

Nune

Hi

Please give it time as 7 weeks is no time at all for open heart surgery.
I had an aortic heart valve replacement with a triple bybass 2 yrs ago. I had a plural effusion also. I did not start to feel anything like human for at least 4 months.
Your heart needs to repair and you need to heal.
I have all sorts of difficulties sleeping and still can't sleep on my left side.
Please be patient Rest ,walk and build up your stamina s l o w l y.
Good Wishes
Elaine

Carolae

I was sorry to have read about the problems you had with your Aorta valve surgery. I had mine done 10 years ago and I hate to say this, but never had one bit of pain or discomfort. Even though I had a catheter in me for a week, I still felt fine and didn't have a problem. I actually went home and went back to work 6 weeks later....much too soon according to the doctor, but why stay home when I was fine? Since then, I've had a dual pacemaker implanted and had no problem either. I think some people have more pain, etc. than others and then there is the problem that the surgery may not have gone as planned. My friend, who had surgery years ago, is now experiencing a lot of pain & fullness in her chest. The doctors think it might be from scar tissue but another opinion says that is not the case. She is having another test done today. Hope you are feeling better as I see you posted this in August.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You