My wife has severe aortic stenosis and needs surgery

• By purple66
• Reply 3440047
• October 8, 2012 at 1:20 am
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bravo64,

I can completely understand why the two of you are so scared........open heart surgery is a big deal and then there's that fear of the unknown. Take a deep breath and try to take it all in - there is light at the end of the tunnel.

I am 46 years old and was born with a bicuspid aortic valve which I had open heart surgery to repair at age 13. Then when I was 43 years old it was time to have that poor old valve replaced. I had critical aortic stenosis and severe aortic regurgitation.

When my surgery was planned I didn't really have too many choices with the hospital......I was uninsured and thank heavens the nearest cardiac hospital accepted me on a "self pay" basis. I was assigned to a surgeon by my cardiologist and I did read up on him and fortunately was pleased with what I found and read. He pretyy much made the decision for me regarding what type of valve - he said he didn't "believe" in mechanical valves for whatever reasoning. From what research I did I was leaning toeards mechanical due to my younger age, but I felt confident with his decision because he had ALOT more experience and knowledge than I did. He chose a porcine valve for me.

The surgery was about what I expected......I mean I knew it wasn't gonna be a walk in the park. I was somewhat surprised how quickly they had me up and walking (less than 24 hours) I did develop heart block (a rythm issue) after my surgery so I was in the hospital for 10 days as I also got a pacemaker put in. That was longer than most stay. The electrophysiologist who put in my pacemake kept joking with me asking me "what are you still doing here?"

One thing I tell people is if they give you brochures on what to expect for your recovery know they should be viewed as loose guidelines as recovery is intensely personal and varies from patient to patient. I expected too much too fast. Tell her to take her recovery at her own pace and allow things to happen in time. Also, if you are offered cardiac rehab afterwards I would strongly urge her to attend. It helped me so very much. I learned to trust my own body exercising again under nurses supervision and built up my stamina again.

I was diagnosed with COPD in February of 2010 and pulmonary hypertension in June of 2011 but didn't have those conditions at the time of my surgery.(never smoked by the way - just happened anyway)

I wish you and your wife the best of luck,

Jeanne

• By LADC
• Reply 3440234
• October 8, 2012 at 6:42 am
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Well Jeanne covered a lot. I would add a couple of things. (1) Please be there for her to act on her behalf when she cannot do so. Ask a ton of questions and if you are concerned with something that is or is not being done, demand answers and action. (This is precautionary--not intended to imply anything except EVERYONE needs an advocate.) (2) Ask about side effects of the surgery, i.e. pleural effusion (fluid in the lining of the lungs). I had this three times post surgery resulting in congestive heart failure. I'm fine now, but that frightened me since I had not been informed of the possibility. I have a bovine valve. I'm sure you've heard that with tissue valves (porcine/bovine), your wife at age 46 will likely have to have a second surgery 15-25 years from now. If she has a mechanical valve, she needs to be on blood thinners for the remainder of her life but will not face a second surgery. Very important and Jeanne mentioned this, please do not depend upon brochures you get in the hospital/drs. office to gauge what is a normal response. These brochures are quite optimistic I find regarding recovery. She likely will not feel back to her old self for a few months. You might prepare or have someone else do so, some small meals to be frozen. She likely will not feel like eating much, and certainly not cleaning or cooking for sometime. This surgery is done routinely. My guess is she will do fine, but recovery will take some time and expect some post-surgery depression which generally is temporary. Good luck. Gail

• By bravo64
• Reply 3440933 · In reply to 3440234 by LADC
• October 8, 2012 at 11:26 am
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Thanks, LASCIVIOUS for your advice and comforting words. I will pass them on to my wife, she really needs some good news right now. We were just told that they found some nodules in her lungs and now want to perform a bronchoscopy(?) To rule out cancer. They said they could be malignant or benign. You can just imagine the fear she is having right now on top of everything else. As far as questions for the surgeon, I'm really getting annoyed now. I had a bunch of questions ready for him, however, he always makes me feel I'm questioning his ability and always rushed. He is however, considered to be one of the best in our community. I was even considering moving her to another hospital,however, I don't know where to begin. I feel soooo bad for her especially because she has always been apprehensive of doctors/hospitas to make it worse, she just lost her father to cancer about 4 months ago. I've been doing a lot of research and finding out that there are some very good hospitals/doctors around the country, but like I mentioned, I don't know where or how to begin this process. Thanks for listening. Any advice would be greatly appreciated!!

• By bravo64
• Reply 3440940
• October 8, 2012 at 11:28 am
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Sorry, miss spelled. Meant LADC.

• By KilkennyRose
• Reply 3441171
• October 8, 2012 at 12:35 pm
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I concur with what Jeanne and Gail said. I had OHS for a defective aortic valve in March. (They also did a single bypass "since they were under the hood". My surgeon has a sense of humor.) I feel like I'm about 95% recovered right now. However, I feel so much better than I did in years. I no longer get angina from climbing a flight or two of stairs.

We, too, had little choice in a hospital doctor, because my surgery got moved up on short noticed, but we were very happy with the care we got. It's too bad your doctor seems impatient and oversensitive, but his skill in the operating room is the most important. See if he has a physicians assistant or nurse practitioner who could better answer your questions.

I think it's great you're so involved and proactive. My husband did quite a bit for me that way, especially watching over me the 5 days I was in the hospital. We had had a bad experience with an unrelated surgery 6 months earlier in a different hospital, so he was a little gunshy, but the nurses and other staff did a great job of answering questions and listening to our concerns.

I have a mechanical valve because I am in my early 50s. My surgeon didn't give me a choice because of my relatively young age. I didn't argue because I didn't want to be back for more surgery in a decade or so. I do hear it when I am in a quiet area, but it doesn't bother me. I actually find it comforting. The coumadin isn't that big a deal. I see my GP about once a month to check my blood to see if it's too thick or too thin. We adjust the dosage to compensate. You do have to get educated about which foods have a lot of Vitamin K, because that affects it. You can still eat green, leafy vegetables, you just have to be consistent.

Heart surgery has come a LOOOONNNNGGG way since my late father-in-law had it at the Mayo Clinic in the 80s. I, too, was up and walking within 24 hours of surgery. Not very far.

One thing I did for my recovery was rent a recliner with motorized assist. We didn't have any recliners that were easy to get out of or comfortable to sit in for long periods. I slept in the recliner for a week or two. A lot of things hurt to do after surgery, but it's only temporary.

• By Antigone
• Reply 3441886
• October 8, 2012 at 5:22 pm
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A tissue valve will mean she will need another 2 or even 3 surgeries, as they don't have good longevity in those under 60. It's possible she may get about 10 years from the first tissue valve, or it may not even last her 5 years. It's a difficult surgery/recovery, one I would not want to go through again. Repeated surgeries increase in risk and are often more difficult for the surgeon, too.

I was leaning towards a tissue valve, and slightly older than your wife, and my surgeon told me a tissue valve would mean at least 2 more surgeries for me. That was the deal breaker. I got a mechanical valve and am very thankful for my surgeon's wise advice.

• By houston
• Reply 3442406
• October 8, 2012 at 8:56 pm
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I picked the tissue valve, because I did not want to be on a blood thinner for life. They are doing the aortic valve in a cath lab now for some people. I would think by the time your wife would need a replacement, they would be doing them this way. They have now done the mitral valve the same way. it is hard to tell you which way for her to go. If fear of replacement is number one, then I would not go with a tissue valve. I hit the 7th year the last of August, and I hope it goes a lot longer. I am very active and wanted to be free of blood thinner that one has to take with the mechanical valve.

• By Antigone
• Reply 3442510
• October 8, 2012 at 9:37 pm
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There is no guaranty of being free from anticoagulants with a tissue valve. It is common to develop afib after valve surgery, for some it will be chronic and require taking an anticoagulant for life.

I've been taking warfarin almost three years now; most of the time it's completely trouble free: a blood test once a month to make sure I am in targeted range, takes about 15 minutes out of my day. As far as diet goes, I freely eat green vegetables and salad greens; there is no need to restrict intake as the dose of the med is tailored to the diet, not the other way around. It's not uncommon for it to be a bit unstable a month or so after surgery, but after that, it should usually settle down and be easy to maintain.

The catheter valve replacement, or TAVI, for now is only for those who have little or no chance of surviving regular surgery; in other words, it's only for people who are very very sick.

As for living an active life, anticoagulants do not interfere with that. I trust your wife is not a stunt woman or doing dangerous activities with her body. Many with mechanical valves live active lives.

• By Jeanz
• Reply 3442596
• October 8, 2012 at 10:12 pm
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A good forum with lots of infor is valvereplacement.org

• By houston
• Reply 3442733
• October 8, 2012 at 11:08 pm
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Usually if you have A fib after surgery it returns to normal. I actually do not know anyone that had the tissue valve taking blood thinners, but I know that it can occur later.
It is true that the cath valve surgery right now is only for certain people, but I think they feel it will be for the general public. Heart procedures are changing all the time.
As for warfarin, I am surprised that you can eat anything that you want. I have a friend on it, and she is restricted about eating certain foods.
As for the decision about which to pick, I would advise anyone to speak to their doctor to get the information.

• By Antigone
• Reply 3443652
• October 9, 2012 at 10:06 am
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Yes, afib after valve surgery usually does resolve and is usually temporary, but not always; however I know a few who have had continued problems, and I know some with tissue valves who must take an anticoagulant for life because of it.

It is a total myth that diet must be restricted with warfarin. I got the little booklets in the hospital about vitamin K content in food, and threw them out. Vegetables and greens do not need to be restricted. The dose is adjusted to the diet. I have never limited my intake.

Yes, everyone should discuss valve options with surgeon. They tend to lean one way or another. I am grateful my surgeon recommended mechanical. This is not a surgery you want to go through again.

• By Siun
• Reply 3443939
• October 9, 2012 at 11:34 am
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Bravo, Just hoping that you and your wife are beginning to get some clearer information and that the doc is more responsive. This must be such a frightening time for you both. One thing I've learned from the conversations here at Womenheart is that nowadays so many dire conditions can be treated and lived with - in fact lived with quite well. Please send our best to your wife and know that prayers are heading your way.

• By bravo64
• Reply 3444072 · In reply to 3443939 by Siun
• October 9, 2012 at 12:17 pm
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Thank u for the kind words, Siun. Unfortunately, I'm still having issues with some doctors, more specifically, one of the cardiologist and the cardiovascular thorasic surgeon. I explained to the nurse the other day the issues I was having and she advised me to speak with the the charge nurse and possibly the patient advocate. I told them I had a lot of unanswered questions and wanted to schedule a meeting with the hospitalist and surgeon. They said they would get a hold of the hospitalist and pass this on. The nurse came in the room a little while after and said the hospitalist would be in to speak with me. Needless to say, he never came. I that night I made a list with my questions for the surgeon. The following morning, the surgeon came into the room. I explained to him that I had several questions I needed answered. Right away, I noticed an attitude. I started asking my questions and he was very quick with me, again, not giving me clear, direct answers. I always feel rushed with this guy. I know, everyone is probably thinking, just switch surgeons. This particular surgeon was highly recommended and is supposed to have a good reputation. However, I'm not seeing it yet. We have a big decision to make. Do we remain in this hospital with this surgeonor look to go elsewhere? I don't know where to begin on how to go about doing that. She just had a bronchoscopy performed this morning. The did a "broncowash" they called it. Pulmonary drs said she had infiltrates deep in her lungs that they took out and sent to lab. Felt it might b associated with the pneumonia. Anyway, thanks for listening!!

• By Ponygirl
• Reply 3452842 · In reply to 3444072 by bravo64
• October 12, 2012 at 12:11 pm
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Hello there--just my two cents: I had a complex mitral valve repair that was performed by a very skilled surgeon who was recommended to me by three cardiologists, but he had no time and no personality--he told me on my initial visit that he could "fix my valve and I would resume my life" and that is a quote. My questions were answered abruptly and quickly and I was on my way and I only saw him once after the surgery (my family told me that when he came in to see them after the surgery he simply said "that the surgery was a difficult one" and left. Having worked in a hospital for 20 years, I have found that this is an attitude common among surgeons so it did not bother me. My own thinking is that I would rather have a a highly skilled surgeon who is ranked very high up the ladder by his peers to fix me correctly since this person is not going to be my friend. I know that this is an extremely scary time for you, but sometimes if all else fails, you have to put some trust in the skill of the doctors who are treating your wife (especially if you have done some research into the surgeon and he has come back with the all-clear). That being said, you also need to be in a facility that specializes in valve repair/replacements. I do not recall whether you had said whether this was the case. I did travel to Yale since this was where my surgeon was located and my other choices had been Cleveland Clinic and Mt. Sinai in New York. Again, it is unfortunate that we have to be subjected to these attitudes during times when we need support. I will keep your wife in my prayers that all will turn out well for both of you. --PG

• By bravo64
• Reply 3453061 · In reply to 3452842 by Ponygirl
• October 12, 2012 at 1:42 pm
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Ponygirl,
Yes these are some very trying times. We are both very nervous and skeptical of the healthcare we are receiving. Update, yesterday. We were told that the surgeons would not be able to perform the surgery. This is exactly what I didn't want to happen. The surgeons said they needed some type of ventilation assist machine due to her pulmonary hypertension and something to due with assisting the right side of the heart during the surgery. My question was, you knew she had this pulmonary hypertension 2 weeks ago and knew you didn't have the machine then why did you lead us a long for over 2+ weeks? Well needless to say, they didn't have a valid reason. So, yesterday, we were faced with having to go to another hospital. They recommend shands in gainesville. We were beside ourselves faced with this decision. Not knowing where to go, we decided to accept their recommendation and were transported via ambulance to shands. When I arrived last night, all I can say is, "holy crap" what a difference between the 2 hospitals. We went from a 5 star looking hospital to what looks like roach motel. I tried to remain positive with my wife but it was sad seeing the look on her face. She looked horrified. We both thought, "did we make the right decision?" The nurse that came in, looked like she was 16 his. She attempted to install an iv and explained to my wife, "I haven't done many of these. I will only try one time." She placed the iv and felt she installed it correctly and cheered like a little kid. Wow!!! It gets better. The same nurse then begins to ask my wife, "what Meds are you taking?" My wife asks her, "don't u know?" I don't remember all the meds given from the previous hospital. Again, I tried to remain positive in front of my wife trying to focus on the important reason we are at shands, the expertise of the doctor, however, its still scary. Oh, by the way, they have my wife in a room that she shares with another patient. There is only one bathroom they share. Her roommate has, I think 2-3 young kids and some other person hanging out in the room, very noisy. They all slept in the bed together last night. Constantly playing loud music/tv. Very inconsiderate. My question is, isn't this a hipa violation? They hear all the personal conversations with the medical staff. Very frustrating!!!!

• By LADC
• Reply 3453469
• October 12, 2012 at 4:51 pm
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Ok, this sounds a little too crazy. After my surgery, I had complications that came close to killing me--mostly because of what my sister and my dear nurse friend considered neglect by my surgeon's office. I told a PA from the surgeon's office that I felt I had come close to dying several times. He told me that was a pretty accurate assessment! My sister has a good friend recently retired from senior management in the largest hospital in my state. She told my sister to ask to speak to someone in Risk Management--this was after Pam was told no hospitalist is available to CICU and a bunch of other nonsense. Pam demanded to speak to someone in Risk Management and Voila, she was surrounded by concerned hospital staff who insisted my surgeon's office to take action rather than the "let's wait and see" policy they insisted on when I had CHF worsening by the hour until my lungs were no longer visible on an X-Ray. I had a chest tube in one lung and a tap in the other moments later. I am now well. Remember, I had emergency surgery. Had been scheduled with one surgeon who was on vacation when I was hospitalized. Someone else did the surgery. You have valid concerns and a right to some answers, bravo64. If I were in you place, I would write a list of questions based on priority of your concerns and demand they be answered. I wish you both the best care possible. Gail

• By bravo64
• Reply 3455903
• October 13, 2012 at 6:01 pm
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Update: we were finally moved into a private room. we met the surgeon finally, yesterday afternoon. He came in with his PA. His name is Tom Martin. Unbelievabley, he sat with us for over an hour, thoroughly explaining everything. What a difference from the other doc's. The Dr. Explained that before he does the surgery, he wants my wife to be seen by the "chf team" to evaluate her to see if she is a candidate for heart transplant an/or the ventricular assist device machine if its required during the surgery. He explained this would be needed if there were complications after the surgery and her heart wouldn't respond. He stated he doesn't anticipate her needing this but he likes to be prepared and have a back up plan just in case. He then scared my wife a bit when he told my wife he might consider sending her home until next week, when he has room on his surgery schedule. This kinda freaked my wife out. He explained that he has patients that are more critical than she is. He then said he also wants another catheterization done. He said he will have several cardiologist also use some meds to try and bring the high pressures in the lungs down, prior to the surgery. This will take a couple of days, beginning on Monday. Hopefully after these additional test, he can tell us if he will have room on his surgery schedule to perform the surgery. If not, then we should go home until he has the time. I think it would be beneficial to go home. The only problem we are dealing with is the daily care she is receiving by the nursing staff. They are hardly in to see my wife and when they do, it seems like she is the last patient on the list or they finally realize they forgot her. They have been giving her xanax and the PA just ordered zoloft to treat her anxiety on a more controlled manner. My wife has told me that she has had several leads missing from her heart monitor and it has taken someone 2.hours before coming in to check the leads. I'm also concerned that she has no appetite. She says everything taste the same, terrible. She always seems to have a bad taste in her mouth. I've been giving her ensure drinks in the meantime. Nobody seems concerned about this, except us. I feel so bad what she's going through and still has to face.

• By LADC
• Reply 3456000
• October 13, 2012 at 6:58 pm
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Bravo64 you and your wife must be so overwhelmed by now. I'm so glad to hear that you finally got to speak to a compassionate, knowledgeable physician for a whole hour! Still you have so much to sort out. Regarding her appetite/taste for food. I had similar issues around food. Everything had a metallic taste. However, I thought that was an effect of the pain medication I was taking--perhaps not. You two must be so physically and emotionally drained , not to mention frightened. Happy to hear you are finally getting some answers from someone who seems competent. Hope you both get a chance to get some rest. You need as much support now as she does. Any chance of having nursing care at home for awhile? Not sure if you explained this, but did you learn of all of these serious health concerns just recently? Wishing you both some comfort and rest. Gail

• By bravo64
• Reply 3456418 · In reply to 3456000 by LADC
• October 13, 2012 at 10:51 pm
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Gail, thanks for listening. It really means a lot right about now. As for her appetite, she did have a metallic taste initially, however, now she says everything has a sweet taste. Everything tastes the same she says. I think the only thing she ate today was half of an ensure. Again, nobody seems concerned. I can't begin to tell you how disappointed I am in the care she is receiving from these nurses. Night and day difference from the previous hospital. Even though we had issues with the other hospital. I can honestly say the nursing staff was some of the best I've seen. My wife had nurses that would come say goodbye after working their shift and give her a hug and tell her they would see her when they returned. This hospitals nurses are lacking some compassion. Just to give you an idea. Today, the day nurse began her shift at 0700 hrs. And didn't come in to see my wife until 10 am. She didn't return unfilled about 3:00pm. She seems to have an attitude and is very cold all the time. So today, my wife took a shower and put on some lotion I had bought for her from body works in the mall. Needless to say, she smelled very nice. Well, that nurse opens the door to enter and takes 2 steps inside when she throws her hands up to her face and begins to mumble something and storms out the room. Two minutes later another nurse enters and says, "she can't handle the perfume you have on." My wife apologizes and tells her it wasn't perfume, it was lotion my husband bought me. Then, I said goodnight and headed back to the motel when my wife calls me and says, that when I lef, the changing of the guards took place. The night time nurse came in to tell my wife that the previous nurse, the one who ran out of the room, was not going to be my wifes nurse any longer because of the lotion smell. Are you kidding me? How rude and inconsiderate she was. I told my wife, it wasn't like she smelled dog shi*. If anything, it made the room smelled nice. I feel so bad for my wife, having to endure this Bullshit on top of what she is facing. I honestly feel like taking her out of there and finding a better place, however. I don't want to stress her anymore. If it wasn't for this doctor, we'd been outa there already. I wish I had some recommendation to good surgeon/doctors/hospital in the FL. Area, someone wi
Who could provide some personal experience. Looking for some advice/guidance.

• By bravo64
• Reply 3456420 · In reply to 3456000 by LADC
• October 13, 2012 at 10:52 pm
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Gail, thanks for listening. It really means a lot right about now. As for her appetite, she did have a metallic taste initially, however, now she says everything has a sweet taste. Everything tastes the same she says. I think the only thing she ate today was half of an ensure. Again, nobody seems concerned. I can't begin to tell you how disappointed I am in the care she is receiving from these nurses. Night and day difference from the previous hospital. Even though we had issues with the other hospital. I can honestly say the nursing staff was some of the best I've seen. My wife had nurses that would come say goodbye after working their shift and give her a hug and tell her they would see her when they returned. This hospitals nurses are lacking some compassion. Just to give you an idea. Today, the day nurse began her shift at 0700 hrs. And didn't come in to see my wife until 10 am. She didn't return unfilled about 3:00pm. She seems to have an attitude and is very cold all the time. So today, my wife took a shower and put on some lotion I had bought for her from body works in the mall. Needless to say, she smelled very nice. Well, that nurse opens the door to enter and takes 2 steps inside when she throws her hands up to her face and begins to mumble something and storms out the room. Two minutes later another nurse enters and says, "she can't handle the perfume you have on." My wife apologizes and tells her it wasn't perfume, it was lotion my husband bought me. Then, I said goodnight and headed back to the motel when my wife calls me and says, that when I lef, the changing of the guards took place. The night time nurse came in to tell my wife that the previous nurse, the one who ran out of the room, was not going to be my wifes nurse any longer because of the lotion smell. Are you kidding me? How rude and inconsiderate she was. I told my wife, it wasn't like she smelled dog shi*. If anything, it made the room smelled nice. I feel so bad for my wife, having to endure this Bullshit on top of what she is facing. I honestly feel like taking her out of there and finding a better place, however. I don't want to stress her anymore. If it wasn't for this doctor, we'd been outa there already. I wish I had some recommendation to good surgeon/doctors/hospital in the FL. Area, someone wi
Who could provide some personal experience. Looking for some advice/guidance.