how to help my honey

[aworriedhoney]

Well, my 37 year old husband was diagnosed 2 weeks ago with aortic valve regurgitation after never seeing a doctor for the past 12 years. We thought he should get a physical even though he has been perfectly healthy so we thought.

He has a surgery date of January 17th to get a St. Jude mechanical valve. I have so many questions. The surgeon who is the best in our area is a man of few words and this forum looks like a great place for support for us.

What is harder, the emotional or physical part of this whole thing? The cardiologist and surgeon made it seem like my husband will back to normal very soon after. Is this being too optimistic??

We have a 5 year old and a wild 2 1/2 year old at home. I really don't know what to expect as far as care/ recovery after surgery. Will we have to ban the kids from touching daddy? Will he be out of it for awhile afterwards? I just don't know what to expect and I am such a planner. Not really knowing what to expect is hard for me.

Any advice and insight is greatly appreciated.

Thank you!!!!

 

[labguides]

What you are going through now, is VERY normal. Pre-surgery is rough on the family as well as on the patient.

Our daughter had mitral valve repair at age 26,. I can tell you about her recovery.

Prior to her surgery, she wanted her 3 year old niece to vist her in the hospital. But, after surgery, she realized that was not wise. Once she was home, her niece visited her for short periods of time. She was unable to pick her up for several months, but enjoyed having her sit next to her.

Our daughter slept in a recliner for about month. She simply could not get up out of bed and lying down was painful also.

My main word of warning and one which had been given to me -- after surgery our daughter was pale white and cool to the touch. I prepared myself for that. What I did not prepare myself for was when the surgeon called us in the waiting room to tell us that she was "off the pump" I fell apart at that point -- total relief.

I have rambled on -- a little here and a little there. Please keep in touch. The member of valvereplacement.com are very knowledgeable.

 

[inlaguna]

I was 41 at the time of my surgery and had a four year old. I would say the anticipation, worry and speculation was the worst part of my ordeal.

There is not much I can say to calm fears other than at 37, things should go rather routinely and your husband will be back on his feet before you know it.

I was careful not to pick up my daughter for the first four or five weeks and then I cheated and lifted her up around 5-6 weeks ( much to my wife's dismay). That doesn't mean she couldn't sit and watch TV with me, nap with me etc. She seemed to have an excellent grasp that dad was not feeling well and to be gentle.

She did visit me 2/3 days after surgery and it really lifted my spirits. Honestly, she liked the attention of being on my floor with all the nurses/patients etc. and probably paid little attention to me after the hello Dad I love you.......She liked giving oranges and other goodies to patients and I think her being there took the fear out of all of it for both of us.

We all know what you are going through here and there are so many things you feel you need to have answered.

All I can say is have your husband listen to his body after surgery and do the things he is comfortable with. He will know when to say when. Your kids will sense things too.....it's amazing. If they have trouble you will have all the rights things to say to help them make Dad feel better.....trust me you will.

The human resolve and spirit is greater than no other and you will use it to get you through this tough time and onto bigger and better things.

Dan

 

[Nancy]

Welcome to the site. As a spouse, I can relate to your fears and worries. I've seen my husband through 4 thoracic surgeries. He's actually had 5, but I wasn't with him for the first one. He's had three valve surgeries and two lung surgeries, all with the same type of recovery, lungs possibly being worse.

The stress during the pre-op phase is bad for the patient, and for their close family members.

The only thing that helped me through it was to read EVERYTHING my brain could absorb about the surgery and recovery. This site is the best resource for that.

The initial phase of healing will take 6-8 weeks. During this time, there will be many challenges. Your husband will need you 24/7 for the first week home, and possibly the second. Then there will be steady recovery with some backsteps along the way.

Be prepared for wide mood swings and having your now strong husband as weak as a kitten.

This is MAJOR surgery, unlike any other except for other thoracic and invasive surgeries.

The final healing will take from 6 months to a year.

He will have strict lifting restrictions and lifting children will not be possible. His chest will understandably be extremely sore for quite a while.

The surgery has excellent mortality percentages, and your husband will have the very best care the hospital can give him.

Do not be put off by the surgeon of few words. As long as he knows his stuff, that's about all you need. He'll have others on staff who can address your questions. They know how to handle everything that might come up.

Don't have too much time to post more, but I will when I have a moment.

All will be well.

 

[hensylee]

Our Vr mother, Nancy, has pretty much covered everything. YOu can also go to the 'search' button (above), click on it, type in any subject you want info about and you will find much to help enlighten you about what to expect, what to take to the hospital, etc.

It is an awesome journey you both are about to take, so study up on it in order to prepare yourselves.

The emotions might be the worst. Once you start the actual procedure, you are busy.

 

[Gemma]

Hello and welcome

My boyfriend Jim had AVR surgery 2 years ago (at the age of 26) and like Nancy, my coping strategy was to read EVERYTHING on the subject I could take in, then a bit extra for good measure!

Your husband won't be allowed to drive for about 6-8 weeks (varies depending on the surgeon), but by that time he should be feeling significantly better than in the first week or two after surgery. Jim was back mountain biking 4 months after his surgery (cycled on the road for a month or so prior to that).

I think maybe the emotions are worse - there are painkillers for the pain, but emotions are trickier. I was a basketcase in the week leading up to Jim's op, and so happy afterwards! Meanwhile he was having his own ups and downs as he realised he couldn't do everything he wanted straight away (like building his new motorbike ).

Everyone recovers differently, and I think one thing that makes a big difference is how the person feels prior to the surgery. If they are obviously ill, then they'll notice an improvement quicker than if they'd only had minor problems beforehand. I'd say it took Jim a year to notice he felt much better than he had done. He was OK long before that, but it kind of took a while for it to sink in that actually he felt good. Others feel great after a couple of months. Maybe it's the kind of thing that can be judged with hindsight.

Anyway, as Ann said, do a search if there's anything specific you want to know, or ask away and we'll help any way we can.

Take care,

Gemma.

 

[Kate]

Welcome!
I had aortic valve replacement 3 months ago at the age of 38. Of course, every person's experience is different, but I'm happy to share mine. The good news is - I am a healthy but not overly-athletic person and was pleasantly surprised to find the physical side not nearly as bad as I had expected. I was only very uncomfortable a few times during my whole recovery (when they took out the chest tubes, when I had a bad reaction to a pain med they tried in the hospital and when I got off the pain pills a few weeks after surgery.) None of these lasted long and were all manageable. Most of the time I was just sore and very tired. Based on others' stories from this site, I know many people have trouble with insomnia and are unable to sleep in bed for many weeks but I had no trouble with either from day 1. I never took a pain pill stronger than Darvocet and was able to putter around the house, make my own lunch, etc. within a week of getting home.

The bad news is - the weight restrictions are serious business and your whole family will need to be very disciplined to make sure that your husband doesn't pick up your children for the full 6 weeks (or whatever your Dr. says) after surgery. Otherwise, his sternum might not heal properly and that can cause all kinds of problems, including additional surgery. I don't have kids but I remember reading in another thread that others had good luck holding their kids on their laps with a pillow in between to protect the incision from being bumped (which hurts quite alot in the first few weeks). The other bad news is that the psychological aspect of this surgery can be quite difficult. This is major surgery, your husband will have to adapt to some new routines due to anticoagulation therapy, and frankly, it forces one to confront some fairly serious issues related to mortality, dependence, etc. at a relatively young age. I don't say this to frighten you, but I think it is helpful to know and be able to prepare for this in advance. I found it helpful do some mind body exercises in advance (deep breathing, relaxation, etc.) and to speak with a therapist afterwards. Others seem to take great comfort in faith and family. Like the physical side, this part is doable, but it takes some time and some work! Wow - I'm going on and on! Anyway, I wish you and your family well and hope you'll let us know how it all goes! Kate

 

[Natanni]

Hello!

My husband is 34 and had his aortic valve replaced on Sept 29th. He had been followed by a cardiologist since the late 1990s for regurgitation, which was gradually getting worse.

We have a pretty active lifestyle. We motorcylce, have ATVS, and snowmobile. He also sails with his Dad. We have a 14 year old son and a 9 year old daughter and 3 dogs and 2 cats The first two weeks at home were the hardest, but nothing was as bad as we had imagined. I was most concerned about the cats jumping on his chest in the middle of the night, but it never happened. For some odd reason, those cats kind of knew not to do that. There are alot of valvers with little ones that will chirp in with their ideas for you. Never ban those hugs, you can just show them how to do little sideways hugs until things feel a little better. And the one big thing the kids liked to do was help Daddy....our daughter took Dad for his 'walks' after surgery, loved helping him with those little things.

Nathan has a very physically difficult job, and is returning to work next week (about 13 weeks post op) He began to feel very good at around the 2 month mark. He has been installing a new ceiling in our basement this week and snowmobiling with our son. Good luck and keep us posted!

 

[Karlynn]

Welcome! Everyone has been doing a great job of filling you in. As you can see, we are a very active support community from all around the world. Someone is always on, it seems, so a shoulder, or a little advice is never far away. There is a ton of information to be gleaned here, but don't be afraid to ask if you don't find the answer by doing a search.

Since your husband is getting a St. Jude mechanical, I'd like to recommend the site www.warfarinfo.com . This site is run by a member here, Al Lodwick, who is a pharmacist, registered anticoagulation specialist and has his own Coumadin (warfarin) clinic. Al is so kind to be a regular participating member here and is always around to answer Coumadin questions and give us the latest news he finds. Al travels extensively, speaking to medical professionals about the use of Coumadin. Unfortunately you'll find that there are many misconceptions about how a Coumadin user must live their life and lots of erroneous information that even doctors still ascribe to, so being a member here and reading Al's site will set you and your husband straight about how normal a life he will lead. The biggest misconception we here is "Don't eat anything green." Your husband should eat what he wants. If he's a salad lover, he can eat them. The key is consistency.

I've had my St. Jude mitral valve for over 14 years, Twinmaker has had hers for 24, and we have many long-timers here. My children were around the age of your children when I had my valve replacements and let me say that I never had much time to stop and think about my own health.

I would also encourage your husband to join here as well. I think he'll feel a lot less apprehensive about his surgery.

 

[Dennis S]

You sure came to the right place!

You sure came to the right place!

I had a St Judes mech. valve & aortic stem repair on August 4th of this year. It was hard, but it never came close to being something I felt I couldn't manage. The experience really is different for everyone, and you just need to be sure you all give yourselves permission to take as much time as necessary to recover from the surgery. I think one of the quirks of this surgery is that the risk of surgery is very much on the low end, but the procedures required for the surgery are very substantial. Others have said that if we could have seen everything that was done by the surgeon to get the job done, we would be more willing to cut ourselves some slack in the recovery process.

For me, it was ultimately a positive experience. Watching my wife dive in to do so many of the things I couldn't do for myself added a whole new level to what was always a great relationship. I will see her through new eyes for the rest of my life. Many things that I chalked up to advancing age have rlloed way back now that I experience life with a working aorta valve. i predict you will find that this will be one of the best things your husband ever did for himself and for you.

One piece of advice: My most difficult experience was waking up with a breathing tube. Before surgery, I had stressed to the Dr. and any nurse I could talk to that I wanted that out ASAP after my surgery. I remember waking with it in there, but they got it out long before I became clear headed enough to really be bothered. I have always been glad that I stressed ( and my wife and sister stressed while I was in recovery ) that I wanted that out ASAP.

 

[Nancy]

Regarding the breathing tube--It is a tough thing to be sure. But it is there to help you breath when your body cannot do that automatically due to anesthesia that lingers and/or pain meds that are running around inside your body. People differ in their reactions to both. My husband is one who stays "out of it" for a longer period of time, and his tubes stay in longer.

They test you frequently to see if there is evidence that you are able to breath on your own. If you pass the test--out it comes. If you don't pass the test, it stays until you do pass the test.

Most everything during and after surgery is done based on scientific determinations. Very little is left to chance.

Fortunately, the tube stuff is gone very soon, since they want you up and walking around much sooner than you would ever guess.

 

[Mike C]

my son was a wild 2 1/2 old and daughter was 4 months when i had surgery.

Young children make it much more difficult for both the patient and spouse. I would expect he will not be much use for the first 0-3 weeks as he has to recover. Each week, he will be able to contribute more and do more wiht the kids, although during the weeks their will be peaks and valleys.

The planning you can do now is scheduling as much help for you as you can for the first couple of weeks.

I was amazed how good my son was, he was very helpful to me, very gentle around me, although just as wild if not more so around everyone esle. He was glad to have me back though, it took at least 2 months for us to reintroduce jumping tackles.

 

[Granbonny]

Is the 5 year old in pre-K?....Do you have family that could take care of the 2 1/2 year old? during the day..Your Hubby will probably not sleep good at night and need naps during the day...... At their age, I'm sure they have an early bedtime....Food will taste yucky to him..for a week or so..Stock some juices, soup, ect..He needs to get up and walk a lot inside the house.Plus, you will have to drive him to have his INR tested..when he comes home..Line up some family to watch kids..for first few weeks.... We are here for you..Ask away any other questions. Bonnie

 

[tobagotwo]

Not much left to say. Kate mentioned the kids-in-the-lap thing. The lifting-the-kids thing has been done to death. Etc...

At your husband's age (even at my age of 53), with no unexpected complications, I would definitely feel that the emotional toll is usually much harder than the physical toll overall, for everyone involved. He will likely heal quite quickly, and have to remind himself not to do things that he will feel capable of doing. The sternum will probably feel healed before it actually is.

He may have to deal with some depression before, and even well after the surgery. Some do, and it's no weakness. Fortunately, most don't.

Keep us in the loop.

Best wishes,

 

[aworriedhoney]

not as worried

not as worried

Today is a much better day. I think everything hit me yesterday when we got an actual surgery date. We had a great day with the kids at a local children's discovery museum.

Thank you everyone for the invaluable advice. I consider us so lucky to have found this wonderful site! We will definately have some help lined up for the first few weeks and the rest I guess we will play it by ear.

Thanks again for all of the posts! They are all reassuring and important.

A little less worried

 

[OldManEmu]

Welcome aboard. I think most points have been covered. I was a little older than your husband being 41 at the time of surgery last year. Being young and if he has no other health issues he should be feeling almost back to normal after 6 weeks. Reframe from lifting the children for 3 months because the sternum takes this long to fully heal, if the Sternum doesn't heal properly it will require reoperation and this is the uncomfortable part of the operation! I was able to return to work after 6 weeks, however my job isn't physically demanding. I am like Kate I was able to sleep in bed from day one and didn't have any insomnia issues. I suggest you write a list of questions you have and take this along to your meeting with the surgeon. This way you can think about all the questions you have before hand and you will not forget to ask them during the consultation, also write the answers down so you can review them afterwards.

 

[twinmaker]

I had my mitral valve replaced back in 1981 when I was 29 years old. In fact, the surgery was two days after my birthday! Our daughter was 5 at the time, and our twin boys had just turned two years old 4 days before the surgery. Not too far from the ages of yours. I guess as a mother, the emotional toll was hardest before the surgery, but after the surgery, the physical part became the challenge. I found myself fighting the breathing tube while in the CCU but then started to play games with it. I would try holding my breath, etc. At least, this is what I remember. Of course, I was heavily sedated on morphine. The tube came out the morning after my surgery. The kids did come to the hospital, but we decided to wait a few days until I could walk down to the cafeteria with them. Now remember..this was quite a few years ago and the normal time in the hospital after OHS was 10-14 days! I think it's much shorter now. My husband took off a couple of weeks from work, and my mother came and stayed for about a month. Things do get better physically a little each day, and that's what you have to remember. I started walking a little more each day, and my husband and I would walk around the high school track each evening. The kids were really gentle around me so that wasn't a problem. Your husband's chest will be sore but that gets better over time. Sleeping in a recliner really helps. Also, I had some nightmares right after getting home, so don't be alarmed about those. He will hear the clicking of the valve and that may annoy him, but it's also reassuring and after some time, he won't even notice it. Most of us know what your husband will be going through, but I've never been on the other end as being the spouse of a patient. I think you have the toughest part. I guess my advice is to learn as much as you can (which you are doing) and then take each day at a time. I thank God for my valve each day. I was able to raise three kids and enjoy a full "normal" life after surgery. I ran up and down the soccer sidelines watching our twins play soccer from the time they were 5 right through college (although they made me sit in the stands in college). I'm 53 years old now, play tennis, ride my bike, and play lots with my 18 month old grandson. There have been some medical ups and downs but they can be handled. I know you and your husband and kids will be just fine. There are plenty of people here to attest to that fact! We are here for you! Keep us informed! LINDA