Chris's Journal

Eleanor R  Hello Chris. Welcome to this site, you will find many helpful people here, many ideas offered from different experiences within the heart valve surgery spectrum. I had aortic valve replacement on July 14th and enjoyed the company of my adult daughter as a caregiver. She was right there with you at the time, she even started a journal "Caregiver and Daughter" asking for information and advice. If you are able to take off work the first week (or even two) it would be great to be with your wife. Another member, Terrie, can give you much more recent information from her wonderful spouse Gary who has been helping her. Mainly, you would be there to help with whatever is needed, but you will see that the hospital has the patient walk, get up and down from a chair and bed, and even negotiate stairs in most cases before leaving the hospital. Here is what I found most helpful, again in my own case:
-Having someone keep an eye, or an ear, on me when I showered the first couple of times. Tiredness after surgery is common, and the warm water and standing up tires one. If you can arrange for a shower bench, that might help. I already had a small teak one from Bed, Bath and Beyond, had hardly used it, parked it in a corner of the shower until recently.
-You will be of help with reaching things for her, since she won't be able to extend her arms out or upwards for a couple of weeks. Very annoying when you try to reach for a mug, or pick up a napkin you've dropped. And extra pair of hands and arms.
-Emotionally, support her and know that the mind takes a time to adjust to what went on with the body while the mind was "sleeping". Some folks have trouble sleeping, others are sad or anxious after the surgery, others like me just felt really "blah" for about three or four weeks. I knew it, but couldn't get out of it. I wasn't sad, or mad, just blah. I remember it was about 4 weeks before I actually laughed, and I am a pretty cheerful person usually. I described this as my robot phase, as I couldn't move my arms much, and my gait was slower and more careful, and I just didn't get too involved/upset/delighted at anything. God, glad that is over. You may experience this as your wife being "moody" or less responsive, just bear with her if this happens, it may not mind you, or she may have other reactions, just be patient, this too shall pass.
-If she wants to hear the details of her recovery, what went on the ICU, etc. you can supply this information. I had to consciously stop thinking about the surgery - I did that the first few days home, and really had to put an end to it, for I was reliving it at night before sleeping, and once is enough!
-See what you wife feels like doing, it might be nothing, just sitting in a recliner, or it might be encouragement to go with her on the small but frequent walks her release instructions might include. I loved having my daughter walk with me outside, for I feared falling and imagined my chest splitting open if I fell. Impossible with only a 3 inch mini sternotomy, but the mind is a powerful instrument. She may want to watch videos, or take naps, or after a week or so have you take her somewhere she can walk (a big box store is fine, or in a park, wherever.
-I needed help getting dressed the first two weeks because I insisted on wearing tee shirts that pull over the head instead of the recommended button up shirts the hospital recommended.
-Help getting into bed, getting settled, having enough pillows, rolling over, and especially getting up out of bed for the first two or three weeks.
-Humor her appetite, or lack of it. The meds take away some appetites, and may create nausea. I ended up taking the meds with graham crackers and a small glass of milk, like I was back in kindergarten. Small sips of ginger ale really helped in the hospital and the first days home, then a bit of Coke. After 3 or 4 weeks, everything normalized, but it is good to be humored a bit.
-Be strong for her, and help her to be strong. You will see that she improves day after day, let her know that you see her as stronger, or more stable/balanced when she walks, whaterver.
-There will also be small set backs, so help her deal with those two. A really good day might be followed by a less than perfect day, when she will feel more tired, less enthusiastic, less interested in walking or going out or anything. Some folks just advance in a straight line, others do two steps forward and one step back, so don't be alarmed, you are looking for progress, not perfection.
-She may want to go have her hair cut/colored, whatever, and I personally enjoyed little trips to the grocery store or drug store, as early outings. Your wife wont' be able to drive for at least 4 weeks, may be 6, so being taken out is good, when she feels like it.
-Check to see what she wants to read, beach books where my personal favorite, much lighter than what I normally read, but I just wanted escapism, and happiness. Even magazines were welcome, as they didn't require much attention span, same with audio books. Or, she may not feel like reading at all, just play it by ear.
-You will see that after a few weeks she will feel better, and will be independent. Youwill find her washing out a glass, opening the fridge by herself now (before it was too hard to pull, I used both hands with elbows at my waist), or tying to run the sweeper (which I was wanting to do by week 4 - until then, if you can do, or organize the cleaning, that would be great).
Hope this helps, I wish you both a happy recovery. Eleanor

Terrie Syvertsen  Good Evening Chris and Husband-
Gary here of Terrie and Gary. Terrie had her aortic valve replaced on August 20th and was released from the hospital on the 25th. She had a full sternotomy so she had a full size 'zipper' on her chest running from just under her neck down below her breasts. She has been home now for 2 fill weeks and here is what role I have played so far. I have been whatever she needs at the time. Emotionally I have been her shoulder to cry on when she gets down on herself for not being able to take care of her most simple needs. I have been there to encourage her through her walks and the pain she has been in. She had a tough time with the Percocet so we have just been using regular strength Tylenol so the pain is present periodically. I try and help her get comfortable in her recliner or at the computer. I try to keep her from laying down too much which can effect her lungs a little. Pillows have been my best friend so far. I have been with her for every step of every walk she has taken since she has been home for support and safety. Each day she gets stronger and more stable on her feet. I have kept up with all the household chores so she does not feel guilty about the house and dishes being dirty or the laundry not getting done. I have helped her in the shower the first week to make sure she can safely get clean and to reach those hard to reach areas for her. Terrie is not supposed to raise her hands above her head for any length of time so I have dried her hair and helped her get dressed. Sounds like a whole lot of stuff to do, and it is. But each day she is able to perform more things on her own. Sometimes she overdoes it and gets fatigued so I am there to make sure she sits down and rests. This definitely takes work but it is a labor of love and I am fortunate that I have a good boss who let me take the time off of work to assist Terrie in her recovery. Tomorrow I am returning to work so Terrie will be alone for the first time since the surgery. I have laid out the things she will need in easily reached order. I have all the confidence Terrie will do just fine. So all the emotional support and encouragement I have given the past 2 weeks will continue via telephone.
Your wife will get tired and need help. She may get a little 'edgy' because of the pain or inconvenience of not being able to take care of herself. Maybe a little Jekyll and Hyde, but it is all part of the process. Be strong for her. Be patient with her. Things will get better.
Don't hesitate to ask questions of the heart community. We all have been through quite a bit as a family. We are all there to help.

Eleanor R  Thank you Gary for doing this. You have represented well all the caretakers in this community, and personally you have done a fantastic job with our Terrie. She is lucky indeed to have you. Your description of what exactly you have done, and in some part will continue to do for a while, will help others know what to expect. It is a big task, challenging and sometimes emotionally taxing too, and you have performed it well, A+. Eleanor

Chris Niederhaus  Thanks guys for all the detailed information it is exactly what I need. I am lucky enough to be able to take six weeks off work to care for my wife. The surgery went well and she is scheduled to go home tomorrow. I have seen a dramatic improvement in her with every passing day. I also have developed a new appreciation for the work performed by nurses. .they truly are amazing. Thanks again and I will continue to seek your advice.

Eleanor R  How is it going at home, Chris? I'll bet you are tired! So many small things to do to help your wife recover and get back to even better health. Soon you will catch her doing things on her own - I recall overhearing my daughter tell my nephew (both resident with me for a few weeks when I first came home) ... "Watch out for her, by tomorrow she will reaching up to the top shelf herself and she can't do that". They were right, our natural tendency is to get back on track as soon as possible, although I have to confess the help with cooking, cleaning and bringing in the groceries, was a blessing. But soon, your wife will be in the car with you, walking around the grocery store to get her walking in. I wish you both continued success in this process. Eleanor

Chris Niederhaus  Hi Eleanor..it's truly amazing how fast the human body heals! Marie is doing noticeably better every day. Coughing still hurts as to be expected but she is sleeping at least seven hours straight a night. I bought a wedge pillow to keep her elevated which has helped tremendously. Her appetite has returned and the nausea has subsided. Now I see I will be challenged with making sure she rests and doesnt over do it. Our two kids helped been saints...waiting on their moms every wish. Things are progressing nicely and I will keep posting and reading this great blog!