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Kimv

Member
Joined
Jun 5, 2013
Messages
17
Location
Boston, MA
Hi everyone - I am new to this group. I went from being a totally healthy 36 year old who was always told my heart murmur was "nothing to worry about" to finding out I have a BAV with severe stenosis. This all happened because I had a routine physical last month and now my surgery is in 3 weeks. I was absolutely shocked at this diagnosis btw. So it has been a lot to digest in a short amount of time and to repeat what I have read so many times before this site has been incredibly helpful in the learning curve. Anyway I did have a quick question about preparation - I have two small children 4 years old and a 9 month old and I have been so busy finding child care for them while I am recovering - I haven't really thought too much about who is going to take care of me. I was just wondering if you all had some insight on how much care one needs when coming home - do I need someone with me all the time kind of thing? Just as an FYI I am having my surgery at MGH in Boston so advice from anyone who has had surgery there would also be appreciated. It's funny now that I know the surgery is happening - I fine with it - much much more worried about the recovery.
Thanks for sharing your stories!
Kim
 
I know that feeling Kim. From what others have posted, I've noticed that having the op is associated with a sense of relief. Most of the anxiety seems to happen in the waiting room. I understand your shock, but at least you're not having to deal with the long wait.
 
Kim I live alone and I've had two OHS, and was just fine living by myself after both. You won't be able to drive for a while (my surgeon said six weeks) or carry anything heavy, so getting a friend to take you grocery shopping will be necessary. There is also some housework you're not supposed to do, like vacuuming and making the bed, so you'll need to get some help with that for the first 3-4 weeks.

I had no trouble with anything else, although I was momentarily stumped by how to get the washing out of the bottom of the washing machine - but I used BBQ tongs for that. :)

Apart from that you don't need anyone to sit and watch you! I organised friends to come over and see me, or take me out, just so I didn't get totally bored.

Good luck from down under!
 
Hi Kim,
I was 38 at the time of my surgery and was surprised how good I felt after the surgery. Granted, not everyone heals the same. Our son was four at the time and one of the hardest things for me was not carrying him after my surgery. You'll be chomping at the bit to do the same I'm sure with your little ones. Unless there are complications, you shouldn't need someone with you all of the time. In fact, you may need some time alone to process the whole thing. Good luck with your surgery, I pray that everything goes smoothly for you and you have a quick recovery. Take care.

Tom
 
For the most part, you'll be fine looking after yourself, but it sure won't hurt to have some people coming by to keep you company, to walk with you, and to help you with simple things like cooking for the first week at least, and of course someone to drive you home and see you set up. Not that you can't cook, but, for example, my fridge door requires a pretty sharp tug to get it open, and I didn't like the feeling of opening it much! I actually found it was tough to get out of bed by myself the first couple of days home. If you're having a minimally invasive surgery, that might be easier.
When I was walking, I felt more comfortable knowing that a well person was with me. My first walks were just a block or so, and needed a rest in the middle.
My wife was home with me, but she went to work at around week three if I recall correctly. By then, I was able to cook and clean and do laundry, and a good thing too, since she was working 12 hours days, with a 1.5 hours commute at both ends!
If there is no one who can help you out, you'll be fine. If a friend or family member is near, now is the time for them step up and help out!
Best of luck with it. Paul
 
I had two OHS at Mass General four years apart.
They are so expert at what they do and have seen it all that I really want to assure there is nothing they cannot cope with.

The CICU is amazing. I had one on one nursing care there post op and they were so good to me. My second OHS, I was eating half a turkey sandwich and ginger ale less than 24 hours post op. They put me in a wheelchair to move me to step down unit. That is very fast to be leaving CICU and not saying you will, too, but know they are able to get us up and recovering very efficiently. I also want to add I have a number of years on you and your youth certainly works in your favor.

Each time when they prepared me to leave the hospital, they instructed they wanted someone with me 'most of the time' with exception such as if the person went to get groceries or run an errand. I didn't think it necessary but wasnt about to argue the point. DH was with me evenings and nights but day time, we had someone come the first few days I was home. I was happy they were there only the first few times I showered but it started to get under my skin. I thanked them profusely but as soon as I felt secure I could care for myself and felt safe showering alone, which was day two home, I requested they no longer come daily. I did just fine for myself.

As to groceries........ if you have a Stop & Shop near you, order from PeaPod. They deliver. :)

The key was to get up each day, shower, dress, do breathing exercises as instructed and read and follow the instructions in the booklet all OHS patients at MGH are given. Walk, Walk, Walk...... it is the single best thing you can do for your recovery. It cannot be overstated how big a deal walking according to the schedule set forth in their booket is.

Prior to your surgery, load in some food; do some cooking and freeze and put anything you reach for often that is on a high shelf at an easier to reach level. If your favorite cerals are in a high cabinet, move the box to your counter, for example.

You will be required to walk a flight of stairs before you are discharged and I had no limitations about stairs when I came home. I went up and down several times a day with no problem.

If you are accustomed to an underwire bra, don't plan to wear it. I got a tiny infection the firsts time and switched to Hanes Her Way, Barely There, pull over stretchy, no hooks and no underwire bras. They are fabulous for the early weeks healing. You can find them moderately priced at Macy's and Kohl's both on line and in the stores.

I made sandwiches for myself at lunch, warmed soup etc and made light dinners for DH and me. I set the table and did light dishwashing but no pan scrubbing.

My first surgery, I was not ready to drive until after 6-8 weeks. I was very sick when I went to the hospital and weak post op but well enough to take care of myself at home. My seconed OHS, my doctor gave me permission to drive at just under three weeks and I did so with no difficulty.

The nurses at MGH told me right away post op they consider pain control as important as blood pressure, temperature etc They will consistently ask your pain level and treat you accordingly. Do not hesitate to request meds if you feel you need them.

I could not have asked for better care anywhere than I received at MGH and I am most grateful to them.
If you have any MGH specific questions, please feel free to ask and if you prefer, I am happy to respond to PM though I feel it useful to keep helpful info on the forum so anyone who wishes to read, can. Of course, if it is something private or personal, by all means PM.

Sending you all best wishes. You have every reason to feel secure you will do just fine. You are going to one of the top heart centers in the world and they really know what they are doing.
 
I am (5) weeks post op. My husband has been home the whole time. The most difficult thing for me at first was just how much energy it took to do anything, like taking a shower etc. Barring any complications you will be able to do most things for yourself but your cardiologist will heavily advise you against lifting, pushing, pulling, reaching etc for your first 8 weeks so your sternum can heal properly. As others have posted, have everything you will need at counter height. A pair of tongs in hand for when you drop something. Good luck with all your surgery and your recovery. We will be here for you.
___________________________________________________________________________________________________________

53 year old female in the waiting room for 10 years, AVR On-x 21mm valve May 23, 2013 , May 23, 2013, Dr. Glenn Barnhart, Swedish Medical Center, Cherry Hill location, Seattle, WA.
 
In preparation for my surgery (which is in a month), I am doing the following:

(1) Hiring a housecleaner to come once a week to do vacuuming and laundry and other housecleaning chores for six weeks after the surgery

(2) Getting a (free!) account at lotsahelpinghands.com, which is like a SignUp Genius that your friends can use to volunteer to help you out with anything from bringing dinners for your family, taking your kids for playdates, or driving them places (a friend of mine who had OHS two years ago said this site was absolutely fantastic)

(3) Moving all plates, cups and pantry items down to the counter so I can reach them

(4) Making my husband stay home from work for the first week I am home so he can bring me smoothies and massage my feet and make sure the kids don't kill themselves

(5) Getting an AppleTV so I can binge-watch Mad Men and Game of Thrones

Hope that helps!!!!
 
Add (6) teach yourself how to get in and out of bed and on and off the toilet without using your arms

You will thank me for this after your surgery when you don't have to endure the embarrassment of ringing the nurse bell to get someone to help you off the toilet. :)
 
Add (6) teach yourself how to get in and out of bed and on and off the toilet without using your arms

You will thank me for this after your surgery when you don't have to endure the embarrassment of ringing the nurse bell to get someone to help you off the toilet. :)

My second OHS, I had four drainage tubes but was ambulatory day two post op. They had me walking to the bathroom which was fine and I certainly was up to it but there was no way they would let me carry for drainage containers. No one could do that post op........ thus, someone had to carry the containers each time I went to the restroom (on lasix, that was often) and I had to ring for them to carry the containers while I went back to bed. That got very old, very fast but it was three days before I lost the last of the drainage tubes. They would not permit to carry even the one remaining container. I will say they were very sensitive and respectful of privacy and never made me feel I was bothering them when I had to request going to the 'loo'.
 
In preparation for my surgery (which is in a month), I am doing the following:

(1) Hiring a housecleaner to come once a week to do vacuuming and laundry and other housecleaning chores for six weeks after the surgery

(2) Getting a (free!) account at lotsahelpinghands.com, which is like a SignUp Genius that your friends can use to volunteer to help you out with anything from bringing dinners for your family, taking your kids for playdates, or driving them places (a friend of mine who had OHS two years ago said this site was absolutely fantastic)

(3) Moving all plates, cups and pantry items down to the counter so I can reach them

(4) Making my husband stay home from work for the first week I am home so he can bring me smoothies and massage my feet and make sure the kids don't kill themselves

(5) Getting an AppleTV so I can binge-watch Mad Men and Game of Thrones

Hope that helps!!!!

Heather Anne,

Since I am the financial person in our household, I made a list of all our accounts with login and passwords (just in case - I had read here that some people have a foggy memory) and explained it all to my husband. I also put lots of bills on auto pay. That was nice when I got home I didn't have to worry about any of it since I was so tired all the time at first. I am now 5 1/2 weeks post op and am back to normal as far as the bills go. Just a thought to ad to your list. - Kim
 
Before I went in for surgery I made up a "cheat sheet" for my wife. I included all of the account information, passwords, contact people, insurance agents and policy numbers, etc. Then, as luck would have it, I didn't need any of it. Before I went into the hospital, I paid bills in advance for the first week after surgery. By the start of the second week, I was able to get back to doing it all very easily. So, be prepared just in case, but don't worry that you won't be able to write a check for weeks.
 
Just remember to behave and take it easy. It can be really easy to overdo it, especially if you're feeling really good. My doc kept me out of work for six weeks, mostly because he knew that I was the type that would dive right back into things if I could. And getting in and out of bed is a real pain. Having a comfy couch with a chaise section helps a lot.
 
I live alone, too, and was fine at home after surgery; however, young children are an entirely different set of circumstances. You will not be able to pick up your 4-year-old for at least several weeks after surgery. As for the baby, ask your doctor about that, but picking up baby may not be a good idea for at least a few weeks.

I think it would be a very good idea to have someone with you during the day. You're going to get worn out just taking a shower, and keeping up meals, naps, etc for children is a lot. If you have a family member who could stay with you for 2 or 3 weeks, that would be great, if not, maybe friends/relatives can rotate on a daily schedule to help you.
 
Add (6) teach yourself how to get in and out of bed and on and off the toilet without using your arms

You will thank me for this after your surgery when you don't have to endure the embarrassment of ringing the nurse bell to get someone to help you off the toilet. :)

I think this ( and related) should be number 1 for preparation. I will add that you should also teach yourself to get on and off every other place you might be in the weeks after surgery: your couch, your pick-up truck, sitting on stairs to cuddle your dog or child, etc.

Because I was independant post-surgery in so many ways, it was much easier coping with the ways I was not independant.

Also, make sure you have comfortable clothing. Some gain 5+ pounds and some lose 5+. You probably won't know which group you are in until post-surgery, so plan for both. My most useful bras were the ones I already owned, even though they had underwires. Plan for dressing without putting both arms over your head or behind your back.

I found a shower chair really helpful for about a week post-discharge. My husband had to buy it at the chain drug store our first day home.

I found bedroom slippers to be great for the hospital. The other alternative was hospital provided slipper socks, which I found too warm while in bed. When I was getting lasix, I would sometimes be up 3 times an hour.

The hospital gave me a workbook to use to log weight, exercise, pain meds, etc for the first 5 weeks post-discharge. I also used post-it's to track all my meds, use of the spirometer, etc, along with the day and the date, for several weeks. It took the place of the white board in my hospital room. If you are going to have a schedule of helpers, you may want a more elaborate system for keeping track.

Because my appetite was non-existent the first couple of weeks, my husband made more grocery runs than we thought he would. I found that I needed 5 small meals with protein per day, but that a Lean Cuisine meal was way more food than I could handle.

Best of luck on a speedy recovery. -- Suzanne
 
Thanks to all of you for your great advice. I went for my pre-op tests today. Besides having an allergic reaction to the dye they injected at the CT scan (yeah - that sucked) - it went pretty well and I got some good news. They only have to replace the aortic valve - no other work is needed so they will be able to get by with a 3 inch incision and hopefully a shorter surgery. 3 days and counting....anything else I should be doing in these last days leading up to surgery?

Thanks again - cant tell you how much I appreciate the advice and support!
Kim
 
I just had a Cardiac MRI that says that my ascending aorta is about 3.8cm. However, my stenosis may be worse than what was seen on the echo. Therefore, it's possible that I might need an operation sooner rather than later, which I would prefer anyway.

Now here's the dilemma: My surgeon may say 'well the aorta is OK' and offer me a simple valve replacement. He may even do it via a smaller incision. However, with BAV, the aorta may continue to dilate, which implies I might need another operation later on.

If you choose a mechanical valve, it MAY be worthwhile to have the aorta fixed at the same time, so you don't have to worry about it in the future. If you go tissue, you might need another op anyway, so it's less of an issue.

If your aorta is absolutely normal then that's great news.
 
All they replaced was my aortic valve to. They did have to do a full incision because of my arties and the way they curved etc. Don't be surprised if something changes and you have to have a full incision when they do your surgery. Hope not, but just be prepared. Good luck with it all. You will do well and we will be here for you when you are on the other side. - Kim
 
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