Help with preparation for post surgery planning

[JJGo]

Hi, This is my first post although I've been lurking since February learning an amazing amount from you all. (Thank you, very much). I'm in the process of deciding on which valve to choose and am leaning towards the homograft (Aortic, quad cuspid, congenital). I won't go into all that here because I've gathered an amazing amount of info from other posts. My biggest concern right now is trying to get very organized for what my needs are going to be post-surgery.

I'm 45 yrs old, single, and live alone. I have many many friends who are willing and able to help me through this time but I need a "picture" of just what I will need and when. I'm assuming that I won't be able to just be alone at home immediately after I'm released from the hospital but is there a timeline available somewhere to tell me what to plan for and for how long? I know I need to organize at least the first few weeks post surgery but am feeling a bit paralyzed with how to go about it.

Any suggestions will be greatly appreciated.

Another question I have is whether anyone on this site has had their surgery done at Methodist Hospital in Minneapolis (St. Louis Park)? I'd be interested to know since it looks like that's where I'll be.

I'll try to get my bio info posted soon.

Thanks,

JJ

 

[Mb]

Hello JJ!

Welcome, as a member, to this site. I know you will find that participating in the forums to be helpful. You will continue to learn. My husband is a dual valver, but I can offer the following:

1. You need a pillow to hug. Take it easy.
2. I stayed at home with my husband for a week post surgery, then the following week only worked part days, going home at noon to make him lunch and check up on him. I also spoke with him a couple of times a day.
3. He used the recliner a lot when he first got home. He found it uncomfortable to be laying down in bed. He was able to rest easier there. Other folks liked their bed better......you'll be able to figure this one out quickly. Take it easy.
4. I don't think you will be up to doing much the first week or so you are home. Take it easy.
5. Have a pain killer available, even it if is only tylenol, or whatever the Dr. says. You may need it.
6. If you have someone stay with you, and you have add'l visitors, have a signal established between you and the caretaker to indicate when you have "had enough". Then the caretaker can insist that you go lay down cuz you look tired. Then be a good doobie, and go lay down. The extra company will get the hint. Take it easy.
7. Nightsweats..........a lot of folks on this site have them. My husband would wake, and have to completely change as he would be soaking wet. So, have some extra bedclothes within reach.
8. Take alot of "rests" during the day. You will need them, particularly the first week.
9. Try to do a bit more each day, but never more than you can handle. Everyone here seems to recover at different rates.
10. You will have new meds that you will be on. Make arrangements for someone to pick these up for you.
11. Have some food in the house that you particularly like.
Your appetite might be altered, so its good to have things that are your favorites.
12. Have some extra cash hidden in the house.....you may need it.
13. Mae sure your car is filled with gas, in case your caretaker needs to make a quick run to the grovery store.....or drug store.
14. Continue the breathing excercises they will show you, when you get home. They are important.

No doubt lots of folks will have things to add to this list!

 

[Bill Hall]

JJ - Great that you are with us and out of the lurking. I would like to give you my experience after 10 days in the hospital (longer than normal). My first day out I stayed in Cleveland to make sure I would be OK to travel back. The second day, my wife drove me to the grocery store and I walked around for about 20 minutes with no problem. I felt very normal and no pain and no tiredness. I was pretty cautious nevertheless and didn't push it. I was 47, and thought I needed very little help. I would suggest getting someone to stay around for the first two days after release from the hospital (to help if needed), someone to drive you or get groceries and someone to cook for you or bring you food (a few days). After that, I think you will be OK on your own. They suggest you don't drive for six weeks.

 

[McCln]

Hi JJ

Hi JJ

Welcome. You have foudn a great place to learn and grow here. I am single and living on my own. Had a double-bypass, aortic valve replacement. My brother stayed with me for two weeks after I had been in the hospital only for four days. I had to take it easy, no vaccuuming for one month, no heavy lifting. So my brother helped till I felt good enough to do for myself. I was able to cook for myself, had a microwave that helped. I did quit well. But it is rough at first, you do want someone to be there during the night. I had it rough at first and kept getting up at night to sit up. I would fall asleep in the chair. But it passed quickly. Everyone has a different story because we all heal differently. Glad you are educating yourself. It will make the decision making a lot easier by being informed. You take care and if there are any questions, just ask and someone will answer. Hang in there.

Caroline
09-13-01
Aortic valve replacement
St. Jude's Valve

 

[Christina]

To help you through Valve Surgery.

To help you through Valve Surgery.

Hi JJ,

I happen to have this link in my favorites about valve surgery.
Hope it helps you.

http://www.cardiacconsultants.com/valvesurgery.htm


Christina
Congenital Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St. Jude's Mechanical

 

[Nancy]

Hi and welcome to this terrific site. Glad you've come out from behind the tree LOL (lurking).

My husband liked to have a shower chair. It has a high back so he can grab it if needed, and can sit if he feels like it. He also has a fancy dancy cane with a rubber tip that he uses after surgery, just to steady himself. You'll feel weak for a while. You'll be going to the doctor's office within the weeks after surgery, so have someone who can drive you around.

Get as much paperwork done as you possibly can, paying bills ahead if possible, taking care of any banking and legal stuff. After surgery you won't feel very intellectual for a little while.

Find your most comfortable clothing, loose fitting stuff, and a good pair of slippers, because bending to tie your shoes might be uncomfortable.

In general the first couple of weeks, you'll be feeling quite tired and weak. You might also feel sort of foggy. You'll be on new meds and will be adjusting to them and your heart will be coping with its new self. After the first couple of weeks, you'll start to feel better and stronger, but you'll still be napping and of course will be sore. At 6 weeks, most people feel pretty well, but still sore and tired, and from there healing will progress steadily but slowly. After a year you'll be pretty darned well.

There is no timeline for everyone. Some feel great almost right away, for others it takes longer. Everyone heals at their own rate.

When's the big day?

 

[Johnny Stephens]

Your surgical staff should give some overall information about what your recovery will be like. The UWMC gave me a pamphlet broken out by week, and it also had info on how to take care of the incision, sternal precautions to guard the healing breastbone, exercise, etc.

All of the above are excellent suggestions. I would add:

- Does your home have stairs? If so, is your bed upstairs? Make sure you plan in advance for this. I didn't, and because of complications was unable to get up to my bedroom for 2 wks. I had to rent a hospital bed because the recliner wasn't working for me.

- Early on, your helpers will have to make sure things are either in your reach or out of your way.

- I too found the shower chair invaluable. Now that I don't use it anymore, my daughter has stolen it.

- It's summertime..get a big ole' fan that you can point right at your face in the middle of the night if you wake up with the night sweats.

Nice to have:
- A cordless phone to carry when you are alone. I found that the phone always rang at very inconvenient times and a few times I couldn't get there in time. Of course, my wife / mom / dad would freak out thinking I had keeled over in their absence.

Good luck!

 

[ALCapshaw]

Hello JJ,

You've received many EXCELLENT suggestions already. Allow me to add a few.

My surgeon recommended that I have someone around 24 hours a day for the first two weeks. Due to side effects from MANY new drugs, I was having all kinds of reactions out to 3 weeks. While I managed OK, in the third week, I did have one trip to the ER where I didn't even remember calling 911 on the cordless phone. I strongly recommend reading ALL of your drug information sheets, especially the section on SIDE EFFECTS. I was amazed at what LASIX can do, especially if you aren't drinking enough fluids or simply don't need as much as prescribed.

See the reference section for my favorite book(s) on recovering from Heart Surgery.

Expect the unexpected. This was my second heart surgery. Things that bothered me the first time (chest pain with movement / sleeping on my side or back) were NOT a problem this time. Things which did NOT bother me the first time were a major nuisance this time (drug reactions / interactions). I felt weaker at 3 weeks than at 2 this time around. Just beginning to get back on track going into week 4 post op. Bottom line, there are a LOT of possibilities and no two people or even two surgeries will act the same.

'AL'

 

[Granbonny]

My suggestions

My suggestions

Hi..I will soon be 3 months post-op..By all means get a pill organizer..Monday-Sunday..Get your caregiver to fill it for you when you come home..You will have several different meds to take everyday at different times..Buy LOTS of your favorite juices..and drink a lot..You won't have much of an appetite for the first few days....and let the answering machine take your calls...You really won't feel like talking much..Try to walk inside as much as you can and outside as soon as you feel up to it...Good Luck..Bonnie

 

[JJGo]

Thanks

Thanks

I've been reading all your responses. Just wanted to say thanks so much. I knew that you'd be really helpful. It's important to me to get lots of prospectives and think about all the possible contingencies so this is just great. I'll keep watching for more info if anyone has any for me.

Thanks again,

JJ

 

[Tom Harrison]

Just adding to what others have said.
I was alone during the day but had meals prearranged. We hired a nurse for an hour a day to help with personal care but I really didn't need her as I was able to shower myself by the time I left the hospital. Cancelled it after 5 days.
Avoid stairs if you can and if not have someone place chairs on the landing (if there is one) and at the top. Make sure you use the chairs as stairs are hard on you.
I could only sleep on my back or right side and only for an hour or two at a time. I stopped taking the Tylenol I had been sent home with and began to have problems with extreme pain. Went to emergency and they told me not to try being a hero and get back on the meds.
The best over all advice is take it easy, but at the same time you have to get up and walk etc.
All the best with it.

 

[sylviayasgur]

hi jj!
i think they've covered it all... welcome to this "family". this is a wonderful place and everyone here is so caring and giving of themselves, i could not have made it through my husband's surgery without their support.
one of the best suggestions joey and i got from mara was ice pops. he had virtually no appetite at the beginning, but when i brought these, he could manage to eat them. so, if you get desperate...
other than that all bases seem to have been covered.
please keep us posted. be well, sylvia

 

[sylgeren]

Getting ready WOW!!

Getting ready WOW!!

Hi JJ, Well you hit the jack pot. I did the same thing to get myself ready. By the time I went in for surgery I was all prepared . The staff at the hospital give so much information too.
I had a friend cook a couple of meals a day for the first 2 or 3 days, and that really helped. Even though my taste buds were all messed up, it still was food. I also had purchased a rycliner and that saved me all together. Couldn't sleep good and the bed was out of the question.

All you do is sleep and eat a little and talk on the phone to friends. My computer and this site saved me from really feeling alone. The days go by so fast, the next thing your seeing the Dr. again for a check up. Good Luck and stay in touch with us.

All the little things that got me through the day I learned right here. Every little pain and question I was having I just asked and got my aswer. It was nice because I wasn't calling the Dr.s office all the time. Here you can talk to someone who has gone through it too. Syl

 

[Jennie]

Hi JJ!

Glad to meet you! I know you are in a VERY stressful time now - not just deciding on what valve and surgeon and all that, but planning the whole event. A tough time, especially when you're low on energy from a bad valve. Me, I made a little notebook with "To Do" lists. I sat down one day and brainstormed, writing down everything I could think of in each category. It made me feel less overwhelmed - I had a Plan. Then it was plug-and-chug from there. My lists were:

-doctor/hospital/insurance arrangements
-travel arrangements
-home stuff (bills, mail, plants, packages)
-work stuff (timecard, sick leave, POCs, cleaning up projects)
-"right before I go" stuff (turn down heat, set VCR, take out trash, etc)
-shopping list (anything special that I might need for hospital or recovery)
-food shopping list
-packing list - hospital
-packing list - friends' place
-press reports (POCs/email chain for family and friends while I was in hospital, people I wanted to call or email beforehand about my surgery, etc)
-doctor/surgeon questions
-after hospital (pay my online bills, see doc on XX day)

I also made a "cheat sheet" of info for my friends: doctor/surgeon names and phones, insurance ID and phones, my hospital ID number, medications, allergies, family and work POC's, flight info....

My experience: I stayed at some friends' place - very social people - for the first two/three weeks, which was great, and by the second week friends were picking me up every other day or so for little outings. That really helped keep my spirits up and keep me connected and keep on a decent sleep/meal schedule. Then I flew home to my place for two weeks, and had family drop by every other day with a dinner (which really helped). I was really glad to be home for the first week - caught up on TV, slept, walked, etc. BUT, by the second week, I found that I was spending a ton of energy trying to clean, do dishes, attack little projects, and I was tiring myself out and frustrating myself - everything took so much time and energy, and I lost motivation and energy halfway through. Depression, insomnia, and lonley-ness set in, I was really in terrible shape, crawling up the walls. So, I packed up and went over a friends' place, and was able to get on a decent sleep schedule, got cheered up playing board games with their nine-year-old, and rested up by getting into some nice light novels while everyone was at work.

So, I would say, get some books, and give yourself permission to slack off on all the other stuff you normally do, and make sure you fill in your calendar here and there with light social stuff. As was already recommended, I had my checks written out for two months, just fill in the amount and mail, or paid ahead of time where feasible. I forwarded my mail to my brother, and gave him a list of the bills to look for, and my stack of half-filled-in checks. A borrowed recliner was wonderful for the first month after surgery, then I moved to the couch for a week, then back to bed. I had a little alarm clock to keep track of when I took my last pain meds, and the little weekly pill thing as mentioned. Cordless phone (a previously-unused birthday gift!) was great - so I didn't have to keep getting off the couch - and my answering machine set on loud so I could screen calls from wherever I was if I didn't feel like yakking. My dad set up a little night-light attached to a timer, so I could see when I got up in the middle of the night or came home late, so I wasn't tripping over stuff. Pillows, yes. One for head, one to hug, one to prop under back, smaller one to hug when laughing or coughing. It was really nice to have email that I could access from the web - so it didn't matter where I was staying (my plans morphed a bit, I played it by ear....) Since I couldn't pull on the dishwasher racks when they were full of dishes, I got out the counter-top rack and did stuff by hand.

For me, my restrictions were (starting from time of discharge from hospital):

no driving for four weeks
no lifting/pushing/pulling more than five pounds for six weeks
low-salt diet for six weeks (600 mg per meal, 2000 mg per day)
(low-fat too, of course!)
no going back to work for six weeks

So, I stocked up ahead of time on household basics and food as best as I could. I didn't know until after surgery about the low-salt diet, so I couldn't eat most of the stuff that I'd bought (canned food - soups, raviolis, pretzels, etc - are loaded with salt!). But, they have low-salt versions of tuna, crackers, etc. Easy stuff to prepare for lunch. Regarding the lifting restriction, this included pulling wet clothes out of the washer. So, when I knew someone would be popping by, I'd put the clothes in to wash so that they'd be ready for the dryer when the visitor arrived, and then I'd ask for their help with that. Also, a gallon of milk weighs about eight pounds (so I'm told), so get smaller sizes of things - cans of soda instead of the big two litre bottles....

Just some thoughts here. I hope this helps, and I wish you the best!! Please keep us posted!

-Jennie

 

[karen wallin]

post surgery

post surgery

Hi JJ,

Only one thing I would like to add to the great advice everyone else has already given you, get walking when you get out of the hospital. Start slow, maybe a couple of minutes a couple of times a day at first and gradually build up your strength and you will be walking miles and miles before you know it. The walking really helps to clear your head and gives you the energy you will need to get on with your life.

You are doing the best thing for yourself right now getting prepared for what is to come.

We will all be thinking of you and praying for you, so let us know how it is going from time to time.

Karen