help prepare me for surgery

[eatwell]

my surgery isn't scheduled yet, but probably within a month after my appt with dr lever on July 6th.

But, I'm a planner and prefer to know as much as possible as early as possible. So, some questions for you myectomy veterans:

1. What is the average length of hospital stay? I know this depends on complications and extent of surgery (i'll probably have valve repair also), but how about a ball park average?

2. If I have access to a hospital bed, should I get one for home use temporarily? I don't own a recliner, but could probably get one.

3. For you Mom's out there, how does the pain compare to childbirth? I went natural for two babies. I went natural as I didn't want drugs to go into my babies and because I like holistic health and natural living and health, except of course when one needs a myectomy.....

4. When you say sleep is tough, how does it compare to sleep deprivation when you have a newborn? I realize pain is involved, but is it merely the pain that interferes with sleep or just inability to get comfortable? or what?

5. How many weeks until I can resume some average household functioning? Looks like Eve at around 5 weeks or so was doing some light cooking, etc. I have a 4 and 2 year old and realize I will need a lot of help with them and am working on a schedule for that. This is going to be so tough on them. My husband, Gary, too. He plans on being home with me for the first 2 weeks, do you think this adequate if I gather additional help after that?

6. Does one lose a bit of weight from surgery, nausea, etc? Do appetites return ok? Haven't heard much discussion about this, so maybe it's a non-issue.

I know I will have more, but thanks in advance for any responses.
Laura

[mtlieb]

Re: help prepare me for surgery

Just from my own experience:

1. What is the average length of hospital stay? I know this depends on complications and extent of surgery (i'll probably have valve repair also), but how about a ball park average?

5 days. Honestly, if there are no complications they'll be pushing you out the door at that point.

2. If I have access to a hospital bed, should I get one for home use temporarily? I don't own a recliner, but could probably get one.

Unless your insurance covers it, I'm not sure I'd bother with the hospital bed. To be honest, you're really not going to be comfortable sleeping right away regardless. I myself wanted to get back into a normal routine, and into my own bed, as quickly as possible. A recliner would be nice though, and it's something you'll use after your recovery as well.

3. For you Mom's out there, how does the pain compare to childbirth?

Can't comment on the childbirth of course, but I found the myectomy to be much less painful than having my kidney removed five years ago. I recovered much faster from the myectomy as well.

4. When you say sleep is tough, how does it compare to sleep deprivation when you have a newborn? I realize pain is involved, but is it merely the pain that interferes with sleep or just inability to get comfortable? or what?

For me it wasn't the pain as much as the inability to find a comfortable position. I'm a side sleeper which made it a bit worse, but I was able to get back to my routine pretty quick. I found that a pillow clutched tightly to my chest enabled me to sleep on my side rather comfortably. One of those body pillows would have been nice for that I suppose.

Nothing compares to the sleep deprivation of a newborn. LOL. My son kept my wife and I up all night, every night, for months. I think the myectomy was much easier in that respect.

The pain really isn't all that bad Laura. Most folks can get by just with Tylenol.

5. How many weeks until I can resume some average household functioning?

You'll be on a weight lifting restriction for some time after surgery, which includes pushing and pulling things as well (i.e. vacuuming). Bending over and certain other movements can be uncomfortable as well with the normal sternum popping that occurs after the surgery. Those types of things should be avoided as much as possible while you are healing. Get as much help as you can around the house and pamper yourself for six weeks. You deserve it!

6. Does one lose a bit of weight from surgery, nausea, etc? Do appetites return ok? Haven't heard much discussion about this, so maybe it's a non-issue.

I am the exception here, as I don't believe I have ever lost my appetite in my life... regardless of how sick I have been at times. I actually gained weight after surgery. LOL. I do believe though that keeping my hearty appetite and eating normal foods helped me recover faster.

Just my thoughts, others will have their own experiences to relate.

Jim

[Pam Alexson]

Laura ,

Jim was on the money in his descriptions. # 3 , I have had 3 children ; 1 c-section. It is not the same kind of pain. Child birth pain passes quicker , when the child id born and it is up and down with the contractions. If you have ever broken a bone that is more like it. The nagging pain of the broken bones and overstimulated nerve endings are what you feel for a few days until the swelling goes down. With the pain meds it is as Jim says not too bad. In thoery you know the pain is going to be bad initially but by knowing you are able to deal and manage it with meds.

Pam

[jmurray]

Laura,

I just had my surgery almost two weeks ago and here is what I have experienced. I am 39 years old and had my surgery at The Mayo Clinic.

Hospital stay - They told me plan on 5-7 days and they discharged me on the 5th day in the afternoon.

Hospital Bed - I don't see a need for it although maybe a recliner might be nice. Like Jim said it is all a matter of getting comfortable. I was determined to sleep in my own bed so I propped up the pillows and slept kind of sitting up (felt less pressure in the chest) I also did not use any pain pills at home except for at bed time. I think that really helped the sleep thing. You may not get full nights sleep but that's okay. a nap in the afternoon is a nice little treat. When my head starts bobbing I just close my eyes and take a cat nap.

Moms- The nurses at Mayo told me that women handle the pain the best, followed my older gentlemen, and the worst were younger men like me. I just said "keep the pain meds flowing" They were awesome about helping me manage any pain.

House Duties - Since Ive been home (7days) I have been taking multiple walks, cooking, picking up, making the bed, etc. Bending over is a bit painful so I have been using my legs a lot to crouch down (everyone should do that anyway) No vacuuming, mowing etc. I have also found out that opening heavy doors at retail stores is a no no right now too - ouch!

Weight - I did lose about 10 pounds since the day of surgery. Part was due to no appetite in the hospital (the food was kind of gross too) but now I am eating normal but probably healthier that pre surgery. Also before surgery walking in the neighborhood was kind of out of the question. Now I am saying "I think I'll take another walk" I asked the surgeon to do a tummy tuck for me while he had the knife out but he must not have though I was serious A few pounds lost has been just fine for me. Now I will exercise to keep it off.

Hopefully this is not too much info. If you have any other questions though I would be happy to answer them. Feel free to PM me anytime.

Best wishes,

John

[Stuart Schwartz]

Not much to add to the above.

I had Barbara get me 6 more very good soft pillows for the bed.
I found these to be a blessing. I could arrange them in a sitting up type position & one under my legs. Much like a custom fit recliner in bed.
(I hope your husband is a still sleeper, if not keep a hammer close).

Still it was hard to get more then 2-3 hrs of sleep for a couple of weeks.

Worse of all is cabin fever. Though driving in a car is not the best, getting out of the house is.

Also Myectomy seems to be very tough on the spouse. They make it about 2 weeks to the day and then they start to slide off.
They can get irritable at times. We myectomy patients need to prepare for this and tolerate it the best we can, though we may never figure out why this happens.

[felixdacat]

1- 5 days if everything is perfect. I was discharged at 6 days. The 1 day delay was because of a possible fluid buildup in my chest that they wanted to monitor.
2- Personally, I would forget about the hospital bed. I found it impossible to sleep in the hospital bed, but had great sleep stretches when I used the “Cardiac” chair, which is actually just a recliner.
3- No ability to comment, but I will say that the post operative pain is manageable, with the exception being if they need to leave the drainage tubes in for a few extra days. Without morphine, that was unbearable.
4- 3 cheers for Gary!!! Sounds like a great partner. Has Gary had to deal with post surgery recovery before (parents, siblings)? If yes, then he knows what to expect (you will be a bit moody). If not, this will try both of yours patience. Realize this going in. Its going to be tough 6 weeks.
5- Although I ate, I was not hungry for two months post surgery. Pretty damn good diet, which my wife wishes I could duplicate today. One of the biggest problems I faced was with potassium. Most people end up with too little post surgery, but some people can have too much, because they give you supplements. I ended up with a terrible bout of nausea when I OD’d on a banana.

[vmcmahon]

Re: help prepare me for surgery

Hi Laura - I am just getting ready to be discharged tomorrow from Cleveland/Dr lever. I had a myectomy and valve repair on Tuesday june 14th. At the moment i am being released tomorrow. That gives me a 7 day stint. I earned an extra 2 days in ICU for 2 reasons - First day there was no bed available in the ward when i was ready to move. Then the second day i got a V-tach, which corrected itself but they wanted to stay to monitor for another day. Otherwise i have had a good recovery

I would not get a hospital bed ... they are terribe. I did pick up a recliner a few weeks back for home - I am looking forward to that

The pain in my opinion is not that bad. At night a few pain pills help you sleep, the worst is as the others said - just finding the comfortable position

My appetite returned quickly and is back to normal again.....Even had some Chicago deli cheese cake last night !!!

Let me know if you have any questions... Cleveland is a great hospital

[sandylevitt]

perspective from felix's wife

Having given birth, but not had a myectomy (but other surgery), labor pains are probably the worse. I think the similarity is going to be a
"when will this get taken out" to a "when will I be fully dialated" . i.e.
everyone is different as to when the breathing tube and the chest tubes come out and you dont know when that will happen (though you can get some idea). With labor, you know if you are progressing but you dont know if its going to be 1 hour or 15 hours until you can push.

I would DEFINATELY get help for 5-6 weeks with the kids. I was the healthy partner trying to handle a 3 and 5 year old while working. I caved in and hired help. Best thing I ever did! You never know what is going to come up. We did not have family to help ,except the 1st week.

not being able to drive for about 6 weeks also doesnt help with the difficulty with the kids.


sandy (who DEFINATELY caved in and go the epirdural).

[Cynaburst]

I agree with Sandy (about both points - epidural (which, by the way, is not advised in HCM patients and caused my blood pressure to go down to 50/30 after childbirth) and getting help after surgery for about a month (for a total of 6 weeks of having someone around) to help with the kids. I haven't had a myectomy but have had major surgery with a baby at home. There was no way I could have taken care of my child and myself at the same time. Even if you got a teenager to help you with cooking. feeding, lifting, playing, that would be helpful. Ideally, you would have an experienced childcare provider who drives, but at the very least, a mother's helper would be a necessity.