[Good Advice for Everyone...]

Author: Board Moderator-Sarah B. (---.208.71.135.Dial1.Chicago1.Level3.net)

Date: 09-22-02 13:45

Beth posted this in response to another thread and I asked her if I could post it as a new topic so more people would see it as it is great advice and she agreed. A couple things in it are specific responses to Jerry's recovery, but most is applicable to all post-surgery patients.


Beth wrote:

I am not an HCM patient; am only familiar with this board and the disease through the loss of a friend to the disease. i visit here to witness other people winning against what my friend lost against. that makes me feel better about her because i think she lost because she didn't know enough..........did not participate the way all of you do in managing her care.

However, I had thoracic surgery (chest surgery), a side entry, vs front which is what I assume you had, about 2 and 1/2 years ago due to a perforation to my distal esophagus that threatened my life and required emergency surgery.

My experience with major chest surgery was humbling as i had never been sick a day in my life prior to that experience. i was an immortal, healthy 37 year old. ha. ha. lesson learned.

6 weeks were what the dr.'s said was required as post surgery healing. I was in A LOT of pain and was unable to sleep at night without pain medication. However, I also discovered in the initial 6 week post-op period that in addition to the pain I began to just feel totally lousy overall --- including naseau and depression and my surgical nurse advised me to go off the narcotic pain meds to alleviate those symptoms. Given that I had surgery on my distal esophagus, nausea was not a good thing to have going on!!!

I did better switching to non-narcotic pain medication. I used extra strength tylenol. The narcs, while important in the beginning to survive the pain, became destructive for me after a few weeks.

I did not go back to work for a full 3 months --- which by the way was what i was legally entitled to by the family medical leave act --- paid time off. i got up and about; long walks etc. but also took naps for the first time in my life and slept 8-10 hours a night (previously i slept 5-6 and often less if I was travelling internationally for business) and exposed myself only nominally to the stresses of my very active life prior to the surgery during that time. i upped the proteins in my diet --- soy shakes, egg white omelettes, etc., to build my strength, drank as much water as i could stand to put in me and only chose to do what was good for my recovery. every other thing was put on the back burner without any guilt or questions whatsoever. i let my husband take care of what i normally handled. food, household chores, bills, etc. i let my staff at work figure things out for themselves and figured the world and my clients would all survive without the immortal me for a while, which by the way, they all do.

After the initial frustration of not being able to do what I was used to right away (what a silly idea, really! -- what --- did i think i was jetting off to europe for a round of 2 day meetings and back to new york to the office right away???????) things got better. I decided to do all this because the situation made it the obvious thing to do...........after all I was tired and frightfully skinny and in a bit of shock. some counseling helped me as well to put it all in perspective, get a grip on reality and accept things as they were.

Ultimately, once I switched to this strategy and gave up on being the immortal superwoman of the past : ) things got better.

the pain, the getting tired fast, all of that went away with time........i reached a threshold of acceptability within a few months, and the rest of getting all your energy back, feeling like yourself again, comes later...........in honesty it took me a full year to really feel like me again. and in total honesty, i will not ever feel the same again. i feel fine. even good. just different.

on humid days my ribs and back ache sometimes.......my ribcage still sticks out a bit on the side they went in..........etc. all things easy for a mortal person to live with : ) --- particularly one lucky to be alive.

when the dr.'s say 6 weeks they want to be encouraging and medically i think they mean you are out of danger in terms of reinjury from stress to where they performed the surgery.

and maybe some people do feel "fine" after 6 weeks. but did anyone ever cut the dr.'s chest open dig around in there a bit and put them back together again? so how would they REALLY know what it feels like?

i advise expecting a lot less of yourself. and giving yourself a break. don't feel bad about yourself if you feel bad. you're where you're at and that's all there is to it. and of course, talk to your dr.'s about the specifics of your condition.........

this is just a point of view on major chest surgery in the general sense.

you WILL feel better. whenever YOU are ready.

i also advise if possible to get off the narcs as quickly as possible........they can be very bad for your overall mental state. they are depressives after all..........

i hope you feel better soon. and because what they did for you is intended to improve the symptoms you suffered from prior to your surgery, you were in some ways prepared for your surgery while I was not, perhaps you will feel benefits and better than i did sooner.

so, be nice to yourself. relax and don't put pressure on yourself by expecting to feel good by some prescribed point in time. be active in choosing to do what's right for your recovery, no more, no less and just know you WILL feel better at some point.

good luck. it does get better a little bit every day.