Pain management/Anesthesia?

[mkew]

Thank you all for your answers to my questions so far. I'm trying to balance my education from people's bad experiences with people's good experiences. It seems to me that so far the good experiences are more common. I see this kind of like taking the risk of skydiving--I'm researching everything, but there is no way to foresee everything. If I jumped out of an airplane, everything could go great and then I could land weird on my leg and end up crippled for life. It happens! At least this way, other people get a great benefit.....

I'm being assessed now to join a NINE PERSON chain, which blows my mind. We may be looking at a surgery date in April if all goes well with all the people and teams involved.

I think an essential component of my recovery will be to LET GO of expectations. I am assuming that I will be very tired for a year or more. I keep hearing stories of people feeling totally normal after three months, and if that happens that's great, but I'm anticipating real exhaustion for a long time and intend to treat myself that way. Fortunately, I work at home in a low-stress computer job. I want a full recovery even if it's not quick.

So my question for today is about anesthesia. I HATE HATE HATE nausea and vomiting. I REALLY want to avoid anything that might cause that, if I can. At the same time, I've read that managing post-surgical pain with medications goes a long way to avoid chronic pain later.  I haven't yet discussed this with the transplant coordinator. To help me talk to her about my concerns, I wonder if anyone can share the pros and cons of their pain relief, both during and after surgery? Is there anything one can do to prepare the body for anesthesia/narcotics? Any information would be very much appreciated.

[jatopa]

Everyone is different.  I had no nausea or vomiting at any time.  I was discharged the day after surgery and only took extra strength tylenol after leaving the hospital.  At times, that didn't quite cut it, but I don't like the stronger stuff so I just toughed it out and timed my walks around the tylenol.  I flew to Paris one month after surgery and was walking 5 miles a day by then. 
Best of luck with your donation!   Those chains are amazing.

[elephant]

Dear mkew,

I wish you well with your donation! 

The most likely time you will experience nausea is when you first start moving around after surgery.  I've heard (and personally experienced!) that the most likely candidates for nausea are 1.women 2.nonsmokers 3.use of iv narcotic pain relief.   The good news is that it can be managed very well with medications like Zofran.  If you discuss this with your surgical team and post surgical nurses they should be able to "head it off at the pass." 

Love, elephant

[SWB]

The one item I was seeing as a trend on these posts during my donation was to get off the pain medication post surgery as quickly as possible.  I am not sure that was a really wise thing for me.

I did not use any of the morphine pump and never needed it.  I only took extra strength tylenol for the first 24 hours.  And, I explained to the nurse that I did not want to get sick and restated that to the MD team.  Their response was that I should not let that be a concern since they could give me something else if it was a reaction.  After the first 24 hours I started having some real problems getting comfortable from the anethesia gas pains.  Finally, my nurse got through to my stubborness by stating something logical - "It is NOT good for your body to go through the amount of pain after such a surgery.  Take the pain medication because it is there to HELP you." 

My advise is - take it if you need it and don't take it if you don't.  Go in with no expectations.  Some folks posted that they took extra strength tylenol during the day and other pain medication at night.

In retrospect, I was going in determined to not start vomiting and to refuse anything that would contribute to it. 

I wasn't in a great amount of pain.  Well, with one exception - I sneezed the night after I got out of surgery and I am not sure that I have EVER had such an experience before.  I can only describe it by pointing to that scene in the movie Alien where the baby alien suddenly comes eating it's way out of the person's stomach and jumps out.  It brought me to my knees and I think my body must have taken note - I did not sneeze again for over a week.  In retrospect it makes for a good memory.  But, one I think I could have lived without  .

[CK]

It's good to go in with no expectations but...don't expect to be tired for a year. I felt pretty much normal after 3 weeks. I was nauseated and motion-sick only because I removed the scopolamine patch too soon, and of course, there was some pain and stiffness, but nothing too terrible.

Tired for a year? No...

[Dora76]

Hi!  Good luck with your donor experience, and that's fantastic you may be part of a 9 person chain.  I agree with te other donors who've said everyone responds differently.  For example, my mother (who was the recipient) gets extremely nauseous when exposed to anesthetic, and my uncle who had abdominal surgery had hallucinations as a result of the pain medication he was on...  That example is a bit extreme, but his wife is a doctor and was able to explain it to him quickly.  For me, I had a little bit of blurred vision.  So, it's just important to be aware you could react a little differently and listen to your body and don't panic.  I think it's good to at least have some idea of what to expect going in so you can plan accordingly, or at least I found that to be true for myself.

I try to avoid unnecessary medication and painkillers because I kind of figure, if I don't really need it or can achieve the same result, why put something else in my body?  I didn't get much nausea after the surgery, except when I begged for ice chips because my mouth was so dry it felt like sandpaper--that made me nauseous and vomiting was even more painful right after surgery. So...be careful with that...it was a little bit of "solve one problem, create another."  Also, be aware you may have throat pain from being intubated, so it's okay to ask for cough drops or have a friend/family member keep some for you.

While I was in the hospital, I took the prescription pain medication when the pain started to get uncomfortable to the point I didn't want to move.  Otherwise, if you wait too long and the pain really kicks in, it gets too difficult to move around at all, which will impede recovery time.

I spent three days in the hospital (because of a minor complication), but after I got home I only continued to take the oral painkiller (can't remember what it was, sorry) for another day.  After that, I switched to extra-strength Tylenol and I didn't even take that for very long.  Moving forward, I just went at my own pace and tried to improve my stamina every day.  As for the "tired for a year" question--I was nearly "tired for a year."  That might be an extreme way to put it; I'd say that I "tired more easily."  Many, many people have told me they "felt totally fine" after 3 weeks, which in the past made me embarrassed to admit it, but regardless of what people/doctors say I think it's important to know it is a big trauma to your body and for some people can take longer to recover--I wish my transplant team would have been more clear about that part, but I was 27 when I had the surgery, so considered a "good candidate" for a "quick recovery."  That's what they kept repeating to me, so I was surprised when I had a longer hospital stay and recovery time.

So my advice would just be to stay open-minded but aware of options and possibilities and be aware of your body and your reactions and adjust accordingly.  I'd also recommend using pain medication when necessary so that you're not so uncomfortable you become immobile or lethargic--you have to find a balance.