Sunday, April 15, 2012

Recovery is Hard

Before the transplant we thought that the actually physical recovery immediately after the surgery would be the hardest thing that Jay would face, but he blew through that with no problem at all.  He was discharged four days after the transplant and everything looked pretty peachy.

Our Transplant Notebook warned us that there would be a honeymoon period, and then something would occur that meant the honeymoon was over.  Maybe further surgery would be needed, maybe there would be another hospital admission for IV steroids if it appeared that the body was rejecting the liver.  In our case, it was medication-induced psychosis.  

The day that he was admitted for the latter, his labs looked a little suspicious.  His WBC count was higher than it had ever been, two of his liver enzymes were pretty high, and his Total Bilirubin had increased a bit.  Whether his labs were related to his psychosis we'll never know, but we do know that things went a bit wonky.  They normalized while he was in the hospital, and then they were wonky again the Monday following his second discharge.  That was the Monday when the nurse called to tell us to be prepared for a liver biopsy the next Wednesday.

There wasn't much we could do about the biopsy, but we decided that we needed to be much more intentional about Jay getting quality rest.  We implemented a strict afternoon naptime and a "no entertaining after 8:00pm" policy.  By Wednesday Jay's labs had improved so significantly that the biopsy was cancelled.  

Jay feels better than he's felt in years and wants to take advantage of every moment he has, but even in the midst of that we've learned the hard way the necessity of focusing solely on only healing activities.  Fun stuff like walking, eating out, and visiting with friends come only after an excess of naps and nighttime sleep.  

Who knows if the improved labs had anything to do with intentional rest, but we figured it didn't hurt and that it was a practice we needed to continue.

It's surprising to me how much we have to concentrate on creating an environment and lifestyle that are conducive to recovery.  I would have thought that once he was out of the hospital and at home the rest would be easy.  But every time we see the surgeon he says, "I had the easy part.  You have the hard part.  Healing is the hard part."  I wouldn't ever want the responsibility of transplanting an organ, but there is a sense in which the long-term intentionality involved in recovery is extremely difficult.  Everything else is secondary to the healing environment and healing lifestyle.  

Who knew?

1 comment:

Anonymous said...

I have really found meaningful reading your blog about Jay's illness and transplant.

I have especially liked this entry. Rest is of the utmost importance. The hardest part is left to the pt to recover from what we do To you in the hospital. This concept can be almost impossible to impress upon pts/families and especially well meaning visitors. But the difference one can see in a pt that has slept in a quiet dark room for 6 hrs is not only outward but like you said MB it is in the labs as well.

Good thoughts, peace, recovery, and healing to you and your family MB. Susan Rivers