Latest Update

Intense back pain continues with minimal relief despite large doses of narcotics. Doctor suspicions a rib fracture although recent MRI is inconclusive. Further testing has been scheduled for Monday. Pain has been severe enough to essentially confine her to the house and bedrest.

Everything About the Same

Not much change since previous blog. Joy has not been able to leave the house, still has nausea / vomiting every day and considerable pain although it has improved slightly.

Nissen or transplant anyone?

Home Again & again & again & again & again

For the eighth time in a year, Joy was released from the hospital.

She is still experiencing considerable pain and more nausea / vomiting than usual. It is probably wishful thinking to believe either will subside.

So now she recouperates prior to heading back to Duke in mid September. But hey........football will be starting there with a new inspired coach so will see about scheduling her appointments around a game. Actually the appointments are already set and I will have to work those dates around the football game schedule.

Go Blue Devils.

Now what is next?

Post Surgery Update

According to the spine surgeon, surgery went according to plan.

Joy however, is experiencing an extreme amount of pain, walking with walker assistance, using O2 since level has dropped significantly, kidney function improving but supported with fast IV rate of fluids and of course, not eating or drinking to their desires. What else is new?

Hopefully today will show some progress but we have learned to count on nothing. Nothing.

May be released Monday but appears she needs a lot of progress in the interim.

Surgery

Spine surgery scheduled for 12:30 tomorrow.

Kidneys showing signs of shutting down but last test showed "some" improvement.

Stay tuned........................

Remember "The Dime" ????

It now appears that Joy sitting in the chair for 4 1/2 hours while getting the IVIG infusion was the root of her back pain which I mentioned in an earlier blog.

Now, another turn on the dime.

So after about 9 days of unable to get out of bed and still in excruciating pain, Joy was admitting to the hospital only to learn that she has a compression fracture in her first lumbar in the spine. We await discussion regarding solution (s). Pain is being managed by IV.

We know for absolute certainty that this thing is an ever evolving process but we just do not know what will be next. This one was somewhat of a surprise although we were aware that the combination of age, radiation and drugs create brittle bones. Previous bone density scans have verified this in pre-transplant testing.

What next?

Anniversary

Today marks Joy's first year anniversary with her new lungs.

However, we are not celebrating in a traditional sense. No parades, marching bands, music, cheers or parties. This is also the first anniversary for the surviving family that lost the life of someone and that has to be tough for them. Joy has experienced a living hell this past year and still unwilling to concede that it was worth it. I can't blame her and each time we visit Duke and talk with friends and other transplant patients, we have a pretty good idea what is ahead and we don't like that either.

She was very sick during our return trip home and in a lot of pain so right now she feels pretty rough.

We just hope for the day that she feels pretty decent and begins to feel that the process is worth it. But for now, one day at a time.