Posted by: Taylor | December 5, 2013

Post Transplant Update # 9:

Sorry for no update the past few days.  We’ve had a lot going on with Bethany.  We believed we would be discharged from the hospital yesterday (Wednesday, Dec. 4th).  Monday and Tuesday was spent with pharmacist, doctors, and nurses preparing to leave.

On Monday, we also learned that Bethany’s liver numbers were on the rise again.  Tuesday, her numbers continued to increase.  Yesterday, Wednesday, her numbers went up again.

The doctors don’t believe this is an issue of rejections.  They did decide to increase her anti-rejection medication as a precaution.  Bethany had an MRCP late yesterday afternoon which re-imaged her bile ducts via MRI.

This morning her blood work showed that her liver numbers have continued to increase.  We have spoken with the doctors about her MRI yesterday.  No obstructions were found, nor did they see other reasons for her elevation in liver enzymes.

The plan now is to do another liver biopsy tomorrow sometime.  This should give us a good picture of the liver’s health.  Obvious concerns would be rejection (which would be odd considering her immunate suppressant levels are very good right now), re-occurrence of her primary sclerosing cholangitis, or an infection of some sort.

I’m not sure when we will know the results of tomorrows biopsy.  I’ll be very surprised if we discover anything tomorrow.  Most likely, we will remain in the hospital until Monday.

Angela and I are doing well.  We understand that these are just some of the bumps that come with a new organ.  A transplant is never a total cure.  At best, it means a healthier life, but a transplant comes with a whole new set of medical issues.

Please pray for Bethany.  She is obviously very disappointed.  I think Angela and I would be too if the Lord had not prepared us for all the ups and downs of life with a transplanted patient.

God prepared us for these ups and downs by bringing a very special couple into our lives who have also gone through transplant themselves.  Our friend is not a liver transplant patient, but we have still been made aware of the many difficulties associated with having had a transplant.  In fact, they are the ones who told us, “Having a transplant is not a cure.  It’s trading one set of problems for another.”  This was great advice and a great reminder that receiving a transplant is wonderful, but it’s not normal for the body.

We are keeping Bethany’s spirits up as best that we can.  She continues to make good advances with walking and activities.  Yesterday, she did a good bit of walking, and she visited the activity room.  She also visited the library on the 2nd floor.  There she received another stuff animal dog.  He has not received a name yet, but he is really cool because he is dressed up as Spiderman.  He also came with a gift card to iTunes which has become especially handy since she receive an iPhone 5c as an early birthday present.  The iPhone is also a great distraction and therapy device.  It has really lifted her spirit.

Please continue to pray in these ways:

  1. Pray for Bethany’s liver numbers to come down on their own.
  2. Pray for the discovery of the cause of Bethany’s liver number elevation.
  3. Pray for her biopsy tomorrow.  Pray especially for Bethany to not be anxious.  She is so ready to get out the hospital and feel normal.
  4. Pray especially hard that Bethany won’t need to return for another exploratory surgery next week.
  5. Continue to pray for a reduction in Bethany’s surgical pain.  I her pain levels are getting better, and that she has made some amazing improvements.  But, please continue to pray about this.  We have really pushed Bethany to reduce the pain medication.  She continues to improve, but this has been very hard on her and she is very tired.
  6. Pray for the rest of us.  We are all hospital tired.  We were are geared up to move Bethany out of the hospital, and begin the progression towards home in a couple of weeks.  This schedule might still be possible, but it could be delayed as well.
  7. Praise!  God has been so very faithful through this entire process.  Every time some difficulty arises, He has given us the strength needed to handle the situation.  Further, God has been faithful to provide our every need, and we give Him the full glory.  Needs are being met before we have time to worry about them.

Here is just one example:

Yesterday, we found out that one of Bethany’s anti-rejection medication would cost us about $400 a month.  We thought, “Wow!  How will we pay for that?”  Before we had time to think about this cost, a foundation from Angela’s hometown called Angela to let her know they wished to help us.

This organization was established to help families with medical needs.  They specifically help with non-medical needs related to ongoing medical care.  They have sent us a check for $500, and they contacted the Ronald McDonald House here in Atlanta to pay for our room while we are stay here in Atlanta!  Amazing!  Praise God, the one who takes care of the needs before we even know we have a need.

As a side note, the Lord brought it to my mind to ask for a prescription co-pay card for the anti-rejection medication.  This card helps to reduce our co-pay for this drug to $80 a month instead of $400.  Our insurance company has already adjusted and credited our account for the $320.  Praise God!

So through all this, we give God great praise.  Thank you for your prayers, notes, cards, and calls.  Each of you are making an enormous difference in our lives.  Thank you, thank you!

I will continue to update daily.  I apologize for missing a few days.  I think you can understand why.  We love each of you!

In His grace,
Taylor, Angela, Bethany, and Jonathan

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