Saturday, May 14, 2011

Update & Graft-vs-Host Disease

I'm so very creative with my post titles, huh?

Keegan's had an ok day.  He struggled with his fever all night, but regularly scheduled tylenol has kept it down today.  We are out of the first 24-hour period with no growth on the blood cultures.  We should be able to go home tomorrow late afternoon if the blood cultures stay negative.  We would assume this was a viral infection at that point.  Although it has been suggested that it is theoretically possible that the fever could be part and parcel of this graft-vs-host reaction.  We'll have to just wait and see.

I promised an explanation of the graft-vs-host issue yesterday.  I'm at somewhat of a loss as to how to explain it though.  Start at the beginning I suppose.  Generally GVH is seen as a complication from a bone marrow transplant.  It is, by it's very definition, a condition where the graft (donor cells/organ) attacks the host (transplant recipient).  It can happen in solid organ transplants, but it is extremely rare in just heart transplants.  The intestinal biopsies showed all the classic signs of GVH, but it will take a very specific blood test to confirm this diagnosis.

The hospital's chief pathologist has confirmed that we have preserved blood samples from both Keegan and his donor from pre-transplant.  We will take a very large sample of blood from Keegan now to compare to both the preserved samples.  If we find specific cells called leukocytes from Johnston in Keegan's blood, it will be a definitive confirmation of GVH.  We believe that this same test was run on some tissue from a heart biopsy we did in Boston two years ago.  We were told then that they had detected a very large amount of "donor cells" in Keegan's heart.  Many more than they would have expected to see at 18 months post-transplant.  Our cardiologist there said they figured it meant he wasn't at much risk of rejection, but they didn't know what else it could mean.  Well, now we know.  The diagnosis is further supported by his skin and liver issues.  

The treatment for intestinal GVH calls for a steroid pulse over the course of 4-6 weeks with antivirals and antifungals to prevent infection during a very immune-suppressed period.  The combination of all this would depress almost anyone's bone marrow, and since Keegan's is already not in great shape, we agreed that the pulse would need to be started while inpatient for constant monitoring.  There is no guarantee that the steroid pulse will work.  GVH can be a persistent little you-know-what.  But that is where we will start.  "Stopping" the GVH does not mean that Keegan's GI problems will be fixed.  It is just the first step.  We will never stand a chance of rehabilitating him to the point of getting off TPN or even tube feeds unless we stop the process of him attacking himself.  When the initial steroid pulse is over, we will repeat his colonoscopy and also perform a bone marrow biopsy to see if it was successful in stopping the GVH.  If not, we try something else.  If so, we can then hopefully still head to Boston for treatment and rehabilitation.

We were planning on admitting Keegan this coming Monday to do the big blood draw and start the treatment.  The plan was to start treatment immediately, even though the bloodwork would take at least a week to perform.  Even if the GVH could not be confirmed, the steroid pulse is still our best shot at stopping the cell death process occurring in Keegan's intestinal tract.  All of this is now on hold for at least two weeks while we give Keegan sufficient time to recover from whatever he is fighting right now.

Nothing ever goes as planned with Keegan.  He never "read the book" on what is expected from normal heart transplant patients.  In true form, his port is bleeding from the site yet again this evening.  We have once again consulted with hem/onc.  They have advised that his port likely is need of some decent rest for a minimum of a week to stop this bleeding.  There is also a test we will probably want to run to rule out a reaction to the heparin we use to keep his line open.  We will run his TPN tonight and discuss it with our team in the morning.  If they agree with hem/onc, we may have to wait until Monday to secure a PICC line for his TPN.  I really hope there's an easier answer than that.

I sure miss my baby girl and am so tired of our family living like this.  I feel like I'm letting Audrey down by not giving her the security and familiarity of a family unit and normal schedule.  Every time we even remotely start to resume our little version of normal, we somehow end up right back here.  Keegan may be used to it, and Audrey is certainly being taken care of and treated like a little princess by my parents.

Still, I long for us to be a family again.  Having this upcoming treatment and pushing back a trip to Boston just compounds that stress because I know it will be a long-time coming before we are well and home together for any length of time.  I pray that she will understand it one day.  I pray more than anything that we finally will be able to find healing for Keegan from this long journey, so we can truly be a family again when it is all said and done.  I struggle daily to lay it at His feet.  This valley is not as deep as it could be, but when you're in it for so very long, it gets increasingly difficult to see the way out.  Sometimes I feel that if I keep trying to carry these burdens myself, it will somehow justify them.  I know that is foolish, but it doesn't make it any easier.  For tonight, I am thankful for His love that carries us through the valley... no matter how long it may be.

The Lord is my shepherd.  I lack nothing.
He makes me lie down in green pastures;
He leads me beside quiet waters,
He refreshes my soul.
He guides me along the right paths, for His name's sake.
Even though I walk through the darkest valley,
I shall fear no evil, for You are with me.
Your rod and staff, they comfort me.
Psalm 23: 1-4


Julie said...

Continual prayers for Keegan and all of you.

Anonymous said...

I was researching GVHD affecting the heart and came across your blog. I will keep your family in my thoughts and prayers. I am not sure if you have had communication with the bone marrow transplant team. If you have not, I suggest you do. GVHD is a common among BMT patients so they may be able to provide valuable information. Best wishes!