Steps In The Right Direction

Thanks for your prayers and words of encouragement.  The diagnosis of GVHD in the liver was confirmed in that when the immunosuppression drugs were increased numbers started to come down. Evidently it is a classic case where the donor cells increased dramatically and started to attack my liver.  Results of a test from 3 weeks ago show 23% my cells now and 77% donor cells in my blood lines.  I was almost completely off the immunosuppression drug. The plan is to hold steady, increase the tacrolimus (immunosuppression aka tacro) and give my liver a chance to calm down by holding back the donor cells for a time.

To give you a better idea without being too boring my ALK went from 810 to 673, normal range 30-130, ALT 665 down to 321, normal range 7-35 and  AST from 365 down to 115, normal range 8-30.  As you can see there is a ways to go before normal even with huge drops.  Dr. Magineau expressed his surprise that the numbers dropped as far as they did in one week. He even had a smile on his face yesterday!  It took 3 weeks for the numbers to climb and will take at least that long to return to near normal levels. Itching on my body is a side effect of liver inflammation and that was intolerable for about 24 hrs. last week.  I am now on a prescription for the itching and a special cream.  It's not gone but is more tolerable.  Needless to say this has not been fun!  I really don't want to complain, it's not as though I am in any pain, I'm just "keeping it real" for all of you.

Again, friends and family continue to help us out.  We had a lovely Sunday dinner and afternoon with good friends Helen and Rob.  We spent Sunday evening and night with Jen, Glen and crew which is always fun. . We had a 7:45 am appointment for labs and U of M is only a 45 minute drive from their house which is nice for those early appointments.  Last night Kate and Dave had us over for dinner.  Do you see how pampered we are?  Den and I are very appreciative for each of you...prayers, meals and great company.  How could we ask for more?

I am getting a great lesson in patience, which has always been in short supply for me.  I do everything the Dr. tells me to do and wait for those levels to come down and the itching to disappear! I cannot tell you enough how much your messages, prayers and encouragement mean to me.  Just when I become complacent with the healing process the Lord sends me back to him for reassurance and comfort. That's OK with me. This will all eventually get resolved, of that I am confident.  I know who holds my future and who is my greatest comfort.

Enjoy your day...... Spring will eventually come and we will all appreciate it more because of the long winter.....the same goes for me personally.

Grace and Peace,  Peggy

A Curve In The Road

Where do I begin?  Yesterday as I entered the Outpatient Patient Clinic my main concern was, "Is this working?"  It had been such smooth sailing I was questioning the effect of the entire process.  I worried that my stem cells had been too much for the donor cells and that mine were winning this war. Everyone says and everything you read says a LITTLE gvhd is a good thing, you know that the donor cells are proliferating and host cells are rebelling. With gvhd the cancer has a lesser chance of reappearing.  As with most things in life I was worried about the wrong thing.

The minute Dr. Magineau entered the room he was concerned about my liver.  Lab work done 2hrs previously showed inflammation of my liver.  As an example (won't bore you with all lab counts) my ALK went from 172 (which is high) to 810, so quite a significant jump.  What did he attribute this to you ask? GVHD of the liver.  Now before anyone gets too worried because I am well past the 100 day mark this is considered chronic gvhd not acute gvhd.  Chronic gvhd tends to respond to treatment more easily.  The Dr. discontinued one med and gave me another plus I have to have daily IV infusions of another.  The infusion will only take one hour a day so not too bad.  Needless to say my port removal appt. was cancelled for today. The other good news is that my liver is neither swollen or sore to the touch.  I feel great!  Also all of my other labs were excellent, numbers going just where they should. So here is hoping and praying the adjustments he made will help. The next step would be steroids and we would really like to avoid that if at all possible.

So for those of you who have been faithful prayer warriors please pray that my liver would calm down.  In a strange way, as I can be a strange person, I have been informed that indeed the process is working, now just not to let it get out of hand because we all need our liver!

Our family vacay to Florida was relaxing and wonderful.  Our trip, Den, myself, Sarah, Ella and Grey started with car problems in Anderson, Indiana.  It put a kink in our first day and then more travel than we planned for the second.  We are so thankful it happened when  we stopped for gas and there was a dealership one block away.  The mechanic worked till closing, went home for dinner and came back and worked through the evening.  We were back on the road by noon the next day! Our house with 6 bedrooms and more importantly 5 bathrooms (for 17 people!) was great.  We had sunshine and warm weather, lots of pool and beach time.  We all left reluctantly for Michigan.....

Again thank you for all your words of encouragement.  I am getting out  more and it feels so good. Prayers for the liver inflammation would be greatly appreciated.

Grace and Peace.....enjoy and find the joy in TODAY!

Peggy