Merry Christmas & GVHD
We had a great Christmas, and managed to stay home and out of the hospital. That was our number 1 goal! Santa and a few of his very special elves gave K an amazing Christmas despite how she was feeling.
Unfortunately the day after Christmas life returned to our normal and we were back at clinic trying to avoid an inpatient stay. K was given IV antibiotics, extra fluids for her poor kidneys and found out that the rash the on call told us was contact dermatitis was actually GVHD. I was pretty sure it was GVHD and didn’t believe for one second the on call dr knew what he was talking about, especially when he said if it itches call me back. Ummm sir that was about the second thing out of my mouth! So now we are armed with steroid cream we are to use twice a day. K is also having GI issues which is almost impossible to determine if it is her normal post BMT issues, a virus or GVHD… All lovely choices. She has been complaining about her knees hurting for the last couple of weeks and on Christmas Eve she started complaining about her hips hurting too. This is probably GVHD as well. To be honest we have been extremely blessed not having to deal with GVHD until now but it still stinks. For Kimbell it is uncomfortable to say the least. GVHD is where the donor (graft) is fighting Kimbell (host). At this point we are unsure how it will affect her weaning off of her anti rejection meds, particularly since the CSA had kept the GVHD at bay but K’s kidneys are not happy thus the accelerated wean.
Last but not least, poor Kimbell is turning into a bag of bones. She barely eats or drinks anything anymore. K says that her stomach hurts which I believe but she has lost over 20 pounds since the BMT journey started so we are meeting with the dietician Monday. Honestly I thought they would just put her back on TPN but they said if she keeps losing weight they will put in an NG tube. That really freaked poor K out. She does not deal with tubes down her nose or throat, regardless of how many she has had over the years.
On the really cool front, all day on Christmas Kimbell wanted to call Dr. Tolar and wish him a Merry Christmas. I told her no because with our luck he would be at church , opening gifts or eating Christmas dinner! So we emailed him. In true Tolar fashion he replied with, “which number do I call her at?” On Friday Kimbell was able to talk to Dr. Tolar. What a sweet kind man. We are so incredibly blessed.
I hope you all had a wonderful Christmas, and thank you for keeping Kimbell in your prayers.
Love to all,
Paige, John and K
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4 thoughts on “Merry Christmas & GVHD”
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GVHD does suck! Gabby is still fighting it. If you ever want to talk call or message me. Tell K to keep her chin up and we are praying for her. NEGU,
Poor Kimball:( We are not GVH fans at the Rohe house. The rash is extremely painful. Also the muscle and bone pain is as well. A mixture of IV steroids and oral along with Cellcept has kept it under control so that Danny could function. Now only on oral steroids (8 yrs) . Cellcept was killing his stomach after being on it for years. Just something we work with as Kimball’s body will also so that the new immune system and body can learn to live as one. PT helped tons!
Merry Christmas sweet, strong Kimbell! I wish you and your family an ocean of great days and a cruise ship to float on those days in peace! Love you
Merry Christmas and hope you have a Happy New Year! I am thinking of you guys every night wondering how things are going. I wish things were better than they are. Poor Kimbell and also you! The stress is a killer so please take care of yourself!