Hello everyone. Things here in Richmond continue to progress. Since last post Gennie has beeen doing well. For the time being she has a PICC line in her right arm. There has been some ongoing swelling in that arm and the PICC will have to be removed soon. The doctors are considering what type of access they will use next. There are different types they can select that we have not heard of before today. (more on that later) Gennie was to have her sixty day biopsy two weeks ago but with all the problems with her ports the doctors decided to put everything on hold until she had some time to recover. The biopsy is now scheduled for tomorrow. This will give us an update on how her transplant is going. In earlier post I have mentioned Graft vs Host Disease. Most Allo transplant patients develope some sort of this condition. We have been waiting to see how it would manifest with Gennie. We don't have to wait any longer. We saw the doctor today and he confirmed she has a case of it. Her left arm where the clots developed has been swollen for almost three months. We and they thought it was due to the origional PICC lince and then the clots. It probably was due to that. Now it is because of a form of GVHD. I do not know much about it but I am sure we will learn more very shortly. The treatment for this and other forms of GVHD is steriods (prednisone) , photophersis ( http://en.wikipedia.org/wiki/Photopheresis) and tacrolimus (her anti rejection drug). In the past Gennie has had difficulty with Prednisone and she is very concerned about taking it now. Problem is she does not have a choice. The use of Photopheresis will limit her need for high doses of Prednisone. If the team decides she will start Photopheresis that will dictate what type of access port they install. This GVHD in her arm may not and probably will not be the only GVHD she experiences it is just the first. We will deal with them as they show up. This is in many ways the most difficult part of recovery. We have seen many patient dealing with all sorts of this. It can go on for years and possibly the rest of your life. It is not to be taken lightly and will not be. One probem Gennie is having with her arm is range of motion. She can not extent her arm fully. The Doc wants her to do stretching excercises daily. This is easy to do and she has already started.
As always thanks to all for your thoughts and prayers.
That's all for now, Bob
This is the story of my involvement as caregiver to my wife during her ordeal with MDS and bone marrow transplant.
