August 25, 6 months after transplant

I wish I could say that 6 months just flew by. It hasn’t. The road has been long, sometimes frustrating, sometimes nerve racking, yet we are fortunate. Rafi is taking forward strides. She is a wonder to resiliency. She makes Brett Favre look like a wimp. People have asked, knowing what you do now, would you put Rafi through this procedure? The answer is an unequivocal yes.

Yesterday was our 6 month biopsies, skin fragility test and photo session. Dr. Kooy, who was Rafi’s physician while in the intensive care unit, was the man in charge of keeping her sedated through the procedure. He thought she looked great since he last saw her. he was taken with the skin quality and coloration. Dr. Tolar was equally impressed with her progress. Overall, Rafi’s skin looks great, even though she is going through a period right now where her skin is very fragile. She has more small wounds on her neck, face, thighs and upper arms than she has in months. We all think that the 4 weeks of rituxan has made her skin fragile. The wounds do heal much more quickly than pre-transplant, the is if she doesn’t continually re-injure them. You can ask Rafi, “what happens when you scratch?”, and she will answer “I hurt myself”. Intellectually, she knows to tap instead of scratch and we witness her tapping her arms while she is asleep. So she has clearly internalized that lesson. But tapping doesn’t always work and she ends up scratching until she rips her skin in certain areas. It is a vicious cycle. Regardless, her skin generally looks great. Areas that were problematic, are not anymore. There was a time when her calves would just blister and her skin would tear from us holding them as we cleaned and bandaged her feet. No longer. There are times when she will kick like a bucking bronco and I am white knuckling her calves and still no injury occurs. She can rub her eyes without tearing her eye lids. She tripped and did a face plant the other day. Before this procedure, that would have been enough to cause rapid blister formation on her cheek which would lead to a nasty wound that would take a month to heal. She didn’t even get a mark.

In regards to the skin fragility test, this is where Dr. Tolar forms three small blisters with a suction cup of sorts. In January, it took four and a half minutes for the first blister to form on Rafi. Yesterday, it took twelve and a half minutes. It took me about forty minutes to form a blister when I did it. So, as I said, we have forward progress.

Now for the other patient. Jackie spent a few days in the hospital and then had IV drugs for a few more days while at home. She is doing much better now and is almost completely healed. It was certainly nice to have both of my ladies home at one time. While Jackie was in the hospital, Emily, Jackie’s sister and Rafi’s favorite person in the world, flew out here on a moments notice to help. We certainly would have had a much more difficult time had Emily not been here and Rafi had a blast for a week.

We are now thinking about our trip home to New York. As it stands right now, we are planning on moving back east at the end of October. It will be great to get home to see family and friends again. There is so much to do before then and I am not looking forward to packing everything back up again but so be it.

Comments are closed.