GVHD occurs when immune cells from the stem cell donor attack the patient's organs because they see them as foreign. In Arnie's case this is showing up as a rash on his largest organ, his skin. (You'll agree he has an impressive body surface area.) His rash first appeared in early March. Arnie started to take prednisone and within a few days the rash was gone. Starting mid-March, the prednisone dose has been slowly reduced. Unfortunately, the rash has now re-appeared on the lower dose of prednisone.
Our transplant physician offered two options for treatment. Arnie could take a higher dose of prednisone or he could be treated with PUVA. After considering the pros and cons, Arnie decided to stay at his current dose of prednisone and give PUVA a try. PUVA stands for psoralen and ultra violet light. Arnie will be "tanning" under UV-A light three times a week. Before each tanning session he takes methoxypsoralen, a drug that sensitizes him to the light's effect. He had his first session on Monday and tanned for 45 seconds!! The time will slowly increase. From now on, it will be very, very important for Arnie to wear sunscreen, a wide-brimmed hat and sunglasses when he is outside, to prevent sunburn. It's like being with an undercover rock star!
We are awaiting further news about Arnie's CMV count. Today's blood work showed some improvement. Arnie's brother Gene suggested the "Country Music Virus" could be driven out by rap music. We asked our medical team and they were concerned rap music would only make the CMV angrier. I guess we will stick with the foscarnet twice a day.
Enough medical news.
We had a quiet Easter weekend. Arnie and I attended a Good Friday service at the SCCA clinic and I went to the Easter Sunday service at a church close to our apartment. The sanctuary was decorated with tulips and daffodils. The music was wonderful, accompanied by a pipe organ, grand piano, trumpets and french horn. The choir sang "Alleluia" by Randall Thompson, a piece I learned with University Chorus last year. I sang very quietly along with the altos.Our highlight this week was a visit with Doug and Aa
ndra, friends from Richmond B.C. We had a great meal together and received lots of hugs from Marta & Lola, their fabulous daughters. I'm pretty sure the hugs will speed Arnie's recovery. Just look at the smile on his face.Love to all.
Arnie & Brenda
5 comments:
I have seen many, many photos of Arnie and I don't recall him smiling in any of them. If he truly were a rock star this photo could be worth Cagillions. A real pleasure to see his smiling mug. A rainbow in the rain,,,
I saw dolphins today, they are called Ikan Loomba Loomba in Bahasa language. There was a white egret on the barge today,,, I wonder if he got here on a rhino?
Past the halfway mark...wonderful news. Doug had sent on pix and it was great to see you all together. Hope the new plans for CVHD works quickly. Hang in there..before you know it you'll be home and see us all.
Blessings, The Crosbys
Hey Arnie and Brenda
Half way mark. Wonderful wonderful....home stretch now. Soon the flowers will begin to bloom and so will you. Bloom right back into our lives here on the praries.
I had a lovely visit with Dr. Boyle and she was so pleased to hear about you and I also gave her your blog spot.
All is well here. Just waiting for the sun to shine and brighten up our days.
The girls are good and enjoying their week off. Anna was in volleyball camp and practices for provincials . They have worked so hard we hope they do well. Hard to believe the group is all under 14 and are so talented.
Paulina is relaxing and bedazzling everything in sight. Ugg...never had such a pretty house.
Johns says hello as do I and so glad all is going well. We sure miss you and will await your return.
Take good care and know you are missed.
heather
Glad to hear you had a nice Easter. Hopes and Prayers that all these complications will soon be gone. It amazes me how much you need to be constantly aware of...all the do's and dont's seem daunting.
Think of often love to get the very informative updates, glad to know you are on the home stretch can't wait to have you back.
Take care, luv, Kim
Glad to here you guys were able celebrate easter even though you were far from home.
I was at the auction the other day (PBR) and had a little chuckle. They were auctioning some artificial trees and I thought of a story Arnie had shared with us at Men's breakfast. He shared a story about Brenda and her house plants. Well these would have taken all your worries away Brenda.
I should not ramble. I was thinking about you so thought I would drop a note. Take care and we continue to pray for you and look we forward to having you both back home.
Take care and god bless.
Dave / Serene
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