Thursday, April 15, 2010

An update on Chris' appointment

Chris had an appointment with his bariatric surgeon yesterday. The doctor is pleased with his progress and confirmed that Chris is losing weight at an excellent rate. The doctor elected to inject saline into Chris' port in order to place a greater restriction around his stoma. This will keep Chris from being able to eat too quickly. Chris reported that it was a very big needle and it did hurt when his skin was pierced to access the port. I saw the band-aid and in layman's terms, it was a big ouchie.

Perhaps inspired by all of the Civil War documentaries we've been watching this week, my immune system has elected to attack me on two fronts. The skin GvHD is the worst that it's ever been. There are several rashes occurring on multiple parts of my body. The rashes themselves are the largest they've ever been and occurring on new areas. Don't fret, I'm still one of the lucky ones and my case would still be considered mild compared to others. It's itchy and unsightly, and that's about the worst of it.

My right eye is an attractive shade of pink and both eyes feel itchy and dry. Of course, they aren't physically dry, which is a crafty little trick that GvHD likes to play. They feel mildly strained, making reading a joy. The inside of my right eyelid feels like it's been coated in sand, making each blink an exercise in awareness. Again, I've got it good. I still remember meeting a patient in the apheresis clinic prior to transplant number one getting photopheresis for the GvHD of her eyes. Her eyes were so obscured by mucous, and the skin so pink and swollen, that I couldn't tell you their color. I often wonder how she is.

In summary, to the casual observer, I look like I have eczema, pink eye, and a moderate case of dandruff. Some days, I feel that I should have a shirt made up saying, "It's GvHD, not cooties."


lisa adams said...

UGH. So sorry for you. And Chris. I guess overall that's great news for him... so for that: 3 cheers!

I have no words on the GvHD... I can only hope it improves enough to make you more comfortable soon. And that you can still tweet during the flareups!

Sending hugs to you both.

Wiley said...

I know it sounds weird, but I'm delighted to hear it! You're doing great! Keep it up!

Anonymous said...

Ugh!!! No matter what you have been through so much that the GVHD should not be bothering you and leave you alone. But I also like to see a little because I know they are eating up any remaining lurking leukie cells.

If you do make up your t-shirt please consider also making up one for the users of prednison. Maybe a tag line of "I am not a bobble head but am on pred". I bet you will think of something far more crafty than that!

Keep fighting superstar!

Kacie said...

Random question...does graft versus host ever resolve itself or is this a permanent side effect of a successful transplant?

Ann said...


GvHD is something of a mystery. You want to have a very small amount of it because there's evidence that patients with low level GvHD have the smallest chance of relapsing. Too much GvHD can kill you. Some people have it for the rest of their lives and some transplant patients never experience it. It can suddenly disappear only to flare years later. The range of GvHD that I'm displaying makes my transplant and local doctors happy, but I have to be monitored and aware of any changes. If my skin starts to thicken or if I notice any other signs, I'll probably be placed on steroids. It's just one of those things. :)