Thursday, June 24, 2010

MDA follow-up

Yesterday was yet another day in Houston, but this time it was expected and has been on the books for three months. It was supposed to be my 21 month check-up. Thanks to the GvHD flare-up two weeks ago, it was a follow-up to see how the medrol and prograf had affected the situation.

The itching that had propelled me into MDA two weeks ago has become very tolerable. I still have moments of insane scratching, but the episodes are happening with much less frequency. I thought the GvHD in my mouth was getting worse, but now I suspect I forgot to use the steroid mouthwash one day. My gums and the lining of my mouth were swollen and sore and I didn't get much of anything accomplished that day due to the distracting nature of constantly feeling like gremlins were rubbing the tender tissues with sandpaper. I will try to never forget the dexamethasone rinse again.

Spicy food consumption is way down in the Gregory household. Vanilla ice-cream intake is up. The ice-cream is nice and bland and the temperature soothes the inflamed tissues. That's my story and I'm sticking to it.

Dr. K. was non-plussed by this past weekend's mystery illness. She said the fact that some of my blood counts were elevated accounted for it. She also authorized the next round of vaccinations. Five shots. Two arms. I'm still sore.

As Dr. K. sorted through the mystery that is my GvHD, she speculated that I'm gearing up for a big flare-up. No one wants that, especially me. It means discomfort and months of steroids. No thanks. She's increasing the Prograf to 1mg per day. I'll stay on it for three to six months, then we'll see about tapering off. I won't have to start taking antivirals or antibiotics since the drug will only be maintained at homeopathic levels in my system. I will be more susceptible to illness, so I'll take precautions.

I also saw the dermatologist who specializes in skin GvHD. She took one look at me and said, "We don't need to do any biopsies, I can see the remnants of the rashes." Hooray for that. She wants me to use steroid cream in place of the tacrolimus ointment, but I do have the option to use the one that I find works best. Dr. H. also took a look at a mole that appeared on the top of my right foot after the first transplant. Apparently, it happens. She wasn't worried about it three years ago. It's a little bigger these days and since my dad struggled with skin cancer, I wanted to be safe. She still thinks it's benign, but she had pictures taken for my file.

As for the numbers, here you go:

WBC: 7.8 K/UL (4.0-11.0 K/UL)

RBC: 3.99 M/UL (4.00-5.50 M/UL)

HGB: 12.5 G/DL (12.0-16.0 G/DL)

PLT: 282 K/UL (140-440 K/UL)

ANC: 5.28 K/UL (1.70-7.30 K/UL)

ALC: 1.11 K/UL (1.00-4.80 K/UL)

AMC: 1.22 K/UL (0.08-0.70 K/UL) This reading accounts for the fever over the weekend.

LDH: 612 IU/L (313-618 IU/L)

Alkaline Phosphatase: 183 IU/L (38-126 IU/L)

Alanine Aminotransferase: 153 IU/L (7-56 IU/L)

As you can see, my liver is still not behaving. It is what it is and we'll deal with one thing at a time. My thyroid levels are now normal thanks to the Synthroid prescription. I can feel a difference and I'm all the happier for it.

I need to see my local doctor in two weeks to have my Prograf levels tested. July means another trip to MDA to check my progress with graft versus host disease. Until then, it's business as usual around here.


twentysomethinggirl said...

Wish I could send you something for the itching. Might I also suggest gelato as a cool antidote to inflamed tissues? :-)

Susan C said...

I've been on the ice cream diet too. McDonald's has their soft-serve cone on sale for 69 cents, so I treat myself every time I drive by the Golden Arches. Between that and a big, daily bowl of Thrifty's cherry ice cream, you'd think I'd be able to put on some weight.

Nancy said...

Your counts are stellar. How do you do that? I must know your secret!!! I hope the liver starts to behave and your itchy skin becomes less of an issue.

Susan got me wanting to try Thrify's cherry ice cream. If I buy a half gallon I'd have to diet for a week to counteract the calories. It might just be worth it!!! : )

Susan and Ann, take care and take it easy!!! Wish you both could catch a break from your health issues!!!!

love ya both. n

Ann said...

Kacie, yes to gelato! :)

Susan and Nancy, Now I want Thrift's cherry ice cream! I am feeling the pinch--literally, from too much ice cream. My chubby jeans are fitting a little too well.

Ronni Gordon said...

Glad things are better. Love your descriptions: gremlins rubbing the tender tissues with sandpaper. All this stuff is so up-and-down! Hey on the ice cream diet too. I need to tone it down. I've been getting too many vanilla hot fudge sundaes with walnuts and whipped cream.

Ashley McCall said...

I just want to say I have been following your blog from the beginning and you are a down right miracle! You are such a positive, STRONG person and you inspire me! Words can't describe..REALLY! I pray and thank God for your healing and for your sweet husband Chris :) Just wanted you to know that a whole lot of people you don't even know are being impacted by you and your life. Your smile is a ray of sunshine..KEEP SMILING Ann!

With love and prayers always coming your way,