Wednesday, January 5, 2011

Another month, another trip to Houston

To keep things interesting, I had an appointment with my transplant doctor this past Monday. I'm still on steroids, so Dr. K. is keeping a close eye on me. She commented on how my face looked less full. I countered her observation in the negative. Ten minutes into the visit, she began to agree with me.

She noted that my legs are slightly swollen, and my arms are a little more so. She was most concerned with the amount of fluid around my middle. I'm now officially 15 pounds up from my base weight. Dr. K. brought up lasix, which is a diuretic that I've received via IV infusion many times before. This time around, she offered me an oral course spanning 4 to 5 days. I had concerns about the extra work it would create for my kidneys and was told not to worry about it. I still declined. I'm uncomfortable with the extra fluid, but don't feel that the very temporary relief provided by the lasix would be worth taking yet another medication. Dr. K. offered to call the prescription in for me if or when I change my mind. If it gets any worse, I'll follow through.

Dr. K. also wants to recheck my thyroid levels next visit since my waist has become so thick in the last month. Okay.

As for my blood-work, I only have cell counts. The chemistry wasn't available due to the backlog of patients left over from the holiday weekend. Here's what I have:

WBC: 14.4 K/UL (4.0-11.0) Dr. K. suggested that my white count is high due to steroids. I saw my local oncologist 2 weeks ago and my white blood cell count was somewhere around 18 K/UL and Dr. B. speculated that steroids were also the culprit.

RBC: 3.56 M/UL (4.00-5.50) It's low and no one was bothered.

Hemoglobin: 12.0 (12.0-16.0)

Platelets: 259 K/UL (140-440)

ANC: 10.73 K/UL (1.70-7.30) This makes sense since my white blood cell count was high.

ALC: 1.83 K/UL (1.00-4.80)

AEC: 0.00 (0.04-0.40) I'm taking steroids, so the absence of eosinophils isn't a surprise. These are the little beasties responsible for inflammation and GvHD.

I didn't get a frantic call from my nurse later in the day, so I'm going to assume that my chemistry results were passable. I have to return in a month to get rechecked. I've also been given a pass on seeing my local oncologist this month for blood work. My veins are happy.

My steroid dosage has been cut in half. I'll take 8 mg every other day for a month. Dr. K. referred to it as a therapeutic dose. She also looked me in the eye and warned that I would begin to feel terrible and that I should be ready. I am. She assured me that the cushingoid aspect of my features should start to resolve at these lower levels. In layman's terms, she means that my puffiness should start to subside. I know it will, just not as quickly as she expects.

The fluid will come off in its own time. Of course, I'd like for it to dissipate sooner rather than later since it's severely affected my ability to fit into any bottoms I currently own. I can't keep spending my days in pajamas. It's starting to get scandalous and feeding into my reluctance to leave the house. Classes start in less than 2 weeks and I'd like to be able to sit down without the waistband of my pants rolling down from the downward pressure of my muffin top. I know the solution is to by bigger pants, but having just bought bigger tops, I'm reluctant. I'm just being stubborn.

In the mean time, I've been dealing with trying to get a contractor out to look at a leak that has developed around our chimney. The roof on our house was replaced the year that we bought it by the previous owner. From the placement of the water stains in my ceiling and what Chris observed in the attic, it's not the roof or the flashing around the chimney. I suspect it's the 12 year-old masonite siding on the chimney. You can see that it's suffering from age and neglect. It had to be repaired before we bought the house. I'm guessing that it wasn't done correctly.

I got our first estimate today and it took everything in me not to pull out my copy of RS Means and lay it down in front of the contractor to show him that I was familiar with what labor and materials cost. I can throw out estimates fairly accurately and the number I had in my head wasn't close to the quote. When I asked for a better break down, I heard the phrase, "at cost". Hardly.

Two more estimates tomorrow and a no-show today who may or may not try to reschedule. I'm still trying to decide whether or not to casually display some of my construction reference books in the hopes that should any of the other contractors care to treat me like I've never handled a piece of lumber before, they might reconsider.

We'll see.


LPC said...


Contractors are generally difficult. I hope everything else is good.

Ronni Gordon said...

Glad you're getting to lower the steroid dose. Hope isn't too hard on you.

lisa adams said...

Thanks for the update. Can you explain to me why she says you should be prepared to feel worse as the steroids are cut again? Does she mean your symptoms will resume or that the actual tapering of the steroids make you feel worse? I'm assuming the former, but want to make sure I understand.

It's always something, right? For now, at least you are whipping me at Words. :)

Ann said...


When you've been on steroids for a significant amount of time, your body starts to rely on them to perform certain functions. Most notably, your adrenal glands become lazy since steroids stimulate the production of adrenaline. As your dosage is tapered, your adrenal glands are forced to start working at normal levels, again, when they'd much rather continue their little vacation. Your blood chemistry gets thrown off and you feel tired and achey. You start to get muscle cramps in places that don't normally cramp and you can develop joint pain. There can be headaches and slight changes in vision. All of these symptoms are in addition to the muscle weakness and lack of sleep, etc.

Every person experiences it differently. The taper always makes me feel like a steaming road apple in danger of being run over by an eighteen-wheeler.

My transplant doctor doesn't seem overly concerned that there's going to be an immediate onset of GvHD of the lungs and liver again. My numbers continue to remain stable and I'm on inhaled steroids to keep my lungs in check. The GvHD of my skin, mouth, and eyes has picked up as the taper has continued, but these can be managed with topical steroids.

The oral steroids are used in combination with immunosuppressive drugs to blunt the transplanted immune system until it straightens out and stops attacking your organs. The best analogy I can think of is giving ritalin to a chronically hyperactive child.

As for Words with Friends, au've won the last string of games. I should pair you off against my friend, Nancy. She's really tough to beat, too. :)

Susan C said...

I'm glad to hear that those texts (and your knowledge) are coming in handy with the contractors. Hope you get a reasonable quote.

I just did a saliva test and learned that my adrenal glands have practically shut down. Didn't know about the prednisone connection.

Ann said...


Are you still taking steroids?

PJ said...

I don't blame you for declining the lasix. It's a temporary fix and not worth all the peeing. I've done 3 rounds and the water always comes back.

Nancy said...

My dear Ann,
I'm sorry for all you are going through. Your experiences are making me feel that mine were a walk in the park.

I had lasix and it relieved me so much. I had so much water weight that my lungs were getting wet. I was having difficulty taking a breathe and was suffocating. So, for me, lasix was a huge relief. I felt better right away. But, your experience is different. I understand that you don't want to take another medication, I still feel the same way.

Hang in there. If you are buzzing at 3 am, just play words with friends. I'll try to play a word as soon as I can!!! Take care & Happy New Year to you and Chris. Hope your house leak is not a big issue! love, n