Beth may get to come home Tuesday

Little by little, she’s getting through the multitude of complications she’s been dealing with. The BK virus, which was manifesting as a urinary tract infection, has pretty much cleared up. Her CMV virus numbers (the more serious of the two viral infections) came back negative on the last test. It had been off the upper end of the scale, in the millions. They’ll take another test on that tomorrow, and have the results Tuesday. If that’s negative, she should get to come home.

She’s still pretty beat up. The blood clot is still there, making her right arm to look like Popeye’s arm. She still has those signs of malnutrition, too – her taste buds seem to be fried, and she still gets a bit of nausea when she eats. In addition to the fluids they were forcing into her (for the urinary tract thing), the lack of protein in her diet made her swell up, basically, from the waist down, like the bellies on the kids in the World Vision commercials.

Now comes the healing process, we hope. Exercise should clear up the swelling. We’re planning to take her for walks. She’s asking me about food again. (Food that I cook is considerably better tasting than what she gets in the hospital. That’s the sort of thing that could get her eating properly again!)

All in all, if GVH doesn’t flare up, we should continue to be able to say she’s beat the leukemia. True, there are more Chimerism tests coming. But beating a disease like leukemia is very much a kind of miracle in our day. Now that this is behind us, she should gradually be able to heal from all of this.

My (lack of) online presence and how Beth is doing

A couple of people have mentioned to me now that they haven’t seen me online for a while, and they were wondering what was happening with Beth. I have to say, almost nothing was happening, except that she was getting a tiny bit better each day – imperceptibly, almost – and it almost seemed like there was no news to report each day. I guess healing is like that: nothing seems to be happening, and then one day you feel just a little bit better.

Things are improving with her, on most fronts, though slowly. Her BK virus (urinary tract infection) has finally settled down. For this one, there was no drug treatment, but it simply needed to be flushed out. Apparently it was, though it took three weeks-worth of major urinary-tract discomfort. The numbers on her CMV virus seem to be way down, too. (She had been receiving Ganciclovir for this. It was a real danger, and the numbers came in slowly, but they came down). The clot in her arm is still there, but it will likely take two or three months to go away. She is getting a drug treatment to make sure another one doesn’t form. (This is a tricky proposition, because her platelets are low as it is, and the drug that prevents clots is a blood thinner. So she has received some platelets, in addition to the drug treatment). However, the swelling is noticeably down in her arm and her legs, though it is still troublesome.

On top of all these things, the doctors have started her on a physical therapy (PT) regimen, which has her walking, exercising, and gently massaging her arm to try and further relieve the swelling. The walking, they are sure, will help the fluids in her legs to be further reduced. She still isn’t eating right (a factor which contributed to the swelling), but there is another story behind that.

The chemotherapy did a number on her taste buds. So food always still tastes bad. In an attempt to try to get her to eat some protein, I bought her a Quarter Pounder with Cheese. She said she was genuinely hungry for this. So I brought her one, and she ate a few bites. She couldn’t eat more than that, so I ate the rest. After I left the hospital that night, she threw up and started having bad cramps. So now they are checking to see that the GVHD hasn’t moved into her gastrointestinal (GI) tract. (GVHD affects you in three specific areas: skin, GI tract, and liver). My thought is that it was just the Quarter Pounder after her not having eaten anything solid for a while. But they want to be sure.

* * *

Yesterday I made chicken soup (Dad’s famous chicken soup – one of the few things I make that everyone in the house loves). I took a thermos-full of hot fresh soup down to Beth in the hospital, and she absolutely loved it. So I froze a bunch of it in small containers, and I’ll take more down to her later today.

I’ve continued to make almost daily trips to the hospital through these last three weeks while she’s been in, though I haven’t taken time off work as I did for the transplant. This seemed less serious, although, at times, it wasn’t. The viral infections could have been life-threatening complications.

Things are busy at work. And to spin the old saying, “when your wife is on her deathbed, nobody wishes they’d spent more time at the office”. But as bad as she felt, she wasn’t on her deathbed; and we still have to pay the bills. We’re continuing to get a tremendous amount of help from our church (which we don’t want to have to rely on), and some financial donations are coming in. But life will go on, and do not want to continue to be dependent on that kind of help. We need also to focus on being financially responsible in the months and years ahead (whatever happens). So in addition to working, and even working at home (I’m working with a “cloud-based” “marketing automation” program called Eloqua; it’s got quite a lot of capabilities, and in part I’m learning them, in part I’m using them, and in part I’m playing administrator), I’ve been doing quite a bit of running between places.

In addition to that, though, I’ve spent a lot of time in the last month collecting information and submitting it to both Social Security and the VA – Beth will qualify for Social Security disability (I believe); we are less hopeful that the military will consider her illness to be “service related” (although I suppose it is possible, and we intend to keep pressing this issue).

It’s Saturday; since Beth is not tied to the toilet, I can take the kids down to the hospital, and we can all sit and visit in the waiting area, without having to worry about sneaking Dani in. Hopefully, we’ll be there with soup.

A lot of little things; not really anything serious

I had a chance to talk at length with one of the “practice” doctors (in Dr Rossetti’s practice) about all of this stuff that’s going wrong with Beth. The symptoms she is experiencing are loosely related (because they are typical for some transplant patients). But even when you add them all up, they’re not too serious. She is experiencing some pain, but a we’re just seeing a bunch of loosely related nasty things.

Here’s a breakdown of some of the symptoms and what’s causing them (as best as I can tell):

BK Virus: I had thought this was going to be the biggest threat, but the doctor said it’s not. It’s definitely the most annoying and painful, and there is a chance for it to head up to the kidneys and cause some damage there, but it is minimal. This is what causes the frequent and painful urination. They’re continuing to give a lot of IV fluids to flush the virus out. Her urination is still painful, but an ultrasound just revealed that her bladder is emptying – urine is not backing up, which is good.
CMV Virus: This is the more serious of the two viruses; it is being treated with Ganciclovir, and the numbers appear to be going down.
The swollen legs: This is partly from the fluids, but partly because she isn’t eating enough protein. It’s the same kind of effect that we used to see in the big bellies of the starving kids in the World Vision commercials, except that it’s happening in her legs and feet.
MRSA: This is probably the least of her problems. She has some degree of ability to fight infections, and it doesn’t really come up as a problem.
The clot in the arm: There are two places where a clot could form: at the end, which is more serious (because the end reaches into the large artery that enters the heart), or somewhere nearer where the catheter enters the vein (the plastic is causing irritation). It is also incredibly swelled and very painful. They are giving her a mild treatment to dissolve the clot.

That’s a summary of what she’s facing. It’s all very painful and annoying, but no real danger to her health at this point.

Beth’s treatment

She has two viral infections, BK virus and CMV virus. She’s getting the following treatment:

Reduce immune-suppression (anti-rejection) medications to allow her own (donor-created) immunities to attack the virus. This will give her more graft-vs-host symptoms.
Anti-viral medications (including Gancyclovir).
“Aggressive” IV fluids to flush her bladder and urethra. This has caused a lot of swelling in her feet and ankles.
Lasix to make her pee it out.
Morphine for the pain when she pees.

Yesterday, she seemed to have passed a lot of water, and her urine was yellow instead of orange. I take this as a sign that she’s improving.

We’re going to have to sit on pins and needles for a bit

bkking2a — Not a typical urinary tract infection

This is serious enough to be concerned about it. I mentioned that Beth has tested positive for two viral infections. I’ve got an inquiry into the doctor, but it seems to me that, while they are treating these things aggressively, they can become serious enough to cause serious worry.

BK Virus: “BKV is a particular problem. BKV is a human polyoma virus that is ubiquitous in the environment and infects children at an early age. Although the most effective treatment has not been established, there has been some success with antiviral agents such as cidofovir and vidarabine. Preventive methods include mesna (2-mercaptopurine sodium sulfonate) combined with forced diuresis and continuous bladder irrigation.” An earlier journal says: “Mesna and forced diuresis are equally effective in abrogating the urothelial toxicity of preparative regimens for BMT. Since HC after BMT is virtually always associated with persistent BK viruria, strategies aimed at the prevention or elimination of viruria in BK seropositive recipients are warranted.”

CMV Virus: “As a consequence, T-cell chimerism after BMT should give a positive prognosis with respect to control of CMV.”

She seems to be covered with respect to the T-cell chimerism; as for BK, she’s got the urinary tract infection symptoms, and also, orange urine. They are giving her lots of IV fluids. On top of this, she’s got the old MRSA infection (at least it’s present enough for them to bring out the yellow gowns), and so it seems as if we’re going to have to sit on pins and needles for a bit.

Back in the hospital

Beth has something like a urinary tract infection going on. The urinary tract thing has been driving her crazy for days. She’s tested positive for both the BK virus and also the CMV virus. My understanding is that both of these are very common, and wouldn’t be a problem for folks who have normal immune systems. But it’s also common for folks who have had transplants (and the related immunosupression) to have to fight off these viruses.

So she’s back in the hospital, and they’re treating this with “aggressive IV fluids”. She’s already had an ultrasound on her kidneys, and everything there appears to be fine.