Some Relief

It was IVIG day once again. Krista's blood pressure was low enough today to not need to take her extra blood pressure reducers. Lower blood pressure is consistent with adrenal insufficiency. About an hour into the IVIG transfusion, Krista began to feel extremely weak and light-headed. We were getting nervous about it when we realized that last week she did the same thing in reaction to the benedryl. Once she sleeps off the initial reaction, things seem to go better with her.

I called in to the Santa Barbara oncologist's office to find out the results of the labs that the home-care nurse took before starting the transfusion. The assistant said that everything was good and proceeded to fax me a copy of the labs. We always like to look the labs over to have a feel for where she's at, and this time I saw that her red blood was 8.4. At UCLA, anything below 9.0 requires a blood transfusion, so I called the local office back and asked why they said it was all good. It's just the different offices have different standards, but the local doctor is OK playing by UCLA's rules if that's how we want it. Krista has been borderline for a couple of weeks now, so I think it's about time to bump it up. We are scheduled for an early morning transfusion tomorrow.

The sores in Krista's mouth got really painful today. We wrote an email to the UCLA oncologist yesterday with a question about it, and he got back today saying that he thought the sores might be a virus instead of mucositis. When Krista heard that, she remembered that she had sores like this during chemo the first time and that they had given her Valtrex which helped it. We emailed UCLA that information and ended up getting a prescription phoned into our local pharmacy. The medicine seems to be working, as Krista first felt the sores getting better and then began to have more energy in the evening.

To the LORD I cry aloud,
and He answers me from His holy hill.
I lie down and sleep;
I wake again, because the LORD sustains me.
(Psalm 3:4-5)

Insufficient

We got off to a late start but thankfully traffic was clear and we made it down to our appointment at UCLA ten minutes early. This was our first visit with the endocrinologist, and we were very pleased to find that the doctor was extremely knowledgeable and had a good bedside manner. That always helps.

Still the news was not easy to take. It is likely that Krista has adrenal insufficiency. That means that her adrenal glands aren't doing their job. This could be a problem with her hypothalamus or pituitary gland not creating the proper chemical signals to make the adrenal glands do their thing (secondary adrenal insufficiency). It's more likely, however, to be primary adrenal insufficiency which means that the adrenals are receiving the signals but are not responding. The endocrinologist said the latter would be more consistent with the high potassium and low sodium levels. (They usually see both low with secondary adrenal insufficiency.) The doctor gave her an ACTH stimulation test to make the diagnosis certain. The test is done by first testing her baseline blood levels, then injecting her with something that stimulates the adrenal-signal generation, and then testing her blood levels at 30 and 60 minutes after the injection. If the signals never get generated, that will show up on the tests. If the signals are generated but the adrenals don't respond, that will show up differently on the test. We have a follow-up appointment on Friday when the results should be available.

If the doctor's suspicions are correct, Krista's adrenal glands may have become over-stressed as a result of her previous liver-failure. The adrenal glands sit on top of the kidneys, and her kidneys were previously shut down as a result of the liver-failure. It's not too hard to imagine that the adrenals would be affected as well. If the adrenals are no longer functional, Krista will probably need to take a small dose of Medrol to replace the cortisone the adrenals produce, and Fludrocortisone to keep a balance between her sodium and potassium levels. She would need to take these two for the rest of her life. We have some concerns about long-term use of steroids, though. Krista had taken prednisone to reduce inflammation due to a lupus flare-up. It worked for a while, but after a couple of weeks the prednisone actually started causing inflammation. The doctor said that the doses are very gentle and only meant to replenish the natural levels of the missing hormones; other side-effects should be minimal.

As I mentioned earlier, the news of this was very difficult for Krista. She broke down in tears on hearing that her adrenals might be broken permanently. It helped to know that the medicines can manage the effects. But there was more to be upset about tonight... the mucositis that came back a couple of days ago seems to be spreading. There's a new sore right in the middle of her throat where she swallows. Aside from making eating difficult, it's also causing her to eat less. She's already been losing weight (also consistent with adrenal insufficiency) though she had been eating all the time because the Medrol makes her feel starving. This is all just the craziest set of contradictions, and it's very discouraging to Krista who has been trying so hard to do things right.

Out of the depths I cry to you, O LORD;
O Lord, hear my voice.
Let your ears be attentive
to my cry for mercy.
If you, O LORD, kept a record of sins,
O Lord, who could stand?
But with you there is forgiveness;
therefore you are feared.
I wait for the LORD, my soul waits,
and in his word I put my hope.
My soul waits for the Lord
more than watchmen wait for the morning,
more than watchmen wait for the morning.
O Israel, put your hope in the LORD,
for with the LORD is unfailing love
and with him is full redemption.
He himself will redeem Israel
from all their sins.
(Psalm 130)

Quick Update

Kayexolate has helped Krista's weakness, at least temporarily. She was up and walking around this morning. She even got in and out of the bath by herself again, though she noticed this time that if she didn't do it exactly right getting out was impossible.

Ricky's sermon this morning was on handling the pressures of life -- a very relevant topic to me. It was funny because I had just blogged yesterday about how I felt like I was going to need help -- and one of the points in the message is that sometimes you just have to ask for help. So that's what I did today. I know that feeding my family is going to be one of the more difficult items for me to manage, and many people have expressed interest in bringing us meals. Cheryl Giordani had organized meals for us while Krista was in the first time, and she had said to let her know when we were ready to start up again. So today I let her know that I was ready after my sister leaves on Friday. She sent me a message earlier tonight saying that nearly 20 people are already signed up! That is just so amazing. I don't want to publish her phone number or email here, but if you're local and interested in helping out let me know and I'll forward you the contact info.

We go to UCLA bright and early tomorrow, so I'm going to cut this short. Please pray that the endocrinologist will have wisdom and insight into this strange elevated potassium problem.

[Solomon writing] My son, if you accept my words
and store up my commands within you,
turning your ear to wisdom
and applying your heart to understanding,
and if you call out for insight
and cry aloud for understanding,
and if you look for it as for silver
and search for it as for hidden treasure,
then you will understand the fear of the LORD
and find the knowledge of God.
For the LORD gives wisdom,
and from his mouth come knowledge and understanding.
(Proverbs 2:1-6)

Weakness

Last night was the start of a rough day for Krista. There was the same old problems, but compounded with a new level of weakness because of the elevated potassium. As the weakness increased, it became difficult for her to get around, even feeling faint on occasion. We didn't have anything to help deal with the potassium because the UCLA oncologist wanted the endocrinologist to deal with it -- and we won't see him until Monday. With the danger of a potential potassium increase sending her to the emergency room again, I thought that I ought to call her local oncologist to see if we could get a prescription for Kayexalate. He thought that was a good idea, too. It took some doing to find a pharmacy that carried it, but we did find one eventually. The dose is quite a bit lower than the one she had in the emergency room so, though it is helping, it is likely to take some time to get her strength back.

Another unfortunate part of the day was that Krista's mucusitis seems to be returning. There are two sores in the roof of her mouth that have blistered up. She has not kept up as well as she should have on her mouth care because the baking soda mix builds up a salty layer that gets to be unbearable. We changed over to a plain saltwater rinse that Krista tolerates much better.

It is so nice to have Becky here with all this going on. She's been working hard cooking, cleaning, shopping, taking the kids for walks. It's been freeing me up to focus on helping Krista along. I can see that it's going to be really difficult to juggle things if they continue to be rough on her.

To you I call, O LORD my Rock;
do not turn a deaf ear to me.
For if you remain silent,
I will be like those who have gone down to the pit.
Hear my cry for mercy
as I call to you for help,
as I lift up my hands
toward your Most Holy Place.
(Psalm 28:1-2)

Comfort

We woke up early this morning to get ready for our weekly follow-up appointment at UCLA. Krista took a bath hoping there would be progress. When she was ready to get out of the tub, she asked God to give her a new trick to make it easier than last time. I was in the other room at the time, but she said that she rolled over on one knee and one foot, and found that it was real easy to get up with the help of the bar. When she told me about it, I was amazed because I forgot to tell her about an email from her friend Loa who suggested what sounded to me like the same maneuver!

We drove down to UCLA, and though the trip was long the traffic was surprisingly good. There, her lab results confirmed Krista's stability in her blood levels: platelets 44,000, red 9.3, white 15.3. Everything was high enough so it wasn't necessary to get a transfusion. Her white count is actually way higher than the normal range, but the reading is due to the steroid she's taking not because of an infection. The oncologist reduced her steroid dose in half to help with this and to see if the GVHD rash comes back or not.

The potassium that we thought was under control, turned out not to be. It was up to 5.8, which is higher than the normal range but not yet dangerous. It's frustrating because she's been trying hard to minimize her potassium intake. Her oncologist is confused by this problem because this kind of thing just doesn't happen with his patients. Usually, he says, the kidneys get leaky and flush potassium. Since this is beyond him, he scheduled an appointment with an endocrinologist at UCLA on Monday. He suspects that there is a problem with Krista's adrenal glands not generating aldosterone. While we wait for the answers, Krista has to continue to eat foods low in potassium. This has been a really difficult thing for her. Food has been one of the few earthly comforts left to her, and it feels like that joy has been taken away.

While we were at UCLA waiting for the doctor, Krista saw an older woman holding a young baby. They started talking and the woman said it was her daughter's baby and that her daughter had leukemia just like Krista. Janette, her daughter, recently had a baby and then 4 months later was diagnosed with leukemia. Janette came out later and Krista was glad to get to meet her. She's in the early phases of the stem-cell transplant process, looking for a matching donor. We'll be praying for you, Janette, to find a good donor match quickly and that the transplant goes well.

But the eyes of the LORD are on those who fear him,
on those whose hope is in his unfailing love,
to deliver them from death
and keep them alive in famine.
We wait in hope for the LORD;
he is our help and our shield.
In him our hearts rejoice,
for we trust in his holy name.
May your unfailing love rest upon us, O LORD,
even as we put our hope in you.
(Psalm 33:18-22)

Mobile Phone

Krista had her IVIG treatment this morning, though we weren't sure if she was going to be able to get it. IVIG tends to raise your blood pressure, and Krista's was really high last night and even this morning. I had held off giving her the "breakfast" medicines since she was supposed to get lab-work done at home, but when Holly (the new home-care nurse) saw how high it was she asked me to give her the old blood pressure reducer without the rest of the "breakfast" doses. That worked really well, and the IVIG went in as scheduled. (I had given her the new blood pressure reducer earlier, but it hardly did anything.)

We've been taking extra pains to keep Krista on the low-potassium diet, but it is really strange which foods are high-potassium and which foods are low-potassium. Milk and cheese are high, but butter is low. Citrus fruits are high, but berries are low. Cooked spinach is high, raw spinach is medium, and cooked collard greens are low. All this has made feeding her quite a bit more difficult, but it seems to have paid off -- Krista's labs show that her potassium level is unchanged since leaving the hospital with a normal reading. She's still low on sodium, though, despite eating pretzels and trying to salt everything else well.

Her red blood level read 9.0 today. I asked Carol, the UCLA transplant coordinator, about that. In the hospital this week her count was 10.7, and last week it was 9.7. Carol said that the high reading could have been a false high caused by dehydration, though no one had mentioned anything to us about her being dehydrated while she was in the hospital. I suspect that it was a glitch of some kind. Since the policy is that anything below 9.0 requires a whole blood transfusion, it's likely that she'll get one tomorrow when we go to UCLA for our Friday appointment.

On the other hand, it is unlikely that she will need a platelet transfusion because her platelets were still stable at 34,000! We also heard from Carol that Terry, our friend from Paso Robles who is a fellow stem-cell transplant patient, has been stable in his blood levels and hasn't needed a transfusion. Way to go Terry!

Oh, and here's a followup to yesterday's cell-phone saga. Earlier in the day, before Holly came, I got a call from Krista's cell-phone again. I thought it was really early for the guy to be calling. Maybe something went wrong with our pick up plan? It wasn't the guy I talked to the other day, though; it was his father, who does construction work and has been working a job in Monticito. He brought the phone with him and told me how I could pick it up. I had to go out anyway to deliver Krista's blood samples to the lab. It turns out that the son wasn't even the one who had found the phone -- it was his mother who works at Mission Laundry. He could easily have asked for a reward for finding it, but he didn't. I offered to give the guy some money for his trouble, but he refused it. All I could do was thank him. It is amazing how God is showing such mercy to us through people -- even people who have no connection to us!

But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved. And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace, expressed in his kindness to us in Christ Jesus. For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God— not by works, so that no one can boast. For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.
(Ephesians 2:4-10)

Wonderful

I forgot to mention some wonderful things that people have done for us. When we got home from the hospital yesterday, we found a beautiful bouquet of flowers delivered to our house. The flowers were from my workplace, congratulating Krista on completing a major milestone in her recovery. They were so beautiful, that Krista insisted that I take a picture to remember them forever.

Also, while we were away getting the stem-cell transplant, our neighbor, Ray, had mowed our lawn for us. He didn't just stop there -- he mowed it again this weekend while we were home. How incredibly nice!

And today, people are continuing to show us kindness -- even people who don't know us. When Krista transferred from the emergency room to 6 Central, she accidentally left her cell phone on the gurney. We tried to find it everywhere in the hospital before we left, but no one had seen it and there wasn't audible anywhere by calling it either. We left without it, hoping that it would show up in hospital security over the next few days. This morning when I was talking with my mother on my cell phone, I got a call-waiting call from Krista's cell phone. Someone from Mission Laundry had found it and was calling to return it. We agreed to meet in front of Sears at a certain time. When I got there, I didn't see him anywhere. I called him, and he said he was at the entrance to Sears. I asked him which one, because the Sears at La Cumbre Plaza has an upper entrance and a lower entrance. He just said that he was at the entrance to Sears, looking out on Main Street. Main Street? That's in Santa Maria (over 50 miles away)! It wasn't really possible for him to get it back to me, so we arranged for me to pick it up tomorrow in Santa Maria. Unfortunately, I forgot that tomorrow is Krista's IVIG transfusion and after that she has an oncologist appointment.

Meanwhile, Krista had put a request out to the local homeschool group for a wheelchair, and Kathy Short said that she had one we could use. She brought it by today, and as she and her husband, Brad, were leaving, they offered to help out with any errands I might need to run. The only thing I could think of was the cell phone, so I asked if they happened to know anyone in Santa Maria. It turned out that they did know someone who regularly travels between Santa Maria and Santa Barbara and they're going to try to arrange for them to pick it up for us and delivered it down here.

In the midst of the excitement, I was also trying to find a way to reward the boys for their hard work they did this morning weeding our patio. I tried to call their friends that they had wanted to get together with, but no one was home. Becky wanted to take them to the zoo or to the beach, and I remembered that Adam had asked last week if we could go to the beach. Trevor didn't want to go to the beach, though, because he thought the water was too cold and there wasn't going to be anyone to play with. I had almost talked him into going anyway, when the phone rang. It was Alyssa Steffen, who was thinking about taking her kids to the park or the beach. She got the whole gang back together, and they all had a great time at Campus Point beach.

All these things make such a difference to me to be able to take care of Krista, and I don't know what I would do without all this support. The smallest things take such effort now. For example, she needed a bath today. The last time she took a bath, it was really an ordeal getting her out of the tub. So yesterday, I purchased a temporary railing and installed it today. As she was getting out of the tub, her feet were slipping and I realized that I forgot to put the mat down under her. Even after I got the mat, she could only get out of the tub using every ounce of strength in her. She says that it's amazing how much you use your calves getting out of a tub.

Things like that, as difficult as they are, show that she really is making progress: she ultimately got out of the tub by herself! She felt much better today, overall, even though her blood pressure is still too high (even with the additional blood pressure lowering medication). There was only one incident of bone pain and only one meal that she needed maalox afterward. The only other unusual item was that her appetite was insatiable tonight; the more she ate, the hungrier she got -- and not just any hunger, it was a false sense of starvation. And as strange as that was, it was still preferable to not being able to eat.

Shout with joy to God, all the earth!
Sing the glory of His name;
make His praise glorious!
Say to God, "How awesome are Your deeds!
So great is Your power
that Your enemies cringe before You.
All the earth bows down to You;
they sing praise to You,
they sing praise to Your name."
Come and see what God has done,
how awesome his works in man's behalf!
(Psalm 66:1-6)