Saturday, February 28, 2009
We had asked for one to be delivered yesterday but it takes some time for certain things in the hospital. (We also asked for a walker, but the charge nurse said that getting one from physical therapy is like getting the broomstick from the Wicked Witch of the West!) Before Janelle got here, the nurse started encouraging Krista to push her physical abilities, which was a bit confusing given the OT and PT's encouragement to make progress in "baby steps". We got her up to sitting position and checked to see how she was doing. She seemed OK, so we helped her up. She took a few steps toward the commode and slowly turned and sat down on it.
Nothing was happening at first, so the nurse stepped out to give her some privacy. I sat down next to her in case anything went wrong. She started having some diarrhea, which was somewhat expected. As she sat and did her business, she very slowly began to lean forward. I asked her if there was anything wrong, but she didn't respond; she just continued slowly leaning forward, and started having labored breathing. I reached out to support her and found that her whole body was completely leaning into me. Her eyes were open, but she was completely unresponsive, and the gasping breath was getting worse. Keeping one hand on her to prop her up, I reached over to push the call button, and began to pray over her having no idea what was going on. By the time the nurse showed up, Krista began to regain control and breathing.
Krista later said that after the diarrhea she felt weak like she was going to sleep but couldn't say anything. She fainted or, in medical terms, had a syncoptic episode. Her body has become accustomed to the horizontal position in bed, and the vertical sitting position accompanied by the strain of the diarrhea produced a temporary excessive drop in blood pressure. The nurses were really glad that I was there to catch her. With her platelets being so low, a fall can be very dangerous. Since she didn't fall, there shouldn't be any lasting effects from the fainting. Thank you God for orchestrating another close rescue! We are certainly going to be more careful now, giving her more time to adjust to different physical positions.
Fortunately, there were no activities scheduled for the rest of the day. We had a nice visit from the Norby family. Ursula and their kids had been in Germany over the holidays taking care of her father, who had Alzheimer's for over 10 years and passed away while they were there, and helping her mother with the many arrangements necessary after her loss. The children had done well seeing their grandfather in a deteriorated condition, so they felt comfortable allowing them to visit with Krista. Krista had her first good look at herself since the ICU incident today and was surprised how "bad" she looked. We all encouraged her that she had made incredible progress. I think that Tobias and Gracielle's pleasant interactions with her may have helped her to not be as sad about her appearance.
Krista was pretty weak all day. Her blood pressure has been higher than normal so they are starting her on blood pressure lowering medicine. She also started saying that her mouth and throat pain is extending down into her mid-chest and that she is feeling like her throat inside is swelling, making it more difficult to swallow. She drank Cinch shakes, juice, and chicken broth again today, but began having feelings of nausea later on. Poor Janelle had to help Krista through a really difficult vomiting incident while I had stepped out to get some dinner. Krista's been resting since then, though the general pains are still quite high. Her platelets were quite low tonight, so she got a transfusion from an A-positive "compatible" patient-directed donation. Just a reminder to all of you who are continuing to donate blood and platelets: your ongoing donations are still making a huge difference -- thank you!
What a privilege it is to be able to participate with God in preserving the life of one of His loved ones.
[God speaking] "Listen to me, O house of Jacob,
all you who remain of the house of Israel,
you whom I have upheld since you were conceived,
and have carried since your birth.
Even to your old age and gray hairs
I am He, I am He who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you."
Friday, February 27, 2009
Krista has continued doing her bed exercises, and was doing well enough with them that she felt like she should be able to start using a bedside commode. We decided to test out getting up onto a regular chair first. She did a great job of sitting up in the bed on her own, and it took some time to adjust to the sitting position before she was ready to stand. With a lot of struggle (assisted by me and the nurse) she made it up to a standing position. The level of effort surprised her. We sat her down after a bit, and then repeated the process to give her some practice. Twice was enough -- she was wiped out and ready for a nap.
It was good thing that she napped, because when she woke up the occupational therapist, the physical therapist, and our friend Linda all showed up at the same time. The OT and PT were excited that Krista had made so much progress, and wanted to see her do it again. This time they had her try to get up with a walker on her own. She was weakened from the earlier attempt and needed some assistance to get up. Once she was up with the walker, the PT had her take a few steps forward and a few steps back and then repeat it. We were all so glad to see her being able to do all that!
Krista went up to the dialysis room for over three hours this evening and had about 2 liters of fluid taken off. It had been about three days since the last one, so even that is a bit of an improvement. Longer breaks between dialysis give the kidneys more opportunity to get stronger. Janelle stayed with Krista while I stepped out to get some dinner and took a walk to the grocery store. Thanks Janelle for the continued support!
It was a very tiring day again, but the progress has lifted our spirits and made it seem more possible to be released sometime soon.
Hope deferred makes the heart sick,
but a longing fulfilled is a tree of life.
Thursday, February 26, 2009
My mother and father drove up from Carlsbad to help me out with my growing laundry pile. We found a nearby laundromat, and they spent the afternoon getting my clothes clean. There was some time on either side of the hard work for them to visit with Janelle, who was helping out around here again, and we enjoyed hearing them exchange stories.
Things began to get a little crazy when the occupational therapist showed up at almost the same time as a bone-marrow transplant survivor and his friend from Santa Barbara. We had been expecting the OT and knew that it was difficult to get into her schedule. But when Krista heard the visitors were Christians who came to encourage her, it became a Mary-versus-Martha moment for her, and she chose to go with Mary and fellowship together at the feet of Jesus, trusting against all odds that God would work out the schedule for the OT. The visitors were John and Philip. We had never met either of them, but John is from our home church and he and Philip are friends, being in the same line of work. John had a sister go through a battle with leukemia. When he heard about Krista, and recognized that he had a matching blood type, he decided to drive down to donate platelets and asked Philip to come along to encourage Krista. Philip had ALL leukemia and was given a bone marrow transplant at UCLA in 1989. One of the nurses here recognized him immediately and they embraced like long lost friends. Philip and Krista really had a connection as they shared the experience of similar suffering, and we all went to the Lord in prayer together. It was really a divine appointment, in more ways than one; but I'll get to that later.
After they left, we got another surprise visitor. Erica Valladares was a friend of ours from when we lived in Torrance. We haven't seen her or her husband since 1996, but she happened to be at the hospital and dropped by to see Krista and drop off a care package. We learned that her 4-year-old daughter Lexi has been suffering with daily seizures most of her life and that they have been making trips to the UCLA Children's Hospital for treatments. She said that she related to me spending long nights sleeping on uncomfortable hospital chairs. So far they haven't been able to identify the reason for the seizures and none of the medications can stop or prevent them from happening. In October, Erica met a visiting geneticist who recognized some of her daughters behaviors, and she has been trying to look into possible genetic causes. There's a long difficult road ahead for them, but I could see that Jesus has shown Himself faithful in her life and that He will help them through it all.
After Erica left, the cardio-chair arrived. The cardio-chair is a bed on rollers that converts into a chair to help patients get used to a more up-right position. As she sat in it, her feet swelled rather badly -- but a pair of theraputic stockings helped that out.
We were just getting ready to roll Krista around the transplant wing when a new doctor showed up. He was dressed in a suit-and-tie (not the typical lab-coat) and carried an old-fashioned leather bag, like you would expect from doctors in the days when they made house visits. His name is Dr. Gale, and he was casually introduced as an "expert on transplants". (After the fact, I discovered he is not only a major contributor to the field, but also something of a rock-star in the medical world with influence in the movie industry.) He interviewed Krista very carefully in fine detail, and extraordinary bedside manner, and later revealed that her oncologist, Dr. Schiller, who is the well-published director of leukemia studies at UCLA, had asked Dr. Gale for his opinion on what happened with Krista's liver failure. It is amazing to have my wife be treated by such titans of the leukemia field -- and yet there are still mysteries that make even them ponder!
As Dr. Gale was leaving, he mentioned that someone had told him a former patient of his was in the building and that he was hoping to meet up with him. That patient happened to be Philip. What an amazingly divine orchestration that was!
God wasn't done making things happen, either, because just after Dr. Gale left, the occupational therapist showed up! Occupational therapy differs from physical therapy in that it is task-oriented. Since Krista was still in the cardio-chair, the OT couldn't do a lot with her but spent her time trying figuring out what capabilities Krista had, like being able to brush her teeth, and gave her some exercises to do until next time.
After that we finally got to do a quick roll in the cardio-chair around the stem-cell transplant wing. All the nurses were so pleased to see Krista out of her room. They were all congregated together in a nurse station, and as we passed they joked about Krista being on safari watching the nursing staff in their natural habitat. That was a good laugh to top off a very exciting day.
Aside from the excitement of the day, Krista's condition hasn't changed all that much. Her white blood count is 1.21 with 400 neturophils, and she needed 2 pints each of platelets and whole blood. Dialysis was put off again today to let the kidneys do more work, but it is very likely that she will need to be dialysized tomorrow. Krista's appetite was not good today, as she felt that she hadn't completely digested the food she ate yesterday. She hasn't had a bowel movement in three days, so it may be that her intestines are taking a rest. Speaking of rest... we're pretty tired now and we'll leave off with this thought:
Find rest, O my soul, in God alone;
my hope comes from him.
He alone is my rock and my salvation;
he is my fortress, I will not be shaken.
My salvation and my honor depend on God;
he is my mighty rock, my refuge.
Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.
Wednesday, February 25, 2009
Krista's appetite has been good again, and she's had an Ensure for each meal. There's something of a pattern that she's established to make it possible: clear the palette with baking soda mouthwash, rinse with water, numb the mouth with "magic mix", drink and repeat. Between each step within the pattern there's a massive struggle to get mucus out, but by the end of it the Ensure is gone. The seemingly simple task of drinking an 8 ounce shake becomes an exhausting ordeal, each and every time.
The added nutrition hasn't yet shown up in her lab results. The white blood hasn't changed; it's still 1.1 with 400 neutrophils. Her platelets continue to resist their efforts to increase them, continuing the regular roller-coaster due to daily fevers, especially at night. She was supposed to get dialysis today, but the doctors opted instead to try to work the kidneys with the Lasix instead. She was also supposed to get physical therapy and a cardio-chair today, but neither ever showed. Krista still did her leg exercises and hopefully when the therapist and chair do arrive she'll be a little stronger.
This seemingly endless phase will eventually pass. We are trusting God to provide us with all the endurance we need to get through it.
For everything that was written in the past was written to teach us, so that through endurance and the encouragement of the Scriptures we might have hope. May the God who gives endurance and encouragement give you a spirit of unity among yourselves as you follow Christ Jesus, so that with one heart and mouth you may glorify the God and Father of our Lord Jesus Christ.
Tuesday, February 24, 2009
The oncologist said that Krista was getting really malnourished and that it was important for her to get some food into her. Her white count was down slightly today (to 1.1 with 400 neutrophils) and it may be having a hard time increasing without proper nutrition. On the other hand, the oncologist told us that the neutrophil count is near enough to 500 that she could be a candidate for leaving the hospital if she were more self-sustaining.
Leaving the hospital doesn't mean going home. They transition patients to a nearby hotel for a couple of weeks to a month to be close enough to get daily checkups and get emergency care if needed. The problem is that insurance has declined me twice for coverage there. I'm going to try one last appeal with a doctor's letter, so please pray that it will work out. The insurance company is being hard-nosed because my policy only covers lodging if the distance is over 100 miles from home, and UCLA is 95 miles from ours. Ugh.
There are three big things that need to happen for Krista to leave: 1) eating regularly, 2) being able to walk, and 3) reducing the need for dialysis. I think having a tangible goal helped Krista immensely today, because it led us to a more focused prayer after which she fought through the pain and managed to down one-and-three-quarters Ensures over the course of the day! (An incredible feat since yesterday she was barely able to swallow spoonfuls of the stuff.)
Her red blood count was down today, so they gave her two pints of O-negative which were marked "patient directed." That means that one of you kind people out there donated it for her, and Krista was wondering who out there has O-negative blood. You can send me an email to firstname.lastname@example.org and let me know who is. Karen and Marc Amling have been donating platelets and found out that their platelets were marked as "compatible" with Krista. She was happy to hear about that, since she is getting "patient directed" platelets twice a day to get her levels up to 50,000. They were at 28,000 earlier, and she had another transfusion this evening.
Our friend Regina in Santa Barbara has a friend, Rhonda Gordon, who lives in Los Angeles. We had not met her before, but she surprised Krista and Janelle with a visit today bringing cards from Santa Barbara friends and some food for me. I was sorry to have missed her (I was out getting lunch) but it sounded like they had a very nice visit together. We keep hearing how encouraged people are with Krista's progress. May today's baby steps encourage your faith even further.
Two are better than one,
because they have a good return for their work:
If one falls down,
his friend can help him up.
But pity the man who falls
and has no one to help him up!
Also, if two lie down together, they will keep warm.
But how can one keep warm alone?
Though one may be overpowered,
two can defend themselves.
A cord of three strands is not quickly broken.
Monday, February 23, 2009
The lab results were a bit strange today. Her bilirubin and ammonia had been going down, but now they are both up. There is some natural fluctuation and that may be what they measured. The ammonia at least is still within the normal range. It is still a bit confusing to see the bilirubin value going up.
Her kidney numbers were higher today, and that was somewhat to be expected. Even though her urine output has been good, it hasn't kept up completely and she has had some swelling in her feet and ankles recently. They had scheduled her for the single-pass dialysis machine today, and took 2 liters of fluid off in addition to filtering out excess toxins. They are starting her on a new medicine tonight that should help flush out toxins, which I think they are hoping will help both the liver and kidneys.
So we keep on waiting, and while we wait we try to remember God's faithfulness. One recent incident is a good illustration. Krista was completely unable to swallow a half-Tylenol pill no matter how hard she tried. It was very frustrating. We stopped trying and prayed together, and then tried again. This time Krista discovered that putting the pill at the very back of her tongue made it possible to swallow with some struggle. Now she is able to take small pills regularly, following the technique that God showed her immediately after praying. Isn't God good?
But you, O Lord, are a compassionate and gracious God,
slow to anger, abounding in love and faithfulness.
Turn to me and have mercy on me;
grant Your strength to Your servant
and save the son of Your maidservant.
Give me a sign of Your goodness,
that my enemies may see it and be put to shame,
for You, O LORD, have helped me and comforted me.
Sunday, February 22, 2009
With all the good news, it's getting more difficult for Krista to feel her progress and she's been having bouts of anxiety over the seemingly never ending pain. She managed to eat a few bites of cream of wheat, though her swallowing wasn't all that successful and much of it stayed in her mouth. Grape juice went down relatively quickly, but the stinging afterward was so bad she shied away from it the rest of the day. Chicken broth generated a large amount of mucous and the attempt to cough it up just wears her out.
Labs continue to improve slightly on both liver and kidney arenas. Her white blood count is up to .99 today, but the netrophil count is the same as yesterday at 300. The ICU doctor told me yesterday that she was no longer "severely neutropenic", but I think that he was overly optimistic about it. She'll be "severe" until it reaches 500. And, she's unlikely to get any help with her mouth pain until that count rises beyond that.
Krista's "period" bleeding began again this morning, even though her count was at 20,000. I asked the oncologist about this and he thinks that this is not a true period but is a transitional bleeding that can happen with chemo-/radiation-induced infertility. The treatment for this is either birth control pills (which they have been giving her since she started the "period" last week) or estrogen treatments to help build up tissue. Those are decisions to discuss with her gynecologist later, and the main treatment right now seems to be to try to stop the bleeding by getting and keeping her platelets over 50,000. Her platelet count continues going up and down, but for weeks it hasn't gone up much more than the mid-20,000s. It's hard to believe that they could get it that high any time soon, but there are 8 donors that have been flagged as a good match at the UCLA blood bank so maybe if they get aggressive it could happen. I'm sure that number is a huge reflection of the number of people who have been coming to donate for Krista. Thank you all again!
Even though we can't see it coming, we are still clinging on to God to bring some relief. What seems impossible to us is full of possibility to Him.
For nothing is impossible with God.
Saturday, February 21, 2009
There was a room available in the transplant wing, so we packed up and were ready to go as soon as the transfer order went through. It took all day, but they eventually (after a last-minute attempt to hold her back because of her regular nightly fever) let us go. Thanks again to Janelle for being here today and helping out, even lugging our stuff around the hospital. The new room is smaller than 6125 was, but it has a nicer view. The mailing address is:
Krista English (Room #6127)
Ronald Reagan UCLA Medical Center
757 Westwood Plaza
Los Angeles, CA 90095
Another change taking place today is that our boys left the Steffen's family and moved in with the Austin's family for a little while. We had arranged this before we came down. Our original concern was that people would be needing a break, but I had no idea what a heartache it would be to make the change. Alyssa said that after the first two weeks they began to feel like family and it was going to be too quiet without them. Their family has been so incredible, it's impossible to thank them enough -- and the same goes for the Austins and the Martons too! The boys have been so happy, and it's an incredible relief to not have to worry about them while we're going through all this.
I mentioned earlier that Krista was doing really well aside from the mucositis. Her white blood count was 0.6 yesterday morning, then 0.8 last night, and 0.94 this morning. Her neutrophil count was high enough that they no longer consider her severly neutropenic. I don't think that changes the treatment any but it is a really big step towards recovery. They say that the increase in white blood should help with the mucositis as well.
Her urine output has stepped up quite a bit, but even with that they still needed to run the single-pass dialysis on her. It's no longer an issue of fluid retention; the dialysis is removing excess toxins the weak kidney hasn't been able to take out. All signs are that her kidneys are improving and dialysis should eventually not be needed.
The liver labs continue to be good, and she looks slightly less jaundiced than yesterday, especially in the skin.
The doctors keep reminding us that Krista's not out of the weeds just yet. But that day is coming, and being back in the transplant wing should begin a new phase of the healing and rebuilding process.
Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
Friday, February 20, 2009
Platelets were better this morning (22,000) than yesterday morning, but we're still seeing the same evening drop-off (8,000 tonight). She's getting a transfusion as I write this.
Aside from those problem areas, though, things are really picking up for Krista. Her liver function is improving. Her urine output is increasing. Her white blood count is up to 0.6 with 200 neutrophils. That means that the stem-cells have officially grafted! Her oncologist joked that she needs to leave the ICU, because that's where sick people belong. He has quite a sense of humor. But the reality is that they are working on getting her back upstairs to the transplant wing. The ICU team needs a little more convincing -- maybe the single-pass dialysis tomorrow will do it? (That was going to happen today, but the kidney specialist was pleased with her urine output and pushed it back to see what she could do unassisted.)
Praise God for the progress, and continue to pray for relief in her mouth and throat. And, even though there are no signs of it yet, start praying that she won't be affected by Graft-Versus-Host Disease. That's where the new immune system attacks parts of the body that it doesn't recognize as being on the same team. A little is OK, as it would clear out any leukemia that may have slipped past the radiation and chemotherapy and then fade away, but any more can cause anything from lifetime discomfort to serious danger. The doctors have taken every precaution to avoid this, but it doesn't hurt to pray!
Some people have asked me to clarify what blood donations are currently needed. Krista no longer needs blood plasma, since her liver is slowly producing clotting factor. She definitely needs platelets of any type -- European/German of any blood type donors are best, other racial backgrounds with negative blood types are next best, and the rest are a good fall-back. Occasionally, about once per week, she gets whole blood transfusions and you'll need to be O-negative to donate directly to her. Thank you so much to everyone who is willing to make that drive to UCLA (even if they aren't able to take your donation). I've know that there have been people who have learned that they were anemic because they got turned away. Hopefully, they will improve and be blessed because they wanted to be a blessing! That reminds me of our theme verse:
Blessed is he who has regard for the weak;
the LORD delivers him in times of trouble.
The LORD will protect him and preserve his life;
he will bless him in the land
and not surrender him to the desire of his foes.
The LORD will sustain him on his sickbed
and restore him from his bed of illness.
Thursday, February 19, 2009
Those who were at the Center (and those we are connected to on facebook) got a preview of today's good news. The doctors diconnected Krista from the constant dialysis machine and said that if she does well with a few hours on the single-pass dialysis machine tomorrow they will transfer her out of the ICU and back to the transplant ward! This is a huge step, though Krista has some apprehension over it. She will really miss the 24/7 attentiveness and security that the ICU provides.
Krista passed the swallowing test yesterday so she's allowed to eat pureed foods now. Cream of wheat was good this morning but, since her mouth sores have been worse, she found that apple sauce causes too much pain. She's still having abdominal pain, so we raised the tephlitis question again. So far, they seem to think that the pain is liver-related, not tephlitits.
On the liver side of things, her ammonia level is down within the normal range, so they have reduced the dreaded Lactulose syrup to 2 times per day (it was 4 times per day). Her bilirubin levels have plateaued over last few days, but they are still too high. As her liver heals, that value should come down naturally.
Her platelet situation was a little different today than it had been. The morning draw showed a borderline "dangerous" level (11,000), so they put in an order for HLA-matched platelets with the Red Cross this morning. They're supposed to be here around 8 p.m. tonight. She's having a fevery time right now, so the sooner the better.
Krista's been in bed for a long time now. They ordered physical therapy for her to help get her back on her feet. It sounds like the PTs are pretty booked though, and it may be a day or more to before they can get here.
Thank you all so much for your love, support, prayers and efforts. They make such a difference and onlookers and doctors are noticing the difference belief in a God who answers prayer makes.
[Jesus praying] "Righteous Father, though the world does not know You, I know You, and they know that You have sent Me. I have made You known to them, and will continue to make you known in order that the love You have for Me may be in them and that I myself may be in them."
Wednesday, February 18, 2009
Reducing liquids is important at this point because they would like to take her off the continuous dialysis machine and "graduate" her to a single-pass dialysis machine. That would allow her to be disconnect most of the time, and possibly to begin physical therapy to strengthen her up for discharge.
Her white blood count is up to 0.4. They are pretty sure that grafting has taken place, but they can't make it official until they are able to count the neutrophils in the white blood. The lab machines aren't able to make a good count of those until the total white blood count gets to around 0.5. At this rate, we should get to that tomorrow.
She seems to be in a pretty constant platelet pattern: in the morning they're "low" (26,000 today), and in the evening they're "dangerous" (7,000 right now -- platelet transfusion should be coming soon). I saw Marilyn Siebert and Catherine Marton briefly after they donated platelets (and brought me cookie bars), and I understand that there's another caravan coming down tomorrow. Thank you all for keeping that emergency supply available!
Krista's still taking Lactulose because her ammonia level came up a little this morning. Lactulose is an oral syrup, and she doesn't like taking it because it irritates her mouth sores. They keep saying that her liver is doing much better, but it may take some time to get everything back to normal.
My mother came up for the day to bring some laundry and to give me a break while she stayed with Krista. I managed to get a much needed nap and a shower and go to the nearby Whole Foods to pick up a big pizza, thanks to an incredible gift card from the Constantine, Parson, Detwiler, Newhart, and Johnson families. Thanks so much for the very thoughtful gift (of which there is plenty more left on it)! Glen and Janelle (Krista's mother) also made it to Malibu (coming from Denver) in their 34-foot RV and jeep out. It sounded like a treacherous drive down Las Virgenes, but they made it safely and even had time left over to make a quick visit to the hospital. They're planning on being here for a couple of weeks at least, so it will be good to see them more frequently. We are so grateful to friends and family who have been pouring out their love to us.
Dear friends, since God so loved us, we also ought to love one another. No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.
(1 John 4:11-12)
Tuesday, February 17, 2009
With the removal of the tubes, Krista can now talk in whispers and chew on ice chips. Her throat is a little raw from the tube and its removal. It will take a couple of days to have that heal up. The ice helps while she has it. She also got her request from the other day: apple juice mixed with cranberry juice frozen to a slushie. That was good a few times, but it ended up being a little too acidic so it's back to ice chips for now.
Her digestive system was still on stand-by from this morning's test, but her ammonia levels are low enough that they no longer need to give her Lactulose. Lab results also show that her liver is doing much better.
The kidney doctor came by and said that her kidney values are still too high and, unfortunately, dialysis makes the values seem better than they actually are. She is excreting urine, indicating the kidneys are still working, but the kidneys won't get fully exercised until they get her off dialysis. He said that they are waiting until the team reduces the total IV fluid intake to below 3 liters a day before she'll be off dialysis.
Platelets were at 26,000 this morning, but on-and-off fevers have the doctors concerned that the platelet levels may be affected. White blood count continues to climb slowly; it's at 0.29 today. The oncologist says it's definitely a sign of grafting!
You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
that my heart may sing to you and not be silent.
O LORD my God, I will give you thanks forever.
Monday, February 16, 2009
This afternoon Krista told me that she remembers coming to the ICU, but didn't know that she had been down here for over a week. She wanted to know what happened, so I filled her in on the simplified version of what she had been through. It must be a strange experience to not remember a week of your life. This blog will be helpful for her when she gets stronger to see the full story.
Linda Kitt and Ken Norby came down today to visit, and got to help try to decode what ended up being a request for apple juice mixed with a cranberry juice cocktail, frozen and broken into small ice chunks. (She couldn't have it yet, but it's a good sign that she's asking for stuff.) Linda gave Krista a nice foot massage while I got a shower, and Ken had a great idea of anointing her with oil and praying for her like James 5:14-15 says to. None of us had real oil, so we used a Vitamin A & D ointment instead, it being the oiliest compound around. The thick ointment made a nice cross on her forehead without dripping, too. Thanks Linda and Ken for coming all that way (and thanks to Ursula for the delicious salad Ken brought for me)!
Krista's platelets are at 10,000, and her white blood stayed at 0.2, so we can't call it grafting yet. She is continuing to get blood plasma transfusions -- 4 pints today -- trying to get the INR value down and the clotting factor back up. Her skin is still jaundiced, though less than it had been. The oncologist clarified for me something about the jaundice today. I remembered that jaundiced infants get put under special lights to break down the bilirubin, so I was wondering why that wasn't something they would do for Krista. He says that in infants, the liver isn't mature enough to break it down (so it has to be done with light through the skin) but once the liver matures it just doesn't stop. So in Krista's case, her liver will take care of the bilirubin in time.
Krista's stomach still has too much residual in it, so even though she's hungry, she's not digesting what she's got. Poor Krista can't even begin to try to eat until she gets the respirator tube out, anyway. That may happen soon, though, now that her mental condition is returning. Let's all pray that her digestive system starts up again soon.
Praise the LORD, O my soul;
all my inmost being, praise His holy name.
Praise the LORD, O my soul,
and forget not all His benefits-
who forgives all your sins
and heals all your diseases,
who redeems your life from the pit
and crowns you with love and compassion,
who satisfies your desires with good things
so that your youth is renewed like the eagle's.
The LORD works righteousness
and justice for all the oppressed.
He made known his ways to Moses,
His deeds to the people of Israel:
The LORD is compassionate and gracious,
slow to anger, abounding in love.
He will not always accuse,
nor will He harbor His anger forever;
He does not treat us as our sins deserve
or repay us according to our iniquities.
For as high as the heavens are above the earth,
so great is His love for those who fear Him;
as far as the east is from the west,
so far has He removed our transgressions from us.
As a father has compassion on his children,
so the LORD has compassion on those who fear Him;
Sunday, February 15, 2009
The oncologist was amazed this morning at Krista's mental progress. He said that it was good that I had such "positive energy" and "a calm disposition", and associated her progress with that. He said most husbands would have freaked out about all this. I can only attribute our strengths to God who has provided everything we need, especially hope, knowing that He is working in this for the good of those who love Him and are called according to His purposes (Romans 8:28).
Krista's lab results continue to improve, but the oncologist reminded us that she's not out of the weeds yet. He was particularly concerned about the INR value which, though slightly better, continues to be too high. He wants to get more aggressive with transfusing blood plasma, and said that it would be good to get people donating it. In particular, we are looking for people with AB type blood (that's a single type, not A or B). AB blood is not all that common, and is the only type that doesn't have antibodies. Krista's body has built up a reaction to many antibodies, so AB plasma should make a better match. Blood plasma donations are flash-frozen and can be stored for up to 10 years. The blood bank says that they have some AB plasma in stock, but if they are going to be aggressive with it they could use more. Donating blood plasma is done through apheresis just like donating platelets. If you are in Southern California and have AB type blood, please consider making an appointment with the UCLA Blood and Platelet Center to donate blood plasma for Krista. You can reach them at 310-206-6187. Make sure you ask about the criteria for donating; I think it's the same as for platelets, but I hate for people to drive out and get turned away for a technicality.
Oh, I can't believe I forgot to mention that her white blood count may finally be on the rise! It had fluctuated between 0.0 and 0.1 for weeks, but today it was at 0.2. If it continues to go up that will be an indicator that the stem-cells have grafted. The normal range is between 4.5 and 10.0, so she is still at risk of infection until it gets much higher. She had a small fever last night, and they took cultures and x-rays of her chest to check for any signs of infection. It takes time for those to come back, but praise God that the fever has come down in the meantime.
You are forgiving and good, O Lord,
abounding in love to all who call to you.
Saturday, February 14, 2009
Cory and Alyssa Steffen brought the whole bunch of English/Steffen kiddos down to UCLA today for a visit. Krista's condition is too intense for our boys to visit with her, so my mother stayed with her while the rest of us went down to the Santa Monica pier where they treated me to lunch and a good walk. The boys are doing great, and it was really good to see them. Krista's long-time friend Kelly from Virginia sent a "birthday" package (celebrating Krista's new immune system), and it had some really neat art supplies, airplane kits, Legos, and other fun things that became great Valentine's Day gifts for the boys. It also had some snacks, magazines, and a card that I read to her today. I added in a DVD copy of You've Got Mail, which was a favorite we used to have on VHS. She'll be sure to enjoy all this when she's doing better. Thanks everyone for making this a very special day. We are really blessed to have such loving friends and family!
Krista's condition, aside from the new movements, continues to improve slowly. I think they still aren't really sure if last nights "period" was or was not a period. To cover their bases, they've put her on birth control and gave her 3 pints of blood plasma to increase her clotting factor. They have been giving her HLA-matched platelets, even when not an emergency, hoping to get to a safer value. That doesn't seem to be working, as her platelets are still only at 21,000 tonight (150,000 would be normal, and over 60,000 would probably no longer be considered low), but at least she's not in the danger zone.
Her digestive system took a rest yesterday, but last night she began having bowel movements again, and there is little residual in her stomach after taking her Lactulose. The nurse suspects that they will begin the nutritional drip into her stomach again tomorrow to keep the intestines stimulated.
The liver enzymes and ammonia level continue to work their way down, and the bilirubin count seems to have plateaued at a high level that made her skin really yellow yesterday. Supposedly, the bilirubin count can continue to rise even while the other liver numbers decrease but eventually they will come down as well. If it has plateaued, then the decrease may be coming soon.
God is good, and we continue to wait on Him as He does His work in Krista.
But I will sing of Your strength,
in the morning I will sing of Your love;
for You are my fortress,
my refuge in times of trouble.
O my Strength, I sing praise to You;
you, O God, are my fortress, my loving God.
Friday, February 13, 2009
On that note, there was an encouraging story her oncologist told me today. Three rooms down from her in the ICU, one of his patients was discharged today after having gone through a similar ordeal. His mental facilities were fully restored, as is typical in cases like these. He said that it took a very long time to heal, so we just need to remain calm and patient.
I'm feeling much better about the situation since she's been sleeping; her outward appearance has become much more stable. It's difficult to be constantly on guard, and I feel better about taking breaks while she's like this. My mother came up today and I was able to get a long nap at our friend's house nearby. Gene and Jeannie have been so kind to make that available for me and my family -- and they even bought me a delicious Greek dinner to bring back with me.
There are still surprises that pop up with Krista's condition, but they are getting to be fewer and further between. One surprise happened as I was writing this: she began having a period. I call that a surprise because we had been told that she would be infertile as a result of all the radiation and chemo. Apparently, even if she is infertile she can still have periods, at least that is what the nurse tells me. The period must have come as something of a surprise to her as well, though. I think her reaction had to do with a concern over Krista's platelets being low; they are checking to make sure that this is in fact a period and not some kind of hemorrhaging. So far it doesn't look like hemorrhaging.
Earlier today, they decided to slow down the nutrition drip since there was residual in her stomach. She also hasn't had a bowel movement today, so the digestive tract seems to have taken a rest again. They're giving her a laxative to stimulate it. It's important for her digestive stystem to keep going so she can process the Lactulose and get rid of the ammonia in her body that is still too high.
As I mentioned, her platelet count is still low: 14,000 this morning. They found and gave her some HLA-matched platelets today which brought her up to 25,000, which is better but still low. They are going to give her some more HLA-matched platelets tonight because of the period.
The big picture of her condition isn't likely to improve drastically any time in the near future (unless God does something miraculous, which I would definitely let everyone know about ASAP). I just want to remind all of you that though she's not out of the weeds yet, she is making progress even though it is very slow. This is most likely the start of a very long waiting process, so hang in there with me and I'll continue to keep you updated. And I just realized that I haven't let people know where to send notes now that she's in the ICU. The address is:
Krista English (Room #4423)
Ronald Reagan UCLA Medical Center
757 Westwood Plaza
Los Angeles, CA 90095
Yet this I call to mind
and therefore I have hope:
Because of the LORD's great love we are not consumed,
for His compassions never fail.
They are new every morning;
great is Your faithfulness.
I say to myself, "The LORD is my portion;
therefore I will wait for Him."
The LORD is good to those whose hope is in Him,
to the one who seeks Him;
it is good to wait quietly
for the salvation of the LORD.
Thursday, February 12, 2009
Her digestive system is working well; the liquid nutrition they drip into her stomach is not there when they check later. The ammonia levels are declining as well, another indication that the Lactulose they feed her is being digested. The INR value has fluctuated some, but overall it is also down from yesterday. The liver is not functional yet, so they are watching her blood-sugar levels regularly and injecting insulin as needed.
They put her on a constant dialysis machine this morning that is supposed to be "more gentle". I think that means it's not getting out as much fluid per hour as the other machine, but they can run it all the time so it will get more out overall. While that is going on, her kidneys are also showing signs of slowly waking up. She had only excreted 10 cc's of urine all day yesterday, and today it's been 50 cc's already. It's still really small, but it's a start.
Krista continues on the platelet roller-coaster. At one point, I heard them mention they were at 41,000, but later it was 7,000. Her red blood count is up to 7.4 after 2 pints transfused yesterday (starting at 6.7), but they really prefer her to be over 9.0. They gave her another 2 pints of red blood and 1 pint of platelets today. Thank you to everyone who has or has tried to donate blood and/or platelets to the UCLA Blood and Platelet bank. We don't really know how much longer it will take for the stem-cell grafting to take place, and she is dependent on the blood bank until it does. They are very concerned about infections until then.
Even with the improving lab results, Krista's mental abilities have decreased to where she is completely non-responsive now, at least to verbal promptings. She still has reflex reactions to the neurological tests, though; she just can't make voluntary movements anymore. The liver specialist says that we should expect her cognitive abilities to take a week or more longer to recover after her liver gets to full swing.
Her body began shaking involuntarily early this morning. Even with the shaking, she still passed the reflex tests, though. The neurology team also ran an EEG test, looking for signs of seizures, and I just got word that the results were normal for liver toxicity -- i.e. no seizures. They ran a CT scan yesterday and didn't find anything wrong with her brain (they were looking for signs of bleeding or stroke).
Because of her decreased abilities, the doctors became very concerned about her ability to breathe properly. They installed a tube through her mouth into her lungs and connected her to some machines to help assist with that. They have her on a mild sedative to help with the breathing tube, and she has been resting quietly since then (without shaking anymore).
I can't really tell anymore if she is awake or not, but I talk to her from time-to-time anyway since I suspect that she can still hear me. We have received cards and letters which I read to her, along with Psalms that she had highlighted in her Bible. I'll leave off with one of them. (Ear piercing was a Hebrew custom of indicating voluntary servitude, unlike modern accessorizing. Also, when we see references to enemies in the Psalms, we translate them in our heads to: our enemy, the devil, and his minions.)
I waited patiently for the LORD;
He turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
He set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the LORD.
Blessed is the man
who makes the LORD his trust,
who does not look to the proud,
to those who turn aside to false gods.
Many, O LORD my God,
are the wonders You have done.
The things You planned for us
no one can recount to You;
were I to speak and tell of them,
they would be too many to declare.
Sacrifice and offering You did not desire,
but my ears You have pierced;
burnt offerings and sin offerings
You did not require.
Then I said, "Here I am, I have come—
it is written about me in the scroll.
I desire to do your will, O my God;
Your law is within my heart."
I proclaim righteousness in the great assembly;
I do not seal my lips,
as you know, O LORD.
I do not hide Your righteousness in my heart;
I speak of Your faithfulness and salvation.
I do not conceal Your love and Your truth
from the great assembly.
Do not withhold Your mercy from me, O LORD;
may Your love and Your truth always protect me.
For troubles without number surround me;
my sins have overtaken me, and I cannot see.
They are more than the hairs of my head,
and my heart fails within me.
Be pleased, O LORD, to save me;
O LORD, come quickly to help me.
May all who seek to take my life
be put to shame and confusion;
may all who desire my ruin
be turned back in disgrace.
May those who say to me, "Aha! Aha!"
be appalled at their own shame.
But may all who seek You
rejoice and be glad in You;
may those who love Your salvation always say,
"The LORD be exalted!"
Yet I am poor and needy;
may the Lord think of me.
You are my help and my deliverer;
O my God, do not delay.
Wednesday, February 11, 2009
One very good improvement yesterday is that she began having bowel movements last night. They had given her a laxative earlier in the day since it had been two days since her last one. With her liver not functioning properly, the digestive system stops getting natural stimulation. Since she responded to the laxative, it's a good sign that the intestines are continue to be operable. Since she hasn't eaten in a long time, they are also going to try giving her some liquid nutrition to see if she'll digest it now. If not, they will begin a nutrition drip. Adding nutrition may signal the body to release some of the fluid it's holding onto.
There is still no sign of urination so they stopped giving her Lasix (since it's no longer doing anything) in an attempt to minimize the medicines she's receiving. The kidney specialist had recommended taking a day off between dialysis, but it appears that the "team" has decided it's more valuable to get rid of the excess fluids, so the dialysis machine should be coming soon. I like this team... they keep making decisions that make sense to me, like making fluid extraction a priority. They also are continuing to give her Lactulose, which I learned has the double-benefit of "drawing out" ammonia (which could help her mental state) and drawing water into the bowels to stimulate defecation. There has been a problem digesting the Lactulose, so hopefully with the new intestinal motion she'll be able to uptake it today.
Platelets are at 40,000 today. Her red blood count is low, so she's getting 2 pints of whole blood transfused. I spoke with the oncologist yesterday about when to expect signs of the grafting (an increase in white blood counts), since today is the two week marker after the stem-cell transfusion, but he said that everyone is different and, since cord blood develops slower than adult stem-cells, it may be a while longer -- maybe a week more? They are really concerned about the possibility of infection until it picks up. I also asked if the liver/kidney problems were going to affect the grafting, but that is not expected (although it is something of an unknown).
Krista's mental acuity continues to decline. The doctors ordered a CT scan of her head later today, just to make sure that all this trauma hasn't done any permanent damage. She is uncomfortable and confused, and she completely removed the oral tube and tried to remove the bladder catheter yesterday. We've been trying to keep her calm and away from the tubes, but it just wasn't working. Though it breaks my heart, we had to restrain her hands to keep her from hurting herself. She really hates not being able to move her hands, and continues to hopelessly struggle against the restraints.
In between the bowel movements, the phlegm-suctioning, and Krista's panic over her imprisonment, I was kept up until midnight and awakened frequently throughout the night. I had the TV on and caught part of the Tonight Show with Jay Leno. He had on Bill Mahr, and as they talked I began to see a startling spiritual parallel with what is going on physically with Krista. Both of them are struggling against the very things that are the only chance for life that they have; Mr. Mahr against religion in general (and Christianity in particular), and Krista against her life support systems. I don't mean to pick on Mr. Mahr; his railing is just a very public expression of the sin nature that is in all of us. As the Scriptures say:
We all, like sheep, have gone astray, each of us has turned to his own way...
That's exactly what the sin nature is -- a tendency to choose our own way over God's. And, like Krista pulling tubes out, we are deceived into thinking that our way is going to be better, when it actually puts us into completely unrecognized danger:
For the wages of sin is death...
In Krista's case, the only solution for her is to yield to the restraints, whether they be vocal exhortations or physical bonds. The spiritual equivalent is yielding to God's Word:
...and the LORD has laid on Him [Jesus] the iniquity of us all.
...but the gift of God is eternal life in Christ Jesus our Lord.
[Jesus speaking] So be earnest, and repent. Here I am! I stand at the door and knock. If anyone hears my voice and opens the door, I will come in and eat with him, and he with me. To him who overcomes, I will give the right to sit with me on my throne, just as I overcame and sat down with my Father on his throne.
If any of this rings true with you, I would love to discuss it with you. I know that Krista would, too, if she were capable. We're both only overcoming all this because of the strength God gives us.
Tuesday, February 10, 2009
The liver "has a wide range of functions, a few of which are detoxification, protein synthesis, and production of biochemicals necessary for digestion." So right now toxins are building up in her system. Though I had previously believed that the confusion, vivid dreams, and hallucinations were from residual morphine in her system, these are actually a result of a buildup of toxins, especially ammonia.
The dialysis got 3 liters of fluid out last night, and 2 liters this afternoon. This is more than they are putting into her. Her arm still feels like it is very swollen, but not as bad as last night when it felt like a taught water-balloon. They are continuing to try to reduce the amount of fluids put in to try to reduce the amount stored in her body.
Her digestive system is not working well right now, though fluids continue to be secreted into it. They had a tube inserted into her mouth to suck the fluid out of her stomach yesterday, and today they pushed it further down into her small intestine. This is uncomfortable for her and, with her mental state, it is confusing when she wakes up. She will often get panicky and try to pull the tube out of her mouth.
All of this is really difficult to watch her go through, especially when I'm not getting very good (or very much) sleep. Fortunately, my mother was here today and I had the opportunity to take a much needed shower and nap at our friend's parent's beautiful house nearby. What a treat, and they are so kind to make that available to me when I need it.
Keep me safe, O God,
for in you I take refuge.
I said to the LORD, "You are my Lord;
apart from you I have no good thing."
Monday, February 9, 2009
My mother, Jan, came up from Carlsbad today to help Krista while I donated platelets this afternoon. There were a bunch of people who donated platelets in Krista's name, and one of them, with an A-negative blood type (not me!), was chosen for a transfusion tonight. Our Colorado friend Lisa Weaver has family one mile from the hospital, and Mom is staying there tonight so she can be here again tomorrow. Thank you all!
I met with two specialists today who have helped shed light on Krista's condition.
The liver specialist explained that Krista's condition is dangerous, but it's not as bad as she has seen and she thinks that there are some signs that the liver may be able to recover. The enzyme level is high, but it has plateaued. She also explained that there is another metric (which I don't remember the name of) that has dropped from 2.5 yesterday to 2.0 today, indicating that the liver may still be viable. The liver itself does not have any blockages, and the problem does not match characteristics of Graft-Versus-Host Disease. She surmises that Krista is experiencing a drug-induced hepatitis, and her eye coloring matches the expected yellowy/jaundiced appearance often seen with hepatitis. Some of her medicines had liver problems as possible side-effects. The liver specialist's opinion was that Krista should be flushed with liquids to excrete the toxic medicines, and then hopefully her liver will restart on its own.
The kidney specialist finally confirmed that her urine output has not been what it should be. In fact, her output today has been almost non-existent. Tonight they installed a temporary dialysis port to attempt to do the job of the kidneys. This should allow Krista to get some of the toxic medicines out of her body. They are supposed to run the dialysis for two hours tonight (no sign of them yet) and reevaluate tomorrow. She says it is possible that the kidney dysfunction is following the liver dysfunction, and that if the liver picks up the kidneys may as well. We will have to wait and see if it works.
I am still confident of this:
I will see the goodness of the LORD
in the land of the living.
Wait for the LORD;
be strong and take heart
and wait for the LORD.
The scans show that there is no blockage stopping the liver from functioning. The most likely cause of the failure is a rare side effect of one of the anti-fungal medicines she had been taking.
Because the liver is not doing its job, there are a couple of notable effects. Her body is not breaking down the morphine she has been receiving for pain, so in the midst of the storm, she is in a relatively happy place having vivid dreams that crossover into actual hallucinations. She is fairly lucid, and is aware of where and when she is, but there are frequent crossovers with non-reality as she talks with people who aren't here and gets concerned about things they are doing. Trevor don't eat that glass!
Another effect is that the kidneys are having a difficult time doing their job. This may be why she has not been able to flush the excess water out of her system. The doctors are considering putting her on a dialysis machine to help the kidneys along so they can try to flush the anti-fungal remnants out. This may help, but it is not a direct solution to the problem.
Liver failure is very serious. The liver is the one organ that the doctors do not have a machine to replace its function.
It is possible that the liver will spring back on its own, and right now that seems to be the only solution. Studies from alcoholics show that the liver can be very resilient, so there is some hope that it may happen. If it doesn't happen on its own, though, she will need a liver transplant or she will die. Her doctor said that it is up to God what happens. That is the most true statement I've heard in a long time.
My life is consumed by anguish
and my years by groaning;
my strength fails because of my affliction,
and my bones grow weak...
But I trust in you, O LORD;
I say, "You are my God."
My times are in your hands...
Let your face shine on your servant;
save me in your unfailing love.
Let me not be put to shame, O LORD,
for I have cried out to you...
How great is your goodness,
which you have stored up for those who fear you,
which you bestow in the sight of men
on those who take refuge in you.
Sunday, February 8, 2009
After a grueling day with three platelet transfusions yesterday, Krista's platelet count came out this morning at 31,000! That's a really good improvement. It's well outside of the danger zone, but it's still considered low; normal being 150,000. She would normally be allowed to get off of strict bed-rest but she's not able to stand on her own right now, so they're putting in a catheter to help bypass all the stress and difficulty of using a bed-pan.
It was very nice of Tom (Krista's father) and Martha came up from Arizona to visit with Krista. Krista was very weak and not able to talk much, but it was a good for them to be able to see her.
Krista continues to have troubled breathing, and her doctor called in some pulmonary experts to figure out what is going on. The consensus so far is that the majority of the problem is from excess water-retention due to a temporary weakening of her heart because of the chemotherapy. They are continuing to give her a diuretic to try to flush the excess out of her, but it's taking a long time. They've upped the dose to try to speed up the process. They are also decreasing the fluids going into her by IV. They also say that she had pneumonia but it is going away. Once the water-retention diminishes, she should be breathing easier.
Krista started having abdominal pains on her front-right side last night, and the blood draws today have had increasing liver enzymes in them. Her doctor said that this could be from two possible sources, and they have been running scan and other tests on her liver and intestines to figure out which is the source (or sources).
One source could be from Graft-Versus-Host Disease (GVHD) that can accompany a stem-cell transplant. Before the treatment, her doctor had told us that it's good to have a little GVHD because if there was any left-over leukemia in her system that the GVHD would wipe it out, and then fade away. On the other hand, they don't want her to get too much GVHD because it can lead to long-term, moderate-to-severe organ problems.
Another source of the abdominal pain/enzymes could be from a bacterial disease of the gut called Teflitis. Krista had a bad case of this the first time she was treated for leukemia. It was really painful then, and the pain has increased today to a 10 out of 10. Teflitis is treated with antibiotics and not eating, both of which she's already doing.
[Last minute update: The increasing liver enzymes may be an indication of liver failure caused by one of her transplant medicines. She is being taken to the Intensive Care Unit to be under close watch while they try to treat that.]
Therefore let everyone who is godly pray to You
while You may be found;
surely when the mighty waters rise,
they will not reach him.
You are my hiding place;
You will protect me from trouble
and surround me with songs of deliverance
Saturday, February 7, 2009
To him who is able to keep you from falling and to present you before his glorious presence without fault and with great joy— to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen.
Friday, February 6, 2009
There is a new, less dangerous, problem that was identified today. The pulmonary doctors examined Krista today and found some extra pressure on the right side of her heart. She also has been having strained breathing and looks excessively puffy. They believe that the three symptoms are a result of excessive water retention. She's getting a diuretic again to try to flush it out, and if they're right she should get some relief from that.
It has been a grueling day for both of us, and I think it's time to rest. It may be another long night of peeing if she needs more diuretic. Did I mention she's not allowed out of bed? Oh, but maybe they will now that she's over 10,000! That would be awesome.
Then they cried to the LORD in their trouble,
and he saved them from their distress.
He sent forth his word and healed them;
he rescued them from the grave.
Let them give thanks to the LORD for his unfailing love
and his wonderful deeds for men.
As I mentioned in the last post, there is no longer a requirement for Rh-Negative platelets -- she can take platelets from any blood type. Because of this, they have ordered some platelets from stock and she's receiving those right now. UCLA does not have the facilities for HLA-typing their platelets, so it is a bit of a gamble whether or not they will get a good match. She is so low at this point, though, that even a mis-match is worth a try. If the gamble pays off and her counts go up, they will contact the donor to try to arrange future donations.
HLA-matching tends to go along racial lines, so the best chances of finding a match come from people of European descent, German in particular.
The Red Cross maintains a world-wide database of HLA-typed platelet donations, and UCLA has been trying for days to get a good match. There are other factors in addition to the HLA-typing, something about antibodies, that need to be matched as well. The Red Cross also contacts past donors that match a need, but it doesn't always work out for the donor to make a new donation. Because of all this, the Red Cross has not been able to provide anything for Krista.
A lot of people have been asking how they can help. Here's three ways to help:
1. UCLA Blood And Platelet Bank can schedule an appointment next week for you to donate platelets, and they can be designated to go to Krista (there are no fees for patient designated donations at UCLA). This would be particularly helpful if you are of European/German descent. They have a limited number of machines, so they probably won't be able to schedule you until next week. The phone number there is 310-206-6187. Don't be surprised if you get an answering machine and have to leave a message.
2. Donate platelets through your local Red Cross-affiliated blood bank and have them do a HLA-typing for your donation. Doing so will get your HLA-profile into the database and increase the odds of finding a good match for Krista. It is not uncommon for them to charge a fee for designating donations for a particular person, but that probably isn't the best approach with the Red Cross anyway. If an undesignated donation doesn't go directly to Krista, it will still go to help someone in need.
3. Do some research and tell people about how they can donate platelets in your area or organize a donation-drive. Many, if not most, people have never heard of platelet donation. Apheresis (donating platelets) is not like donating whole blood, it's less physically taxing on the donor (you don't get dizzy) but it takes a lot longer -- on the scale of 2 hours. Platelets are essential for blood clotting. Platelet transfusions are routinely needed to support patients undergoing cancer therapy, open-heart surgery, organ transplantation, and for patients with bleeding disorders. Platelets have a very short shelf-life and must be transfused within five days of collection. This requires constant replenishment of the supplies. An individual can make up to 24 platelet donations per year. The more people they have donating the easier it is to find matches for people, like Krista, who have platelet rejection factors.
There is a real shortage of platelets in the area. If you or anyone you know with anyone in the Southern California area who might be willing to donate and meets the following criteria:
* Be at least 17 years old (there is no upper age limit)
* Weigh at least 110 lbs.
* Be in general good health
* Have not taken any aspirin or anti-inflammatory medications within 2 full days of donation
* If diabetic: No insulin (oral medications are acceptable)
* If asthmatic: No oral medications (Singulair is acceptable)
* Must be willing to allow approximately 2 hours for the entire donation process.
Please have them contact the UCLA Blood And Platelet Center at 310-206-6187 to make an Apheresis Donation as soon as possible.
We have been told that donations made there can be ear-marked for Krista at no cost. This is different than the blood bank in Santa Barbara, that charges $500 to do this. When you call, please ask about this to verify.
Our doctor just informed us that the previous information about the Rh-Negative blood-type require is NOT ACCURATE. This can be important, but only if the patient is to remain fertile. That is not an option with Krista. They do need to look for certain markers on the platelets, but those are unassociated with blood-type.
So ANYONE that meets the above requirements is eligible.
Thursday, February 5, 2009
In 1999, a baby boy was born in Australia. Like 9% of the population in Australia, his blood-type was O-negative. Being O-negative, he will be able to donate blood to anyone of any blood-type; he has "universal donor" blood. The odd thing about this blood type, though, is that if he is ever in need of a blood donation, it will have to come from another "universal donor". His body would consider all the other blood types enemy combatants, and do whatever it takes to get rid of the "problem".
While she was in the early phases of her pregnancy, the mother of that particular baby boy talked with her obstetrician about donating the cord blood from the leftover umbilical cord and placenta to the local cord blood bank. After the birth, that cord blood sat in a deep-freezer in Sydney for ten years before being put on an airplane and shipped half-way around the world to Los Angeles, ultimately finding its way into the bloodstream of Krista English, as a cure for her recurrent leukemia.
Krista, like 35.7% of the U.S. population had an A-positive blood-type. She could donate blood to any of the A- or O-types (A-positive, A-negative, O-positive, and O-negative), but she could only receive blood from A-positive or AB-positive donors. And that was who she was until the day that O-negative cord-blood came to town.
Once it moved in, everything started to change. But the strangest effect wasn't known until eight days later: Krista has changed blood-types, and now, like the 10 year old boy in Australia, she has developed a fortress against any other blood types than O-negative. And until her fledgling blood-factory is completed, there remains a big problem: she is now dependent on receiving blood and platelets that happens to be fairly rare. Only 6.6% of the U.S. population has O-negative blood.
The above story is true, and it has helped us understand why the past few days things have been extra difficult. Krista is low on platelets and there's a shortage of compatible donations. The blood bank has had some delays in getting the best (HLA-matched) platelets for her... maybe they'll come tomorrow? As a fall-back, they can give her platelets from a donor with negative-typed blood (preferably O-negative), but there aren't any negative-typed donations available. If they have to, as a last resort, they could give her positive-typed platelets, but the benefit would be minimal at best, as her body no longer welcomes that kind as her own.
Blood banks are always in need of blood and platelet donations. Whatever your blood type, please consider making regular blood and platelet donations. These things really save lives.
And if you happen to be a negative blood type, especially O-negative, and are near UCLA, please contact the UCLA Blood & Platelet Center:
* Phone: 310-825-0888 ext. 2
* Email: email@example.com
The negative-typed platelet supply is empty here. Krista could use your help, and there may be others that could benefit from your donation as well.
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.
Do not be wise in your own eyes;
fear the LORD and shun evil.
This will bring health to your body
and nourishment to your bones.
Honor the LORD with your wealth,
with the firstfruits of all your crops;
then your barns will be filled to overflowing,
and your vats will brim over with new wine.