Krista woke up pretty motivated today. Yesterday's events had her up and doing her stretches before Janice, her home care nurse, came over again this morning to administer another dose of IVIG. The IVIG is given once a week during the first 100 days post-transplant. We have really enjoyed getting to know Janice while we all wait 4-5 hours for the infusion to finish. It turns out that we have a lot in common, including interests in natural health products and homeschooling. We had scheduled the IVIG dose to be in the morning since her blood pressure is lowest at that time of the day, but today it was higher than usual because of the exercise. We'll know better next time not to do that.
Right after the dose completed, we headed out to catch the shuttle for a blood draw and transfusion. Something was wrong in shuttle-land, because it was taking a long time and there was no sign of the shuttle. I began to think that it might be faster walk to the hospital, even pushing Krista in the wheelchair. We ended up waiting more than a half-hour long for the shuttle to arrive, and when it did arrive it was almost packed full of people. The shuttle went a different route to the hospital and stopped every block to let off another rider. The ride itself took another half-hour to take us two blocks!
The labs showed that Krista's platelets (11,000) and red blood (8.2) were both low. They had HLA-matched platelets available as well as two pints of O-negative. While we waited for these to transfuse, three things happened:
1) Alyssa called us and let us know that Adam tested positive for strep. Poor guy! Apparently, Adam didn't think it hurt enough to be strep, because he said something about it not feeling like spikes in his throat. He's on an antibiotic now and he shouldn't be contagious anymore after tomorrow. Trevor and the other Steffen kids are going to be tested tomorrow.
2) I finally connected with the insurance company and discovered that our third and final attempt to get coverage for the hospitality house has been denied. I'm going to contact the transplant case manager tomorrow to see what options remain for us.
3) Dianne Bradley left a message at our hotel room. She knows Krista's father from Desert Springs Bible Church in Arizona and had stopped by to say "Hi" to Krista and to donate platelets at the blood bank. We're sorry we weren't here to greet her, but thanks for donating!
The transfusions take quite a long time. We were there at dinner-time, so I walked down to a nearby restaurant to get some dinner for the both of us. We ate and spent the rest of the evening in the transfusion chairs, and were actually the last ones out of the office at almost 8 pm. That pushed us past the last shuttle (at 7:30). We had the option of calling the after-hours transport or walking back. I opted for the later since it was such a nice warm evening out when I got dinner. We weren't the only ones out either: students coming back from campus, couples going to the theater, and people just going who knows where.
When we got back, Krista was pretty tired and got ready for bed. Soon after, she began itching all over. Dr. Schiller had always asked if her rash itched, since that is a common symptom of GVHD. I think we're going to call him tomorrow to see if that counts as getting worse. I remembered that he mentioned that the itching could be treated with hydrocortizone cream, so I walked over to the grocery store across the street to get some. There were still people walking around, so I take it that the Missing Persons were wrong: people do walk in LA -- at least in Westwood Village. At any rate, the cream may have helped. Krista fell asleep at least.
Teach us to number our days aright,
that we may gain a heart of wisdom.
Relent, O LORD! How long will it be?
Have compassion on your servants.
Satisfy us in the morning with your unfailing love,
that we may sing for joy and be glad all our days.
Make us glad for as many days as you have afflicted us,
for as many years as we have seen trouble.
(Psalm 90:12-15)
Hope Notes from Krista and Mike is a journal of encouragement as this Christian mom, and supportive husband and caregiver, face the ups and downs of a stem cell transplant after recurring leukemia. Start at the beginning by clicking September 2008 in the archives and reading forward. It's not always pretty, but it's real. We pray you will be blessed by these passages in some way.
1 comment:
HI Mike,
Have you tried to file a "grievance letter" with your insurance company?
After spending many many hours trying to get things covered through customer service, I finally filed several grievance letters(each pertaining to different issues ) and it made all the difference. You can write a letter explaining how it is not realistic to drive a fragile patient to LA every day and could actually cause damage her health.- I'm sure your insurance would not want to be responsible for that!
You will need to watch every bill. My insurance paperwork pertaining to Tom's transplant was 4 inches thick by several months after his transplant. There were lots of billing mistakes but by being tenacious I got it all fixed and saved $1000's of dollars. It pays to know your policy well.
Another thing you can do is to send a letter to your employer's health services dept. I actually got one unfair insurance policy changed by having my employer advocate for me. I came from the perspective of "this policy is unfair to all of our companies employees." Our employer had a meeting with the insurance company and the insurance company had to retroactively pay my bill.
On another note, Tom had Graft vs Host. He had rashes and had itchy episodes for over a year but now it has gone away. His doctor was slowly able to decrease his imuno-suppressive medications. He still takes a very low dose today.
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