Back in Hershey

We've settled back in Hershey for the week and had an appointment with Dr. Claxton yesterday. Jeff's blood work showed that his white count is up to 2.9, but his differential wasn't back by the time we left, so I'll guess we'll find out today whether or not he is making good cells. His platelets are still very low, but they're going to try and get the Ommaya in later this week with the help of some transfused platelets.

In addition to all of that news yesterday, it turns out that Jeff's kidneys are failing again, so most of his meds have been discontinued. They'll follow his creatinine levels closely this week to make sure that everything starts working properly. In the mean time, Jeff is still feeling a little weird and worn down. His taste buds have been rejecting everything but fruit and other sweet things, so he's not been eating much.

I can tell you that this has been one long, never-ending road, with way too many bumps, and smooth sailing is not expected anytime soon. I would like to think that I'll come out of this a better person, but in reality, there are certain hardships in life that don't really make you better, stronger or happier in the long run. This is one of them. You can only dance in the rain so long before your feet and hands start to prune, your body starts to shiver and you need to find shelter from the storm.

Just So You Know

Nobody is panicking over the money stuff. Aside from a minor meltdown by me, because this is just one more thing to stress about, we are all okay. At this point, I'm going to assume that the doctors and other people whose job it is to deal with such nonsense, will come to a resolution with Jeff's insurance company. We were originally told that the contract Health America has with Jeff's employer states that mini-transplants are covered, so I can't see how that would have changed right in the middle of Jeff's treatment plan.

Discharged

Jeff was discharged today, and we're home for the weekend. More fun in Hershey to come on Monday. Jeff is feeling okay, but is still on some IV antibiotics that we have to administer through his central line for a couple more weeks.

To add insult to injury, Jeff's insurance company has announced that they aren't going to pay for his transplant. This news came the day after we found out that Dr. Claxton had chosen a donor. Really, this makes no sense. They allowed the hospital to go through the steps of searching for a suitable donor, and only then denied the treatment. I'm not really sure where that leaves us, but I do know that no less than three people, including Dr. Claxton, spent all day on the phone trying to sort this mess out. It's no wonder that health care in this country is so ridiculously expensive. Insurance companies get to dictate who gets what, and doctors spend half their time fighting with them about it.

In the mean time, the final medical evaluations of the donor get postponed until the finances can be worked out, which results in everything getting pushed backed and decreases Jeff's overall chances of surviving this blasted mess.

I might have more to say about this later, but right now I'm exhausted and I'm going to bed.

Update

Jeff's headache is mostly gone, and generally he is feeling well. He has had a little bit of nausea, and he's a little groggy from the pain medication, but he was able to get up and shower today, which was a huge plus for those of us smelling him. Other than that, things were pretty uneventful today.

JD

Nicky sent me some pictures, and I especially loved this one. Thought you would enjoy. That's JD's cousin, Colby, in the background. (I haven't been to the hospital yet this morning, so I'll have to update on Jeff later.)

Staph Infection

Although Jeff does not have a fever, the cultures that they take from his line every morning started growing staph over the weekend, so they started him on another antibiotic. He can't be discharged until his line is clear, so we're here for at least a few more days.

Because the lumbar punctures that Jeff gets every week (for the chemo) have been quite painful, he requested that they use the x-ray machine for better aim. Well, turns out that it worked great. Jeff had no pain when the fellow doing the procedure put the needle in his back. The bad news came when the fellow realized that he never ordered the chemo, so Jeff had to wait with a needle in his back for an hour. Needless to say, my husband was VERY mad.

This morning, he has a pretty horrible headache, probably a result of yesterday's procedure. Hopefully, he gets some relief from the paid meds.

Maybe Tomorrow

If nothing changes, Jeff will be discharged tomorrow, after getting another shot of chemo to his central nervous system. We are again going to try and get 2 days off before having to come back here, which means that with any luck, we'll be home for a few days.

This week was not a fun one for Jeff. The infection caused his reflexive reaction time to slow, causing him to pass out in the bathroom. Luckily, his fall didn't cause any internal bleeding and he is fine, but having to have a cat scan of your head to make sure that you're not bleeding to death is a bit scary. (When you're low on platelets you can spontaneously bleed, so a fall is a huge deal. Jeff's platelets are around 15 right now - normal is 150 - 400.)

White count is 0.3 today...I'm hoping for a little bigger jump tomorrow, but I guess I need to get used to baby steps, as we're in this for the long haul.