Steve has been home for two weeks now. His need for constant blood and/or platelet transfusions has gone down. He hasn't taken platelets since September 30. His hemoglobin has been pretty steady, and he took a bag of red cells on Sunday at Christ Hospital. Dr. Altman has raised the bar up to 8.0 and Steve was at 7.9, so they play a cautious hand and keep his level constant. White cells are bouncing around, we are told this is normal, but it does concern me. His WBCs yesterday were 1.3, with absolute neutrophils at 0.8. No fever, great blood pressure.
He was bloated and miserable during his last stay in the hospital from excess IV fluids. Since returning home he has lost 20+ pounds of water weight. His weight is now around 165, down from 220. He is 6'3." A lot of weight started coming off before his diagnosis, which we saw with our eyes over a long period of time. Steve looked ill before April 30, and we wonder at times just how close he cut it by putting off medical attention.
I've been asked to define what "normal" lab levels are, so here you go, according to the ranges that Northwestern uses. Hemoglobin should be higher for men than women.
White Blood Count (3.5-10.5) On April 30, Steve's were 108.0
Hemoglobin (13.0-17.5)
Platelets (140-390) Remember 5?
Post-transplant patients have a tendency to run low in potassium and magnesium, so we are dosing him heavily with those pills and an occasional IV "mag rider." The journey to recovery is most often discussed in terms of 100 days from transplant. We guess we should count from the reinfusion on September 15, so Christmas Eve is Steve's 100th day.
I've also been asked why I don't blog that he is "better." I think most people think of better as fine, or well, or healed. He's not. And I won't. You can read the black and white print and interpret that he is improving. Telling you he's better means that the little help and support we get from others will totally go away. If my problem is gone, so is yours!! He looks like holy hell, my kids are all stressed out, and I am spending my days applying for aid and doling out pills. Better? Surviving.
Hey Mrs. Reppen, its Mark. We met briefly when Molly moved in to school this year. I want you know that even when Mr. Reppen starts improving more and more, there will still be people out there that will be supportive of you and your family. I read the blog all the time, and I'm always around when Molly needs someone. My dad is an ELCA Pastor, and he prays for your family, I know, and I've asked for prayers in church, and I pray all the time. I can't imagine how hard it is, but I'm just letting you know to keep faith, because there will be people around that will support you, no matter what.
ReplyDeleteThank you for your kind words and for your help in August. We could all use a lesson with the bike rack, that's for sure! I appreciate all the prayers and good thoughts from people we've never even met.
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ReplyDeleteGlad to "hear" (read??) you let off some steam. I was starting to think you really are wonder woman. You need to do that more.
You all are in our prayers, and I wish I knew some way to help...but...so, I REALLY do mean it when I say, send up a flare (or message) if there is any way I can help. It's hard to offer a specific, not knowing what you really need.
It is great that Steve is feeling better, and his numbers are up (or down) where they should be. People do need to realize that this not the flu. I know someone who I just found out "HAD" breast cancer, but got the lump removed last month, and seriously says it's over now. Maybe you can give the people who think Steve is "better" her name and number (just sayin...) I just don't get it.
Prayers & juju is in full effect here & has been. I was getting worried about you since it's been almost a week. Always glad to hear any updates & the improvements are evident! Thanks for posting the normal levels, I was wondering about that. Keep your chin up & please feel free to have a bad day & take it out on us... You're more than entitled.
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