I am completely at a loss as to what to say tonight, so forgive me if I ramble.
Krista's "disconnected" feeling is a symptom of neuropathy. That is a fancy way of saying that the chemo zapped her nerves. It's really common and she's had it before, but not this bad. Knowing that it is neuropathy has helped her some, mainly because we know how to manage it a little better rather than just giving into it.
The office visit today was frustrating. Krista, being less connected to what her body is actually doing, thought that she was having more blood clots when we got there. Bleeding means an automatic platelet transfusion, so they ordered some before they got the labs back. But when she went to the bathroom, she found out that there were no blood clots and no bleeding. The blood bank had no patient-directed platelets available so they delivered random platelets; and just before they started the transfusion, we got the labs back. Krista was at 20,000. So we racked our brains for a long time trying to decide whether it was worth getting the random platelets and possibly dropping her levels further and thereby needing another matched transfusion tomorrow, or just coming in tomorrow and getting a matched transfusion. We decided to wait for matched platelets -- so there's another late office visit scheduled for tomorrow.
Another frustrating aspect of the visit was the discussion we had about the random platelets. Yesterday we got patient-directed ones that worked great, but today there were none. The blood bank said that there were some units at the bank that expired last night at midnight! Ugh. They recommend trying to stagger out the donations into smaller groups, more frequently. I wish I had known that earlier, since Dave Bramson brought a car-full of people from Calvary Chapel Santa Barbara down to donate today -- I think there were 8 in all. I guess not all of them were able to donate platelets (some gave red blood instead) so it worked out well anyway. God knows how to organize it better than I do anyway. I wanted to connect up with them but the schedule just didn't permit me to get away. Thanks guys for showing God's love in such a tangible way!
Oh, there was another a silver lining in the cloud, too. While we were in the office, the hospital chaplain came by. Krista was feeling so frustrated with her body, and kept saying that she felt like an old woman -- not being able to walk, having aches all over, etc. The chaplain listened really well, and encouraged Krista not to think of herself as an old woman, breaking down, but as a baby, growing into something new and unfamiliar. Krista says, "Now I know why babies cry all the time!"
After the office visit we returned to our room (Ty, the shuttle driver, was an excellent driver and I didn't get in trouble today!) to meet the "home care" nurse, Janice. She was really good and thorough, having worked with the City Of Hope's transplant wing as a nurse. She asked Krista all sorts of detailed questions about her treatment and helped us sort through a number of things we didn't really know how to formulate questions about for the doctors. Krista's blood pressure was high so she couldn't run the IVIG very fast, and it took way longer than it would have otherwise -- she was here almost until 10 pm! She had to stop the drip because Krista developed small tremors from a new anti-nausea medicine we got at the doctors today. That got resolved before she left, and our doctor worked it out with her to come back at 7 am tomorrow to finish the IVIG. I've got to get to bed!
BTW, I spoke with my mother earlier in the day, and dad's surgery took 4 hours and was a success. He's recovering in the hospital overnight and then will return home tomorrow.
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.
(Psalm 27:13-14)
1 comment:
Hi Krista and Mike,
I was taken by this blog because I could relate to your experience.
When my husband had has transplant, he also said he felt like an 85 year old man.--And from my perspective he did too: His body felt old. I remember when I held his hand how old his bones, tendons and muscles felt. He walked like an old man too. I didn't expect this and thought this was how he was going to be from now on. --But guess what; I was wrong. It took over a year but the body regenerates and now my husbands physical body seems just like the young 46 year that he was. I am amazed at how the body can heal!
Just as a baby takes a year to learn to walk and run. It takes an adult that long after a transplant to get back their previous condition.
May you be blessed with much Patience,Hope, Fortitude.
Love Cherie
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