It's Saturday, I think... Things are moving slowly in Maddy's treatment. They are doing two days of plasma pheresis with a dose of chemo after the second treatment then a day of rest. Yesterday was the second dose so today is a rest day. Maddy said she things yesterday's dose of chemo was bigger than the first one. She is feeling nauseous today and she didn't feel that way the day after the first dose. Yesterday she was really worn out even before pheresis and chemo, she said she pretty much sleepy the day away, she even went right to sleep after getting her chemo treatment at 6PM. They also started her in a daily dose of Ableset, an inhaled anti-fungal to make sure she does not end up with yet another complication while being treated for the rejection. It's a very gross medication to inhale and takes about 45 minutes to administer. Yuck!
They also started her on a new oral supplement of Sodium Citrate and Citric Acid. Not sure what this is for, probably to replace something she is loosing during pheresis, because they said she the levels in one the many things they check every day were down. Then they started giving her this. (Sorry, normally I have better information but I have not been able to be here to chat with the doc for a while.) Anyway, as you can probably guess by the name it is very acidic and hurts Maddy's tummy when she drinks it.
No official word on if her antibodies are going down substantially or not. I am hoping we will have good news on that front tomorrow or early next week. I'm still just trying to take it one day at a time. Maddy is coping well, as usual, but overall just feels rotten. Of course she won't tell anyone that! If you ask her how she is doing her response is always just "fine". She says its just easier that way. Lol
As usual no news will be good news, I'm not going to update about the boring treatments every day. Thanks again for the prayers and we hope to be out of here one day.
Day 13, Sunday
The food is gross in the hospital. Add wicked tummy cramps to that and what do you get? Maddy spending yesterday not eating or drinking very much. As usual she spent most of the day suffering in silence, so I didn't know how bad she was hurting until 7PM. She mentioned a "tummy ache" to the nurse earlier in the day but it was underplayed so the nurse and I didn't even really think anything of it. Turns out it was a very bad tummy cramp that did not go away all day. We finally got her some pain and thay helped. She was able to eat some crackers. I had a suspicion the tummy pain was from the Sodium Citrate and Citric Acid. I looked it up on the Internet and the FDA website says to dilute it with water and take after eating. I guess the nurses don't read the recommendations because they were just popping the little thing open making her drink it straight and giving it to her when ever. I told her to not let them do that any more and make sure she eats something before drinking it. This morning Maddy had the nurse leave it and then she diluted it with water and took it after breakfast. No more tummy ache! I don't know why I have to always figure this stuff out. I guess it's fortunate that I'm good at problem solving.
So this morning Dr. Rolf said that we will get the results of Maddy's antibodie levels back sometime Monday afternoon. Then they will know how to modify her treatment plan. Hopefully they will be gone and we can end this madness but I don't know if they will just stop the treatment course even if her antibodies are gone. Today starts another cycle of pheresis followed by chemo. Maddy's Keaton levels were off in her blood work this morning. I'm pretty sure it's because she is dehydrated from yesterday. They want to make sure her kidneys are protected so they are going to hold back on one of the immune suppressing meds she takes, prograf, and give her some IV fluids before starting pheresis today. I told her she has to make sure she stays hydrated even if she gets a tummy ache because she can't afford to have her kidneys fail at this point! I'm sure this IV fluid will help and she will be back to normal levels tomorrow.
That's it for the weekend update. You all keep cool out there now!
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