“I know it’s Christmas Eve, but we need you to fly home. Now.”
“Your creatinine is still increasing. We are scheduling your catheter placement tomorrow.”
“Your creatinine is STILL increasing. You don’t have time to heal for 6 weeks before starting dialysis. Your starting two days after surgery. The only center that can train you is in Aurora. Be there by 8 am.”
“We need a kidney NOW. Dialysis is not working for Jamey. We don’t have months or even weeks. Please call now!!”
“His bp is 220/110? Go to the hospital right now!”
“His creatinine level is great! But his phosphorus is too low. Our next step is iv phosphorus and we need to do that today. Now, in fact. It will take about 5 hours.”
Sigh. When you are dealing with life and death you never get to say, “Yeah, right now isn’t a good time for me. How about next Tuesday?” In fact you don’t often get to think very long at all. You pick a team to help get you through the steps and when they say to “JUMP” you quickly ask, “how high?”
It happened again today. We were flying along post transplant. Jamey looks and feels great. His new kidney is a total rockstar! Taking and following directions like a champ! Unfortunately, his new kidney is receiving direction to dump phosphorus. And it is doing what it’s told.
The girls don’t have school today. We had a couple friends helping with the girls while we ran to clinic – downtown. Everything was going great! His creatinine is down to the super low number of 1.1!!!!!!! Unfortunately, his phosphorus is down as well.
When you enter renal failure your kidneys can no longer dump excess phosphorus. You have to take binders every time you eat. A couple glands in your body realize this is happening and they get angry. They get enlarged and keep barking the command to DUMP PHOSPHORUS!!! The sick kidney can’t respond. Then you get a new healthy kidney. It is excited to do everything that is asked of it. Even when the big angry glands are asking it to dump phosphorus. This is common. Usually transplant patients take some extra phosphorus while the glands calm down. It doesn’t seem Jamey’s glands are cooperating. His kidney function is great! And it is doing what it is being ordered to do. But his phosphorus is just too low.
He has been taking LARGE amounts of phosphorus – three times a day. It isn’t helping. Today, we thought we would run to clinic and then go grab the girls for a fun day. Until the dr said, “The next step is IV infusion of phosphorus. We need you to do that today. Now, in fact. Take this paper down to admissions. This will take 4-6 hours.” 🙁 Not at all what we had planned. And not a good time to reply, “Sorry, no, this isn’t a good time. How about next Tuesday.”
So, here we sit. He says it hurts.
The good news is we are surrounded with GREAT people. The doctors have a plan for the glands. And one of our friends has our girls at a park play date with friends!! We will just keep chugging along.