Transplant - TBD
Parathyroid surgery - CANCELLED!
Hemodialysis catheter replacement - CANCELLED!
Fri, Sept 6 - Aaron update:
Things are going well here for Aaron, he's feeling much better, and levels are slowly coming down into normal ranges. He may be able to come home tonight or tomorrow. The nephrologists want to make sure he has a dialysis regimen that will sustain him at home before they release him though. We should see them again this afternoon to get that plan.
Markus is still being put through tests, more today, they're trying to find a diagnosis.
The Latest In This Journey:
Wed, Sept 4 -
Crew is good, happy and brave all day (when not under heavy sedation from oral surgery).
Aaron is good, just got moved to a new room, it’s nice! He’s feeling better, BP is consistently right, and no pain right now. Trying to figure out a better dialysis regimen, and continue to see his levels come down.
Markus seems good too, trying out a new nausea med. Has a few more tests scheduled for Thurs & Friday. Had a rough night last night, so praying for a good night’s sleep tonight!
I, however, am recovering from a stressful 24 hours. I think I’ll sleep well tonight! ✌️
Tues, Sept 3 - Aaron update:
Yesterday was stressful. Aaron was in so much pain. His ankles, legs, and feet were just torturing him. They couldn’t get his blood pressure under control, so they moved him to another floor, where he could be monitored more closely, and put him on an IV drip of something stronger. He had a really rough evening with pain.
This morning is better though—it’s a brand new day! His pain has slightly decreased, his BP is a little lower…overall, his numbers and levels seem to be improving…slowly, but surely! Hopefully they can put him back on a pill version of BP meds, and move him back to a less intense floor.
The view over here is nice though! I have to head back home tonight to take Crew to his oral surgery tomorrow. If all goes well there, hopefully I can be back here tomorrow evening.
Markus is scheduled for a few tests today, so please pray for him!
Mon, Sept 2 - Aaron update:
Today is a mess so far...he’s in SO MUCH pain in his ankles, up to his knees...shooting pain. They’ve x-rayed, they’ve given him a strong pain killer...so far, not much is helping. They’re also having trouble managing his BP...it’s still over 200, and he’s SLEEPING, and had meds. It’s just been a little disconcerting today.
He’s on cycle 3 of dialysis...(to put that in context, we do 6 cycles per night...he’s on 3 in 48 hours, because the dialysis unit is the only crazy thing about this hospital). I think what’s happening is his levels are so out of whack from not getting adequate dialysis for a while now, and he just needs GOOD dialysis to clean him out and get him back on track. But the symptoms of being not on track, are extremely painful and frustrating for him.
Meanwhile, Markus is in another medical unit puking and waiting for a liver specialist. Judy is floating between the two, please keep her in your prayers! We also found an exhaust leak (understatement, actually) in her jeep while here, so she’s under plenty of stress!
Sun, Sept 1 - Aaron update:
We’re back at Hopkins. Aaron was progressively getting worse, health-wise, over the past 3-4 weeks. His legs were swelling again, he had extreme nerve pain in his feet and ankles, his blood pressure was skyrocketing, his phosphorous level started to climb back up, his skin began to break out, and he was just over all feeling crappy and struggling.
They admitted him into the hospital this morning. The plan so far is to get dialysis going…they think that he just needs cleaned out, and if that happens overnight, then they’ll see where his levels are in the morning.
His dad is here as a patient as well, dealing with some liver and pancreas issues. They've just admitted him as well, so please pray for Markus too!
June 27 - Aaron update:
Home is good food. 😆
But it can also be stressful sometimes. We're the nurses now. And we have medication adjustments to get used to, and antibiotic injections, and PD to set up and tear down every day.
The next steps are Monday & Tuesday of next week. A follow up at Hopkins, a catheter removal, and a first appointment with the Hopkins nephrologist to continue his care there, until transplant. We'll stay overnight in Baltimore on Monday night so we can get all that accomplished.
Back in December, I bought Aaron Hillsong United tickets for Christmas. That's also Tuesday night in NYC. So we're going to try to do it all, and have some fun too! Fun is also good food for the soul. :)
June 25 - Aaron update:
We are finally home!
The medical supplies that we need to give him the antibiotics at home have already been delivered, we’ve been trained, sent home with almost all his prescriptions, and we have all follow up appointments lined up (Monday & Tuesday next week).
June 25am - Aaron update:
Nothing new to report...waiting on discharge. They’re setting up home care so Aaron can get intravenous antibiotics at home until Monday. We’re also getting set up with Hopkins Nephrology for follow up. 🙂 Things are happening! Just slowly....
June 24am- Aaron update:
Still a possibility to get discharged today, but we’re waiting on the IR team to let us know when they can get him in to put the Hickman (catheter for intravenous antibiotics) in. 🤞🏼
Might be tomorrow, but we’ll see!
June 22am - Aaron update:
No real medical news today. I'm heading back to Gettysburg in a few hours to preach tonight and tomorrow morning, and then I'll head back down here. Hopefully only for one more night! Aaron's parents are coming to stay with him while I'm gone.
The hospital is a ghost town on the weekends, and although only half the shops are open, it's nice to get a break from the hustle and bustle. FV, I'll see you all tonight!
June 21am - Aaron update:
Not much to report today. Waiting on blood culture results. Aaron’s BP still drops pretty significantly when he stands up, which might just be dehydration still...there’s just watching it closely and taking blood work.
A doc said today that it will be at least Monday before he goes home.
June 20am - Aaron update:
Today's goals WERE to put the hickman line in (a small catheter for antibiotics), and potentially be sent home today.
HOWEVER, we now have new goals. This morning, Aaron's been pretty light headed and dizzy, and so they took his BP when sitting, and when standing, and when standing, it dropped to 60/44. His white blood cell count is elevated, and they've been taking too much fluid with dialysis and not replenishing it (because he was on the standard fluid restriction for dialysis patients, and because he couldn't have fluids this morning due to the procedure later).
All that to say, they're going to take new blood cultures, get some fluids back in him, put the hickman in TOMORROW probably, and keep him for at least another couple of days for observation.
Hopkins is on it. 👍
June 19pm - Aaron update:
It's definitely been a slow day here in the hospital. I got some sermon prep done...been doing a lot of people watching from my view up here on the 8th floor..:)..
But we also got a lot of news! Nephrology has signed off on continuing doing PD at home, which is much more convenient for us. He'll have to change his prescription a bit and diet a lot, to keep the phosphorous down (down 2 points today! 7.8). We're also going to switch his nephrology care here, so that may take some time to work out.
The bacteria in his blood was a staph infection, from bacteria on the skin. It's a common complication from hemo catheters. He'll have to continue on an antibiotic, which he'll need a new catheter line for, just for a few weeks. Someone will come teach us how to do that at home, it sounds like, although we haven't gotten all the details about that yet. That'll get put in tomorrow.
*Hopefully* we'll get to go home after that, sometime in the evening tomorrow maybe? Could still be Friday...
June 19 am - Aaron update:
Sounds like it's going to be a slow day. Waiting on some results still, getting another round of antibiotics and dialysis...if they decide to go back to hemo, he may get that catheter placed, but that could also be tomorrow or the next day.
Just a waiting game at this point!
June 18 am - Aaron update:
Already have done a heart echo and an ultrasound today. The infectious disease doc also stopped by to check in on him. They’ll take cultures again this evening to make sure the vancomycin is doing its job. They may also drain the swelling on his knee today to see if any infection is there.
Whew! This morning the doc team said it would be a slow day....🤷🏼♀️
We were trying to count the number of departments working on him....1.Nephrology of course. 2. Transplant nephrology. 3. Infectious disease. 4. Ortho. 5. Dialysis. 6. Dermatology. 7. The attending overseeing it all.
😳 I may have missed one in there....
June 17 pm - Aaron update:
We have accomplished all the goals from the morning, except the ultrasound, and they said that could be happening still tonight.
Dermatology also stopped by and took a sample from the sores on his legs, to do a biopsy on. Should hear back from them soon, but they did send a cream already to put on it.
The transplant nephrologist also stopped by tonight. And the infectious disease doc, to talk about the bacteria. He had lots of questions. They're all working hard on a plan forward toward transplant!
In other news, Tele & Crew were here today (I snuck out and took them to Port Discovery for a few hours), and I'm just so grateful. Crew is struggling with wanting his mama, so it was SO nice to see them, and make Tele feel super special on her birthday. She came home to SO MANY presents--THANK YOU, THANK YOU, THANK YOU to everyone who made her day special, and Crew's day too. You all are the best. This mama's heart is a little heavy for my boy today, but my birthday girl had a great day. <3
June 17 am - Aaron update:
Doctors just told us the goals for today are to get the VQ scan (it will show them if there are any clots anywhere else, like heart or lungs), another ultrasound for clots, and bloodwork. Continuing heparin for blood thinning and vancomycin for the infection.
June 16 pm - Aaron update:
We had a busy afternoon! Aaron's room was grand central station for a while. He got the hemo port out, blood cultures started on that to see if that's where the infection came from, PD got started, Ortho came and saw him (his knee has a weird thing going on, probably unrelated), a couple nephrologists came by, like 7 doctors at various times...it was crazy there for a while! But all good progress.
June 16 am - Aaron update. Just got the low-down from the doctor.
-The blood cultures they took in the ER show that Aaron has some kind of bacteria in his blood.
-They're starting him on strong antibiotics today. And they suspect it's coming from the hemo catheter, so they need a plan to remove that.
-Because of the blood clot, that plan needs to be carefully decided. They're still working on that plan, and need to run some more tests to fully decide that.
-They're working with the renal team, and everyone is agreed that ultimately, we gotta get to transplant, and so we need to get through these issues as fast, but as carefully as possible to make that happen. They will also help make the decision about whether to put a new one back in, on the other side, or continue with PD at home.
They think we'll be here all week...maybe until Thursday or Friday at this point. Thanks for all the prayers for me as well! I'm good. We've had a hotel room the past few nights, that Aaron's parents and I have been using for showers and naps and breakfast. They're leaving tomorrow.
June 15pm - Aaron update:
Well, we've finally been admitted, and we have a nice view on the 8th floor, overlooking the city. Aaron's doctors are all working together, even in the room at the same time, which is lovely!!
They are playing with his medicines, determining what to change and what to keep. They'll do this along with manual peritoneal dialysis, until Monday, where they'll try to make a more solid plan for going forward. They're all very focused on getting to transplant, and managing all the other symptoms in the mean time.
Thank you for all your love and support! We're a little bummed about being stuck in the hospital for Father's Day, and Tele's birthday on Monday...but I'm very grateful to have Aaron around to celebrate many more holidays and birthdays in the future.
June 15 - We spent all night in the Hopkins ER waiting room.
But they’re definitely keeping him. The doctors here are awesome. 👌🏼 They’re going to check with his transplant team and make sure they’re going about everything correctly, with the blood clot getting first priority, in the ER, and then they’ll hand him over to the hospital teams.
We don’t know how long it will take to get admitted. They’re taking blood cultures now. They’ve ultrasound-ed the clot and examined him a few times now.
Gonna be a long day of uncomfortable naps and worrying about things at home (although, HUGE shoutout to the amazing FV staff for covering everything like champs, and Jeremiah Herbert for helping this morning too!! ❤️)
June 14 - He's been super fatigued and weak and short of breath today. We went and checked in with our PCP, Doc Lunsford (thank you doc!!), and he recommended we head to the ER. Aaron's BP was at 80/55....
So, we're now about to head down to Hopkins ER. Please pray that they get us in fast, and they work with Aaron to figure out exactly what's going on, and get him stabilized.
June 13 - Aaron update:
Did Peritoneal Dialysis (PD) last night at home. Still home, praise God! Got the blood thinner prescription filled this morning, and waiting on Hopkins to let us know what the recommended testing schedule is for being on this blood thinner. Also, waiting for follow up instructions, in terms of when the blood clot should be ultrasound-ed again, and evaluated for the hemo catheter to be moved to the other side.
His levels are better on hemodialysis, so they do want to switch him back to that. While on PD, he'll be on a pretty strict diet of whole foods, limited meat, no dairy, etc.
I'm sorry if I skipped some explanations there..I'm losing track of when I'm posting updates, and the plan changed like every hour all day yesterday.
June 12th pm -Aaron update:
The plan changed about 87 times before we left the hospital. We almost transferred to York or Hershey...it was crazy, I won't get into the details here. BUT--we are home. Please pray that we get to stay, and there are no complications.
Aaron's doing peritoneal dialysis tonight, and we're going to call Hopkins in the morning, make sure the dosage of his blood thinner is correct, figure out the blood testing schedule, and hopefully get some sleep tonight.
Here's hoping!! <3 you all.
June 12 am - Aaron update:
Thank you all for asking and praying and caring!
We've been through all the options today, and finally came up with this plan, with the nephrologist.
Tonight, go home, and do a round of Peritoneal Dialysis, along with taking oral blood thinners.
In the morning (or whenever Hopkins tell us to go, waiting to hear back from them), take Aaron to the Emergency Department at Hopkins.
There, get him to see the Vascular specialists (they don't exist at Gettysburg anyway), to determine if the clot should be messed with or left alone (with blood thinners) to dissolve on it's own, AND to determine what should be done about Aaron's hemodialysis catheter. It will probably need moved to his other side, to be used in a different vein.
We did find out today that Aaron's phosphorous level is down to a 5 (was up to 15 two months ago), and his PTH levels are down to 463 (was up to 1500 two months ago)! That's serious answer to prayer, and the doctor's attribute it to hemodialysis!
Also, THANK YOU TO EVERYONE WHO HAS GIVEN TO MY FAMILY! You know who you are, and you're seriously amazing. I don't know what the next few days will bring, but I know that I can face them with strength, and without worry, because of you. <3
June 11 -Aaron update:
We’re currently in the ER, about to be admitted.
Yesterday Aaron’s neck started hurting. It’s a long story, but basically, he has a large blood clot in his neck that is causing painful swelling. They did a CT scan, ultrasound....giving him a heparin drip now.
His BP is pretty high, he’s got a headache, he’s fatigued, and he’s not happy about staying. But hopefully they get him dialyzed here tomorrow morning, and let us go home.
No visitors for now please. Just pray! 🙏🏻
May 30 - Spent the whole day at Hopkins, about 5 or so appointments across the crazy big campus. The consult was first, so we heard what the surgeon had to say about the parathyroid surgery.
What we now know about the surgery:
the diagnosis is: secondary hyperparathyroidism (meaning, something else, THE KIDNEYS, are causing this issue, not the parathyroid glands themselves)
they're aiming at taking out 3.5 of his 4 parathyroid glands, leaving him with 1/2 of one, so that it'll still regulate calcium in his blood.
he could be in the hospital for up to a week afterwards, so they can monitor his calcium and PTH levels.
the risks included some effects (of varying degrees) on his voice. Scary, but happens only rarely.
could be scheduled as soon as the end of the June.
All the testing happened after the consult, so we don't know if all our prayers were answered about the surgery not being necessary yet. Still hoping! Either way, it'll be a good step toward transplant.
**Crew update: 😆🤦♀️ Thank you for all of your questions about my boy too! <3 He's great! Such a trooper, getting used to life with a cast. He gets a real cast on Monday!
May 25 - We had a pretty good week, actually! Since Sunday, we've seen a big change in Aaron, and we have the test results to prove it! Since praying over him on Sunday, the swelling in his ankles and feed had consistently gone down, and there has been no swelling since. Tuesday's blood work also say that his phosphorous levels came down from 15, to 10! (under 5 is goal) His PTH levels are also down!
Hemodialysis started again on Friday, and he was pretty wiped out after, but kinda relieved that he doesn't have to go again until Monday, and has the weekend free of dialysis. Silver linings, right?!
This coming week, we go to Hopkins all day on Thursday to talk about the Parathyroid surgery, and honestly, we're just really praying at this point, that he doesn't need it! Pray with us??
May 21 - Aaron’s surgery to get the hemodialysis port put back in has been scheduled (finally) for tomorrow at 12:30 at York Hospital! He’ll start hemodialysis back in center on Friday at 6:45am, and then continue to do it every Monday, Wednesday, and Friday from 6:45am til 10:45am.
Hopkins has also scheduled some things for the parathyroid surgery, he will have a consult and CT scan on May 30, 8:30am. It’s unclear if the actual surgery is happening that day as well, but we don’t think so.
May 13 - Hopkins called. No surgery May 30. Aaron’s phosphorous levels are too high and they want to go ahead and take out his parathyroid gland, put him back on hemodialysis, and then reschedule transplant.
That’s all we know for now! We’re bummed.
May 6, 24 days to go! - He's been in extreme pain the past few days...really, since Easter or before.. The swelling in his feet and ankles has been pretty severe, and his phosphorous levels continue to be very high.
This morning we were told his kidney function continues to decline and has gone from 7% functionality, to 2%.
24 days to go until Transplant...waiting to hear what the doctor says about the pain, if anything can be done. Please pray for healing and pain-free feet.
May 3, 27 days to go! - please pray for Aaron’s feet! He’s having swelling and pain right now. They have increased his dialysis regimen to 9 hours per night, and it does seem to help with the swelling. We’re hoping that once all of that water weight gets back to normal, his feet will heal and feel better too. Please also continue to pray for his phosphorous levels to come down.
-Wisdom & steady hands for the doctors at Hopkins
-Provision & preparation for the family and the church while Aaron is recovering.
-Aaron’s phosphorus levels stay down in normal ranges while we wait for transplant.
-Carman, Aaron’s brother, is the donor, please pray for him through this as well!
Aaron has been on this health journey since July 2018, when he was diagnosed with Chronic Kidney Disease, and End Stage Renal Failure. At that point, he was immediately put on hemodialysis, 3 times a week, 4 hours at a time. In late September, he & Candace were trained for peritoneal dialysis, which is done at home, every night, 8 hours at a time. That, along with lots of medications, have been keeping him somewhat comfortable, while his kidneys are only functioning at 7%. Dialysis can be tough on the body, and doesn’t fix every problem, and Aaron has been eager to be done with it!
Aaron began working with Johns Hopkins in October, for a kidney transplant. A few people went through the initial testing for live donation, but Aaron’s brother, Carman, was their first choice because of being such a close relative! He’s been cleared for surgery, and they’ll do a few more tests beforehand to make sure nothing has changed, but everything is scheduled and ready to go!
“THANK YOU, THANK YOU, THANK YOU to everyone who has prayed, given, and been there for us!! We LOVE you all, and can’t thank God enough for you!!” - Candace