July 21, 2019
Hey, everyone. It’s Sadey. It’s been a minute but I wanted to just post a quick update. I have had a lot of people that I’ve spoken with be surprised that what Brett is dealing with is not just simple leg pain/neuropathy related to his kidney disease. This is not the case. It is much more than just the pain/neuropathy. It is very extensive nerve damage and weakening of his lower extremities. It is not related to the kidney disease. He is assisted with crutches, a walker, &/or a wheelchair if we need to get him more than about 50 feet. Stairs are out of the question at this point. Since Brett was released from the hospital on July 10th, he’s not had any improvements. In fact, his legs have gotten a bit worse. This past week we saw his nephrologist on Tuesday, July 16. He was surprised to see that Brett hadn’t improved and was still very concerned. He set up an appointment for Brett to see the neurologist up at the University for a follow up. Thursday, July 18 we saw her. She was also very concerned about the progression of and the extent of his nerve condition. She put in an order to begin what are called ivIG treatments. This is basically an immune system “mop up”. He’ll need three days worth of these treatments. If we don’t get an insurance approval by Tuesday, she is going to have him admitted back into the University of Utah hospital for those treatments. There’s a lot of gray area filled with details here that I’ll spare you. If these treatments don’t help improve his symptoms, they may try some rounds of hemodialysis (more traditional dialysis that cleans the blood) rather than the peritoneal dialysis he is currently doing at home. So. For now... Still no concrete prognosis or really diagnosis. Could be a more advanced condition than GBS/AIDP. We could potentially be dealing with CIDP which would be a lifetime battle. If we can confirm this diagnosis, we will have been lucky to have so early so that we can get treatments going right away. It’s a lot to take in and we will definitely let you all know when we have more information and lab results. Brett is doing ok. He’s going through a lot mentally, emotionally, and (obviously) physically. He appreciates all of the love and support so much. It means the world to us. Our sweet friends are putting on a fundraiser this Tuesday, July 23 at their snocone shack located at Jakes Brookside in Springville. We thank them so much for their generosity and love. We thank you all, as always for your continued support, the sharing of his story, and your donations. It truly makes such a big impact. We love each and every one of you. Xxoo
July 9, 2019
ok. Here's the latest.
Saw the attending neurologist. He has no reason to believe this is not an acute situation. (Acute = good) Guillain-Barré/AIDP
He did explain that of course auto immune things can take on a life of their own and are very unpredictable. He says that he hates to guess because nothing is certain but he’d anticipate the improvements in his legs to take more likely around 6months rather than upwards of 3 years. (Which was a possibility that was talked about yesterday after they tested his legs). He confirmed based on that EMG (muscle/nerve test) report that the damage (which turned out to be much more extensive that they initially thought) has only affected the sheath/covering of the nerve, not the axons/actual nerves - which sounds like great news. He doesn’t plan for any plasma exchanges or treatments to take place once he’s been discharged from here. Good news: We could be getting him out of here a little earlier than expected as handling the treatments really well and hasn't had to break too much in between. (Fingers crossed)
He will have a follow up with neuromuscular 4-6weeks after discharge and depending on symptoms may or may not repeat an EMG.
As far as transplant. The major concern there would be him being able to get up and move around in part of the "ambulatory" /healing/recovery portion of that. But nothing vascular is going on- so that’s good. It does, unfortunately, sound like they may need to hold off on transplant until the transplant committee decides he is physically able enough to handle the surgery, the recovery, and the medications required following transplant.
This is a bummer but we are staying optimist that these treatments will get him moving and symptoms will at least improve to where they’re comfortable transplanting.
So. Some answers, some things that can't be answered, some optimism, and some discouraging stuff. But. Staying hopeful and searching the worldwide web for a badass cane.
His biggest sadness/let down/disappointment is thinking that he was coming in here so that when he left he'd have his legs back. Which will not be the case.
How’s that for an update? Thank you all for sticking with us and helping us through all of this. Thanks to my sister, Mindy for being my two littlests’’ mom when I can’t. Thank you to our older two daughters for handling things at home. Thank you to everyone that has brought meals, groceries, and encouragement. Thank you to Scott Rasband and everyone at Chick-fil-A for being so supportive and handling things throughout Brett’s absence. Thank you to my clients for being so patient, flexible, and understanding. Thank you so much for sharing Brett’s story and for your donations. Everything helps us more than you can imagine. Love you all. Xxoo
July 9, 2019
Hey, all. Brett began his plasma exchanges Saturday night. He has had two since then (3 total) This is great news. It means he is handling the treatments really well and hasn’t needed that full day of rest in between. We are hoping this means he won’t be here the full additional ten days we were quoted. He had an EMG test today that (from what I understand) tests the nerves and muscles as far as their weakness and which parts of them are causing the weakness. It turns out his nerve damage is quite extensive. Possibly more extensive than the other drs have thought - or at least communicated to us. The information he got today is something that we will confirm with his attending neurologist tomorrow before we pass it along. Just to be sure it’s as accurate as possible. As for now- still Guillain-Barré syndrome. Today was a tough day for him. Emotionally, one of the toughest. He’s very frustrated, tired, sick of being here, and discouraged about his recovery. I’m so proud of him and love him more now than ever. Thank you to everyone who continues to reach out, everyone that has shared his story, and for all the donations. We are filled with gratitude for all of you. I will update tomorrow on what we hear from his attending physician. Xxoo
July 4, 2019
Happy Fourth of July! We had some mild plans of relaxing at home today with the family... however we are at the University of Utah hospital instead (No panicked emergency). I have mentioned Brett’s weakness in his legs and his neuropathy/tingling + numbness. That does not seem to be improving- if anything it seems to be getting worse. The bottoms of his feet are numb, especially toes. He has some numbness also happening up his ankles. Along with this, the weakness in his legs makes walking necessitate railings and assistance. Any sort of impact without assistance will cause his legs to go out from underneath. Bless his heart- he took a tumble out of our garden box and another one trying to get out of the way of the sprinklers. A flight of stairs or any level of incline or decline leaves him completely exhausted. He has recently also noticed that when he’s taking stairs or an incline he will have some lower back discomfort feeling like over exertion in those muscles. ANYWAY. His doctor wanted him to have an MRI to check his lumbar and see if we could find any answers that way. After waiting a week for a referral approval without an answer, Brett went in for regular labs. After seeing him and following up, his dr then recommended that he see a neurologist as well. After finding that it could be 4-6 months before he could see said neurologist, his dr decided to do a direct admit here at the U to get things figured out. We got here around 7:30 last night since then he has had multiple consults with multiple departments, lots of labs, and an MRI. We are waiting on those results now and have a neuro consult coming up. Aside from this issue, his overall energy has improved with dialysis. He wants to do things but, unfortunately, his body won’t really let him. We are a little discouraged to add that his second potential donor was recently bypassed. So it’s on to the next one. This means he’ll be on dialysis for at least another 2-3 months (if this next candidate is THE ONE). Thankfully, there are so many kind, selfless, generous people that are willing to donate to a perfect stranger. The salon I mentioned (I think) in our last post that offered to donate the proceeds from all the haircut services they provided for a week extended their generosity through the end of the month. Good, good people. We’ll post any updates or findings when we have them.
Thank you, always, for everyone’s support and love.
June 28, 2019
My goodness! Again, seems forever since our last update. We’ve been doing Brett’s dialysis completely at home for the past 10 days. Everything has gone really well. We underestimated the time it takes to do both his 10+ hours worth of exchanges at night AND a “midday dwell”. There sometimes doesn’t seem to be enough hours in the day! We are acclimating though
June 16, 2019
Hi, friends. It’s only been three days since our last update but it honestly feels like a week has passed. After Wednesday being one of his toughest days, we were back in clinic all day Thursday and Friday. Thursday they were finally able to change his transfer set and his wound dressing. It looks amazing. Healing really well. Along with that healing, his “drain pain” has improved SO much. A lot more comfortable that way and also filling and draining quicker. Thursday they upped his volumes and dwell times. That just means: a lot of hours of dialysis from Thursday to now. This morning he said to me “I feel like with every cycle I’m starting to feel better” What a relief. That being said- I’m trying to make him continue to take it easy and not overdo it. His leg pain/neuropathy is probably his chief complaint today. He went to work today and is now exhausted and sore but I think he enjoyed getting out. Another huge improvement has been his sleep the last couple of nights. We were worried with the machine (cycler) that he wouldn’t be able to sleep well, but last night he was out cold. So happy about that. We have one more full day in clinic on Monday, then it’s all at home after that. I am adding some pictures in his journey album that show his catheter exit site and also a good photo I found that explains best how this type of dialysis works. We’ve been very grateful again this past week for everyone’s kindness and generosity. Dinners, cards, messages... we appreciate all of it. Love you all!
June 13, 2019
Wednesday, June 12, 2019
What a day. We started the day with a friendly delivery of our 40 cases of medical supplies. (See photos) They’ll check our inventory regularly and keep us supplied with about 2 weeks surplus. Today was a tough day for Brett. He did not feel well. His legs have been a big complaint. He has neuropathy caused by the renal failure. More recently he feels numbness up to his ankles. Today his calves were super tight. This all causes an incredible weakness in his legs that is exhausting and very hard to do too much with. A newer symptom is a lot of twitching throughout his body. That’s driving him crazy. Lots of questions and concerns that will most likely be answered with : ESRD.
Today he also struggled with dizziness and a lot of nausea that inevitably ended with vomiting. I feel terrible for him and so helpless. Hoping that we can up our dialysate volumes and dwell times so that he can start feeling better soon. Our continued gratitude to all that support us and have reached out. A big shout out to my clients who have been so understanding and flexible. And to my amazing network of people that take my work load when I can’t. We love you all.
June 9, 2019
It is Sunday, June 09. We have successfully done 7 manual PD exchanges at home! We have two more to be done today. We just drained him and now he feels up to going to see a movie with Piper. He is a trooper that is for sure. Not only is draining still quite painful, having to lay and be stationary for so many hours a day really isn’t his jam. One more week of that then hopefully he can start moving a little more during exchanges. At some point he’ll be able to walk around during dwell time. We’re really hoping and praying that we won’t get too used to this lifestyle before we find a donor match. (
June 8, 2019
Spent most of today at the dialysis clinic training on manual exchanges. I was overseen by our nurse Kelly of course. We did 4 in clinic then she gave us the option to finish his 5th while we were there or this evening at home. Brett’s last drain was pretty painful so he was ready to get out of there. We opted to finish his last exchange tonight at home. Once we were home I let him rest and got him dinner.
Just a few minutes ago....
June 7, 2019
Brett finished his third day of dialysis! We started at 9am and were out of there by about 5:00. The catheter seems to be draining a bit better. He still has pain with it and it tends to slow toward the end of each drain, but seems to be getting better each day. Tomorrow I will be doing all of his exchanges manually (carefully overseen by his dialysis nurse, Kelly) so that I can continue them at home through the weekend. We brought home the beginning of our supplies today. We are expecting a shipment of about 40 cases to be delivered to our home Wednesday... so we’ll spend the weekend dialyzing and setting up our new “dialysis sanctuary”. We will do manual exchanges at home on the weekends until we receive our own “cycler”. As always we want to thank everyone for their kindness, support, and generosity. We really appreciate each and every one of you.
June 5, 2019
Day 2 is under way. Brett had two exchanges this morning that took from about 10am until just before 2:00. His drain is still quite slow so we typically have to do that manually when we are disconnecting. When he stands he gets pretty queasy so he prefers just powering through. I got him to go get a smoothie and some fresh air and now he is on exchange #3. We were hoping to get 5 in today but I’m guessing it’ll be 4. He is exhausted and sleeping soundly right now. He continues to be so positive and crack jokes through everything. We talk about how great people are and that in a time when the world seems dark and lost, situations like this remind us there is still a lot of good and light out there. Thank you all for being a part of of lives. We are blessed with an amazing support system.
Love Sadey
June 4, 2019
Brett has officially started peritoneal dialysis. He has had one successful “exchange”. He will do another 3 of these today. During this process, a dialysate is delivered via the catheter he had placed yesterday to a space in his abdomen called the parietal peritoneum. This fluid is then left to “dwell” in this space essentially attaching to the toxins in his body that his kidneys won’t filter. Once this dwelling period has ended (about an hour later), the dialysate is drained - taking those toxins with it. As I’m typing this, they’re draining and it is proving to be quite painful. This is probably due to the fact that his catheter is so new and tender. He is being a champ. The description of the pain he just gave his dr and his dialysis nurse is... something we’ll share later lol. Thanks again to everyone for their love and support. We hope that you’ll continue to follow along and cheer him on to kidney transplant victory! I’ve added some photos of today’s events to his journey album
Love, Sadey
June 3, 2019
Brett just got out of surgery. Everything went really well and he, of course, was a model patient. (Eyeroll) He’s a model EVERYTHING. Thank you all for your well wishes and sweet messages. We will see his dialysis nurse tomorrow to get going!
June 1, 2019
Some of you know that in late 2013 Brett was diagnosed with a kidney disease called IGA Nephropathy. Unfortunately there were really no symptoms of the disease and it had been undetected for an estimated 10 years or more.
This disease is when one set of your antibodies recognizes another set of your antibodies as something foreign to you. They continue to “fight off” your own antibodies (unsuccessfully). This process creates inflammation in the kidneys. When that inflammation is left untreated or undetected it ultimately causes scarring of your kidneys. This type of damage is mirrored and affects both kidneys at the same time in the same way.
Upon having a biopsy done to see how far advanced his condition was, they found that his kidneys were already nearly 60% scarred over. That changed our “does he need a transplant?” to “when will he need a transplant?”
As of about January this year we found his “when”. Brett is currently functioning at about 8%. He is having his first surgery on Monday, June 03. During this surgery he will have a catheter placed in his abdomen so that he can begin peritoneal dialysis. He will continue dialysis daily until he is able to find a donor match and have a successful kidney transplant.
We want to thank everyone that has supported us throughout these past 6 years. We want to thank all of you that have so selflessly offered to donate. No words could ever express our gratitude for each and every one of you.
We created this page so that you can stay updated on his upcoming journey and see his progress. We have gone through this particular site so that those of you that are able to donate can and for those of you that can’t, might be able to share this with friends and family. All donations are paid directly to Help Hope Live and are for medical out of pocket expenses. This site will remain open before, during, and after his transplant to also help cover the costly medications that he will require for his lifetime.
We appreciate you taking the time to hear his story and to share it with others.
Love,
Brett, Sadey + family
