Sept 22, 2025

 

We are praising God that dialysis has been going really well since Will had surgery last week to clear a blockage in his access graft. Last month, his kidney doctor slightly increased how much fluid they take off during dialysis to see if that helps lower his high blood pressure. It did which is great! Unfortunately, it went too low today and he had another episode of altered mental status and passing out. Thankfully, it was mild and he was able to avoid going to the hospital. Last time it happened, we learned that the brain damage he sustained during his eight brain surgeries is hindering the ability of blood returning to to his left frontal lobe and bilaterally to his temporal lobe. This is what is causing the altered mental status during syncope (passing out). He also has another brain injury that can make managing blood pressure more difficult. Please pray for God to to do a miracle and fix these issues.

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Thank you for your continued prayers!!!

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Aug 1, 2025

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Please keep Will in your prayers this morning. He is having surgery to remove a clot from his dialysis access. I’ll add updates in this thread.

 

SURGERY UPDATE: Will’s surgery went great! His doctor said it was very easy and straightforward. We’ll be home after dialysis. Thank you for your prayers!!

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Exciting news! Will now has several social media pages specifically for transplant and kidney updates. Follow him and share his story and updates on Facebook, X, and his own webpage. They are all under the name Kidney Champions for Will Graham (.com). We chose the name Kidney Champions because we believe every single person who supports him in his kidney journey, even in very small ways, is a champion. The three social media pages will have the same information. His website, which is still a work in progress and will be live intermittently for a couple weeks, will be more interactive to include facts about his medical conditions, events to promote locating a living kidney donor and fundraising, and provide ways to make donations. Our goal is to raise enough funds for transplant that his donor and their caregiver will not have to pay for anything related to the transplant including non-medical expenses. Follow and share Will’s story on these great resources. As a reminder, please  DO NOT make donations through Caring Bridge. We don’t receive any of those donations. They all go to Caring Bridge in Will’s honor.

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Jun 29, 2025

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Will was released on Friday. Unfortunately, we weren’t able to get any answers as to why Will experienced 20 minutes of altered mental status after he passed out. What we do know is that he did not have a stroke or seizure. The hypothesis is the frontal lobe damage from his eight brain tumor surgeries caused him difficulty regaining consciousness normally and may have been what caused the incident. He’s being referred to a neurologist as his retired last month. The other down side is we don’t know why his blood pressure keeps going too high and too low. It makes it impossible to keep his blood pressure stable. Thank you for covering Will in your prayers!!

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Jun 27, 2025

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Today marks two years of dialysis. Will was so very close to not surviving when he started it. While the last two years have seemed to bring one big struggle after another other, today marks 730 days of bonus time to live our lives together, live life in a way that exemplifies God’s goodness, form testamonies of God’s countless provisions, and the hope of Will living a life free from Chronic Kidney Disease and End Stage Renal Failure as a kidney transplant recipient. Please join us in celebrating these last two years of life by praying for Will to find a kidney donor and sharing his story.

 

Will Graham is an extraordinary man of perserverence and strength. When he was eight years old, Will was diagnosed with a brain tumor at his pituitary gland called a Craniopharyngioma. He underwent eight brain surgeries over eight years to remove the tumor and cyst. While his tumor has not returned since his last surgery, it has left him with a life of constant medical needs. Will lost his pituitary gland which has resulted in the life-long need for total hormone replacement therapy. It also left him totally blind at the age of 13. Ten years ago, he was diagnosed with IgA Nephropathy. This kidney diseases is caused when antibodies that are supposed to fight infections become defective and cause your immune system to work against itself leaving harmful deposits in the kidneys. There is no cure for IgAN. His nephrologist doesn’t have a definitive reason as to why he developed IgAN as there is no family history of kidney disease and he has no other risk factors. While it was well-controlled for eight years, Will got COVID from me the two times I got it from my students and another time from somewhere unknown. It took six months for his kidneys to recover to pre-COVID function the first time, nine months to recover most of the pre-COVID function the second time, and he suffered an acute kidney injury that he never recovered from at all the third time he had COVID. As a result, Will has been on dialysis for two years. In that time, he has had 11 hospitalizations and even more surgeries due to complications from dialysis. We have spent three of our seven anniversaries in the hospital due to his End Stage Renal Failure and complications of dialysis. Dialysis continues to loose its ability to properly clean his blood. His nephrologist said he needs a kidney soon. Now, at the young age of 42, Will is literally fighting for his life. Without a kidney, there’s not much more they can do to continue extending his life. Before the acute kidney failure, Will was full of life, loved to travel, had tons of energy, was very involved in the community, and was the life of the party. Now, some days it’s all he can do to get out of bed and have lunch with friends or go run errands with me. He is not the same man he was just three years ago before all of this started. We all miss the “old” Will dearly!

 

A couple months ago, Will was officially approved to be a kidney transplant recipient!!!! We have been praying that God would provide him with a kidney quickly and would provide peace and conviction for the right person. Unfortunately, everyone who applied to be a donor has been excluded. We understand that receiving a kidney from a living donor is an enormous life-changing matter for everyone involved. It is something we take very seriously and admittedly have some hesitancy about. However, in Matthew 7:7-8, God said, “Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened.” In obedience, we are asking, seeking, and knocking in faith that God will provide.

 

We learned some good information about donors at his class on Friday. Donors pay absolutely nothing for testing, surgery, and post-care. 100% of the entire donation process is paid in full by Will’s insurance. The average recovery time for donors is 4-6 weeks with just a couple days in the hospital. Donors can live a full life with one kidney (isn’t God awesome?!). Surgery can be scheduled at a time that is convenient for both donor and Will.

 

Unfortunately, I am not a match. However, there is an option called Kidney Share. This would allow a person to donate a kidney to someone else needing a kidney who has a living donor that matches Will. Please prayerfully consider if this is something God may be calling you to. If he is approved and matched, everything will take place here in Atlanta.

 

If you feel led to potentially donate a kidney for Will either directly or through Kidney Share, please scan the QR code or go to the web address to complete the survey. Emory has asked that you then call the their Transplant Center at the provided number, tell them Will has been approved for transplant and you would like to “escalate your application.” Your information is seen only by the Emory Living Donor Coordinator, is not shared with anyone else (not even us), and is removed if you are excluded.

 

Please prayerfully consider donation to help save lives. Thank you to those who have/will complete the application, to those who would like to but can’t, and of course for all of your continued prayers!!! We can’t begin to expresses our deepest gratitude and humility for anyone who considers becoming a donor. Please consider copying and sharing this post on your social media to help expand the search for a donor.

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Thank you for your continued prayers as Will navigates this process.

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Jun 26, 2025

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We’ve seen a couple doctors but haven’t gotten many answers yet. Testing did rule out stroke. His kidney doctor said he has every one of his doctors “perplexed.” There is still a possibility he had a seizure. He just started an EEG to monitor his brain activity. Neurology and psychiatry are also being called in to consult. He will also get a neurology referral for post-discharge. We also think it would be a good idea to get him into a neuropsychiatrist to treat some of the issues caused by his brain tumor. I’m also learning that he’s had more episodes of dizziness than he’s been letting me know about for at least a few weeks. This could be due to low blood pressure from dialysis, but it doesn’t explain the episodes of dizziness on non-dialysis days. That’s pretty much all we know right now.

 

As for how he’s doing, he’s very tired and just wants to sleep. He hasn’t had an appetite or wanted much to drink. There hasn’t been any discussion of when he might discharge, but it most likely won’t be today.

 

Please pray that he can get the rest he needs, his appetite and thirst improve, the EEG shows seizure activity if that’s what caused the event yesterday, we can get into a neurologist quickly as the wait in months to over a year long, his blood pressure stabilized, we can get him in to see a neuropsychiatrist, and above all, healing for every issue if that is God’s plan. Thank you so much for covering Will in your prayers!!!

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Enjoy this morning’s sunset. The picture doesn’t do the vibrancy of the neon orange coloring justice.

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Jun 25, 2025

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Please say a prayer for Will. He had a bad episode immediately after dialysis. He passed out and started acting really strange for 15-20 minutes. He came to St. Joseph’s by ambulance. He is stable as long as he is lying down, but his blood pressure drops if he stands. I’ll post updates here.

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UPDATE 6:00 PM: His kidney doctor doesn’t think what has been happening or today’s episode is related to his kidney failure or dialysis. He is being admitted for observation and further testing.

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May 21, 2025

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Hi, everyone! I wanted to send a quick update. Will has been stable for a while which is a huge praise. The stint that was put in his graft seems to be holding well and keeping him from clotting. This is great news after all the surgeries he had to have to open his dialysis access again. As for the transplant, there are three people who have started the process to see if they are a match for him. One of them would not be a direct match and would be giving their kidney to someone who has a donor that matches Will. Please pray that more people are will be to be screened as a donor. He is O+, one of the two hardest blood types to match, so he needs more people willing to be screened to try and find a match.

 

Mark your calendars for Friday, July 11th. We will be hosting a benefit for Will to help expand the search for a donor and to raise funds for the transplant. His insurance will pay for all of the medical for both people, but it won’t pay for anything for the donor’s caregiver. We don’t want Will’s donor or their caregiver to pay for anything. I’ll also be losing a significant amount income while I’m out for 2-4 months. More information will be shared in the next couple weeks. Keep this event in your prayers as we plan and prepare for it.

 

You guys are amazing for praying for Will and caring for him!!

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Mar 24, 2025

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Will and I went on a leisurely stroll through the park tonight. It’s so beautiful out right now! God even made sure to put a smile on my face with a random shiny purple (my favorite color) leaf in the midst of a sea of dead brown leaves. I couldn’t find where it had come from. In the challenges with his health over the past two years, we have come to treasure and value the smallest of pleasures like this.

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Mar 15, 2025

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PRAISE THE LORD, WILL WAS APPROVED FOR A TRANSPLANT!!!!! Now, we really need to step up the search for a kidney donor. The best match would be a person of his stature, 6 feet, and Type O+ blood. However, anyone can donate for him if they are a match for another person on the waitlist that has a donor that matches Will. I’ll post something with more information for you to share in the next couple days. Thank you for all your prayers!! Please keep praying for him!

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Mar 13, 2025

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Somehow, I forgot to post an update Tuesday. We have two praises. Will’s dialysis access is working again and we were able to come home Tuesday night. Unfortunately, he has been having difficulty with bis blood pressure staying dangerously low since surgery. This prevented him from being discharged Monday as anticipated. He is still struggling even today. He is not out of the woods yet. The main reason for the low blood pressure is he missed dialysis on Saturday and had more fluid on him than he usually does when he goes for treatment. He also had almost six hours of dialysis in less than 24 hours when he usually has four hours of dialysis every 48-72 hours. While they needed to get the excess fluid off of him, it came off really fast and threw his system off. He will go again for his regular treatment on Thursday. Thank you for praying for Will during these difficult days. Please also keep me in your prayers as balancing Will’s growing medical needs and work is becoming difficult. The enemy is attacking me with episodes of anxiety. It’s not so much that I’m anxious but that I’m under a lot of stress that causes the anxiety. We both fully trust God to comfort us and trust in His plan even though we struggle to understand why Will has to go through all of this. Thank you so much for all of your love and support!

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Mar 10, 2025

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Will went back for surgery about 15 minutes ago. If all goes well in surgery and dialysis and the hospitalist approves it, we should be home tonight. Please pray all goes well, no additional graft is needed, and we can go home tonight.

 

SURGERY UPDATE:

He is out of surgery and in dialysis. His graft was completely blocked. It started to bleed when they ballooned it where it was narrowed, so they put a stent in to help it stay open. He will be on a different blood thinner and a baby aspirin for the next month. Please pray he doesn’t have any injuries that would make him bleed, especially while alone. Please pray that his graft stays open until he can get a transplant if he is approved. After his dialysis is done, they will draw labs. If they look good, there’s a good chance we’ll be able to go home tonight. Thank you for always supporting us with your prayers, thoughts, calls, texts, FB comments, and visits!!

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Mar 9, 2025​

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We are praising God that Will’s blood pressure is doing significantly better than it usually does in the hospital!!! Your prayers are working and he hasn’t needed any extra BP medication this time. Thank you!!! His morning labs showed his potassium continued to increase. To try and get it down, they gave him a stronger medication. Please pray this works. If it doesn’t and his potassium continues to increase and they can’t do anything else to bring it down, he will be escalated to ICU to have a catheter put in and have emergency dialysis. If his potassium doesn’t come down enough before surgery tomorrow, they will have to move surgery to Tuesday. He is struggling with having to be here again, so we are trying really hard to be home Monday night. If you would like to call him, feel free. You can text or message me first if you want to know if it’s good time. Thank you for all of your continued prayers!!

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Mar 8, 2025

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Praise God, Will’s labs show the toxins are lower than expected since his last dialysis treatment on Thursday!!!! It’s been a pretty quiet few weeks since his last hospitalization and surgery. Unfortunately, his graft is blocked again and we are back in the hospital this morning. Even though we are frustrated that this keeps happening, we are praising God that his labs are stable enough for them to hold off putting in a catheter for emergency dialysis. That has never happened before in these situations! God is SO good!!! As long as his labs remain stable and his blood pressure can be managed, he won’t have dialysis until after surgery on Monday. His vascular team said they will have to do something different than clean out his graft this time because it keeps clotting, even with him on blood thinners this past month. They’re not sure what they will do yet. Please keep Will close in your prayers as he is extremely frustrated and down mentally because of these repeated hospitalizations and surgeries. Please pray his labs stay stable and his blood pressure comes down. Please also pray that his is approved for a transplant and a donor can be found quickly. He said these past few years have been as difficult as his eight brain surgeries as a child. Thank you so much for all your support and prayers!!!!

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Mar 3, 2025

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We are praising God for great news. The Emory Transplant Psychiatrist cleared him for transplant!!! While that is one more box checked off, he is NOT approved for transplant yet. He also saw his kidney doctor last week. Most of his labs still looked good. We need to continue working on lowering his phosphorus and potassium. His blood pressure has remained better with taking more fluid off of him during dialysis. The not so great information is that the effectiveness of his dialysis is still going down. The increased prescription is only borderline effective in removing the toxins from his blood. His doctor stressed that he needs a transplant soon. We are feeling increasingly hopeful that he will be approved. The hard part will be finding a living donor once approved. While he is a universal donor, only about 7% of the American population can donate to his type O blood. Last week, I shared a heartfelt post about seeking a living donor. If you are considering donating, you don’t have to be type O. You could donate to someone else who needs a kidney who has a donor that can donate their kidney to Will. It’s called pair share. If you would like to consider living donation or would like to help us widen the search for a donor, please use the web address or QR code in the picture below to access the information. If you would like to help us widen the search for a living donor, please use my post from last week as it is set to public. Thank you SO MUCH for keeping Will in your prayers and supporting us through these difficult past few years!!!

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Feb 23, 2025

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Will is in the final steps of gaining approval to become a kidney transplant recipient. While he has not been approved yet, the time has come to start the search for a living kidney donor so testing potential donors can begin immediately upon approval. We have been praying that God would provide him with a kidney quickly and would provide peace and conviction for the right person. We understand that receiving a kidney from a living donor is a enormous life-changing matter for everyone involved. It is something we take very seriously and admittedly have some hesitancy about. However, in Matthew 7:7-8, God said, “Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened.” In obedience, we are asking, seeking, and knocking in faith that God will provide.

We learned some good information about donors at his class on Friday. Donors pay absolutely nothing for testing, surgery, and post-care. 100% of the entire donation process is paid in full by Will’s insurance. The average recovery time for donors is 4-6 weeks with just a couple days in the hospital. Donors can live a full life with one kidney (isn’t God awesome?!). Surgery can be scheduled at a time that is convenient for both donor and Will.

Unfortunately, I am not a match. However, there is an option called Share Pair. This would allow me to donate a kidney to someone else needing a kidney who has a living donor that matches Will. A number of people have already offered to be tested. Please prayerfully consider if this is something God may be calling you to. If he is approved and matched, everything will take place here in Atlanta.

If you feel led to potentially donate a kidney for Will either directly or through Share Pair, please scan the QR code to complete the survey. Your information is seen only by the Emory Living Donor Coordinator, is not shared with anyone else (not even us), and is removed if you are excluded. We can’t begin to expresses our deepest gratitude and humility for anyone who considers becoming a donor. Thank you for your continued prayers as Will navigates this process.

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Feb 21, 2025

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Will’s transplant application appointment went well. The only thing they said he needed is a letter from one of his doctors to say he is medically able to receive a transplant from his perspective. Please pray we can get that approve and it is worded correctly.

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Feb 20, 2025

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Will has his really big appointment to apply for a kidney transplant tomorrow, Friday, at 7:00 AM. We will see numerous people including a transplant doctor. Please pray that his labs are excellent, blood pressure is great, no concerns arise, that we answer and say everything correctly, and that Will is approved to be a kidney transplant recipient. We appreciate your prayers!!!

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Feb 12, 2025

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We broke free just after 10:00 last night. Please pray for me as I’m returning to work with very little sleep over the last two days. Thank you so much for all your prayers!!!

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Feb 11, 2025

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The last three months have been pretty uneventful. He started getting good lab reports back and was doing well except for high blood pressure. His blood pressure started do better the last couple of weeks. We praise God for a good three months!!

When Will went to dialysis yesterday, they couldn’t access his graft. He was admitted to the hospital again to have surgery today. His potassium was too high for surgery to be safe (6.5). Treatments they did to lower his potassium made his glucose go too low this morning (59). His. blood pressure has also been very high (194/111). After many people have been praying for him, his potassium is down to 5.0 and he can have surgery. His blood pressure came down to 128/78. His glucose is up to 112. This was of two hours ago. Please pray things continue to stabilize and he can have the needed surgery. If things go well today, we might be able to go home tonight. Thank you for your prayers!!!

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SURGERY UPDATE:​

PRAISE GOD HIS DIALYSIS ACCESS IS FIXED!!!! Will’s surgeon decided to go ahead and try to clear the blockage out of his graft since his potassium came down again some. He was able to get it cleared without needing to out in a temporary catheter. If all goes well in dialysis, we might be able to go home tonight. However, we don’t know when he’ll be able to go for dialysis. He’s usually there for three hours. We hope we can go home tonight, but it might be tomorrow. This news we so good that I had to share it on its own separate post!! 😁😁 Will’s blood pressure is still quite high, so please pray that it comes down.​

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Nov 7, 2024

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​Praise God, Will is home!!! Dialysis went well Tuesday and his labs looked much better than they were when we got there Saturday morning. Please pray his graft stays open as we prepare to talk to the vascular surgeon about another surgery to creat a fistula in his other arm. Please pray that he doesn’t get an injury as he is on a blood thinner for the next couple weeks. Thank so SO MUCH for all your prayers, reactions, and comments!!! Every one of you mean the world to us!!!

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Nov 4, 2024

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Praise God, his surgery was a success!!! They were able to open his graft back up and did not have to put in a new catheter!! He will stay again tonight and go to dialysis first thing tomorrow morning. If it goes well, there’s a chance he’ll be discharged tomorrow afternoon. We need to know what the best next step will be to take for his dialysis treatments moving forward. Hopefully, we’ll be able to talk to his regular vascular surgeon before we leave. He wasn’t the one who did the surgery today. Please also pray for me as today was very difficult in leaving him to go to work. I’ll be doing it again tomorrow. We love you guys!!! update: Praise God, his surgery was a success!!! They were able to open his graft back up and did not have to put in a new catheter!! He will stay again tonight and go to dialysis first thing tomorrow morning. If it goes well, there’s a chance he’ll be discharged tomorrow afternoon. We need to know what the best next step will be to take for his dialysis treatments moving forward. Hopefully, we’ll be able to talk to his regular vascular surgeon before we leave. He wasn’t the one who did the surgery today. Please also pray for me as today was very difficult in leaving him to go to work. I’ll be doing it again tomorrow. We love you guys!!!

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UPDATE:

He will be having the procedure to try and clear out his dialysis graft sometime this afternoon. If the surgeon can’t get it cleared, he will place another permacath in his chest. That is how he got MSSA and Sepsis this summer, so we definitely don’t want that to happen. They will NOT create a new fistula in his other arm today. Another surgery will be scheduled if that needs to be done. I’ll update again once all of his doctors come through today and after his procedure.

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Nov 3, 2024

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PRAISE GOD FOR ANSWERED PRAYERS!!!!! Will’s potassium finally came down with a second dialysis treatment today!!! It is in the mid range of normal! He was just transferred out of ICU into a room in the renal (kidney) unit. He is eating like crazy today. Overall, he’s feeling better physically and mentally than he did when we got here yesterday morning. Thank you SO MUCH for praying for him!!! Keep the prayers coming.

The plan from here is to relax for the night and wait for his vascular surgeon to come see him tomorrow. There is a possibility that he will be taken into surgery tomorrow to try and clear the blockage in his graft. During surgery, the surgeon might begin to create a new fistula in his other arm. We don’t know what is going to happen yet, but those are the biggest possibilities. Please pray for his mood to stay as high as it is right now. Please also pray for my shoulder. It’s doing extremely well for being just six weeks after surgery, but I’m finding it’s becoming really sore in the later afternoon and evenings. I’m feeling really torn because I have to go to work and leave Will with his mom and the friend who takes him to his appointments for me. I know he’ll be in great hands, but I haven’t missed one of his surgeries or left him to go to work while he’s been hospitalized yet. I would stay with him, but I’ve already missed enough days to tend to his medical needs that I could start getting discipline notices from HR.

We thank each of you for your continued prayers and encouragement!! Enjoy the picture of Will fist-pumping and thanking God for his good potassium level while holding a sandwich.

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Nov 2, 2024

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Urgent Prayer Needed for Will: We are at the ER. His dialysis access is completely blocked and is pulling old blood. Please pray he can get it fixed today. Fixing it will require surgery.

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UPDATE:

Things have changed quickly. His potassium is high enough that it could cause cardiac arrhythmia’s. Given that risk, he has been admitted to the ICU. He’s having another catheter in right now so they can do dialysis shortly to try and lower his potassium. In the ER, they gave him three different medications to try and lower his potassium. I’m the ICU, they will closely monitor his potassium and cardiac activity. When they know that has stabilized and the risk has passed, he will be transferred to the renal floor for the rest of his stay. Unfortunately, the permacath had to go in his neck which really stressed him out. His most recent blood pressure was 181/113. His regular vascular surgeon will be back on Monday and will take over his care then. He will need another fistula revision and maybe another fistula created in his left arm early next week. Please pray that everything goes smoothly, his graft can be completely cleaned out, for his mental health as he is really upset by the constant medical issues, and for me as I have to leave him to go to work next week. There is a lot going on and things are changing quickly. We are both very overwhelmed today. Please check here or our FB pages for updates. Thank you so much for praying for Will!!!

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Nov 1, 2024

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Will update: Please keep Will in your prayers. Something doesn’t seem right. He’s been struggling with pain throughout his body, especially hips and legs, for a few weeks. Sometimes, it makes it hard for him to stand and find his balance. His kidney doctor ordered lab cultures to check for possible infection. Last night, he was feeling like he was getting a fever and said he felt like he was getting an infection. Tuesday, the dialysis clinic said that might be happening. He’s very tired and weak. He’s been experiencing constant pain in his stomach following a biopsy. That doctor’s office didn’t call me back today. He has been having error alarms during dialysis which may require surgery earlier than scheduled the week of Thanksgiving. Thankfully, his blood pressure, heart rate and respiration rate are currently stable. For now, we are staying home to prevent possible exposure to other infectious conditions at the ER. We will talk to the nurses at dialysis tomorrow and get their thoughts on what they observe.

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Oct 31, 2024

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Will’s procedure went well. The doctor didn’t find anything obviously wrong that would cause his symptoms. He did find a few things that he took for biopsy, but nothing that appeared to be a major concern. One thing biopsies could explain some of his GO symptoms. We’ve been praying for answers that explain why he’s been having so many consistent GI problems for about a year are found and they are an easy fix without long-term changes. Since his procedure, he’s been having stomach pain. Please also pray that this resolves. Thank you for your prayers!!!

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Oct 29, 2024

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Please pray for Will today through tomorrow. Tomorrow, he has a procedure requiring a prep which could cause him to go into adrenal crisis, a life-threatening emergency. By God’s protection, he’s never been through this emergency with me. Recognizing the symptoms and knowing when to call 911 is not something I’m confident in. Also, please pray for him to have strength and peace as he is on several restrictions during this time. It already has him very frustrated and feeling down because of everything he has to go through.

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Oct 25, 2024

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Urgent Prayer Need: Will’s ultrasound report of his fistula came back today. At least half of his fistula appears to be narrowed greater than 50%. This is why dialysis isn’t working too well. I’ve been talking with his vascular surgeon’s nurse all day. Even though tomorrow’s schedule has no availability to get another ultrasound and his surgeon is double booked for all appointments, his doctor is going to make sure he has an ultrasound and sees him in the office tomorrow. If tomorrow’s ultrasound confirms the narrowing, another surgery is most likely in his near future. The nurse said we should pack a bag in case he is admitted tomorrow to have surgery Saturday. I know this information will really upset him. Please pray that tomorrow goes well, no surgery is needed, and for him to take the news better than I expected.

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UPDATE:

Will update: God is SO GOOD!!! Today’s ultrasound showed the same thing as Wednesday’s and the surgeon could feel it working well enough through his arm. His surgeon said he can wait a few weeks for surgery so that I don’t have to miss work. However, if he starts having more alarms during dialysis or dialysis becomes too difficult, he will need to have surgery earlier. Also, if he isn’t having difficulty with alarms and dialysis is going well, we can cancel it until it becomes worse. For now, the plan is to schedule surgery for the week of Thanksgiving. Thank you SO MUCH for all your prayers!!!!! We LOVE how everyone continually comes together to support him!!

 

 

Oct 24, 2024

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Will saw his kidney doctor Monday. We’re praising God that Will has been looking good lately. His doctor is happy that his blood pressure hasn’t dropped too low causing him to pass out again. Thankfully, his nutrition is still okay even though he continues to have difficulty with eating full meals and GI upset.

Unfortunately, there were more concerns than positives this time. His doctor is concerned about the continued GI issues. She is going to compare his last few head CT’s to see if there is something in the part of his brain that can trigger his symptoms. She also wants to see the report from his upper and lower GI study which was rescheduled for the 30th. Will’s phosphorous has risen, so we need make sure he’s eating Tums. The calcium in Tums will block phosphorus absorption. She is also concerned and confused about his fluctuating blood pressure. It’s common for it to swing as much as 50 points in 12 hours. Because it’s so unstable, she told me to keep doing what I have been to manage it because he’s not passing out or staying at stoke level. Lastly, dialysis isn’t getting his blood clean enough again. She has increased his time on dialysis by 45 minutes a week. After a week of that, they will repeat labs and see how it effective it was. The concern is that, once again, there’s not much more she can do without going to extremes if this doesn’t work. Lastly, the dialysis clinic said he might have another clot in his fistula again. If he does, this will require another surgery very soon

Please pray there is no clot in his fistula, for his GI upset to resolve, phosphorus to be normal, blood pressure to stabilize, dialysis to be very effective, and for him to get an earlier appointment than expected for the next transplant application review. We truly appreciate you!!!

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Oct 14, 2024​

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Please pray BIG prayers all day for Will and his kidney transplant application process that begins right now. Old Red has been with him throughout his entire brain tumor and resulting kidney failure journey starting at eight years old. Even though he’s not having surgery today, we brought Old Red for good luck. There’s no reason to break a positive tradition and good vibes now.

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UPDATE:​

​Thank you so much for praying for Will today. From what we can tell, the appointment went well. There didn’t seem to be any earth shattering concerns. The doctor we spoke with said it’s good that this brain tumor wasn’t malignant. They took a TON of blood, 17 tubes!! Some of the tests have come back and have shown a little bit of improvement since he was tested for his vascular surgeries. We also spoke about everything involving a transplant and the process through many years after receiving a kidney. The next step is for us to have an appointment with many different people. We will see a financial advisor, transplant psychiatrist, social worker, dietitian, case manager, and so forth. That appointment isn’t expected to be until late December to early January. He may be required to do some more testing as well. Once that appointment is completed, they will take all of his information, documents, and testing before a large panel of a variety of people including many doctors. They will review all of Will’s information and determine if they will accept him into their transplant program. For now, we are praying that his precious tests and imaging in addition to futures tests will bring positive results for him to be approved. Please pray that he stays healthy and we can get to all of his scheduled appointments without conflicts. If you miss an appointment or are more than 15 minutes late, he may be removed from the program. For now, we just pray and wait.

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Sept 22, 2024

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Will and Wendy updates: Boy, have we had a crazy busy time the last few weeks!! As always, God has been faithful through it all. Will’s new fistula that was made with a graft is working well during dialysis. The surgeon said my shoulder surgery went well and that he expects me to have a lot of relief once fully healed.

We do have some prayer needs. The effectiveness of Will’s dialysis has room for improvement. We also need to find the right balance between how much he can drink and how much fluid they take off during treatments. This is very important in keeping his blood pressure from being too high and too low. We see his kidney doctor tomorrow and will talk about it. Please also pray the he stops feeling nauseous and dizzy. If he passes out again when he’s with me, I can’t do anything to help protect him from getting hurt as I have in the past.

So far, I’ve taken my pain medication just three times. This may be partly due to the nerve block not completely wearing off. There is a clear line from my shoulder to my fingertips where feeling has and has not returned. Thankfully, I can completely flex all five fingers and bend my wrist now. I couldn’t do that yesterday morning. I just can’t feel anything on the right side of my left arm. Those fingers are a little swollen and constantly tingle. Please pray that the nerve block completely wears off quickly and no permanent nerve damage has occurred. Please also pray for quick healing that completely resolves my symptoms. The surgeon did a lot in my shoulder, so I’m hoping it helps a lot.

Lastly, help with meals is a big need right now. There is a meal train that has been started for us. I truly appreciate any help with meals you would like to bless us with. I have no idea how long it will be before I can start cooking again, but it won’t be before October 1st.

We are very blessed to have such an incredible group of people to call friends and support us!!! Thank you for all you do, even if it’s just praying. We know prayer is powerful.

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Sept 19, 2024

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Prayers needed: Please pray for Will. He passed out in front of a store with nobody close by about 45 minutes ago. The friend he was with saw it from her car in the parking lot and rushed to his side. Based on his recent blood pressure readings and symptoms immediately before the syncope episode, I’m sure his BP dropped causing him to pass out. He has been taken to the hospital by ambulance. I’ll make updates on this thread.

8:00 Update

The doctor said his imaging is clear. She is just waiting for him to have repeat cardiac labs to be sure the elevated number stay the same or come down. Please pray his results come more quickly than anticipated. The doctor said the lab is getting a lot of orders and multiple machines are down. With my surgery in the morning, we are anxious to go home.

 

9:45 Update: Praise God for answered prayers!! His cardiac enzymes came down and we are now home!! Thank you for praying for Will!!

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Sept 11, 2024

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Will update: Will has been hesitant about choosing to seek approval for a transplant due to a previous horrible experience with one of the required medications. Today, we spoke to his doctor after she learned more about how it could be managed. PRAISE GOD, her information resolved his fears and he decided to move forward with applying for a kidney transplant!!!!!! A second huge prayer has been that he could have a transplant here. There was a chance we would have to move to Florida for a couple months. PRAISE GOD, it looks like he would be able to do it here!!!!! Please pray urgently that he is approved as his extremely complex and fragile medical history is a big hurdle that needs to be overcome. Please also pray that a donor can be found quickly.

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Sept 7, 2024

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Praises first. Will’s first dialysis treatment with the graft went really well. His surgeon is very happy with the result. Now that I’ve had time to process things, a huge praise became apparent. The original injury that caused the aneurysm occurred when his fistula was new. That meant the aneurysm that developed was thin and weak. Had the blow out that caused the 8mm hole (the size of standard bead in a bracelet) occurred then, it would have resulted in a life-threatening bleed that would have required emergency surgery and possibly a blood transfusion. I confirmed this with his vascular surgeon. God did not allow the blow out to happen until the aneurysm was strong enough to prevent a life-threatening bleed. PRAISE GOD!!!

Due to the graft being new, they have to use a smaller needle for dialysis again. This means his blood will not be cleaned as well which will cause him to feel worse until he can move up to larger needles. Will spoke with his kidney doctor during dialysis this morning. One topic discussed was transplant. Will is indecisive because he’s terrified of having to take the mega doses of Prednisone after a previous bad experience. He is adamant that he does not want high doses of steroids again. However, he has to take them for at least a week if approved for a newer anti-rejection protocol. He knows that without a transplant or a miraculous healing, there are no other options when dialysis no longer works. The good thing is he did say he’s not ready to give up. Please pray that God will give him supernatural peace about the right decision and for our family and friends as we support him in his decision. Please also pray that his kidney doctor is able to successfully contact the transplant coordinator at Mayo Clinic. She has been trying, but they have not called her back. Mayo is where the new anti-rejection protocol that doesn’t require months of mega doses of Prednisone is. Please also pray for me as all of his care is becoming complicated at start of my busiest months of the school year.

As always, we truly value and appreciate all your continuous prayers, support, and messages. We are honored that God has surround us with such an incredible community of support!!! Words of thanks can never be enough!!!

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Sept 5, 2024

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Please remember to keep Will in your prayers tomorrow through the weekend. We will check in for his surgery at 12:00 tomorrow. The surgery will remove a pseudo aneurysm (like a vascular aneurysm, but the wall is made of scar tissue and blood clots) and to close the very slow bleeding artery. He will be admitted for the night and hope to be able to go home Saturday. I’ll update after his surgery and again after we talk to the doctors Saturday.

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Sept 5, 2024

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Please remember to keep Will in your prayers tomorrow through the weekend. We will check in for his surgery at 12:00 tomorrow. The surgery will remove a pseudo aneurysm (like a vascular aneurysm, but the wall is made of scar tissue and blood clots) and to close the very slow bleeding artery. He will be admitted for the night and hope to be able to go home Saturday. I’ll update after his surgery and again after we talk to the doctors Saturday.​​​​​​​​​​​​​​​​​​​