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Brian's Kidney Transplant Journey

$4,570 of $15,000 goal

Raised by 46 people in 11 months
Created February 12, 2018
Jessica Burch
on behalf of Brian Armstrong
As many of you know, my brother Brian is battling Stage 5/End Stage kidney failure.


In February 2016, at the age of 23, Brian started feeling ill and when he started having blurred vision, his eye doctor directed him to immediately go to the hospital. A bit confused he (thankfully) followed their direction. Upon arrival he was informed that his blood pressure was dangerously high.  Once admitted he was placed in ICU so that they could closely monitor him. They begin a very intense round of medication and testing including a kidney biopsy.  

In the midst of this very scary and uncertain time, Brian continued to remain calm (at least on a surface level….because he didn’t want us to worry) and tried to keep a sense of humor.


By this point…he was going stir crazy!

Finally a kidney specialist met with him and informed him that he was being diagnosing with IGA Neuropathy; a condition that typically has little to no symptoms and can go undetected for decades. They believe that Brian started to develop this condition when he was 12-13 years old.  Once he was stable, they determined that his kidneys were functioning at 8-10%. They decided to try and maintain him at this level with medication and diet for as long as possible…

Nearly 5 months to the day, and just 2 weeks after his 24th birthday, Brian was back in ICU.  Once again they were able to get him stable, but the discussion of dialysis and the need for a transplant in the future began.

In November Brian was admitted again, this time his kidney function was estimated to be 2%.


Over the next two weeks he prepped for and underwent surgery to have a catheter placed for peritoneal dialysis. Once placed he had to go through training classes to teach him how to safely connect to his catheter and machine… all while once again trying to keep his sense of humor.


Brian’s girlfriend Ashley posted “Today is the day to turn one page forward into a new chapter of health”

Though this was not the outcome we wanted, we were tired of seeing him suffer and were hopeful that with dialysis that he would start to feel better.

***********************************************************Fast forward 6 months, with great excitement my husband and I sent in applications to be a living donor. Did you know you can live with ONLY one kidney! They choose to test my husband first…he got to the very last specialist and was denied! We were devastated; he had made it so far. As planned I was the backup and my extensive testing began.  In early December 2017 I was denied, but being my usual convincing, sometimes pushy self, I was able to get the donor team to agree to a 2nd opinion.  Once again I was denied. They did not like my family history.

***********************************************************

SO here we are in 2018, nearing the 2 year anniversary of his life changing diagnosis. We are trying to remain patient and positive. I know there is a bigger plan in play than what I can even begin to understand. Now we wait. We wait for someone else to come forward to be tested to be a living donor…or we wait until someone passes who is a match, who chose before they died to give the best gift of all, someone who chose to give the gift of life. I pray daily for my brother, and I also pray for the person who will change all of our lives. I can only try to imagine the weight of such a gift and the gratitude we will all experience.  

Currently Brian is on our dad’s insurance. His out of pocket annual deductible is currently $3,500.00. He reached his out of pocket max in 2016 and in 2017. He will max out early in 2018, but in July he will turn 26 and will have to start on his own insurance. He will then face meeting another high deductible mid-year.

 With his current insurance plan, his dialysis alone is costing nearly $500 PER DAY and his medications are roughly $100 per month.  There are also the costs of; regular office visits, extra lab work, sick visits, missed work, and the unpredictable short stays in the hospital when his body throws a curve ball. All funds received will help ease the burden of this awful disease and allow Brian some financial stress relief.

Will you do me a favor today?  Will you share this story? Will you help me help my brother? There are people in your circle that can relate to this even if you don’t know it. We kept this very quiet as a family until we all had a chance to process and accept where we are in the journey. I now wish I would have told this story as it unfolded in real time. Will you help us?

If you are interested in learning more about being a living donor you can visit:  
https://www.carolinashealthcare.org/medical-services/specialty-care/transplant/kidney-pancreas-transplant
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Update 6
Posted by Jessica Burch
6 months ago
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Check us out on Fox46 (WJZY) tonight at 10pm with Brett Baldeck. I will share the link when it becomes available. We are so grateful for this opportunity!
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Update 5
Posted by Jessica Burch
6 months ago
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Im a little late on my update #life

Brian went to see the surgeon on Friday to evaluate his catheter. The surgeon has opted to leave it as is, for as long as it functions properly for dialysis and remains clean. He does not want to risk an additional surgery before transplant. We are all comfortable with that decision.

***Crazy yet exciting news***
A dear friend of mine wanted to get Brian's story exposed so he contacted several local news stations today and within minutes, one messaged him back and wants to run it! More details to come :)

Once again, THANK YOU. Thank you for following our story. for the kind words, the prayers, the gifts, and for sharing.

Brian Needs a Kidney
Blood Type: A +
Charlotte NC
If you want to learn more about being a living donor,
Contact Tania F
CMC Donor Nurse Coordinator
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Update 4
Posted by Jessica Burch
6 months ago
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We are 2 weeks away from Brian's 26th birthday. Though we are grateful that he will be here with us we are a little bummed that he is still waiting on a kidney. On July 8th he will be kicked off of our dads insurance and will have to pick up his own from his company. That means mid year he will have a new deductible to meet, a new out of pocket max to meet, and a new monthly payment to make.

He never wants to worry us but he cant hide his stress well in person. Friday my dad and I went to cut his grass, physically he wasn't feeling great, emotionally hes aggravated and tired of living a limited life, and mentally he is stressing about his financial future.

Saturday night when he went to hook up to his dialysis machine part of his peritoneal sleeve/catheter came out further than it was suppose to. After talking with the on call nurse he was instructed to do his dialysis for the night and head to the ER first thing Sunday. We where at CMC main for about 3 hours before being discharged and referred to his specialist. He went in today (Monday) to the nephrology office and now has a consultation apt for Friday morning for a surgical consult. We expect he will need to have surgery to replace the current catheter in the next week or two. Until then, we are all back to work and anxiously awaiting for "the call".

This GoFund me has helped him pay off past (piling up) medical debt and I pray that it will continue to bless him by easing his recurring medical debt. If you have donated we can not thank you enough! We ask that you please share his story. Just talking about it to strangers I am amazed how many people have someone they love who has been through this.

Brian Needs A Kidney
Blood Type A+
Charlotte NC
Want to be a living donor? Contact Tania
704-Three Five Five-8817 CMC Donor RN Coordinator
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Update 3
Posted by Jessica Burch
8 months ago
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I’m not even sure how to start this update. I can tell you that we have been on a roller coaster of emotion in the last 24-48 hrs.

On Sunday, May 6th around 4pm Brian got ‘the call.’ The transplant team had a match, but there was a catch. The patient was a pediatric trauma patient that they had not been able to save. Brian would be getting both pediatric kidneys instead of just one adult kidney. We didn't even know that was a thing!

At 4:05pm Brian called me and said, "Hey we aren’t going to be able to go to the Checkers (hockey) game Saturday night." I said, "What? Why? They won last night!" Brian said, “Well I just got ‘the call.’” This set everything into a whirlwind. He was leaving work in Charlotte, coming home to Gastonia to pack his bag, and needed a ride. My husband and I jumped up, closed up the house, and headed to meet him at his house.

By 6pm we were admitted to the hospital and the testing began. Brian was given a room, a gown, and a list of tests that would be performed to confirm that he would be able to undergo surgery in 12 hours.

The surgeon came in and explained to us that one young kidney was not big enough for him, but that there is a procedure where they sew (pair) the two kidneys together before inserting them. These kidneys will continue to grow over time, which is great because it allows for more volume. The surgeon also told us that Brian isn’t at the top of the transplant list, but this type of transplant is not for everyone, but fit his case perfectly. The surgeon would receive the kidneys between 4-5am Monday and he would first sew them together and test them to make sure they were operational as a pair. If all went well, we were set for surgery at 6am.

Sunday night Brian has a chest x-ray, an EKG, several blood draws, and an antibacterial bath required for surgery. By 10pm we just waited. No one could sleep. By 4am we were excited, but nervous. Brian was just wrapping his head around "this is happening" when the nurse came in and said "I’ve got some bad news." My heart drops as I write this, but there was an abnormal aspect to the anatomy of the kidneys that would not allow for them to be sewn together. There would not be a transplant at this time. Apparently this is not uncommon, that until the surgeon has the organ in his hands they can only assume that everything is “normal.” We were, and are still devastated. In a 12 hour period we went from a level of excitement that I cannot begin to explain to absolutely crushed.

Brian was one hour from surgery. ONE HOUR. He was still hooked to a dialysis machine, with nearly 6 more hours to go before it was done. Now we waited for the surgeon. Around 9am he came in and explained to us why it couldn't be done, drew us a picture, and he was gone. Even though we wanted to know the why, it didn't exactly lift the fog.

The events that followed made this situation worse. There were a few misses at different levels. First, they took too much fluid out through dialysis and low blood pressure went unrecognized in addition to a nurse giving him blood pressure medication without checking his vitals, which sent him even lower. It began when they set the dialysis machine to do a full cycle, even though Brian hadn't had a normal day of food or fluid intake the day before. Brian has been doing this long enough that he could tell he was becoming dehydrated and that he didn’t need to run a full cycle. He stood up to bypass the next cycle and nearly fell. He was lightheaded and knew that his blood pressure was low. I called the nurse for a blood pressure check. He told me that his early blood pressure check had been low, even before the nurse gave him blood pressure medication, which sent him further down. Bouts of dizziness, fatigue, nausea, and vomiting followed; all of which contributed to him having to stay for the remainder of the day unnecessarily. Finally close to dinner time he was released.

My husband and I went by to bring Brian and his girlfriend dinner and just to check-in on them. We are all physical and emotionally exhausted. Today we all returned to work, hoping to return to a sense of normalcy. We need our sick time and PTO for the next time Brian gets ‘the call.’
Please send us all the prayers and good vibes you can this week. I can’t describe the feelings I’m experiencing today, but after it all, I will do it 10 more times if I have to until the right donor is found.
Thank you for continuing to follow our story.

If you or someone you know is interested in being a living donor please contact Tonia Feemster at 704-355-8817
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$4,570 of $15,000 goal

Raised by 46 people in 11 months
Created February 12, 2018
Jessica Burch
on behalf of Brian Armstrong
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