Brandan was diagnosed with end stage renal failure due to FSGS almost 2 years ago. It was a huge shock. He is currently on dialysis three days a week.
He had to take medical leave from his job because it is very physical. He is receiving SDI for a few more months and just started receiving SSA disability, but it is a lot less than he was receiving while working.
I've had to miss work to help him as well as dealing with some health issues of my own. Even though we've been together over 5 years and live together, I do not qualify to receive family medical leave disability because we are not married.
Brandan and I will have to drive down to San Francisco as we live 5 hours away to the north in Humboldt County. We will have to pay to have our dogs boarded, cover for missed work hours, co-pays, the gas to get to SF, food, the hotel in San Francisco by the hospital during recovery, bills, and all the follow up trips down south after transplant.
We know everyone is tight on money, but if anyone could donate during this time, it would help figure out a few things for us. It would be a wonderful gift. Any help would be so appreciated. Thank you so much friends and family! ❤
Here is Brandan's story.
I've always felt tired. I just thought that's how things were. I worked physical jobs. I always started my day sleepy and ended my day exhausted, it was just my normal.
In 2016 I was in the process of obtaining my CDL for work. I had passed all my written tests but had to pass a medical exam as well. It was during that exam where the doctor said my resting blood pressure was over 200!
I was given blood pressure medication and lab orders for a blood draw and told to check in a month later to see how I was adjusting to my new medication. Well, later that week I noticed a missed call and voicemail from the doctor's lab. I've never had a doctor's lab call me before, I knew something was up.
One day I'm fine and the next the doctor tells me 74% of my kidney function is already gone and I’m severely anemic ( a significant loss of red-blood cells). By this time, I had started feeling worse and worse. Out of breath doing simple things, shaky, and my mind was foggy a lot of the time. I could tell my body wasn’t right. My blood was toxic and it felt like it.
You classify the progression of kidney disease by the GFR ( Glomerular filtration rate). There are Five stages or ranges of GFR. By the time I found out I was sick, I was already at Stage Four of Five of Chronic Kidney Disease. Stage 5 being End Stage or total failure of the organ.
I got a lab print out of all these numbers in different categories and all of them either had a H or L next to them, indicating they were High or Low. None of them were in normal ranges. I hadn't realized how bad I had been feeling. Your body adjusts over time. This had been an unknowingly slow decline over many years.
With a GFR of 26, I was sent for more lab tests than I care to remember and soon I became acquainted with every phlebotomist in Humboldt county. They couldn't figure out what had made an otherwise healthy 22-year-old experience organ failure. In the end I had a 7-inch needle inserted into my kidney for a biopsy.
The results came in that I had a disease called Focal segmental glomerulosclerosis or (FSGS) for people who don't speak in tongues. Basically, my kidneys attack themselves and cause scaring and over time severely damage the function of them. My doctor said the scaring appeared to indicate that I've had this disease for up to ten years without my knowledge.
As you could image that was a huge shock to me, Cindee, my brother and sisters, mother, father, friends, everyone. I really didn't want to feel it for a long time, I still don't want to. It's been crushingly hard at some points over the last two years through this time. For every bad time though I've had Cindee there to remind me of the good things and help to keep my head afloat. My family has also visited and always been a phone call away. I’m thankful for them as well and for my close friends, you know who you are.
From the biopsy I was started on the standard course of action for many FSGS diagnoses. I slowly got my blood pressure under control through a trial of medications and started taking an immunosuppression drug as a chance to try to stop damage from progressing even more in my already very damaged kidneys.
I was put on a high dose of prednisone (steroids) that made me gain 50lbs in two months in water weight! After two trials of that, it was found that like many with my condition, I was steroid resistant and the drugs did nothing to help slow my progression. I was glad to be off that medicine though because the side-effect were awful!
Over the next year I slipped from a 26 GFR to 24, 18, 17, 15, 13, 8...
I got surgery on my chest and had an ash catheter inserted for hemodialysis while my fistula I had created on my forearm matured over the next three months. I currently go to dialysis 3 times a week for four hours. They now use my fistula, 15-gauge needles and all. Every time is Russian Roulette if it will infiltrate or not, and it usually leaves me feeling worn out and tired even though to the next day if I got a lot taken off of me.
Moving houses after a dialysis session wasn't realistic so I had to take a step back from my full-time job with my company. Even before I had to quit working I had started getting slammed by tens of thousands in medical bills. If you can image, this has put me in not the best financial situation. I had a 750 credit score before all this. Haha.
Flash forward to now, my big sister who has decided to obtain the biggest leverage on her baby brother yet by offering him her KIDNEY is soon going to fly to San Francisco to give me a second chance at life. Words cannot describe how that makes me feel and I don't know how to even begin to wrap my brain around all of this that has been my reality these last few years really. I just take it one day at a time every single day I’m still here.
This trip to San Francisco will be a life changing one. That city has been the background for those events in my life before so it seems only right to revisit it again. Unfortunately, it is not the cheapest place to undergo this and it would help tremendously if we could get assistance from ya’ll covering the burden of this hardship we’ve been struggling to get through. Thank you guys for everything. Just for being there for us.
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