Bring Amber Home for Life-Saving Dialysis

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Bring Amber Home for Life-Saving Dialysis

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Hello, my name is Amber. If you're reading this, just know this is so far out of my comfort zone it is not even funny. The past couple of months have flipped my family's lives upside down. I am going to share a bit of my story and what has led me to make this in the first place.

On March 6th, I went in for a dental visit and my blood pressure was running high. My dentist advised me to get to a medical doctor ASAP, so I did. The next day, on March 7th, I went to my family doctor where my blood pressure was still very high (190/110). At that time, I was put on blood pressure medication and had bloodwork done. The next week, on Tuesday, March 11th, I got a phone call advising me to go to the emergency room because my bloodwork indicated I was in kidney failure. Scared to death, I packed up and went to the ER, but I was sent home. My bloodwork indicated my kidney function had declined and my blood pressure was still really high. They set me up an appointment with a nephrologist and advised me to keep that appointment. On Monday, March 17th, I went to the nephrologist and they ordered all kinds of testing, but I did not make it that far. That same night, I can only explain it as I felt like I was going to die. My mother-in-law drove me to the ER where my blood pressure hit as high as 248/120. Nothing was bringing it down. I felt worse than I ever have and I just almost felt it in my body that my time was here. Thankfully, the emergency room doctor told me that if I wasn't going to be admitted for my kidneys, he was going to admit me as a cardiovascular patient into the ICU. I truly believe this saved my life that day. My blood pressure came down but the question remained: what is going on with my kidneys? After a 3-day stay in my local hospital, I was sent to a bigger hospital to have a kidney biopsy done. My eGFR was 24 on initial blood work and fell to 17, then to 15. My kidney function kept getting worse and worse. My ultrasound was normal. I was released from the hospital after a week-long stay on March 21st. That Tuesday, I followed up with nephrology and I was given results from my kidney biopsy that have changed my life in every way imaginable. I was diagnosed with largely chronic crescentic glomerulonephritis and severe arterionephrosclerosis. I was told I had to start dialysis immediately. What I have is rapidly progressive and there was just no stopping it. I had to have a chest catheter placed because I was told I did not have time for a fistula arm access to be placed and healed. Without dialysis, I had less than 3 months. Dialysis has changed my whole life. It has made me miserable, but it is keeping me alive. The whole point in sharing all this is because I am trying to come home to start doing dialysis. It is supposed to be easier on your body and I have a 15% higher chance of getting a kidney transplant! I just had my fistula placed in my arm on May 15th for access through it and will eventually be able to have my chest catheter taken out. My husband has been my rock through all of this. I am only 32 years old and I don't think either of us saw me getting sick. He can take FMLA, but because he is not the one sick, he cannot be paid for it. He has juggled my medical needs, our children's needs, his needs, a full-time job, and just everything else these past couple of months. Our expenses have gone up but our income has stayed the same. Coming home to do dialysis will be life-changing for my whole family at this point. I am only asking for support to get us through a month so Aaron can take off work and come train to help me do dialysis at home. It will greatly lower the burden on me and him. Our children are exhausted and we are exhausted. This has mentally just taken a toll on us all. I have strayed from asking for help and I'm trying to hold it all together, but I am struggling. Being home with my family is important to me. If I had another option, believe me when I say I would have done that first. We really just need help right now.

UPDATE: Thank you so much to everyone who has helped my family! Our youngest daughter has broke her leg now and also is going to need round the clock care! We have been able to get Aaron on leave for at least a week now!

Organizer

Amber Carney
Organizer
Parksville, KY
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