Noet's Kidney Transplant Journey

You may know me, but in case you don't, Hi, I'm Noet. I have a long story, and it ends in me being in end-stage kidney failure, but in case you are curious about the origin story, tune in.

In 2019, I woke up and couldn't easily move my arms and legs, and it felt like my back was collapsing in on itself. It sounds dramatic, but it was a terrible pain. I was taking what felt like bottles of pain reliever to get me through the day. It took a couple of weeks, but I finally got into a doctor who immediately ran a ton of tests, and it came back positive for lupus. If you are not familiar with lupus, it is an autoimmune disease that makes your body's immune system attack its own healthy tissues and organs. This attack causes inflammation and can cause damage to parts of the body, including the skin, joints, kidneys, heart, lungs, and brain. After many trials and errors with meds, I finally had my lupus under control for a couple of years. Then I found out there was a treatment that I qualified for that was supposed to mean I only had to get infused every 6 months! I had gotten infused on 9/7/22, and I felt horrible! Turns out they didn't test me before infusing me. My immune system dropped to the lowest (that is what the medicine is supposed to do), and it turns out, I had gotten COVID. Just like that, I crashed my kidneys. I gained 63 pounds in fluid that my body couldn't get rid of. I ended up doing 7 sessions of CHEMO after I had spent a week in the hospital. Chemo SUCKS! The rashes, the sickness. All of it. I finally got to go home. Fast forward a bit, Wyatt and I were sleeping one night, and I woke him up by having a seizure. The ambulance came and left, and my blood pressure was so high I had another grand mal seizure. The 1-2 weeks after that were a blur, honestly. Since then, I have been in and out of the hospital with small TIAs, high blood pressure, low blood pressure, lung issues. Some nights it was so hard to breathe I was scared to fall asleep, and when I finally did, I was hunched over a laundry basket and pillow so my lungs could expand. Fast forward to April of this year, I was at work when I had another 2 seizures. I was transported to the hospital and was told that I was going to die unless I started dialysis. My heart broke. I fought so long to keep a normal life, and dialysis is anything but a normal feeling. Can't go anywhere without a machine, having to have a stomach port! I did it, under the conditions that I got to do peritoneal dialysis. They put the port in and started using it the same day (THAT IS NOT USUAL). So now I am able to do dialysis at home 7 nights a week. I have been working full-time without fail other than the days I have been in the hospital. I am extremely fortunate and blessed. I have an overwhelming support system, and I am so loved. My personality is very much "I'll do it myself," so I'm really struggling with asking for help, but the truth is, I need help. I just got accepted for a transplant, and we are in the end stages of all of it. They gave us a quote of what we need to be prepared to pay upfront out of pocket. Roughly $6000 for the housing that we will need, and $3-$4000 to pay for the 1-3 months of anti-rejection drugs I will need in order to be discharged from the hospital (They won't let you leave without buying them). I have insurance, thank God. But this year, due to my company changing and the insurance changing mid-year, I have to pay 3 different deductibles. I am doing my best, but it's a challenge. I am so grateful to anyone who has made it this far in my story. I have been beyond blessed with the kindness and support of everyone around me, whether it's hearing me whine or making me feel like I'm not a burden. I'm so lucky for my village. Prayers are also accepted. I'm a little scared of what the future holds. With so much love! Noet

update: you guys I’m so overwhelmed, and thankful. This has been my biggest stressor and I’m so appreciative of all of the help.

I have been trying my best to hold it all together and just do the best we can with things but financially it’s difficult. I feel this upcoming surgery (will be a surprise on timing) is going to take a lot out of me and my family as I will need a lot of support. But I feel so loved with all the lovely messages and prayers, it means more to me than you could know. I’m am so blessed to have a community of people who are willing to take a second out of their day to pray for me!

i love you guys!