Amanda's PKD Fight

$10,510 of $13,000 goal

Raised by 113 people in 61 months
Amanda is a wife and mother to two young children and a stepson she raised from infancy. She is always taking care of others even when she is not well.

Amanda's illness has progressed to stage 5 (end stage). She has only 15% of her kidney function and is currently consulting with the dislysis unit and transplant center as both will be needed very soon. She has very strict dietary needs and must visit the lab for blood work every week and takes numberous medications.

Amanda needs help with all of the medical expenses associated with treatment. Due to her illness she has not been able to work for nearly a year. Her husband broke his collarbone and was not able to work for 5 months. They had to use all of the funds in their savings. There are a lot of expenses that are not covered by insurance including travel to doctors and labs, prescriptions medications and soon there will be more. There will be expenses associated with dialysis that are not covered as well as the transplant.

Amanda was diagnosed at age 16 with Polycystic Kidney Disease, a genetic disease that has claimed several members of her family. She developed high blood pressure from the disease at age 20 and has been on medication to controll it since. Her preganancies were very difficult due to the PKD and she was on bed rest with both. Her son was born 10 weeks early due to complications.

Amanda's mother, aunt, grandmother and uncle have all passed away from complications caused by PKD. In addition to the physical suffering, this contributes to her emotional suffering. She is determined to win this battle for her family.

Her goal, when she is well enough is to start a non-profit to increase awareness of PKD and how many people it impacts. More than 600,000 people in the US have it and very few people know about it. There is no cure. The only treatments are dialysis and transplant. The disease causes so many health issues including pain, exhaustion, brain aneurysms, swelling, enlarged abdomen, itching, nausea, kidney stones and so much more. The hardest part is that people don't understand the suffering that PKD patients endure even thought they may look ok.

Please help Amanda win this fight so that she can be there for her children and her family and can continue to fight for others affected by this disease.
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I have been quiet for a while as we have been in fight mode. The good news I saw my new kidney is doing well and I'm so grateful for that. On the medical side of things I have been dealing with the pain and sickness from cyst bleeds from my natives. There was some blood pooling in my stomach that has subsided. The left kidney is constantly hurting these days. They believe my ongoing stomach pain is from scar tissue that has attached to my colon and stomach wall. The surgeons are on hold to take out the beasts. That's where our main fight is right now...Social Security and Medicare. We filed the appeal and are waiting for a hearing date. We also filed the request to continue benefits. Due to an error on their part there was a "delay" in that. We have been going back and forth as they try to sort it out but we are getting the runaround. This means I haven't received disability and they expect us to pay over $500 in two weeks to continue Medicare. In addition they are claiming an overpayment and we are being flooded with bills they won't pay as far back as August. This fight has been hard but we won't give up. We have come this far and will do everything we can to ensure we protect the precious gift I was given. Please continue to send us your prayers and positive vibes.
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I haven't posted in a while because I've been so busy enjoying my new life. Today marks 7 months since my transplant! My new kidney is doing fantastic. I'm on a couple less meds, go to the lab once per month and go to the clinic every three months. Life is good! My beasts are starting to act up more unfortunately and my liver is chiming in, but I've built up a high tolerance for pain over the years. The plan to remove my beasts and resect my liver is on hold while we deal with insurance. Turns out they don't like paying for all of this. Lol. Go figure! So for now I'm waiting until we figure out how to cover increased premiums and out of pocket costs and/or find a supplemental insurance company that will accept me. I'm so fortunate to have a great team at UCD figuring out how to help with meds. My co-pay will jump and I'll have a new deductible in January so they are submitting for 3 month supplies, etc. Thankfully my decision to do the study drug means my most crucial and expensive one is covered by the research department. That's a relief! Through all of this I still feel amazing and blessed. I'm alive, feeling great overall and can do so much more than I have in years. I know we will get through this bump like we have all the others. I'm so grateful for to be living life again and being here for my family, and for all of the love and support I've been given. ❤️
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Thank you all for your continued support and prayers. You have all been an enormous blessing for our family. I continue to make great progress. I still have a long road ahead but I'm just happy to be on it. The transplant and subsequent surgery were very successful. Next week I will have a biopsy on the new kidney so they can look at in on a cellular level. At the end of the year when my immune system is higher I will have both native kidneys removed. This will be a very big surgery as they are very enlarged and full of cysts. However, I will take it head on like everything else with my army of friends and family behind me. In the meantime I go to all of my transplant clinic appointments, lab appointments and religiously take my medications. There are a lot of medications and some food and activity restrictions. I have to be. Dry careful with my suppressed immune system. It's a small price to pay for this amazing new gift of life. My family is so happy to see me returning to my former self. I still have to pace myself but it's so hard when you've spent years being sick and in pain...I just want to jump back in! Our eternal love and gratitude to you all for helping make this happen. ❤️
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Our deepest gratitude to everyone for their continued support. Today was a big day as we spent 4 hrs doing pre-op meetings and tests. There was a lot to absorb. Everything is on track for Tuesday. Today left me pretty tired and sore, but happy that we are almost there. I still can't believe I got my miracle!
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$10,510 of $13,000 goal

Raised by 113 people in 61 months
Created June 20, 2014
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JG
$50
Jeanne Garayoa
7 months ago

Thinking good thoughts for you and your family.

GP
$100
Gil & Nancy Palmer
9 months ago
EC
$50
Eileen Cox
9 months ago

Love

DL
$75
Diane Lyons
19 months ago

Let's get those beasts out of you!

$200
Janet Larrucea
19 months ago
$100
Lyn Baker
19 months ago

MERRY CHRISTMAS❣️

JG
$50
Jeanne Garayoa
19 months ago

Wishing you well Amanda

$50
Alice Cox
19 months ago

Happy HolidaysLuv You!

DL
$50
Diane and Walt Lyons
23 months ago

We love you!!!!

CF
$100
Clarissa Fleming
23 months ago
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