October 16, 2019
For any questions, ANY regarding living kidney donation or the process I'll list the contact info below. They can answer questions about health concerns, financial questions, paired exchange program. This is a team dedicated solely for living donors. This is separate from my transplant team to allow privacy for the potential donors. I won't know about any call or testing unless you personally want to share with me. This is also the contact info to get started on testing to see if you might be that perfect match as well.
ROSA PEREZ 602-521-5887
[email protected]
Living donor patient care coordinator
MADELYN RUOCCO RN 602-521-5843
[email protected]
Living donor transplant coordinator
October 16, 2019
October 26th, 2019
TRANSPLANT UPDATE:
I heard back from the nurse and the schedule coordinator. I'll have my final tests of a pelvic CT scan, echocardiogram, EKG and chest xray on October 21st. They have decided for now to hold off on the heart cath with the contrast dye and I may not have to do this until I get closer to needing dialysis. The insurance has approved testing. If everything goes smoothly I should be on the transplant list mid November.
The application to start the medical fundraiser has been started and should be up this next week. I've invited everyone to a Facebook page set up by my son and his girlfriend to help spread my story. Please accept the invite and help us share! This is definitely a step in the right direction!
https://www.facebook.com/groups/findjennyskidney/
October 16, 2019
September 29th, 2019
TRANSPLANT EVALUATION UPDATE:
Another weekly update for my journey to try and find a living kidney donor before I get on dialysis. I'm learning some new information along the way. I am blood type O+ and I knew that anyone with O+ or O- could donate directly to me, but I also learned that some people who have blood type A can donate directly to me as well. Have you seen my story and wanted to get tested as a donor but not sure about your blood type or that we might not match? If you contact the living donor team on my behalf you can get your blood type done. There is also a program called Paired donor exchange for other blood types. See the attached picture for information. If you are unsure or just want to learn more they are there to help. There are resources to help out of state donor too!
I had been waiting for the prior authorization from the insurance on a few heart tests. I heard from a financial coordinator about 10 days ago that those authorizations had been retracted because I didn't need them. That was exciting because I could quickly finish up my testing. I heard from a nurse on Tuesday that she was new to my case and was waiting to get medical notes from the surgeon appointment to see what testing I needed. The surgeon decides what testing I need. She called me back Friday afternoon and said that I needed a scan of my pelvis area to see the area in which a new kidney would be placed, echocardiogram and a heart test to look at the arteries and health of my heart. This is the same test that they retracted from the prior authorization because they said I didn't need it, but apparently now I do. So we are now starting the Prior authorization over again that takes at minimum 2 weeks to hear back. The echo test they want to give me 2 small doses of contrast dye that may lower my kidney function even more. I'm concerned about the dye. The nurse will call back Tuesday with an update.
I had my final disability hearing to interview a medical expert about PKD, but he was not ready so I'll know more in a few months.
In the meantime I'm trying to keep myself as busy as I can. I spent some time tending to my plants that needed some love, getting some much needed sleep and some coloring.
My son and his girlfriend are setting up a facebook page to share my story and continue my search for a living donor as you never know who will match. They are also setting up a fundraiser medical page where an organization manages any funds raised and we would submit any medical bills we have. Please help me share my story and raise awareness for PKD and being a living donor.
Thank you to everyone for the continued support, love, prayers and well wishes!
October 16, 2019
September 18th, 2019
TRANSPLANT EVALUATION UPDATE:
Last week I met with the dietician, finance coordinator, social worker and surgeon along with Harry Dennis and Kiara. Tomorrow I have my final Social security disability hearing. There is some concern over my insurance benefits and Medicare vs Obamacare that we have. The surgeon agrees to remove my kidneys if I end up on dialysis before I find a donor or once I stabilize after a transplant. The insurance approved the transplant but denied the heart testing to get on the list so they are still messing with that. It's frustrating to wait to get this testing done. Last week they found a lump in my breast and once I had the ultrasound it was a cyst. PKD causes cysts in the kidneys but can cause cysts in many organs. I also have them in my liver. It's not causing issues right now so likely nothing will be done. Started my labs but still have a bit more labs to do.
I also learned that although I'm blood type O I can accept a direct living donor from O positive or negative and some people who have blood type A can donate to me as well.
There are financial resources to help a living donor if this is a concern for anyone interested. If you have any questions please message me.
Please continue to help my family and I share my story in search of a living donor. I'm looking forward to doing more dog rescue volunteer work and returning to social work and I'm hoping a transplant will improve my quality of life.
October 16, 2019
September 5th 2019
Transplant evaluation update:
Finished dental clearance today. Mammogram done. Next Thursday and Friday will meet with dietician, financal coordinator to figure out insurance, social worker and the surgeon. I'll have a bunch of labs done, ECT, stress test, chest xray. Possibly need clearance from cardiologist but not likely.
Hoping the surgeon agrees to remove these kidneys that have caused me pain for so long.
Im still feeling hopeful to find a living donor before I need dialysis. I miss being a social worker and I can't wait to spend more time volunteering with the dog rescue :)
October 16, 2019
August 21st, 2019
It's that time! Over the past few years my kidney function has dropped and I've hit 20% function. I've been referred to Banner Good Sam to start testing to get on the transplant list. I'm excited and hopeful for this next step of my journey.
The education class on Friday is to learn about dialysis and transplant. If anyone would like to attend or wants more information about being a living donor please let me know.
