@rickgc, I am happy to hear from you. I am sorry that you have more confusion about your test results, and also the new medications. I think that the questions that you have asked me, should be directed to your nephrologist. He/she will be able to put this all into perspective for you. - and that should include how this all fits in with your CKD.

Here is information about ferritin testing.
https://www.mayoclinic.org/tests-procedures/ferritin-test/about/pac-20384928

Did you have your appointment with your nephrologist? Or are you still waiting for it?
Rosemary

Hi @rosemarya Thanks for the welcome! Congratulations on your 8.75 year anniversary! 🙂 I can't believe it's already been 8 years for me and my brother, who selflessly gave me one of his kidneys.

I was diagnosed with Berger's Disease when I was 20. (I got food poisoning and my primary care doctor wanted me to go into the hospital for tests. All he told me was I had some questionable blood work he wanted to check further.) I was lucky in that I was able to keep my own kidneys until I was 50. I was told by my nephrologist at the time (we had moved to a different city for my husband's job) that it is extremely rare for someone to have working kidneys for 30 years after diagnosis.

Lodging for the transplant patient and 1 caregiver. You have to be a transplant patient to stay there.
Rosemary

ok. Good to know. 🙂 Thank you!!

Hi @oregongirl - There is housing available for transplant patients and their families at each of our campuses. Below I'm pasting links to check out the Gift of Life Transplant House (located in Rochester), and The Village at Mayo Clinic (located in Phoenix). I hope they help!

Yes you are right. My entire life I have been a planner. I see oncologist next week. I don't like making snap decisions. If you think I am bad, my son is in truly a planner. He had brain surgery about a year ago. We had family staying with us researching the best doctors in the USA. He is a genius. He planned every step of the way. He even spent hours with his sister planning his companies future. Neither of us like disruptions like this, but we are ready when decisions need to be made.

@kidney09, Thank you for sharing your experience. I send along with this reply, a sincere thank you and appreciation to your brother who gave you one of his kidneys.

You were very fortunate to have a good PCP. I also remember when my PCP said the very same words about "some questionable blood work". I was diagnosed with a liver disease, and monitored for around 8 years before I needed a liver transplant, then the acute renal failure happened. So my only experience with kidney issues is a very short one until I got my transplant of both liver/kidney from an anonymous deceased donor.
Was the Berger's Disease related to the food poisoning incident, or, was it because of that incident that your kidney disease was discovered? When did you learn of the need for a transplant?
Rosemary