My Medical journey thus far!

 So when I found out about my ADPKD, my kidney function was already down to 30%.   Ask your doctor what your GFR number is next time you get blood tests, this is what prompted investigation into my kidneys.

A couple years ago they came out with a medicine that could help slow the decline for this disease.  I tried it and it made me so thirsty and I was in the bathroom all the time.  Unfortunately, it did not work for me.  My numbers kept falling.  At 20 GFR they can refer you to the transplant people.   I was referred in May, but did not hear from them until August.

In August I met with St. Luke's which is a place that is 2.5hrs away, but thankfully has an office near me.  Getting put on the list is not easy.  You have to have so many tests and basically prove you are healthy enough to be on the list.   It's a vicious circle.  Kidney's not working cause all sorts of problems, but you can't have those problems to get a kidney.  It can cause high blood pressure, heart issues, brain aneurysms, diabetes, and so much more. So I started my journey to just get on the list.

Prior to meeting with the transplant team, I had increased the amount of doctors I have already.  I have a nephrologist (kidney doctor), gastreo...something doctor (to check my liver), PCP (my regular doctor), and of course an OBGYN. Since meeting with the place, I've had a met with a social worker, a nurse, a surgeon, and a dietician.   They all seem to think I'd be a good candidate (as long as I keep sugar levels down).

The process to get on the list includes every type of test possible.  These are what I've done so far.

• mammogram
• colonoscopy
• heart testing
• xrays
• mri/CT scans
• lots of immunizations (covid, tetanus, pneumonia, shingles)
• a lot of blood tests (they took 25 vials of blood in one setting)

I have a biopsy from the mammogram follow ups coming up and haven't met with the heart doctor yet, but I've pretty much finished all the testing/shots I can.   I know I still have to meet with a financial person and I have the second shot for shingles.  My life has been work/dr or tests/back to work for the past two months.   Thankfully my evening work has slowed down for awhile.

Currently my GFR number was down to 14 the last time....not good.  It's time to start discussing dialysis.   Getting a kidney could take 3-5yrs after/if I get on the list.