The C Word

 I'm writing several blogs to catch up.    On top of my kidneys failing, in July I went in for a D&C  to help with girl problems.  And my pathology came back showing stage 1 uterine cancer.   

Again not something that really runs in our family so I was shocked.   I did not expect that.  I was lucky because they caught it and they caught it early.  So I added another doctor to my list, an OBGYN oncologist who moved fast and I went in for a hysterectomy at the end of September. I had everything removed.   They were able to get it all.   But I lost all my sick days at work and struggling to fit in all the other things has been a little stressful.  I took 3 weeks off while still managing classes and a show and a child.  Did I actually take time off?  Good question.

After the surgery, I have actually felt better than I did before.   I'm both embarrassed and thankful for so many people who have been helping me out.  It's hard to ask for help and accept it, especially after all the years of being independent.   But our systems have made it impossible to do everything on my own.  My parents and brother have helped so much with my kid, especially for appointments.  My extended family started a go fund me and so many people have helped me out financially.   I hope someday I can pay it forward.   With the funds, it has relieved so much stress.   I didn't know how I was going to pay for the hysterectomy or a kidney transplant.   I lose money each day/time I have to take off now.  I've had a couple teachers help me out when I need to leave right away or a few minutes early for appointments (of which I hope will be slowing down).   I can never repay or thank them all enough so I hope they know how grateful I am.

The funds are helping as I need to take off and helped me pay off all my current med bills.   I've put some in savings so when I do get the call, I will be able to get the transplant.   I have to stay in the town 2.5 hrs away for a month.

So if you are praying for me, sending good vibes, helping me out, sent money, or just sending love.  Thank you.

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.

The Background!

 Hi,

If you are here reading this, you must have some interest in my new journey in life.  

In March of 2022, I discovered that I have ADPKD or autosomal dominant polysistic kidney disease.   I know...what!?!?  I'm a 45 yr old single mother of an 8yr old.  I teach HS.   I don't know how to slow down and then this.  So follow along and learn about the process of trying to get healthy.

What is ADPKD?

So basically my kidneys are growing fluid filled cysts on them.   They are growing larger and shutting down.   Autosomal Dominant means a parent should have it and there should be an obvious line of inheritance of this.  However, 10% of cases are spontaneous and I'm one of those lucky ones.  It's usually not discovered until 40's and 50's.  

What can be done?

Nothing.  There is no cure or medicine that will help it.   My only hope is a kidney transplant and I'm in the process of trying to do this.

How bad is it?

So when diagnosed I was at the end of Kidney Failure stage 3, I'm now in Stage 5 (end stage).  It has developed very rapidly and according to numerous doctors my kidneys are 'very large.'   Thankfully except for being tired (which I always am) and a few days where it hurts, I've been very lucky and haven't been to bad.

What are the next steps?

Dialysis is my next step, which is coming quickly.  A transplant would be the next and I'm working on that which is what this blog is all about.