Wednesday, October 03, 2012

Our Journey

It has been just over a year ago that we discovered Daddy had a serious medical issue.  After testing and a biopsy last December he was diagnosed with FSGS and was in the later part of stage 3/early part stage 4 of Chronic Kidney Disease.

Last February he began medicine therapy with 60 mg of Prednisone.  We were really nervous about this drug as we had heard about some serious adverse side effects.  After much discussion, talking to others, and prayer we decided it was needed.  Daddy did great on the drug.  His face did swell a little but was not noticeable to those who didn't know him well.  His appetite was ferocious.  There were some other minor side effects too but all in all his body did well with the drug.

The blood tests showed that the Prednisone was doing something as his numbers were getting slightly better.  We were hopeful that the drug was in fact turning things around a little.  A little here could mean holding off a transplant or dialysis by years.  The doctor was not as pleased with the numbers but glad that something was happening.

People would ask how Daddy was doing and honestly we weren't sure what to say.  There was no way to know until he came off the drug to see how his body would actually respond.  Would the numbers continue to improve, stay the same, or begin reversing again.  He began the weaning off process over the summer so we knew we would this answer soon.

We met with our Nephrologist yesterday and were unprepared for what his next step for us would be.  After discussing the numbers and seeing that the numbers are in fact beginning to reverse, he told he us that he felt it was time to refer Daddy for the transplant list in our state.  I think maybe both of our jaws hit the floor.  I know I had a hard time concentrating because my head was spinning.

We knew this was in our future.  I guess we just didn't realize how soon it would be.

Daddy's kidney function is back down to 26%.  People are referred at 25% so the doctor felt we might as well get the ball rolling.  The wait list for a donor kidney here is 5 years.  If we did absolutely nothing, Daddy would need a new kidney in 2-3 years. With the advice and direction of our doctor, we decided that he should go ahead and start a new drug which is an immune suppressant, Cellcept.  (Daddy is also finished as of yesterday with Prednisone.)  It will not improve our situation but it will slow down the disease so that we should have at least 2 more years.  So if you do the math Daddy will need to have a transplant in 4-5 years if things continue as they are. 

Daddy will probably have an appointment in November at a local hospital with a great reputation.  They are ranked 6th or 7th in the nation for kidney transplants.  They will begin the very in-depth evaluation and testing process for a transplant.  They need to make sure he is healthy other than the kidney issue so they will run a lot of tests on him which could take a day and a half.  Once that is finished we will refer those who have offered to be tested to be a match for Daddy.  If a live donor is found, then we will wait so that the doctors can get as much out of Daddy's kidneys before putting a new one in.  The Nephrologist thought if this was the case we would probably wait 3 years.

We were obviously both a bit overwhelmed by this appointment but after thinking it through we are thankful that the ball is rolling earlier than later.  We don't want to be at the bottom of the list when we are in great need of a new kidney.

Prayer requests for our family:
1.)  We do have a person who wants to be tested to be a donor.  Wouldn't that just be awesome if he was a match for Daddy?

2.)  Once the transplant is done there is a 20% chance of it recurring again in the new kidney.  We want to be part of the 80% that it doesn't recur in.  (This is my biggest concern right now.)

3.)  Wisdom to make the right decisions and to feel confident in the medical team we are surrounded with.

4.)  The girls to continue to be spared of worry and anxiety regarding Daddy's health.

5.)  Daddy's energy level...it has been greatly reduced as he has come off the Prednisone.  This is a big symptom of the disease.

Thank you all so much for your support, prayers, and concern.  We have been loved on by so many of you and we so appreciate all of it!

Isaiah 41:10  "Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."

1 comment:

TWitmer said...

Praying for you both Mindy. I apologize for not reading this sooner (hence not praying sooner). God is so good and I KNOW that He has great plans for Kevin...during this process and after. Will be praying.