Tuesday, September 3, 2013

The next step... Renal Failure...

On August 21, we visited IU Hospital to finalize the process for getting Aaron on the transplant list.  We drove down after work and stayed at the hotel I'll stay at during the transplant process.  It was nice, had big rooms so that the kids can stay and we won't all be crowded.  The best part is, that there is a shuttle to the hospital, so I won't have to navigate the crowds, parking, etc.  I was excited about that part.  Then, in the morning, we went to the hospital to have some blood work and tissue typing done.  Then we met with the nephrologist on staff there at the hospital.  They will do the monitoring and medicine regulating for Aaron from the transplant on--he'll be on anti-rejection medicine for the rest of his life (I'll have to write more about this visit later.)  Until then, we still visit his Dr. in Fort Wayne.  This doctor informed us (which we already knew from our own research) that the wait for a kidney from a deceased donor, with Aaron's blood type is 4 to 5 years (he has type O blood).  The reason for the hold up is that there is such a demand for his blood type.  His report is important to the transplant process, because he gives his recommendation to the nurse coordinator and she presents it to the transplant board.  After that, we met with the social worker.  We spoke with her about our family, finances, insurance, etc...it was really fun... err...not fun.  We felt the weight, the breadth of the entire process that day, it was a bit overwhelming--This kidney thing, it effects every area of our lives for the rest of our lives.  Next, we went to a kidney education class.  It was a group class--with everyone else that was working on finishing their work ups that day.  We watched a video that described how the transplant is done--do you know that Aaron will end up with 3 kidneys after the surgery? --they will not disconnect the dead kidneys, just add a new one in the front. It minimizes the risk of infection and all kinds of other things that are associated with surgery.  But, as I sat in that class, the weight of how my life is so hinged on the kindness of another person is overwhelming.  You see, my husbands kidneys are dead--they function at 19 percent at this point and that is considered renal failure.  Since it is best, on his body and other organs that he not have to endure dialysis if he doesn't have to, or for as short a period of time as possible, we are holding off at this point.  He will need to be on dialysis by the time his function is down to 10 percent-- but when he starts is up to him at this point.  As long as he can endure his symptoms--he won't do dialysis. (His kidneys have not behaved well and his kidney function has declined 10 percent since we started this process less than 2 years ago.) Dialysis only filters certain things from your blood.  It doesn't/can't do all that your kidneys do.  For that reason, dialysis-though it saves lives, is also very hard on your body.  One of the statistics that they showed during the educational class said that only 20 percent of people on dialysis are still alive after 5 years...and a large percentage of the time, they die of a heart attack.  It's not hard to do the math on that one--

The day we were in Indy, Aaron's parents met us there and went through the day with us.  His mom was also blood and tissue typed to see if she would be able to be his donor.  Thankfully she was a match--so she will be testing to see if she is a viable donor.  It's all just super scary. 

Tuesday the 27th of August Aaron's nurse coordinator presented him to the transplant board and he was okayed to be listed.  She then submitted him to our insurance for his 2nd approval--it is a complicated process.  We got word Friday, August 30 that he received his insurance approval and will be listed this week.  He has to be on the official list, and through the official process to begin testing his mom to see if she is a viable candidate for his donor.

Please be with us in prayer in these ways--

We are praying that Aaron's kidney function will level out--not drop off like it did earlier this year. (We need these things to last as long as possible)

We are praying that God will provide the right donor, with the right kidney for him.  (we are hopeful it would be his mom--but if it isn't we need the right donor kidney)

We are praying that with this recent move, and the stress of the kidney situation, that God would give us peace, that he would calm our anxious hearts. 

We are praying for our Decatur house to sell--we have a contract, but it seems shaky--we are currently paying 2 mortgages, 2 electricity bills...you get the picture.  With the looming medical bills--we really need to just be done with it.

Thanks! (sorry if this is one great big run on--it's hard to write these things down, ya know...)




Amy Moore said...

Amanda & Aaron, I'm praying for you both and your littles...I'm sure it's hard on them, too. I know I haven't seen either one of you for a long time, but know that I love and treasure both of you. I've always loved hanging out with Aaron at Trinity when we were there and then working at Hobby Lobby with you was great as well!

God has a plan for you guys, it just is hard not knowing what that is. But, you both are so faithful to HIM and He blesses those who love and trust Him. I'll pray that everything goes well and that Aaron gets the donor he needs! Love you guys!

Amy (Briggs) Moore

Anonymous said...

Dear Amanda, Aaron & family,
Your post moved me to prayer immediately for all of you. With everything that you are facing, I know that God has a plan & he will never give you more than you can handle. He will be with all of you every step of the way. We love you all very much & will continue to pray.
Aunt Bev

Anonymous said...

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand. Is 41:10
This has become our family prayer, I am sure it is yours as well. We never know what God has in store until it knocks at our door. We are praying for you and Aaron and the kids. There will be tough times ahead, but know that you are not just held in the Hand of God, but in the RIGHTEOUS Right Hand of God. Look back on all the previous times of His faithfulness and know that nothing has changed. Thank you so much for the update!
Charm & Gary