Monday, August 3, 2009

A brief history of it all..

So here's how it all got worse so quick..

Neil had been seeing his Dr every 6 months and then he graduated to every year and finally in August of 2006, he told him to come back in 2 years.. and so he did... He went back in August 2008 and I don't even recall Neil saying much after the appointment. I didn't go with him so I guess I thought everything was ok.

Most of you know that right after school started, in early September, Neil's department lost a Deputy to a car crash. Neil was one of the first to respond and administer CPR. Needless to say, it was very emotional and attending the funeral was one of the saddest things I've EVER done my entire life. Really, it was worse than any family funeral I've been to... So the week of the funeral, we were pretty much an emotional mess... I teach so it was hard to go to school the next day with a smile on my face. On Sunday, I realized I hadn't checked the mail the last couple of days and as I was headed out the door, with the kids, to Zoombezi Bay, I grabbed the mail. My hopes for a fun-filled day were immediately halted when I saw the letter from Neil's doctor. It stated that since his Aug 06 appointment, his Creatinine had gone up from 3.9 to 5.6 and that his estimated functioning is between 10-15% AND that he expected dialysis and/or transplant to be necessary in the next 12-24 months!

WOW! Suddenly the previous predictions of 5-10+ years for these procedures were NOW!!! I freaked out and was scared to tell him, after what he had just been through that week.... I called his parents, who were vacationing in Myrtle Beach, because I HAD to tell someone and I knew they'd understand more than anyone. I'm pretty sure it was a shock to them too but something that they too, knew was coming because it's hereditary. I feel really bad for his mom because she feels guilty for passing this disease to him.

So anyway.. the doctor wanted to see him again in November.. which changed to December, because I'm sure the Dr was busy playing golf or something... so the appointment ended up being the week before Christmas... yes, Merry Christmas Neil.. you need a kidney! That's basically what the appointment was all about... telling Neil he's being referred for transplant and he'll get the paperwork together and submit it to Ohio State University Hospital pre-transplant department. He said they'll get in touch with us, but probably in January since it's almost Christmas....

So come January.. we get the packet in the mail from OSU and start on all the stuff we have to do.. I make calls to insurance (UHC) and talk to the pre-transplant coordinators at OSU and start thinking about who will want to be a live donor... first choice is obviously Neil's half-sister because they share blood, she will probably be a good match and she's not his mom's child so the chances of her not having PKD is really high! So we decide to have her get in contact with OSU and start the process and she does. OSU tells me that as soon as their financial coordinator works out all the kinks with UHC, they will contact us for an appointment with the nurse/social worker and eventually the surgeon team....

and so we wait.. and we wait and we wait.... and wait some more.. and make calls asking what's taking so long.. and wait some more.. and make more calls... and wait.. and call... and wait and call... still nothing from OSU as far as an appointment... more calls... more waiting.. it's getting ridiculous how much time has passed.. really.. it's not right.. and I have limited times that I can call during the day at school... so instead of sometimes doing school things.. I am on the phone calling UHC and OSU...

So.. fast forward through all that waiting and it's now Spring Break (woo hoo) and I'm in Mississippi at my parents, with the boys.. Poor Neil had to stay home and work.. It's the middle of April and I have all the free time in the world to call and nag OSU and UHC about what the heck is taking so long. I call OSU and the coordinator tells me that it's never taken this long for an appointment so she'll put me through to the financial coordinator to find out what's going on..

Are you ready for this? He informs me that OSU was kicked out of the in-network provider list for kidney transplants by UHC, BACK IN JANUARY!!! It's now April 13th, to be exact, and they are JUST NOW telling me this??? I was LIVID to say it nicely.. He acted like it was all UHC's problem/fault and they were just waiting to get re-evaluated by them to get back into the program and since they don't want to lose patients in the process, they were hoping we'd wait too. UMMMMMMM...seriously? Does he really think that by NOT telling me and by stringing us along that we'd even WANT to stay with them even if they did get back in? Talk about losing PATIENCE... I was so upset I couldn't even think straight.

I very quickly got UHC on the phone and found out that we had a nurse case manager assigned to us but she was on vacation for a week.. so I asked for someone immediately and ended up with the NCM who was covering for ours. She said lots of things.... she said that UHC kicked OSU out of the program because OSU's percentages on survival and other stuff went down below their expectations and until they can prove themselves, they will not get back in nor will they even get re-evaluated until January 2010!!!!!!!!!! She also informed me that the reason the NCM never contacted us is because they never received the referral from OSU for the transplant.. UCH knew we were being referred for transplant because the Nephrologist sent their portion over to UHC but OSU never followed up and sent their referral... So this means that from day #1 with OSU, we were at a road block and they strung us along with this business about waiting for the appointment! HA! They were waiting for a chance to get back into the program and hoping they made it back in before we ever found out!

So.. now our options were Christ Hospital in Cincy... Cleveland Clinic in Cleveland or University of Cleveland in Cleveland.

After reviewing the stats from each hospital and the distance to each.. we decided on Christ Hospital in Cincy..

More later... I can't write anymore for now.. I tried to be 'brief' but it seems like nothing relating to this issue is 'brief'...

* RIP Marty *


  1. So sorry Jennifer.


  2. I just started reading your story which made me very emotional so I better wait till things calm down here and I have time to read again. So glad you are blogging again and if i did inspire that then at least one thing good has happened from it!

  3. thank you and YES, reading your blog did inspire me to want to tell me story too.. it helps to get it all 'out' of my head! <3