Wednesday, August 26, 2009

quick + updates = good news!

spoke with the pretransplant coordinator from OSU this morning.. she confirmed she is the one who called Neil on Friday! She said she sent the medical releases in the mail to us so that Cincy will release the medical records to them! She said everything went thru with insurance and we went ahead and scheduled his appointment with them!!!!!!!!!!!! I'm so excited it IS moving quickly!

His appt in in October and will be a day long event... I'm sure it's similar to what we've already gone thru with Cincy so I'm guessing there won't be a lot of new info given to us. She said they will only work with the 2 donors who have been tissue typed.. I was kinda disappointed because we'd like the other 2 to get started but she said they'll move on to them if the current 2 do not work out.... we should actually be hearing something this week about the first donor who was tissue typed 2 weeks ago today.

After I got home from work tonight, the medical releases were in the mail so I'm glad I can have Neil sign it and fax it in tomorrow!!!! The other 2 releases are for the donors to sign for their medical records to get released from Cincy to OSU...

I'm so glad and so relieved that the process is going along much smoother than what the past month has been.. especially with school starting tomorrow... during the rough times, it was really hard for me to have faith that it would all work out.. but God showed me that it would be ok and so far, it's all good!!!!

Thank you again to all my readers who have commented, emailed or mentioned Neil and this blog in person. It means a lot to have all your thoughts and prayers through this process. I'm so thankful and blessed to be surrounded by such sweet and loving people!!!!! God bless you and your families as well!!!! XOXO

Don't forget, the boys and I are walking in the PKD Walk on Sunday September 13th! If you'd like to donate to this cause, please click the "Team Branson Page" link to the right, under the picture!!!! Thank you! :)

Saturday, August 22, 2009

moving right along..

Called the financial coordinator Friday morning to talk to him about OSU and UHC getting together again.... He confirmed he had our file on his desk to work on. In fact, he said he had several files to work on because of this 'reunion'... I explained to him that we have a nice donor list going and that the clock is ticking. He said they would be in touch with us in the next week or so..

At approx 2:20pm yesterday, the coordinator was already calling us to tell us she is sending donor info packets that will need to be completed as well as a medical release to sign and send in so they can secure all the records from Cincy!

Please pray this process continues to move quickly... :)

Thursday, August 20, 2009

Changes are coming!

The past 2 days have been pretty busy.. preparing my room to go back to school and spending the last few days of summer with the family... I wish it could be summer forever, but.. part of me is looking forward to the routine part of school that summer lacks!

If you haven't read the previous posts about the current status of our situation, you might want to go back and read it.. otherwise what I'm about to tell you might not be as exciting!!!!

As I was walking out the door to go to school yesterday, the nephrologist here in Cols called.. of course I thought the worst.. thinking results from Neil's blood work came back and he has high cholesterol or something.. because there really isn't anything else for his office to call us about...

No.. the news was farrrrrrrr from bad.. in fact the news was almost as good as finding a match!!!!!! The coordinator was calling to tell me that OSU is back in-network with UHC and she will refer us to OSU for the transplant, if I'd like her to do so!!!!!!!!

As soon as the referrals are made and UHC approves it all, we will be working with OSU to complete the pre-transplant testing! This also means.. no more trips to Cincy, no worrying about driving 2 hours for pre and post transplant testing, no worrying about who will watch the dog, no worrying about any of the things that have stressed me almost to my wits end since this all started! YES, I was extremely mad at OSU for what they did to us but the convenience of having it all here in town, is a HUGE stress-reliever!

I told her YES, to please send the referral ASAP. I have learned my lesson too.. I will be ALL OVER OSU this time.. calling and making sure they have it and are doing what they are supposed to be doing! I hung up the phone and cried the biggest draining cry I think I've ever had! I came inside to Neil and he was scared because he later told me, I looked like I was about to tell him someone died! It was happy tears and a HUGE release for me so I'm sure I was a mess!

So... I'm calling them tomorrow to start bugging them because I will not let them drop the ball this time... we can't afford it.. the clock is still ticking! Thank you everyone for all the good thoughts and prayers.. keep em coming though because this process is far from over! :)

Friday, August 14, 2009

fun ~ fun ~ fun

So after a crazy week of 'kidney stuff'.. I decided that we would use our complimentary tickets to Zoombezi Bay that one of my friends so graciously offered to give us! She works for the zoo, so she offered to give us her employee tickets! We went on Thursday and had a complete and total blast! I've only been there one other time... last year, the day that I received the letter in the mail from the Dr informing us that his transplant would be in 12-24 months... So I experienced some really sad memories as we were pulling up to the place... lots of memories of being there alone with the boys last year, wanting to cry and have a meltdown.

This trip, though, was MUCH MUCH better! It didn't take long to put those memories to sleep and to start having fun! We didn't go right as they opened so it was hard finding a place to sit but we did find a place and started in on the fun! We ended up moving into the wave pool area and letting Mitchell and Marshall go off on their own to do things. They promised to stay together and watch out for each other. Neil and I hung out with Macklin and played in the wave pool and took a nice long ride on the lazy river! Just as we didn't think we'd ever see M&M, they appeared and were hungry! I had packed PBJ's and brownies and drinks so we sat down and had a nice lunch! Afterwards, they took off again and we didn't see them for about 3 hours! I had to go searching for them and of course they were so mad that it was time to go!

I'm so thankful for the free tickets... It was nice to spend an entire day of FUN and not have 1 single call, text or email pertaining to Neil's kidney transplant!!!! :)

Wednesday, August 12, 2009

'the squeaky wheel DOES get the grease'

I was going to blog about all the craziness that I've had to deal with the past 2 days but I really don't want to relive it by regurgitating every little boring detail, so I'm attempting to let it go...

Just know that the saying 'the squeaky wheel gets the grease' came true for me. I spent the past 2 days engulfed in emails, text messages and phone calls between potential donors and the pretransplant nurses trying to find out why nothing is moving along. Apparently after I squeaked enough, the 'lost' paperwork was 'found' and things are moving....

In fact.. they're moving so much that we've discovered 1 of our potential donors is not a candidate at this time. Rest assured, the hospital is not allowed to tell us which one, or why but being as the current group is all close friends, we know why and it's all good. No hard feelings or anything.. just very grateful that the person wanted to be tested in the first place!

So.. I had started a list of people who had told me they wanted to get tested but quite frankly, I didn't keep up with it enough. So if you're reading this and you would like to be added to our list, please send me an email and let me know. They can only work with 4 people at a time and only 1 has been declared ineligible. I do have a list of a few people but I figured I better take this opportunity to 'solicit' more people.

I do understand it's a big decision and a commitment so I understand if no one offers. I would do it in a heartbeat but it's going to be hard enough on us with him having the surgery, let alone me being down and out with surgery too.

Thank you! :)

Thursday, August 6, 2009

Getting closer...

So today was Neil's appointment with his nephrologist here in Columbus. He goes to Dr Saunders and let me tell you.. we just love this man! He is so funny and spends a lot of good quality time with us!

Overall the appointment was ok. They checked his BP... 151/104.. YIKES! And he's gained some weight, but that can be attributed to him feeling better and eating more as well as the fluid in his legs that has been building up. His Creatinine is 7.5!!!! This kinda made me nervous but he said it's not much of an increase over the 6.8 that it was in early July. Last we had been told was 6.3 on the 6/3/09 appointment so it did seem like a big jump to me. He didn't change any meds except to increase the Lasix for the swelling.

I guess the big thing he told us.. or big things are..

* if we didn't have a good donor list going with several people on the list to be worked up, he would be referring him to a vascular surgeon for a shunt for dialysis today... but since they are working with 4 people and we have a long list, he said it's ok to not do the shunt right now (WHEW!) Now we just need to make sure our donors get on the ball with getting their paperwork in and do all the testing as quick as they can so that we can avoid the big "D"...

* he said he'd ideally like to see the transplant happen this year!!!!! I'm a teacher and I plan so I like hearing that he's also thinking forward and 'planning' when he'd like to see it happen. HOWEVER.. I asked him to clarify if he meant 'this year' as in 'by the end of 2009' or if he meant sometime in the next year from today... and of course he meant, by the end of 2009...
WOW.. deep breath.. ok.. hmmmm... exhale...

So.. I feel better knowing that he has this 'target' time frame in mind.. and of course it all depends on getting a live donor to be a match and making sure they comply quickly to get the tests and paperwork in... but I am starting back to school in 2 weeks and need to make sure I have a plan set for who is going to go where/do what/sub for me etc when all this goes down. Oh and I'm supposed to start classes at Ashland for the 4th/5th grade endorsement... which might not happen now.. need to talk to my professors about that when we start.. And I might as well get this out of the way right now.. anyone willing to watch our dog, Mojo, when it happens? If my parents can't make the trip up, my mother-in-law will come stay here and take care of the kids but she can't take care of the dog too.. so yea.. if you really want to help.. offer to take our sweet, loving, precious puppy for awhile! :)

I think that's it for now.. follow-up with the Dr is in 2 more months.. hopefully by then, we'll know if our original 4 are a match or if we need to move on!

Oh and thank you to all of you who have been reading and either responding privately in email, posting comments on here or talking to me in person.. I really appreciate the love and support.. it keeps me going!!!!!! XOXO

Tuesday, August 4, 2009

April 09 - the present

So.. I ended with deciding which hospital to choose. First of all, it was an utter SHOCK to learn that OSU really isn't in the program and that we have to go to Cincy or Cleveland! My in-laws were so upset to find this out because they went through this and know how hard it's going to be to travel to all the pre and post transplant appointments. My FIL told me I needed to get on the phone and fight and tell them it's not right and that it's a hardship on us to travel blah, blah, blah.. I don't think he believed me at first.. I think he thought that UHC and OSU were playing some game.. well, game or not... it was true ---> Pick somewhere else or wait for OSU to get their act together and risk Neil having problems and/or going on dialysis sooner.

We have been nothing but pleased with Christ Hospital (CH) at this point! The turn around time from when the referral went to them and them calling to schedule an appointment was less than a week! It started out kinda rough though cause they wanted THEIR nephrologist in Cincy to see him for an evaluation. I was upset because he has a nephrologist here that he's seen for over 10 years... so I was hoping to avoid the drive and talk them into doing a file review on him.. no go.. they wanted to see him. So we arranged childcare for after school and headed down there in late May for our appointment. The appointment actually went really well and the Dr spent a lot of time with us, answering every question we had. His Creatinine at this appointment went up to 6.3, which seemed like a rather large jump from 5.6 in August 08. The Dr wasn't too concerned, saying it's close to dialysis and that it also depends on how he's feeling. We learned he was borderline anemic, had high phosphorus and that his blood is acidic... all 3 requiring MORE pills for him to take but they decided not to treat the anemia since it was borderline! They sent us home, telling us the nephrologist up here will still see him and manage him until he has the transplant. This was a relief because I was scared we'd have to go back to them every 3 months for follow-up.

Next appointment was June 3rd with the nephrologist up here. Nothing new.. Creatinine is still 6.3 and he still predicts dialysis in 6-12 months. He ordered monthly lab work and recommended he stop taking one of his BP meds to see if it helps. Apparently there was some evidence that one of the meds actually causes the Creatinine to go up! Said he would let him know after his next labs if it helped.... it didn't change and he ended up taking him off that med and prescribing a new BP med.. which isn't on the $3 Rx list.. it's on the $15 list!!!

So for about 5 days after this appointment, I was on the phone non-stop, calling all parties involved and giving updates and checking to make sure everything is ok and what tests does he need done etc.. it was just crazy! The nurse from Cincy finally called and scheduled THE APPOINTMENT in Cincy.. and I say it like that cause this is THE APPOINTMENT that we waited and waited for OSU to call us about! They scheduled it for June 25th! I was so relieved because it was the end of the school year and I was stressing over that and trying to coordinate all his appointments... One day, in particular, I was venting to a friend about how in the world are we going to afford all these trips to Cincy and how in the world can they expect us to travel there and stay down there etc.. when I got home that day, I had a letter in the mail from the NCM at UHC telling us we had a travel and lodging reimbursement benefit available to us!!!! It was a HUGE relief to find out we get daily allowances for mileage, food and lodging for all appointments to Cincy!!!!!

The end of the school year came and went and it was such a relief to be out.. not because of anything wrong with school... I just needed more time to deal with the doctor's, nurses, NCM, UHC etc!!!! And I've passed along this blog address to the parents of the children I had last year and I just have to say again, THANK YOU all for your love and support through this all. They had me in tears numerous times in person and in email towards the end of the year! They actually formed a prayer chain for us and different families took different days of the week to pray for us! I was speechless when I found out and I still get choked up over the outpouring of love they showed me. I will be forever grateful for their understanding and care! I teach at a private christian school and am so glad I am in an environment where praying out loud is allowed and encouraged! THANK YOU CCCA STUDENTS, PARENTS & STAFF!

So.. we arrange for my in-laws to watch the kids and head to Cincy for our June 25th appt. We didn't really know what to expect at this appointment, other than we knew to keep all receipts and we knew exactly where we were going and where to park! (Bonus - parking is FREE!) We met with the nurse, who took a boat-load of blood from Neil before we began. We sat down and went over everything involved.. all the tests, all the meds, what to expect.. it was tiring.. but the shock of it came when she told us that he would need to go down there 3 days a week for 3 weeks post transplant... WHHHHAT? Yea.. and she just kept on talking like it was no big deal. I had to stop her and clarify what she just said.. 3x's/week for 3 weeks post surgery? Um, yes.. Oh, ok and HOW exactly are we going to travel 240 miles round trip 3 times a week for 3 weeks? Are you serious? Oh yea.. she was serious.. she said we should probably just get a hotel room and stay there for those 3 weeks!!!!!!!!!!!!! AHHHHHHHHHHHHHHHHH! I was freaking out, to say the least, at this point. Ok.. so we have 3 kids in school and I teach full time.. I'm just supposed to take 3 weeks off (which I won't have) to live there for 3 weeks and figure out what to do with my kids for 3 weeks????? Oh the world stopped revolving at the moment it all sank deep into my brain. I couldn't get past it.. it was almost devastating. I mean, I know we have the travel/lodging reimbursement to take advantage of but still... the inconvenience of it all was killing me. And get this.. the reason he has to go there for those visits.. isn't for some involved appointment with the surgeon or anything.. it's to have blood drawn!!!! W-H-A-T? We seriously have to do this, just for someone to stick a needle in him and draw blood? Oh.. I was not happy with this.. especially since he has a lab here that he's been going to for years and it's covered under UHC.. so it was NOT making any sense to me at all...

The rest of the appointment was talking to the social worker... I thought maybe she was going to evaluate our mental health or something and thank goodness she didn't cause I was a wreck at this point.. but she talked to us about talking to Neil's HR department and finding donors and then she slaps her shocker on us ~ Medicare! Oh boy.. knew nothing about this until she mentioned it.. and still we're a little confused but somehow Medicare steps in and takes over, kicking UHC to the curb for a little bit then after x-amount of time, UHC is back in the picture. I couldn't follow or comprehend what she was saying so I told her to just let us know when we need to worry about it and we'll deal with it then...

So.. we head home that night, get the kids from the in-laws and packed up our clothes because the next day, we drove 10 hrs south to my parents for vacation! We had the best time we've ever had down there. Part of me felt like it would be the last time Neil would be on that trip with me so I think that's why we did a lot of fun things in Memphis! It seems like we were on the go non-stop and spent more time doing things than actually spending time with my parents! While we were down there, we had talked about camping at Kelley's Island and decided to go ahead and schedule it while Neil was on vacation. We left my moms about a week later to come home, unpack and repack for camping! Kelley's Island is one of the most fun places to camp ever! We took our friend's jet-ski with us and used it everyday! We originally planned to camp for 3 nights and it turned into 4 nights because we were having so much fun and didn't want to go back to reality!

Since then, the only major things that have happened are that I contacted the NCM at UHC and asked her why in the world we'd need to travel for the post transplant blood work when there is a lab here that will cover it.. She explained that UHC was basically in a contract with CH to do the transplant and that it's an 'all-inclusive' contract so that everything pre and post transplant is included.. she said if we go to the lab here for anything, they (UHC) will basically be paying for it twice. I managed to coerce them into letting him get most of his pre-transplant blood draws here so that we don't have to drive back down there again. CH worked it all out with the nephrologist here so that it will be coded correctly and paid for in full!

... and I called Neil's HR department this week and found out that if he exhausts all sick and vacation time and if he can't get people in the dept to donate enough time, he'll have to use disability. Because he works for the county and doesn't get SS, he'll have to go thru PERS for this... the breath-taking moment for me was when the girl in HR explained to me that his pay would be cut in almost half and oh, by the way, the medical insurance coverage changes while on disability and is usually more expensive and doesn't cover everything!!! YIKES.. like I need to deal with any more insurance problems.. especially given that UHC is in contract with CH over this all and to find out it could involve another insurance company.. ugh.. don't even want to go there... Neil reassures me he has enough time for 5 weeks and he's continuing to earn more time and that he's pretty sure his friends at work will donate time to him... I hope.

So.. if you're still with me and reading.. you're officially caught up to date with this saga.. it's been a never-ending process that seems to have something pop up every other day.. I feel like I'm going to the pharmacy several times for either new drugs or refills.. and that's never an easy trip because for some reason, they always manage to mess it up.. and I didn't even write about the swelling in his legs, that he's now taking yet ANOTHER pill for!!! And he still has testing he needs to do and, and, and... one day at a time...

As far as donors.. if you're interested...
We have a working list that we're going off of from everyone who volunteered to get tested back when we started with OSU in January. CH will only work-up 4 people at a time to see if they're a match. Currently, we're still waiting to see if his half-sis is a match and they're working with some people that Neil works with as well as his mom's best friend. They're (CH) not allowed to tell us about the progress of the individual donors so we kind of don't know what's going on.. however.. Neil's mom's friend has told us she's going to get tissue-typed. I think that's pretty far along in the process so I'm hoping she will be a match. She is the same blood-type as Neil, which is AB+ however AB+ is the universal receiver so it doesn't matter what blood-type you are, he can take it! If the current 4 people don't work out, then we have 4 more names ready to give them to check out and if they don't check out, then I think we have a few more. If you're interested in being a donor, they did give us a few guidelines... no BP problems, no prior kidney stones, no smokers (or if you are, then quit while being tested). If you're interested, let me know and I'll add you to our list!

His next appointment is this Thursday with the nephrologist here in Columbus.. I'm eager to find out if his Creatinine has gone up much since June 3rd. Except for the swelling in his legs, he's been feeling great!!! I'm hoping it's an easy in/out appt... I'll let ya know..

PKD Walk Sunday September 13, 2009

Hi all!

I just created "Team Branson" and signed up the boys and I to walk in this years Central Ohio Walk for PKD. I wasn't able to participate last year but we did the 2 years prior and had a great time!

We are walking to support The PKD Foundation's efforts at finding a cure for this disease and also to support Neil.

If you live in/around Columbus and want to walk with our team, head over to our team page and sign up:

If you're unable to walk, please consider making a secure donation online by clicking HERE

No amount is too small and if we each raise $100, we'll get a FREE t-shirt to wear while we walk!!!!!

Thank you!

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 *