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..
5 hours ago