More awesome news and prayers needed for friends!!!

YIPPPPPPPPEEEEEEEE!

Our donor Candy called me on Wednesday afternoon to let me know the Pretransplant Committee OFFICIALLY approved the transplant! I can't tell you how excited I was to hear this news! I pretty much knew it was going to be approved so it wasn't a total shock, but something about hearing that it was OFFICIAL just clicked in my head. I hung up the phone, told Neil, sent out a text message to some friends and family, told the boys, then sat down and cried. My middle child (8 yrs old) asked me why I was crying. I told him they were happy tears because I was so relieved to FINALLY hear it's official!!!! The sigh of relief was a years worth of worry. Even now that I'm writing about it, I get the chills just thinking of what has happened and what is to come. Our donor is so wonderful and our angel. She is giving us the best gift anyone could ask for! There's no way to ever thank someone for their selfless act of donating!!!! THANK YOU CANDY! XOXO

Now that it's official, we are still going forward with our date of January 26th. I freaked out a little bit on Saturday when I realized it's only a month away. I think that the time will fly by. I'm so glad I have another week off work to clean up the house, get caught up on grading papers and start planning for the next month. I don't want to fall behind in anything at this point. Time is very precious.

As far as needing prayers, I've blogged about my Internet friends, Mary and Amy, whose husbands are brothers, both suffer from PKD and BOTH need transplants. Mary's husband, Sean is having his transplant THIS WEEK (29th) and Amy's husband, Bruce, is having his transplant the 14th of January. It's so amazing to me that their husbands ended up having live donors and their transplants scheduled so close together. It's also amazing to me that I found these people through the PKD page on Facebook and got in touch with them and started blogging because of them. It's wonderful to have friends who are walking in my shoes right now. In fact, it's super cool that they're going thru this ahead of me so that I will be informed and know what to expect when it's Neil's turn!! Even though we don't live in the same states, I can see a meeting someday with them!!!

Please visit their blogs and please say prayers for them as they go through the transplant process this week and in the coming weeks! Please pray the germs stay away from them and that their transplants are successful!

* Mary & Sean (donor Jeremy) can be found at Living with PKD - Transplant December 29th in Nashville, TN

* Amy & Bruce (donor Ken) can be found at PKD Sucks - Transplant January 14th in Tampa, FL

Thank you and HAPPY NEW YEAR everyone!!!!

More news!

Our kidney donor, Candy, called this afternoon while I was on the way home from school! She let me know that the nurse called her and said the Doctor reviewed her CT Scan and cleared her for surgery!!!!!!!!!!!!!!!!!!!

You would think this is the last step.... but it's not... and like I said earlier, it's all tentative up until they're being wheeled into surgery! The next step is the Pre-Transplant Committee, made up of doctors and nurses, needs to review Neil & Candy's files to make a final decision about proceeding. We honestly do not see why they would say no at this point. The committee meets on Wednesdays to review all their pretransplant patients but ours won't come up for review until next week... so Merry Christmas to us, I guess!

The next step is to pray pray pray that Candy and Neil stay healthy through Christmas and up until it's time for surgery. There's always the chance that either one of them could be sick with a cold and we'd have to postpone the transplant. I was soooooo worried about Neil getting the flu and strep throat I had last week that I wore a surgical mask for 3 days and avoided him as much as possible!! When I talked to the nurse last week, she told me his Creatinine is near 9, which is 'usually' the magic number for dialysis... As long as we don't have any major setbacks, we should be okay for avoiding dialysis before the surgery. He actually has a regular checkup with his Nephrologist tomorrow so we'll see if it's gone up since it was checked in early November.

Thank you all so much for the feedback, love, support, prayers etc that have been offered. We really appreciate everything!!!! :)

I guess you could say it truly IS the gift that keeps on giving!!!!

WE'VE GOT A DATE!!!!!

this update (and news) is long overdue... But life has, once again, been hectic. The past 2 weeks have been really busy with school and all the stuff that comes with that.... working at my kids school... or better yet, having them attend the school where I work can be a little a lot crazy at times! It's always something... and I am always there to deal with things immediately.. which can/cannot be good at times.... however, I will survive... I always do. Actually, speaking of surviving, I thought I was "dying"... (not literally but close) this past weekend. I started feeling really sick on Saturday and by evening I couldn't take it anymore... I looked up the closest urgent care, made sure they were open, and drove myself there. With the multitude of symptoms I was having, I knew something was wrong. And that it was.... I have Strep Throat and the Flu... I am being treated as if it is H1N1 with Tamiflu and Penicillin for the Strep. I've spent the last 3 days in bed or curled up on the couch, catching up with hours of missed TV. (I love DVR). I have to say I'm starting to feel "normal" again but not enough to go back to work tomorrow. The Dr told me to stay off work through tomorrow so I'm actually taking his advice and doing just that! I just need 1 more day to 'make sure' I am up for it because I know once I commit to going back, there's no turning around. I get worn out thinking about going back to work actually... my throat is still pretty swollen and sore and thinking about all that talking I will have to do, just makes me squirm.

So anyway... back to the date.... The donor went to her all-day appointment and all went well... except that I was under the assumption that her CT Scan would take place that afternoon. I was wrong..... They don't actually schedule the CT until after the blood test results come back. When I talked to our NCM, she promised the CT would be the very last test. It is scheduled for this Thursday... however, they don't think there will be problems, so we were able to "tentatively" schedule the transplant in January!!!!!! The donor texted me today with the date!

JANUARY 26, 2010

She said they will need to do 1 more blood matching test on the 19th and then they'll both be admitted to the hospital the day before and then start the transplant on the morning of the 26th! Of course, this is all "tentative" up until the moment they are rolling into the operating room!

I can't even begin to express the relief that fell upon me the minute I read her text message....

rrrrrrrrrrrrrrrriiiinnnnnnnnnnggggggggggg...

This is my phone... and it ringing is what I'll be waiting on this week! Last week when our donor went to her appointment for the final stages of testing, OSU called me at school to tell me they needed Neil down there that day to also give blood. Apparently they wanted to run another serum test between his blood and the donor's blood. I told her I would call him at home and wake him up and get him down there by closing time. I was disappointed, though, and expressed that it was 3 weeks before we got the results from Cincy when they ran the same test this summer. She said she has no clue why it took 3 weeks and that they will know something in about 3-4 days... HOWEVER, since it was Thanksgiving week, it will probably be this week that we hear the results. She told me that all the results should be back this week and we should know FOR SURE if the donor is a go for the surgery!!!! I even made her repeat it just to make sure I heard her correctly!

Of course, I was sooooo relieved to hear this news but then all I could think about was getting through last week and getting to this week! I had been looking forward to having 5 days off and spending Thanksgiving with my family but my focus suddenly changed to this week... not like it's a suprise since I've pretty much lived "date-to-date" this year. When Neil went to give blood, they told him we should know on or before Tuesday if she will be a match. I'm trying so hard not to think about it but it's hard not to wait for Tuesday to get here...

Anyway... Thanksgiving was awesome... it was actually our first ever Thanksgiving that just the 5 of us spent together. In years prior, we went to one or both of our parents or they came here. This year, though, was just us..... and I really liked it that way for a change! We also celebrated our oldest child's birthday! He turned the big 1-0!!! Kinda funny how we say 3-0 or 4-0 but we never say the big 1-0! He was pretty excited and we had a great time taking him out to Dave-n-Buster's with one of his close friends.

I'm done with school for the quarter and waiting on my grades! I already know I got an A in my Middle School Methods class... just waiting on my Middle School Geometry grade.. pretty sure it's an A too since I aced the final!!!!!! Classes start back up in January and excited that one of the two classes is completely online! If Neil has surgery in January, having a class online will be a HUGE plus!

I hope everyone had a great Thanksgiving and is ready to go back to work tomorrow! Hopefully the next time I'm updating this is to let you know we have a date for the transplant.....

I'm a little edgy tonight...

tomorrow is the big day for our donor! She goes for her all day appointment at OSU. She'll meet with the nurse and surgeon.... she'll have more blood drawn.. she'll hear all about transplant and be sent for a chest X-ray and CT Scan of her kidneys. please pray for this to be 'the one'. I really don't think I can take much more waiting. I know people wait longer than this being on the list but I just hope and pray so much that she's a match.

I don't think we'll know anything for a week or so... not even sure exactly how long but I know that once all the testing is done, the pretransplant team will have a meeting to discuss whether she's truly a good match for Neil. I think they only meet on Wednesdays so it could be several weeks before that happens. I really hate wishing away time but when what I'm waiting for is such a huge issue, I can't help but wait for time to pass!

Not much else is new.. just getting ready for thanksgiving. So thankful for this donor who is willing to go thru this for us! I'm also thankful for a 2-day workweek and 5 days off to spend with Neil and the boys!!!

I know I mentioned them before but two of my blog friends, who are brothers, both have donors and dates for their transplants! I've never met them but discovered one of them on Facebook and then from there found the other one: Bruce and Sean. It's been awesome reading about the process they're going through and hoping we are soon in that place of planning for the transplant!

Thanks again for all the prayers and well wishes. I'll update again when I know more! :)

YAY!

Yep, I'm doin the happy dance! Got a text message from the potential donor telling me she had too much to text and to call her!!!! Oh my gosh, I was so nervous as the phone was ringing! But it all worked out because she passed the latest test and was scheduled for her all day appointment with the lab, nurse and surgeon!!!! She'll get all the final testing completed at this appointment... chest xray, blood work and I think sent for a CT Scan of her kidneys!!! Her appointment is right before Thanksgiving!!!!! We're soooo excited and so relieved that she's moving on to the next step! I just hate that it's so far away! It seemed like I wished away time for it to be Oct 15th (Neil's appt) and now I have another month to wait.. I hate waiting for stuff like this!

Neil had his first transplant dream last night... he said it was weird.. he said he woke up and they still had a tube in his throat. I think the anxiety is setting in after seeing the surgeon. He told him 2 things that kind of freaked him out.. he'll have a catheter for a few days post surgery and he'll have a main port, I think they called it.. I think that's for dialysis if there's complications but I'm not sure. I suppose I ought to read up on that.. all Neil said was that he hopes both of those are put in after he's asleep! I hope he doesn't start having a lot of dreams about the surgery... I guess that's normal but I know how dreaming about stuff can sometimes make it worse!

All the boys are better, by the way.. thank goodness because I was getting sick of everyone being sick! And thankfully Neil didn't catch any of it! I guess his immune system is better than we thought!

I probably won't update much till next month because there's really not much else going on! We have done everything we need to do.. we just need to wait for the donor's appointment and then go from there! Pray for patience for me.... I'm going to need it! :)

The good, the bad... the ?????

"I have good news and I have bad news.. which do you want first?"

Ugh.. don't you hate that question? How do you pick? You know right off the bat that something is going to make you happy and something is going to make you sad/mad.. it's such a tough decision. Some people like the bad first, so that when they hear the good.. it's better than good! Some people like the excitement first, because they can't wait for the good news and want to hear positive first and leave the bad for last...

anyway.. today was a good day and a bad day... but for 2 very different reasons.. so I'm going to pick for you.. I'm going to give you the good first but you can scroll down to the bad news first if you just have to know!!!!

The good news is:
our appointment today was wonderful! We had asked if we could get out early so that we could get to school in time to get the kids (it was an early dismissal day). They said they would try their best.. and that they did! The first 2 hours were spent getting lab work done and listening to an 'education' class on kidney donation. Because we have already been through this with Christ Hospital, almost all of it was review. A few new questions arose and we learned a few new things so it wasn't a total waste! After we finished with the educational portion, they took us back to an exam room. We met our new nurse coordinator and answered a million routine questions. She left and brought in the surgeon!!!!!!!! It was so exciting to finally meet one of the surgeons.. I really felt like this was major progress! He spoke with us and did an exam on Neil.. he said while his kidneys are large at this time, they are not large enough to need to be removed before or after transplant!!!! :) He said that could change and other things could come up that would mean they need to be removed but as of now, they are good to stay in, he has room for a new kidney and he's ready for surgery!

*Side note* While we were meeting with the surgeon, our donor called me and left me a message saying she can't get the results of her glucose test till Monday because the nurse that needs to read the test is out sick. I just happened to mention this to our new nurse case manager and she said she would go over and see if she can read them.. and possibly sign off on them so that the donor can make her appointment with OSU.. We're getting so close to her being a match.. keep praying it all works out!

After the surgeon left, the social worker paid us a visit.. again this was all stuff we already knew so she skipped almost all of it and just got to the nitty-gritty... i.e. Medicare... UGH.. not fun stuff but if we have to do it, we have to do it. After she was done, the nurse coordinator came back and and we finished up and I think we were out the door around noon! We were so excited to be done that we decided to go to lunch! While at lunch, I sent a text message to my coworker at school to let her know we would be picking up the boys and not the other person we designated yesterday! We texted back and forth and all was well.

The bad news is:

While Neil and I were enjoying our nice lunch, my phone rang and it was my coworker.. telling me that the recess duty teacher checked in on child #1 and he was sitting on the carpet (it was indoor recess) and looked totally out of it. She said he felt hot and wanted to know what to do because she knew I was at the appointment and couldn't leave to get him. I informed her that we finished early and were having lunch but we would finish up and get there ASAP!

So.. we finish lunch and get to school to get the boys.. at this point, we're signing them all out because it's only an hour till dismissal anyway. Child #1's temperature at school was 101. The school nurse just happened to be there so I chatted with her about him and the whole H1N1 scare etc.. I decide that I probably won't call the Dr but just take him home and load him up with Ibuprofen and put him to bed. However.. when we got home, I checked his temp and it was now 103!!!!! So I called the Dr office. They are obviously inundated with sick calls because they put me through to a nurse to be screened first. I told her his symptoms and she said if it's the flu, there's nothing they can do and she doubts it's strep throat because he has a cough... but that it's up to me if I want to bring him in. I tell her he looks miserable and that I would feel better if he was seen. So she said they had a 615p appt avail! I was really surprised because they normally close at 430p and never take patients that late. She said the waiting room is full and they have to see their patients.

We made it to the doctor and went back into the room.. they took his temp with the head scan thermometer and say they need to get him some Ibuprofen fast.. they didn't even tell me his temp but I could still see it on the display... it was... (hold on to your seat)... 106.4

Whhhhhhh-------what????? Are you kidding me?? I looked at the Dr and almost fainted.. I thought kids died at temps that high! And here my kid has one THAT high! After I picked my jaw up off the floor, I felt really guilty for making him go to school today and wanted to cry! The Dr assured me that she didn't think it was accurate and that kids have high temps like that and it's ok... she said he looked and acted sick but didn't act or look like he was THAT bad.. she left to go get a popsicle and to get the flu test and I started in on the child... "When's your birthday", "What day is it?", "Where do you live?", "What's our phone number?", "How old are you?"... he answered every question correctly and asked me, "Why are you asking me this?".... I told him I just needed to know that he was OK...

The Dr comes back.. and makes his day with a Popsicle... but not before she can stick the flu swab up his nose and practically into his brain.. he complained it hurt.. it hurt me to watch her do it to him! She promptly came back to tell us he tested positive for Influenza-A and that they are considering that to be H1N1 since seasonal flu starts later. She said there is nothing they can do other than pump him full of fluids at home and administer Ibuprofen every 6 hours. She told me what to look for and call if I see any of it and also that he should be fever free by Sunday. She said to watch out for the fever going completely away for 24-hours and then coming back!

So we left and I took him home to get into bed... I went to the store and stocked up on all kinds of drinks and Popsicles for him! I had told the Dr about Neil and she advised I get on the phone with the nephrologist office and find out if they want to start treatment for Neil. On the way to the store, I called the answering service and told them what was going on and to have the Dr on call get in touch with me. He called me when I was in the store and I explained to him what just went down with the child and he said he honestly didn't know what they were going to do because it hasn't happened to anyone else before. He finally said that if Neil has any symptoms of flu, to get to his family Dr immediately for a flu test and go from there.

I've checked on the child twice since being home.. his fever has dropped to normal... which seems extreme to me.. so it either really wasn't that high or Ibuprofen is golden! At the 6-hour mark, I checked again and it was still 98... so i gave him another drink to sip on and more Ibuprofen in case it decides to come back in the next couple of hours.. while I'm sleeping! Tucked him back in bed and told him to holler if he needed anything.... poor thing.. he felt hot to me so I think the fever was going to come back.....but I hope the dose of Ibuprofen zaps it away!!!!!!

so yea, there it is.. extremely good news today...... and extremely shocking, bad news today. I really feel like 'it never ends'... or 'it's always something'... I try to have faith that it will all work out in the end but with days like today, it's tough to get over the hump of chaos!

The Big Day!

SIGH... tomorrow is the big day.. the ever so anxiously awaited appointment with OSU... errr maybe it's supposed to be 'eagerly awaited'... (YES I know the difference...)

Regardless of the feeling, it's seemed like eternity that this appointment would come. And it hasn't come without complications and scares...

First of all, I took last Thursday off to go to Neil's regular nephrologist appointment.. only to have child #3 with a high fever the 2 days prior.. and not being able to find someone to care for a sick child, I knew I would be staying home with him. To my dismay, I woke up last Thursday with the stomach flu!!!!! So I ended up staying home in bed with the sick child while Neil went to his appointment alone. I hated doing it but I told him he needed to ask a lot of questions and get details! He is so ornery that when he called me after his appointment, he informed me he was being referred to dialysis in 2 weeks. I was devastated and ready to burst into tears but didn't want to do it on the phone with him so I held back... only to have him say he was just kidding and that his appointment went really well! While I'm glad and relieved his appointment went really well, I was slightly peeved he played that joke on me.. NOT the thing to joke about.. let alone the fact I was already down and out feeling sick. The good and shocking news is that his Creatinine went down 2 tenths.. which seems rather odd to me but I'm not going to question or complain about that since that # is the key to his ticket to dialysis.. oh and he gained more weight which is either attributed to eating more, water gain or his kidneys increasing in size. The doctor wasn't alarmed that he's gained weight. (I'd joke about the weight thing more, saying I wish my doctor felt the same way about me, but Neil would quickly remind me that at least my kidneys are healthy.. so I tend to not joke around with him about that stuff... but ...)

So anyway.. all seemed well over the weekend and then Monday night we get home from school and child #1 complains of not feeling well! All I could think of was a repeat of last week and THAT'S not happening.. I am NOT missing this appointment nor are we rescheduling it so child #1 stayed home from school the past 2 days... and if that's not bad enough.. I WOKE UP SICK on Tuesday! Seemed the stomach flu decided to reappear! Not sure what's going on there but it came back and I stayed home Tuesday.. then today I woke up and had the worst headache ever along with all over body-aches and just extreme tiredness. I decided to stay home again today and rest up so that I'm better tomorrow. I am already feeling much better and have been eating normally tonight.

I have everything ready to go in the morning.. kids lunches are half packed.. I have breakfast to pack for them because I have to drop them off early.. thanks a million to my coworker who will watch them in the morning before school so that we can get to the appointment on time!!!! Love ya K!!!! I'm just finishing a school assignment and decided that writing would help relieve some of my anxiety over tomorrow.

Our donor, who has progressed to the next step, is still doing well and she's ready for this to happen! I think she just has to pass the glucose test she took this week and then I think the last step is a chest xray.. I think and pray we are close cause I'm tired of waiting.. I know other people wait longer and have a lot harder time with donors and being on the list but for me.. I'm tired of waiting and ready.. we are close and I'm excited but at the same time, I know that in an instant we can find out she's no longer a match and have to move on to the next person and go thru all this again.. I guess I will deal with that bridge when/if it comes..

Thanks again everyone for all the positive thoughts and prayers... keep 'em coming and I'll try to update tomorrow night.. but if I don't, don't be alarmed.. I might be too tired to get online.. but I will update eventually! <3

No news is still no news...

My math professor said in class today that some of the smartest people he knows are people who journal... people who write things down.. people who keep notes... reminded me that I should update.

Nothing new is going on. SIGH...


Neil sees his nephrologist this week for his regular checkup. He had his blood drawn this morning.. please pray his Creatinine hasn't gone up enough to start dialysis. He still feels really good so I would be surprised if that was the outcome of the appointment this week... but I never know what to expect at these appts.


Next week is the 'big' appointment with OSU.. the one that we waited and waited on this spring when we found out OSU and UHC were no longer in network with each other. Anyway.. now that we're back with OSU, I honestly haven't been 100% satisfied. Our coordinator is hard to get in touch with and the 1 potential donor isn't sure the next step as she's not had luck getting in touch with said coordinator. I'm really looking forward to next week's appointment though because we will meet with the surgeon AND get a NURSE coordinator assigned... the coordinator we've had so far isn't a nurse.


A good friend of mine, who is also a kidney transplant patient, sent me this link today on a new study on PKD... very interesting. Thanks Sue!


Please keep my other blogging friends in your prayers. Bruce has had quite a few complications while waiting for a transplant. He just recently found out he 'might' have a live donor as 2 people came forward to get tested! YAY! And his brother, Sean, has his transplant scheduled for Dec 29th.


Thanks for reading, commenting and praying. Your loving thoughts ARE appreciated!

Update!

It's been a while because it was the start of school and that is always a very busy time!
Also, nothing has really happened... However, today a lot changed!

I emailed Cincy to find out what's going on and they wrote me back telling me they hadn't heard anything... but that they would check with the lab again!

A little while later, they wrote me back and told me the results were in and they left messages for the potential donors to call them to discuss the results.. they wouldn't tell us the results.

I called OSU and they told me IF they had the results, they would tell us.. but Cincy had faxed the results to them and they hadn't received them yet.. so I called the one donor and left her a message, telling her to call them ASAP for the results! She called me later and said she couldn't get a hold of anyone by the time she got home from work... but that she would call first thing in the morning..

In the meantime, I get home from work and Neil tells me that the other potential donor called him to tell him SHE IS A MATCH so far... but there is still more testing to do and I'm not even sure of what the testing consists of.. but she "passed" the tissue-typing so it's looking really good so far!

Hopefully the other donor will find out tomorrow and we she will either keep on going or if not, we have someone else interested in getting tested!!!!

I hate how long this process is.. but it's part of it... hopefully it all comes together for us in the next couple of weeks so we can get it scheduled, get it out of the way and move on.. HA! sounds good and simple enough but.... we shall see! :)

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! :)

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... :)

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!!!!!!!!
WOOOOOOOOOOOOOOOOOO - HOOOOOOOOOOOOOOOOOOOOOOO!

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! :)

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!!!! :)

'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! :)

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

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: http://www.pkdcure.org/teambranson

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!

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 *

A continuation of me.. sort of..

Wow.. I'm not even sure where to start with this. Many of you probably don't know this, but I used to blog about 4-5 years ago and LOVED it! I stopped blogging when I started my current job.. I never did or said anything that I would regret... I just needed to stop blogging because I was super busy with my job.

And I've missed it terribly..

And have wanted to get back into it..

And up until this very moment, I've been debating about whether to start blogging again...

And as you can see, I made the decision to start again..

Only this time, it's not really about me as much as it's about the name of my blog,

"...in sickness and in health..."

Does that saying ring a bell? If you're married or ever been to a wedding, it should. It's part of the Marriage Vow from the Book of Common Prayer. The complete vow states, "To have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love and to cherish, til death do us part."

Now don't get me wrong.. I am 1 million percent in love with my husband, Neil. In fact, we are celebrating our 15 year anniversary on Thursday July 30th. We've had our fair share of all of the parts of the vow above... except "...in sickness and in health..." and to be quite honest, I'm not even sure that's the vow we said! (I need to watch our wedding video to double check!!!!)

Regardless of whether we said it at our wedding or not, it's still a vow or a belief or an issue that we should all promise to keep and not run away when tested... and that's what this boils down to.. I am facing this part of our vows and it's not easy... I need to write about it, to stay sane and to vent and to also keep friends and family updated on this process.

If you know the situation, skip the next part but if you don't... read further..

Neil has polycystic kidney disease. It's a genetic disorder that was passed down to him from his mother. She had her transplant in 2001 and is doing well.. Anyway, Neil was diagnosed with it in 1998, I believe. At the time, he was told he could manage it by taking blood pressure meds. He's not really a pill-taking kind of person so I don't think he took them exactly as prescribed.

Sometime in 2002 or 2003, Neil's nephrologist sat down with us and told us that kidney transplant was inevitable... not what we wanted to hear BUT.. we listened and he continued to tell us that if he was able to keep his creatinine on an even level then transplant would happen in 10-15 years and if not, it could be 5-8 years away.... well, guess where we are? We are at the point of finding a live donor in order to avoid getting on the transplant list... and that is why I am here... writing, venting, informing, updating, trying to stay sane, asking for prayers and learning what exactly "...in sickness and in health..." truly means.