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!