Please pray.....

I'm posting to ask for your thoughts and prayers right now.

Our cousin, Casey Jo, experienced a triple-arrythmia last week and while she was showing such improvement during the week, she has taken a turn for the worst yesterday and they aren't certain if she's going to pull through. She has a beautiful little girl who is almost 3 and a doting husband. Casey Jo is 27 and doesn't have a hateful bone in her body. We are all in shock over the whole situation, but even more so when we heard today that the outcome is looking extremely bleak.

More tests are being ran tomorrow so that the family has a definitive picture of what's truly going on and if she needs more time or if they need to make the decision to say goodbye.

Jamie and Mom are going tomorrow to be there for the family and for Casey Jo. I am there in spirit and have asked close friends that are prayer warriors to pray as hard as they can for certainty, knowledge, patience and comfort.

Today's update.......

HUGE apologies for the delay in updating. Life is just so crazy sometimes.

The poker run for Jamie was WICKED fun!!! Lots of people came, rode and played hard. People we knew, people we didn't know, family and old friends. Lots of Harley's and leather. So much love and thanks to those that came, rode, donated and had a great time with us.

Jamie, Jenny and our folks are currently at Mayo for Jenny's three days of donor testing. At this time, all is going well and as planned. Hopefully on Friday, we'll have some good news to share.

It's also our mom's birthday today!! HAPPY BIRTHDAY, MOM!!!!! The Girlz are taking the parent's to the mall, get Mom a haircut and then out to dinner.

Many thanks to those that have donated time, resources, money, thoughts and prayers for Jamie and Jenny during this time. It's heartfelt and so much appreciated.

Organ donation is such a big deal. In life, I am my sister's organ donor (if we ever have to circle this block again far into the future) and in death I am an organ donor for many. I'm encouraging you to research organ donation in death and if you are comfortable with it, just check your drivers license stating you are an organ donor.

If you aren't comfortable with that, donating blood is a wonderful way to help. It takes 30 minutes out of your day and could save a life. Plus you get treats when you are done!!!

All our love--

It's been a while......

So I thought I'd update a bit.

Jenny and Jamie leave for Rochester on Sunday the 23rd for Jenny's 2 day donor testing. I'm a bit edgy as I'm sure the girlz are as well.

Saturday, August 29th a poker run has been organized for Jamie. Lance, who is our cousin, organized and promoted the entire event. I can't tell you what this means!!! Auntie Marcia jumped in a got a bunch of stuff for prizes and raffles.

If you are interested in attending, check in is from 10am - 12pm at Chappy's on Main Street in Clarion. $10 per person or $15 per couple. All forms of transportation are accepted. I do believe my dad is driving the party bus, so let me know if you are interested, but would rather not drive. I can find out how many people Dad is already taking and how many he has room for.

The poker run will end at the Corner Bar in Belmond with a $5 meal (I think it's a burger, chips and soda), raffle/prizes, karaoke and much fun!!! We'd love to see you before/during/after.

Jamie's last nephrology appointment ended with her blood pressure and other levels remaining virtually the same. Seems Jamie's biggest symptom is lack of appetite and so she's been losing a bit of weight. That symptom is bittersweet.

Jamie and Jenny are hoping to have good news to share at the final destination of the poker run. We'll be posting back here with those results and a play by play of the run.

The 'Fight Like a Girl' fundraiser is still going on. If you are interested and need an order form or more info, email me at kimberelym@yahoo.com and I'll get you whatever you need.

As always, thank you SO much for your thoughts and prayers during this life altering event. Many things are changing on many levels and a blog isn't enough to share all of that. I can't explain how this all started so foggy in the beginning and has become more clear as time passes. Not only with Jamie going through this but other areas of our lives. Some things are not so important anymore, some relationships are becoming stronger and others are weakening and falling apart. Individuals are growing confidence and self esteem while others are imploding. It's been surreal however it's been a long time coming.

Sorry so late.....

Ok so Nicole had her two day work up done on June 22nd and 23rd. These day consist of blood work, x-rays, ct scan and visiting with doctors and consultants. The days started at 6:00am both days and ended usually around 3:00pm. From what Nicole said the ct scan was not fun. With the dye that you get injected with made her feel funny and get really hot. She did not like that very well.
After we got home the next morning she receive a phone call from Mayo, because some of the testing was not completed yet, to tell her that the tissue testing that they did would not work in my body. Which means that my body would have a high chance at rejecting her kidney. Nicole was heart broken. She came and told me at work that afternoon and with out good friend Jodi Braun there we all started to cry. I was also heart broken because she had to go through alot of testing. I thought to myself now I have to start all over again when I thought I was at the end.
After sobbing for a while we finally pulled ourselves together and told each other the no matter what had happened we would still be apart of each others lives.
My middle sister Jenny now has her two day work up at the end of August. So I PRAY that this one will be it. I dont know how much more I can take this. If I ahve to wait any longer I may have to look into dialysis. I DO NOT want to go through that. My next nephrology appt is Aug 10th so my guessing is that we will start talking about it because the waiting is getting longer, but you cant always predicted whats going to happen. If I do have to be on dialysis I will deal with whatever comes my way. I have great friends and family that will helpme through it.

Much needed update

Jamie knows she needs to do an update to her last post, so I'll let her do that. I wanted to update that a fundraiser is currently being done in Jamie's honor.

Jamie has some lovely girlfriends that are doing a 'Fight Like a Girl' fundraiser. You can get the order forms from Jamie, Nicole or Jodi Braun if you are in Belmond. If you want a copy electronically, send an email to kimberelym@yahoo.com and I'll email one to you to print out and send in.

The Green Ribbon is symbolic of kidney disease/donors/transplant recipients and Fight Like a Girl has T-shirts (short & long sleeved) and hoodies with Green writing and green boxing gloves.

If purchasing apparel from the fundraiser isn't your thing and you'd rather do a different sort of something, send me an email at kimberelym@yahoo.com and put 'Jamie Moore-Claude Fundraiser' in the Subject line and let me know your thoughts. Many hugs and thank you's to those that have blessed Jamie thus far!!!

We had a fantastic 4th of July together this year and celebrated Jason with friends and family. While it was emotional to see all the pictures and chotcky that Jason was passionate about, it was heartwarming to know what he meant to so many and to remember him with his friends. Thanks to all that came to celebrate with us. It meant a lot to our family.

2 Day work up

I have chosen Nicole to go through the 2 day workup. This will take place on June 22nd and 23rd. We will have all the results on the 23rd. If this goes well then they will take case to the board to discuss all this. I believe this will take place the 1st week in July. If they approve then we can schedule the surgery which I was told if could be the end of July.

I have chosen Nicole because she is 2 1/2 years younger then me so the life expectency of the kidney will potientially last longer. This was very hard for me because I have 2 two sisters, who I do love very much, that were also a compatible match but I just couldnt put them through this. I dont really want to put anyone through this but I had to make a decision.

I am scared now that this is getting closer. My appointment that I had with my Nephrologist went as normal as it has been. My creatinine level is still 3.8 so it is stable right now. The symptoms that I do show are not bad, which is a good thing.

This time of year has been hard for me and I am sure my family because in July it will be 10 years that by brother Jason has been gone. I miss him very much and trying to deal with all of this and thinking about him has put alot of emotions on me. We are having a memorial party at my parents farm in memory of him over for 4th of July. This will be a emotional roller coaster for all of us.

Patience, patience....

I've been told by my 5 year old that patience is a virtue. In times like these, who has patience? Certainly not me. Nor my sisters.

Jamie's post mentioned that Nicole's kit came back a compatible match. Everyone is excited that Jamie went from the unknown in regards to living donor options to having three COMPATIBLE options and here is how it went down...My kits were submitted simultaneously with Jenny's and Nicole's was submitted while I was waiting for final results. Jenny was a compatible match all along. I had to submit a second kit because of the antibody/antigen thing and got results on Jamie's birthday (I was in Toys R Us shopping when Mayo called) and Jamie found out about Nicole's results on Friday.

SO, I'm sure you are asking what are next steps. Well, that's making the decision on who is going to share organs. There are pros and cons for each one of us in donating. We are weighing those amongst ourselves and Jamie has had her questions answered by her coordinator this morning. All three of us will give Jamie whatever she wants (however I told her I wouldn't shave my head for her), but the most important is making the decision on what's best for Jamie.

It's a very hard decision to make even though it could be a sibling or extended family member. Did I think twice about it? I sure did. Was I being selfish? Yes I was. I thought long and hard about my decision and realized that I couldn't live with myself if Jamie had no other options but me and my selfishness put Jamie through medical hell for years while waiting for a donor. Once I made my decision, I was very comfortable with it and seeked out living donors to hear their stories. I educated myself on the potential complications, what the surgery entailed, what recovery was like and what life was beyond donation. It's not life threatening, complications are the same as any other surgery, recovery is a few weeks and life beyond is no different.

To have my sister physically with me for my whole life is more important to me than a few weeks of pain and slow moving. And we'd have matching scars!!!

Organ donation should not be done to bring attention or sympathy to oneself, illegally to extort money or as a means to hold it over someone's head for material items/favors. It should be done willingly and to SAVE A LIFE.

www.matchingdonors.com is a resource that has appeared in segments in the local news, the Today show and various other media outlets. My amazing daycare provider watched a segment and shared the link with me. If you are serious about donating an organ, whether being a living donor or a donor in death, I urge you to check out the link.