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.

Nicole's results are in....

I received a call from Nicole last night stating that she talked with Mayo and she is also a compatiable match. Wow I have 3 matches. That is great. Now I have to do the hardest part and figure out who would be the best. I myself called Mayo to get some questioned answered that I had and didnt get anything that I wanted to know.
I'm really frustrated because this is a big deal for me and Im having a hard time. I am going to call again on Monday to talk with another coordinator to hopefully get my questions asked. I would really like a medical oppion on who would be better for me.
I go see my Nephrologist on Monday to have more blood drawn again to see where my levels are at now. I will know some of those results and will share them with you all at a later time.

Happy Birthday!!!!!!

Wishing Jamie a very happy 27th (thanks Trina!!) birthday today. I will admit I had forgotten how old/young Jamie is. End of May, Parker will be 8. Lord how time flies. Jamie and I had a long conversation this morning about this. My mad hatter turned 5 today. Very fitting for me to give Jamie her first niece as a birthday present. I'm so glad I could make that happen!! For Jamie's birthday this year I followed the usual behavior and called versus mailing a card (well except for the whole niece thing..only time I was on time giving her a gift). I'm never on time with a card or gift, but I do make the phone call. I want to do something special in light of everything that's going on. I have the perfect gift in mind, however am not quite sure where/how I want to purchase it. I may need to do some research or suck it up and deal with nasty, gnarly, snotty salespeople. I might have to be drunk to do that.

Test results.....I may hear something later today, otherwise for sure tomorrow. Nicole (whom I have yet to find the words to thank) sent her donor kit in today and will get results end of week.

Happy Belated Mother's Day to all Moms!!!!

Volunteer donor

A friend and coworker Nicole Kelley has offered to do the blood test to see if she would also be a match. She is 24 years old and in good health. She called on wednesday the 6th and went through the phone questions and gave all her information. They sent out her a kit and she should receive by early next week. When she receives it, she will then go the lab and have all the blood drawn that is required. She will then ship it by fedex overnight. She will be able to call 4-5 days after she shipped it to get the results. Her blood type it A- which is a match for blood type.
She has offered to do this just incase my sisters dont work. Mayo will only allow 1 person to do the 2 day testing to make sure that there body is healthy enough to go through it. So I want more than just 2 people to test to see who would be the best. If for some reason, that 1 person goes through the testing and they find something else that would not let them go through the surgery then my insurance will cover for another to be check. My insurance will cover all of the blood work and testing that these girls are going through. My inusurance will also cover there surgery as well.
I am very thankful to all the people here that have offered to test. I already have been told by my surgeon that it would be best if I had someone within 10 years of my age to be a donor. I am on the waiting list so I can still get a phone call if someone in the region my age has passed away and they are organ donors and are a match I could get theirs. A living donor would be best but if the opportunity comes I will take it because I dont want to put my sisters or any ones else through the surgery and recovery.
I go on May 18th to see my specialist at Mercy to get my levels drawn again. I will know some of those levels at the office right away. I then have my last Chronic Kidney Disease class on May 28th. These classes give me all the information that I would need to get prepared for the surgery or if I ever have to have dialysis.
I am showing some symptoms of kidney failure but they are mild. Some signs are no energy, tired, some nausea, no ambition to do anything, and weakness at some point.

Can we say drug addict?

So I called ahead to the hospital to make sure I could go there to the lab to get the blood draw for this latest kit. I got all the instructions and went there at 7:45am so that I could get right in and get to work without having to take to much time off. I get there and they look at me like I've got 4 heads when I explain what I needed to have done.

They took me to a registar person to get me registered. What should have taken 10 minutes took 45 MINUTES. The entire system to register in patients went down and the woman had to register me in by filling out tons of paperwork.

So that woman took me over to the lab area and I gave the woman there the box and the order. Again, I got the 4-headed look. Why? So I get a buzzer thingy and sit and wait amongst all the other people waiting patiently. The woman at the lab check in asked who I registered, I told her, she picked up the phone to call. All this just to get some blood drawn. Geez!!!

I finally get called back and get settled in the chair that looks like an electric chair. She puts the stretchy thing on my left arm and then stops when she sees the crook in my arm. She asked me about the puncture marks. I told her that I donate blood on a regular basis and I've had two blood draws in as many weeks and for some reason they always go for the left arm. I almost asked her if she wanted to check between my toes and fingers for other track marks.

I got through that fiasco pretty much unharmed. Hungry and aggravated, but unharmed (if you don't count the large red mark from the needle that she left).

Keep in mind that I and the Mayo Coordinator decided that I would do the blood draw tomorrow since the lab was really busy. I went today because my tomorrow is pretty busy and today made more sense. So this morning I get a call from Mayo today reminding me to get the blood draw done if I haven't done it already.

So Tuesday should hold the results.

Test results are in....

and I have to go for another blood draw. Jamie has an antibody to one of my antigens, so this scheduled blood draw will help determine how Jamie will react (accept or reject) to my kidney.

This blood draw will take place at some lab (I have to figure out where/how tomorrow) and will be sent in like the first one was. The draw has to be done on May 8th and we'll get the results on the 12th or 13th of May.

What are antigens and antibodies you ask?

The key to a healthy immune system is its remarkable ability to distinguish between the body’s own cells (self) and foreign cells (nonself). The body’s immune defenses normally coexist peacefully with cells that carry distinctive "self" marker molecules. But when immune defenders encounter cells or organisms carrying markers that say "foreign," they quickly launch an attack.

Anything that can trigger this immune response is called an antigen. An antigen can be a microbe such as a virus, or even a part of a microbe. Tissues or cells from another person (except an identical twin) also carry nonself markers and act as antigens. This explains why tissue transplants may be rejected.

Antibodies are the proteins that can recognize (match) specific antigens. An antibody matches an antigen much as a key matches a lock. Whenever antigen and antibody interlock, the antibody marks the antigen for destruction.

http://www.web-books.com/eLibrary/Medicine/Physiology/Immune/Antigen.htm

Stay tuned......

With much sadness...

Kris Buseman has passed. At 7pm last night. And with much sadness, the kidney was not a 100% match for Jamie. We are saddened by the loss of Kris as she was a wonderful woman.

We ask that you keep the entire Buseman family, immediate and extended, in your thoughts and prayers during this time.

As for the kidney transplant, my blood type has been confirmed a match. I will call on Friday to get the rest of the results.

Phone Call.....

When I got into work yesterday I was told by my other coworkers that a really good friend of the family was on life support. She is only 51 years old and has 2 son's which one of her son's was really close to my brother and was with him when my brother passed. I was really heart broken to hear this. After awhile later I received a phone call from my sister Jenny, who works up at Mercy, saying that the family told Jenny that they wanted to donate one of her kidneys to me if she was a match. I started crying because this would mean alot to me to have her apart of my life.
After waiting for awhile more I contacted a family member Nicole Buseman and was talking back and forth to her about all this and they got information from me to give to there donor coordinator. They stated that they would call me if her blood type was a match.
I received another phone call at about 10pm last night from Nicole Buseman saying that her blood type is a match and they were going to test her kidney to make sure that there was no infection in them or any cancer.
This morning I received a phone call from there donor coordinator to ask me some question and to get the phone number to my transplant coordinator to get the papers filled out. All of this has been an emotional rollercoaster. Waiting to her from people and not being able to see the family to give my sympathy. I have not gotten a phone call yet back to finialize all of this.
I have to try to explain this to my 7 year old son that mommy has to have surgery and would be gone for about a month but that he can come see me anytime. This is I believe is going to be the worse yet. I love my family very much and they have been by my side every step of the way......

Donor kit results

On Friday, May 1st, Jamie and I will call the donor coordinator at Mayo to get the results of the kit that I sent FedEx on Saturday. I had to go to the lab for a cholesterol test and had the donor kit completed. It was just taking 5 more vials of blood in addition to the three for the cholesterol test. No biggie.

I did run out of the lab and to the nearest coffee shop for coffee and something to eat. It was almost noon and I hadn't eaten since dinner the night before. Thankfully I wasn't nearly as manic as I could have been.

Please keep Jamie in your thoughts and prayers and hope the results are good results.

Let's try it again......

So the doctor's appointment yesterday was uneventful. It was the first time I've seen this doctor and was apprehensive the moment I walked in. There was a male doctor that was loud and condescending. Fantastic. I got called back by the nurse, had to get on the scale that is in front of EVERYONE. Hateful little machine that was. I was put in a patient room and the door was left open. Condescending doctor was with a patient and had the door OPEN and was talking to this man about his colon infection and said doctor was going to cure it. I was appalled. I wouldn't want the ENTIRE office hearing about my colon infection. *shudder*

Anyway, the doctor came in (a female doctor in the practice) and appeared to have the personality of a rock. We started talking children and she found her personality. She gave me two prescriptions for a muscle spasm I've been dealing with for a while and the order for a cholesterol test. I walked down the hall to the lab carrying my little white box with MAYO - LIVE SPECIMEN ENCLOSED. Wouldn't you know it, the lab's policy changed and unless I was having blood drawn for something else, I was SOL. Because they didn't have anyone to bill. Bill my damn insurance. I DON'T CARE.

I go back tomorrow morning at 11:10am for a blood draw for the cholesterol test and to satisfy the requirements for Mayo. I pray for everyone that will cross my path. I have to fast and get nohthing until the draw is completed. Water only. I'm not a very nice or good person when denied food and coffee.

Doctor Day

Yes, I wasn't scheduled for the doctor until next week, but the kit came much earlier than expected and Jamie did ask nicely. My appointment is at 3:45pm. This is an entirely new primary care doctor since the kids and I went completely on Tricare (military benefits). I will miss my old primary care doctor. He was so pretty to look at....*sigh*.

Anyway, I'll have the blood draw today to satisfy the requirements for the kit and then will find a place to get this sent. I think the carrier is FedEx and I'm wondering if I could drop it at the UPS store.....I must investigate.

While I'm waiting for the doctor, I'm hanging out in a VERY quiet house. I spent some time at the gym before getting my morning coffee so I'm desperately in need of a shower. Which I might have time to do before my calls kick in.

I thought it was supposed to be sunny and warm today, but it's overcast and chilly enough for a light sweater. I've got the doors and a few windows cracked to air out the house. I really should be working, but I've got a letter to write for Mad Hatter's school and a few other personal errands (like Sam's...Chunky needs diapers and we are out of milk) that I've been putting off. Unfortunately Chunky is not potty trained and really has no desire to be, so diapers are an absolute MUST.

I did get the educational material about donation from Mayo. It didn't tell me anything I didn't already know except where the incision sites are. One happens to be in the perfect spot for a tummy tuck....I wonder if they'd just pull everything a little taught as a thank you for donating an organ. I did leave the material on the table and told Brent to read it to put his mind at ease. We'll see if he does.

The donor kit arrived.....

I received the donor kit in the mail on Saturday. It was a small white box with Mayo Clinic on the outside and Live specimen all over the outside. Of course the postman (who is very friendly and will strike up general conversation) waited with much curiosity while I explained to Madi why the box wasn't for her and what was in the box (my kids are gift nuts...every time a box comes in the mail they think it's for them!!). He offered all the luck in the world, commented on how nice our flower beds looked, chatted with the kids for a minute and went on his way.

I had made an appointment with my general practitioner last week giving the kit enough time to arrive. I will go on April 30th for the blood draw (well, 4 vials worth of blood) and will ship the vials to Mayo. 4 days after shipping I can call Kaye, our donor/transplant coordinator, for the results. If those all come back good, then I guess I'll be scheduling my trip to Rochester.

Oddly enough, I am no longer scared or nervous. More anxious to keep this moving. And my decision to do this feels right. I'm not second guessing anything or doing a lot of what-ifs. Whatever happens/will happen is what is destined to happen. Will it all be sunshine and lollipops? I sure hope so. Chemically induced or not ;).

If I haven't said it before, if marking organ donor on your drivers' license is not something you are comfortable with doing, consider donating blood. The lives it can save are worth it. It takes an hour, it hurts only when the needle is inserted and you get a treat after!

Day 1 of testing....

The first day up at Mayo started at 5:30am. I had to register and get thing going. I had to also check in at another area which did not open until 6:10am so we had to wait in a cafateria. After the office opened I got check in when they gave me a ton of information and then sent me to lab. Once I got to lab and called back they took 21 vials of blood. I didnt think I would have blood left after that.
Next was a ultrasound. I got to that area and got called back right away. When she started the test she had to push really hard on my stomach which kinda hurt. The test only took about 10min and then I got to leave.
Its now about 10am and I was on my way to another appointment. I also want to tell you that these appointment are not in the same location. We had to travel through subway level to get to the right areas. Walking back and forth to all areas, I think we all got a really good excersice.
I finally go to the radiology area where I needed a chest x-ray. I again got register but I hadnt sat down when they called me back. They were fast. They took a couple of pictures and it was all done. WOW how quick.
I also had to see a financial advisor that filled me in on insurance stuff and the cost of a transplant for a living donor. The transplant will cost approximatly 150,000 - 250,000 dollars.
My next appointment was a electrocardiography. I was still at the register desk when they call me back. This test only took about 10min as well. I was in and out.
It is now 3:00pm when I went to go see a doctor to tell me all the results from all of the testing. Dr. Talor told me that all of the testing came back normal and that they did not find anything unsual. Some of my blood levels are high. My creatinine is 3.8 and the normal range should be any where between 0.6 - 1.2.
This is a sumed up version of what my day consist of on Monday the 13th.

When it all started.

Well it all starts with when I was 11 yrs old, on a family vacation in St. Cloud, MN on a cabin resort. I started to get sick, which was a frequent thing for me back then because I was always sick with the flu like symptoms. It was like an every week thing. So it got to the point when I was so weak that I could not even walk up a little hill to get to the cabin. My energy had weaken so bad that I could not do anything. Once I got to the cabin , it got worse. I went blind. I was taken straight to the hospital but went unconsious on the way.
At the St. Cloud hospital they did a bunch of test but then I was life flighted to St. Paul Childrens Hospital. They continued to run more test when they realized that my right kidney never grew from birth. It was causing damgae to my body and my left kidney. Having this conditin also made me have high blood pressure.
Once all the testing was done, I went in for surgery. I remember laying on a cold metal bed and pushed down this hallway and it was very warm. When I got to the operating room and put a mask on me and told me to count down starting with 10. I think I made it to 8. So it did not take very long.
After surgery, I was taken back to my room on a ventalator. When they went to remove the breathing machine but blood pressure sky rocketed and my vials were unstable. They said that they about lost me (as me dying). They kept the breathing tube in unitl everything got back to normal. Eventually things got better and I got off the breathing machine.
About the next day I was up and sitting in a chair and feeling better. They moved me from ICU to another floor to recover.
I spent the whole summer of '93 in the hospital. This is my short story of how this all started.......