Update

Just an update on my progress:

Went to Doctor and had my first round of TB tests, and my flu shot.  Then I got the flu!  Yes that was a long 5 days of Jordan, Alexa and Myself being sick with the flu.     And the nurse who gave me the flu shot did it so bad it hurt for days and bruised my arm.

Went to the Dentist today- 4 hours of filing my 3 cavities and doing deep cleaning and laser bacteria treatments to prepare for my surgery.  I have one more round of the laser treatment on Tuesday.

Have to go back to the doctor on Thursday for a second TB test and a Pneumonia vaccine.  So now that leaves getting my hepatitis shot- and those not from Vegas do not understand how bad this sucks.  I have to go to the health district and wait in line with all the casino workers and it could be hours to get this done.  YUCK!!

And tomorrow I get to fill out my living will and go have it notarized....and give blood which I need to do every 3 weeks at Quest.  This is becoming a full time job on top of my full time job :)

And the Mass on my liver- they have decided to do another MRI and then I go to the GI Doctor to review the MRI's for the past two years and give me clearance that is does not look to be cancer or a hemo mass.

So just in time for Christmas I get to start my transplant testing!!!  THIS IS GOOD.

After getting over the flu I feel really positive and ready to take on the world again.  I have been doing a ton of sales and booked up 2011 with clients.  I am really excited to take a break from everything for the holidays.

Side Note- to all my girlfriends that text and email me to get together.  My days are so filled right now with trying to work, attend Holiday Parties for work and all my doctor/dentist I am really not trying to be such a flake of a friend and not having play dates etc.  I am putting in 16 hour days between getting all my tests done and working my job and my kids.   Please forgive me :)

The girls are having a cheerleading performance at Galleria Mall on Saturday at 4PM- should be a lot of fun. 
Then dinner afterwards with the girls, a perfect weekend finally after being stuck inside all last weekend.


Just to add some color to my blog here is my arm after a week from my flu shot- the bruise was better but still not going away.

Change of Plans

I was all ready for a very busy weekend of girls fun when I woke up this morning to an even sicker child.  Yesterday Jordan was not feeling good, thought is was a cold, then strep throat but now she is throwing up.  So before I could even get her into the doctor to check her throat she started to get very sick.

So tonight's event with Cameron is on hold.  Now I just have to see if we will make it to snow days and have the Ripandelli girls over.  And have Cameron over also as soon as we can.  I was so excited to make cookies and hang out.  I am a little nervous if Jordan is sick all weekend that I do not go into a funk sitting at home with my thoughts.  The days are not bad but the nights when the girls go to bed are so quiet it gets hard sometimes.   I think a lot of baking- homemade mac n cheese, maybe homemade bread and cookies will be a good weekend with a sick kid.  Maybe a beer or two in between :)

On a positive note- here is the flyer for snow days- take your kids and enjoy the fun- hope we get to be there!!  and a photo of my baby :(  

SLOW DOWN....

Two posts in one day...it's a record :)  I can't slow down, maybe this is how I cope, I am not sure yet.  When I got home from the transplant meeting I was off again.  Holly took the kids to Chuck E Cheese so I took the opportunity to go out with Rumi to Rounders.    Since I have had kids I have been such a homebody- always having people over but never wanting to really go places.  But now I just can't seem to sit at home, maybe it is the fear of the lifestyle change with dialysis and being stuck at home or maybe I just can't sit at home with my thoughts.

I have booked myself up this weekend with the girls friends coming over so I hope this curbs my appetite to be on the go.  A good girls weekend of making cookies, playing WII, slumber parties and painting nails should keep me calm.

I am so thankful to have such good friends in Vegas to support me and take time away from their families to hang out.   I miss my girls in Minneapolis so much but feel so lucky to have great friends here!!!

OK I am going to try and get some sleep before more doctors and work tomorrow.

Rumi and Molly hanging out !!!

Oh...where do I start....

First off I want to thank everyone for the facebook posts, emails, texts and phone calls.  The outpouring of love and support is beyond what I would have ever dreamed.  I am so lucky to have so many friends and family all of the world :)

So today I had my first transplant meeting with my coordinators and social service workers.  There is so much information to pass on I will just break it down what is happening at this time.

Tomorrow morning I start preparing for my transplant tests- getting flu shots, and immunizations, getting my dental records cleared for surgery (can't have any cavities)  and getting my referral to a GI doctor to decide what to do with the mass on my liver.

After all my preparations are in order we start the actual transplant testing in the next few weeks- not sure what I have to do but I am sure it will be a battery of tests.

Once I complete all the test I am put on the transplant list- I have requested to be put on duel lists- UMC Tuscon and UMC Las Vegas.  I did ask about Minnesota but the hospitals do not  work with Deac's insurance. 

So I have two options:

1.  Cadaver Donor- Once on the transplant lists I will tour both hospitals and meet with both transplant teams to answer any questions and have the drill ready.   If it is UMC Vegas I will have 2 hours to get to the hospital and stay for 5-10 days after the transplant and then be at home for up to 12 weeks.  If it is UMC Tuscon I will have to drive to Henderson airport ASAP and get into a Medivac Helicopter and fly to Tuscon for my transplant stay in the hospital 5-10 days then stay at a hotel for up to 12 weeks.

2.)  Living Donor-  Should I find a living donor that matches we will schedule an appointment for transplant and same thing hospital then at home if Vegas.  The donor will be 2-3 days in hospital and then a a few weeks recovery off work.  This is a tough one- although I would like a living donor I would in no way want anyone to ever feel obligated just because oh let's say they are my sister :)  This is a most selfless act and I would not want anyone who is being tested to take this lightly.  It is not an easy road for the donor either and this would have to be something the donor and only the donor really feels they would want to do.  I would have the same respect and love for my sister if she said it is too much and couldn't do it.

So in the meantime- if I do not get a living donor in the next month or two I will meet again with my Kidney Doctor we will start to prepare for the tube to be put in place for dialysis.  My case worker said if I choose to do the 3 days a week in center dialysis I would be considered disabled and go out of work on disability but as much as I would love to not work I do not think this is a good option.  I think the 10 hours a night 7 days a week is a better choice.

If it looks like dialysis is coming I will be going back to Minneapolis for a mini vacation and a last girls night out before I am strapped to my house every night.....so get ready ladies!!!

I am very lucky to have such a great family to support me at each medical visit.   Deac is applying for Family Medical Leave so when I do transplant I do not have to worry about my two baby girls and knowing they are with their father will bring me much comfort.  If I do go to Tuscon I hope they will be able to come down and visit with me at least one time.  I will not be alone in Tuscon as my Dad and Mom could both take turns staying with me in the hotel so I do not loose my mind. 

I hope everyone has a great Holiday and remembers even when life is hard you always seem to make it through.   I am trying to stay busy with friends and family so I do not get depressed or feel sorry for myself, I am on overdrive these past few months- it is really hard to just sit at home alone at night when it is quiet.

Here are a few photos from our adventure of today- my caregiver team- minus my Dad who is in Minnesota :(

Deac, Sara and Mom

Deac, Me and Mom

GOBBLE GOBBLE

I was able to take some time away from all the paperwork and phone calls for my transplant to have family in town and make Thanksgiving Dinner.  We celebrate Thanksgiving on Tuesday because so many of our family members work on Thursday at Casino's.   It was a grand total of 15 hours of cooking but a lot of fun and a lot of beer.  
Holly (My sister in law) and I started on Monday night preparing breakfast for the morning and getting the birds ready- all three of them!!  I can't even tell you how funny it was to try and get Holly to pull out the neck from the cavity.   I haven't laughed so hard in a long time- it was a really fun night.
Tuesday everyone came over and we ate and ate and ate...I learned I made way too much food.  And the desserts everyone brought were also way to much, but it was great.   Now on the real Thanksgiving I get to hang out at home with Alexa and Jordan all day and relax, which I am really looking forward to.
OK- off to Jordan's school as I need to bring the Turkey I made for class in for their party.
Hope everyone has a great Thanksgiving!!!!  Will write again after my December 1st transplant meeting.
(I have added some photo's of our events that past 2 days)

Holly Getting the Bird Ready!!!

I think she gave up- it feels gross she says.

So I had to do it, Thanks for the bunny ears JO!

Both girls helping their Mom :)

Alexa filling the water for the brine- can't even get her to put her book down for a few minutes!!



Done for the night now we get to relax.



Hanging out before everyone came over.

Our finished product!!

The Name Places the Girls made for everyone!

Never can have enough sweets!

Phone Call Today

Got the call for my first transplant meeting-  Oh great, today of all days- I was already emotionally beat up from work.    December 1st at 2:00PM we will have your first meeting with UMC from Tuscon.  Here is the write up- A consultation with UMC’s transplant physician will be scheduled. The evaluation begins with the consultation visit. Meetings will occur with the transplant financial coordinators, clinical social worker and transplant nurse coordinator. Laboratory and medical tests will follow.

Oh well. onto to better things- Tracy is coming this week so I get to forget all my troubles for a few days :)  And next week Deac's brother and family are coming.  I am making 3 turkeys- 2 for the 18 people that are coming over to my house and 1 for Jordan's first grade class plus multiple side dishes.  Wish me luck- it will be a day of cooking next Tuesday- I will post photos and rise to this challenge!!!  I can't wait to see my best friend and my family, what a great week.  Mols

SHIT....it happened again!!!

Well I was hoping that the last time I went to the Doctor and was told I was close to the end it was just a fluke.  However, I had another appointment today and got the bad news again...only this time it was WORSE!!!  I am now at the dreaded 20%...the number I always was hoping to not hear.

I will write later about what I learned at my dialysis class- although I wasn't paying as much attention as my sister or mother. 

So just to give you the news of the day:  They are setting up a meeting with the transplant center to start testing me to get me on the transplant list.   I am also starting to get my testing done to put the tube in my stomach to start dialysis.  I am not sure what the tube is called cause I was not paying attention- I was too busy giggling at the ant's that were crawling all over the room and on my family. 

I also have to get cleared for the mass on my liver to make sure it will not interfere with my transplant so more Doctors and MRI again.

As I learn more I will let you know but for now what I can tell you is I choose a dialysis that is done through the stomach at home for 10 hours a night.  We just moved into a 1 story house so I can drag the machine around the house and will not be strapped to my bed for that long.

Today I am thankful that this is not a death sentence but a change in lifestyle and I am thankful I have a job that I work from home and can even work in bed when needed.      The scariest thing to me right now is not being able to wear my skinny jeans anymore- the tube is place right by the belt so I have to choose clothes that do not push on it :(  BOOOO......

Here is a photo of what it will look like :)