WHAT????

So I went to give blood again today and they were running about 10 tests on me for UMC Las Vegas.  I am in the Quest Lab and the front desk girl (who knows me since I am there every week)  tells me that she can't do 2 of the test because it is spinal fluid and they have to do a spinal tap.  It was a quiet waiting room and you could hear about 5 people give an UGH all at once.  We all started laughing and I said "Why did you tell me that?"  she said "I have to tell you it is in the spine."   So here I was thinking Oh man, every time I think I am handling things really well I get another curve ball.

I have just come to terms with accepting a tube in my stomach in the next month and now I have to process getting a needle in my spine?  It was bad enough doing it twice during labor but again??  REALLY??  Come on, give me a break!!!! 

Sometimes I think I just want to break down and crawl into a ball and cry.  But I do not let myself get down- I am not sure if I would even know how to break down and cry at this point.  I have to keep going for my kids and I have to keep working to make money until I can't work anymore.

It is hard to have to keep letting go of things- I can't exercise right now because I get winded and my body isn't toned which drives me nuts- I can't eat the foods I want- or go dancing- or keep the house in perfect condition like I want- I can't take my kids to disneyland or any mini vacation anymore-- I can't work and do sales like I want- I can't make long term plans or make future plans- all of this drives me NUTS!!!!!

Ok done with my pity party!  Doug is a guy who had a transplant the end of Feb. in Pittsburgh and is coming back to Vegas this week, I can't wait to go out to dinner and hear all about his experience.  Most of the patients are elderly so it will be so nice to talk to someone in their 20's who has gone through this!!  I look forward to the day I get to post I am on my way back to Vegas!    Congrats DOUG!  I am so happy for you :)

PS- still no word on UMC Tuscon and Sara....BOOOO   they need to move faster!! 

So Bad.....

My kidney doctor pushed my appointment back to Friday.  I went to give blood and my veins have been stuck so much they were not able to give blood so we had to wait and try again.  Hopefully my numbers are not too bad tomorrow.

On the bight side-I know this is bad...but my general surgery appointment was re-scheduled until next week.  I know I should not be happy to have the dialysis pushed back but I am.  This means a few more weeks before we get ready.  My appointment next week is just a consultation so I still have time before we do the tube into my stomach.

Oh well- I am still going out on Friday even if it isn't my last weekend of freedom I am going to pretend it is...maybe I will order a different type of salad for dinner and mix it up a bit...LOL.

Groundhogs Day

I feel like it's Groundhogs Day again and again...start my week, give blood, give blood again, visit the doctor, work, visit another doctor, work, get sick, work, hang out with my kids and friends and start the week again.

I am going CRAZY!!!  I wish I could take a vacation :)  So to sum up my week I have given blood at UMC to get on the donor list for a cadaver. Hopefully I will be on the list in the next few weeks so my back up plan is in place.

UMC Tuscon is moving but slow.  We are still waiting to hear if Sara is a go for donor and waiting for a date for transplant.

In the meantime since my kidneys are at about 7% I have to start dialysis.  So on Thursday I meet with my kidney doctor to review my numbers- a weekly visit.  Then on Friday I meet with General Surgery to have my consultation to get the catheter in my stomach for PD, which is a form of dialysis 10 hours a day 7 days a week.  Once I get the routine I will be able to do this from home at night.  But it still grosses me out to think I have to have a tube put in my stomach.

I can't wait for Friday to have a little ME time and go out with Rumi.  It will be my going away party to my normal body and freedom of not being tied to dialysis.

Last weekend was spent with the kids and friends all weekend.  We did a lot of eating out- which isn't as much fun for me but thank goodness most places have Caesar Salad so I can at least order something!!

Here are a few photo's of our fun weekend and past week. 

At 5 guys before Dad Left for airport.

At Grimaladi's playing with pizza dough.

At Jason's Deli- Jo with her stache

At Sweet Tomatoes with Besties!

Girls at Rango!

Future Bunnies!!

Alexa's teacher has her hooked on NCAA :)

Not Yet...

No news yet- just waiting on Sara's next test results next week.  I am seeing my kidney doctor weekly now so on Thursday I will know again if I get to go another week without dialysis.   I am feeling good and getting back to routine which is nice.  Once again so glad it is the weekend!!!!

Dad went back to Minneapolis tonight, so I hope he enjoyed the warm weather while he was here!

Photo of the girls and I at dinner with Dad before we took him to the airport.  Jordan's allergies were killing her so don't mind the sad face!!

Free at last!!!

So yesterday my neph (kidney doctor) said if my levels go up I would need emergency dialysis.  This morning they went up .10 so I knew it would be a judgement call.

Since I feel good and not sick he is releasing me back into the wild!!!  Although I have to be monitored daily with blood tests and meetings that is only 1 hour each morning so I will take it!

I am hoping to avoid dialysis all together and go right into transplant but I will let you know :)

2 of my iron infusions are done...just need 3 more!  Here is me during my iron treatment.

I also want to say thank you to: jane, garry, deacon, alexa, jordan, pat, gary, rumi, holly, khamla, stefan, elisa, collette, sara, ethan, mike, rhian and many others for the flowers, magazines, stopping by for gatherings in my room, going to my dinner party even though i couldnt be there!!!  And thanks to all my girls back home who reached out by phone :)

Oh Boy.....

Well this might be it!  Tuscon may be around the corner.  To make a long story short my kidney's are getting worse so I have to stay in the hospital another day to see if it was the blood pressure medicine that made them get worse or if they are shutting down for good.

There are so many possibilities and options I really can't list all the outcomes, all I can say is we need to wait a few days to see what the plan is.

At least I have Internet now!!!!!

This resort sucks!!

I am going to have to find the manager and complain!  The room service is too slow, housekeeping comes in at all hours and the movie selection isn't very good.  At least i was upgraded to a room with a view of tjmaxx...how lucky is that!!

Ok really the staff has been great!  Food really does sux.  They are keeping me one more night to make sure i am stable.  Still no dialysis as we are holding off for transplant.  Doctor said if saras test come back good it should only be a few weeks!  Cant wait to be back to a normal life!

Also there is an older lady who has been crying since last night...she sounds like a few month old baby so i get to listen to that half the time. I almost want to go hold her and tell her it is going to be OK.  Instead i put on beats by dre headphones! Thanks dad :)

Look who came to see me!  Sorry about my bad grammar...on my cell typing.

Hells Bells

Blood pressure spiked and ended up in ER.  They can get it to lower so I have to stay the night at this lovely resort with 5 star food.  I am so sick of all of this and just want it to be over!   On the bright side they said I could have had bleeding in my brain from the pressure but my cat scan came back clear!

Eye of the Storm.....

I knew it would get worse before it got better but I was not prepared for all the curve balls being thrown my way.

After my doctors appointment today I thought, I am not posting on my blog, it is too personal and I am not letting anyone know I am getting worse as I feel it is a sign of weakness.  But after sitting on it a couple of hours I have realised I can put my ego aside and not always be the happy go lucky strong person and be OK with getting sick.  And I also committed to sharing my story so why stop now.

Hell, where do I start?  I am at 9%- nothing new I expected it to be lower and my creatine is at 5.85 - which I was OK with hearing that awful number.  I have to go to my regular doctor and get a B12 shot on Thursday- I can't remember why but I must need it.  Now the wrench in my plans- I am severely anemic and at this point my Doctor feels taking iron pills will not help so I have to go into the hospital 5 times to get an infusion of iron for 1 hour each time.  I guess it should help me feel better so I am trying to think a few hours out of my day for the next week is a good thing.

He also said I am now at borderline of dialysis- I am getting into the danger zone.  So hopefully we find out this week or next week if Sara's final test was a pass.  By my next appointment in 4 weeks if I do not have the transplant ready I have to start dialysis.  Also- the dialysis I want takes up to three months to have a surgeon put the tube in my stomach so I might have to do dialysis in my neck in the meantime.

He also said I can't be sick before my transplant so if I start to vomit- (yes a lovely side effect of kidney disease) I have to go into the Emergency Room to have the dialysis done in my neck asap.  So you can imagine how bad I want to stay feeling OK.  I have not had any nausea in the past few weeks and now I pray that I do not have this until I get my surgery.  I mean the neck?  really?  How freaking gross!!!!
I am so glad my mom was at the appointment with me because I can't go to these bad new bears meetings anymore alone.

So after getting all this overwhelming information at the doctor I had to pull myself together and went to Caesars for a meeting.  I didn't think I could put on a happy face but I found the strength to be OK at that moment and when I saw my friend Michael who is always so good to me I knew I could push through this.

On the bright side- My Dad is coming to Vegas tomorrow to help me with the doctors and kids and shopping so I feel I will not be as overwhelmed as before.  Oh- I forgot to mention no more protein at all- I had to cut meat way down but now I am on a strict vegetarian diet.  So glad Sara and Collette are coming over Saturday to hang out and make Vegan Burritos :)  I am sure between Collette being a vegan and My Dad's Wife being a Vegetarian I can get some good recipes.  I love to cook so I am not eating plain food- I need to get ideas for great meals.  I guess I need to get a Costco size bag of chicken nuggets in case my kids do not like the new menu.

I am in a really good place again, feeling like I can conquer the world if only my body would let me.  Everytime I get knocked down and think I am going to breakdown I pull myself back up and become happier in life then I was before because What is life really?  Just a bunch of setbacks and rollercoaster rides so I might as well enjoy mine.

Until I write again! 

Summer in Arizona

There is nothing more that I want then to spend the summer in Tuscon for a few weeks.  While I will miss my kids I can't wait if all goes well.

On that note Sara did her blood tests and she is compatible to be a donor.  We have more tests next week and at any point she could be denied but she passed the first step.  I am SOOOO Excited today!!!!

Found the hotel I want to stay at and I am already learning the area.  I will keep you updated- hopefully we will know if she passes the next round of tests by the end of next week.  UMC Tuscon said that they will make sure it goes pretty fast so I am ready to fast track this surgery.

I hope I can get a visitor or two to come and see me so I am not bored out of mind!!  I would love for my kids to come down but they are walking germs so I think it is best to have them go on vacation with Deacon while I am gone and I will see them when I get back.  Thank Goodness for skype so I can still see their faces everyday for a month.

My Hero....

I hope Sara doesn't read this or she might get a big head....HA HA.   Ok seriously I just have to say that no matter what happens, even if they say my sister isn't a match or she can't donate I already feel like she is my hero for giving me hope.  Hope has made me push through and stay positive, feel better and have something to look forward to.

For anyone who decides to even test to be a donor it is such a selfless choice.  I am so proud of her for stepping up and offering her body for me yet again- when I was having a hard time getting pregnant she offered to carry a baby for me- although I was lucky enough to carry both of my children.  Anytime I need her she is there for me. 

We never hang out that much even though we live in the same city- unless I am having a margarita laying in her pool I don't get to see her often.  However, the past few weeks we are spending more time together so whatever happens I am just so thankful for the fact that I have Sara in my life more.   Now I just have to talk her into not ever wanting to transfer back to the twin cities for work!!  Sara- you can have the house in Malibu if you stay :)

Here are a few photo's of our outings.  PS- I was not drinking in the photo's it was in a nightclub and the flash kept making my eyes squint so the last one I tried to open them really big!!

Thanks Collette for always having a camera!