What was I thinking???

 Note to self:  It is better to be sick then have a hemocath in your neck.

OUCH!!!!!!!  Today I am regretting my choice.  2 weeks from today I will be on the operating table.  It is amazing the pain your body can endure.   And yes like Chuck said- the next time you complain about having allergies I am not going to give you any sympathy...do you see the tube in my neck? 

PS....pray for the victims of the tornado's...so sad!!  so sad!!!

Get out the bikini!!!

Well it seems I am going to be rockin a new body in my bikini this weekend.  Because I broke down and got the haemocath put in my neck/chest.  I was so sick the past couple of days- getting a catheter in my neck sounded better then being sick.

So this morning I went and had it done.  It hurts- not too bad but the top part has stitches to hold the tube so the stitches really hurt.  Now I get to do dialysis on Friday, I hope this makes me feel better because there are many things I want to do this weekend- including going out for a bit :) 

We like to hang at the pool a lot so I am not giving that up- just getting a new bikini that fits the tubes.
I know at my friends pool's it wont be a big deal but if we go to the apartment pools or hotel pools I might get a few looks but I think I really don't care.  I have to wear this tube until June so I might at well just make it an accessory :)

Now here is the main question- it hurts to wear regular shirts or undergarments (trying to be a lady)  so I really can only wear halter tops the next week until the stitches heal.  Do I just wear the tops and let the tubes hang out?  Even at school and scare the kids?  Or do I wear a small soft cardigan to cover it up- even in 90 degree weather?  What to do what to do....

Here are a few photo's to see what I am talking about!!  Ignore the orange color from the iodine.    Can you see the tube under my skin???  YUCK..not very sexy at all. 

May 12th

Looks like we are leaving May 9th for a May 12th surgery.  Just waiting for UMC to send the plane tickets so I know what flight we are on.  Booked the Radisson right by the hospital for family and where we will stay after we are let out.  They gave us a great transplant room rate so it was a better deal then most other hotels.

I really don't feel good again so I am going to decide on Monday if I am going to just go on bed rest for the next 2 weeks or if I am going to get emergency dialysis in my neck this week.  I think I am leaning towards the dialysis.  I never wanted it but I can't take the pain anymore.

Not sure when I will post again as it is getting harder each day to just get out of bed.  I am just trying to hold on for the surgery. 

They will take Sara's kidney first which should be about 3-4 hours of surgery start to finish then they will operate on me and put her kidney in- not sure how long it takes but I think I am longer then her.  Sara should be in hospital for 2 days but then she has to stay at hotel and come back to hospital for check ups for a few days after.  Within a week she will be back in Vegas but on restriction and can't even drive for a few weeks.  I will be in hospital for 4-5 days and then in hotel for up to 10 days they are thinking depending on how well Sara's kidney responds.  I can be in Tucson for up to 8 weeks but they think 1-2 weeks and I will be released back to Vegas. 

My family will post on my blog and put photo's hour by hour during the surgery so everyone can follow along with what is going on.   So be sure to mark your calendar for May 12th to check back on the blog to see how the operation is going :)  Wish us luck!  I can't wait to not be sick anymore.  Look out world...Molly is coming back! 

On the list!!!

UMC Las Vegas called and even though it doesn't mean much I am on the donor list!!!  YEAH :)  That means I am good to go for surgery.  And if anything happens and Sara can't donate I am now on the waiting list for a cadaver kidney.

Feel like total crap again today!  That shot to bring up my hemoglobin is not working at all,  I have no energy.

Will write tomorrow when I meet with the surgeon.

Holding On.....

Had insomnia- didnt fall asleep until 4:30AM.  Woke up today feeling awful!  Everyday it gets worse and worse...I hope I can hold on 2 more weeks :(  I know I don't post often about how I feel but it is usually like CRAP.

That's my post today!  At least the sun is shining so another day of sitting outside for spring break!!!

I'm leaving on a jet plane...

don't know when I'll be back again!!  Hopefully May 12th, that is the projected date.  We have to go down 1 week prior so they can run mutiple tests before the surgery.  My sister, me and my friends in Tuscon for a few days before we do surgery.....CRAZY :)  

Sara and I are meeting with the Chief of Transplant Surgery on Friday at 9:00AM, I hope to get all my questions answered.

Getting my shot tomorrow to bring my hemoglobin level up a bit- it is in my stomach which I HATE, but learning to just suck up any pain and deal with it.

Went to the pool again today!  Sorry MN peeps....Spring Break is so much fun!  Work a few hours, go to pool the rest of the day with friends and hang out at night with friends.  I felt like crap today so it was a good day to just lay in the sun all day.

Tomorrow is party with teachers- which are always fun to go and have girl time.   If it is nice I will work on my tan again before we go- Heather, Rumi and I are going to be so dark before break is over!!!! 

OK Then!

Still waiting...just received this email from UMC so I guess we still will not know anything for a bit.

Received Sara's Angio and have given it to the surgeons for viewing. We will let you know what they think as soon as we can.
Thanks!

On sunday we hung out at Sara's Pool all day which was a blast!  If we can't take vacation this year at least we can still act like we are on vacation!  It is spring break and the kids are having so much fun and so are the mom's :)  Here is Chuck (sara's best friend) and Rumi and me at the pool. And the kids! And us Girls!

Whew!

Good day today!!  Oh how thankful I am that I do not need to go and get Emergency Dialysis this week.

Mom sent Sara's Angio Fedex to Tuscon so hopefully when they receive it tomorrow they will look at it and give us a date.

Thank you so much for all the letters, emails and donations.  I don't have enough energy to thank everyone individually right now but please know from the bottom of my heart I am humbled.  All this for little old me?  It just blows my mind how much love and support people are sending- a lot that I do not even know.  Air Traffic Controllers are some of the most giving and loving people!!

Sara Jayne is not only my hero but she is now saving my life.  I wish I could go back to Teenage Sara and tell her when things got hard that not only does IT GET BETTER, but you are going to save my life one day.
I love the saying from the movie flipped- something like- everyone is like a light bulb and once in a blue moon you find an iridescent bulb that shines brighter then everyone else- she is that!  She touches everyone she meets and her witty and smart ass attitude is something that makes me laugh.  I am thankful we have become even closer during this process and after the transplant I can't wait to lay in her pool and relax.  I couldn't think of another person I would want to go through the pain of surgery and recovery with than her!

Oh Crap!

Having another bad day.  I have now promised myself if I have 2 bad days in one week that I will go to the ER for emergency dialysis in the neck.  So please please please let this be the only day this week!!

I am now OK with having dialysis if I need it, I just can't figure out how I am going to get to and from the dialysis center and take care of my kids a few times a week.  This just seems so overwhelming and to try and still work on top of it, I was hoping to avoid this all together.

I am trying to still work but it is becoming less and less that I am able.  I have worked full time since I was 14 and never even went more then a few weeks without a job.  This is very difficult to let this part of me go but I have to take care of my health now.  I look forward to the days I can work again and do sales and go to lunch with clients.  This is one of my main goals I want to achieve after transplant. 

Sara did her angio- we will be sending copy of xray to Tuscon and hopefully the surgeons will give us a date.  I am at 7.99 creatine which is not good, I don't have much time left being able to function without dialysis full time!!

Quick Update

OK Just a quick update to stop all the text messages asking what is going on...HA HA.   Sara is doing her EKG Monday and then on Tuesday she is doing her Angio to look at which kidney they will take.  After she does her Angio at Steinberg she will get a copy of the disk and fedex it to Tuscon.  The surgeons will then look at her disk and decide that all looks good hopefully.

Then they should be able to get us a date.  In the meantime- the top surgeon is coming to Las Vegas on April 21st and is going to meet with me so I can have all my questions answered. 

I am not sure when exactly I will be given the date but my clinic worker has advised me it should be the first part of May for the surgery.

Also on May 4th I have my appointment to place the tube in my stomach and if I am not in Tuscon at this point I have to get it in...BOOOOOOOO!!!!! 

So spring break is next week- since we can't take vacation this year I am going to try and take the girls to the park and fun things each day that are cheap.  And of course have Mommy time with my friends and go hang at the Cosmo Pool.

May maybe??

Just talked to UMC Tuscon and things are moving.  I finished all my tests so I am ready to go.  Sara has an ekg on Monday and then an angio (still to be scheduled).  The angio is to look at which kidney they are going to take.  After that test the board of doctors reviews our case and if all looks good they approve us.  Once approved we can have the transplant in one to two weeks.  So it looks like Tuscon in May sometime.

I am very excited to start the next chapter of my life but need to be patient.  I am also sad because my kids are going to be without their mom for 2 to 3 weeks.  I hope this won't be too hard on them,  Jo already asked for me to bring a big suitcase so she can hide in it.  Alexa isn't saying much but has told me that I always ruin their plans when I get sick.  I don't want her to be angry over this but she is already feeling very upset.  I try to give her lots of love but it isn't enough, she process's everything and if life isnt going exactly how she thinks it should be she gets very upset. 

All of this has made me feel bad as a mother.  I try to give them a fun loving life and it still is not enough.  When Alexa told me I ruin everything it broke my heart.  I think is this really too hard on her?  Or is she just spoiled going to the park and movies and dinner and disney all the time that when we have to sit at home she is just being spoiled. I wish someone could give me  the right answer.  I have never spoiled my kids with material things but I do over indulge in the time I spend with them and i think maybe this will make her stronger.  I guess I will have a lot of time to think about my relationship with my kids when I am away.

More updates...

While I am sitting in between appointments I thought I would recap last week.

Thursday I met with general surgery doctors.  My doctor was a kid, maybe 18 years old.   He told me he was a PA student so that explained the age, but when he went to examine me I thought, is this even legal?  I felt like it just wasn't right for him to see my stomach and chest...LOL.

Anyways after doogie howser left the doctor came in and said 2 to 3 weeks for an appointment for the tube to be placed.  I told him my story of being so close to the transplant so he assured me he would try and drag his feet so we can avoid the tube.

Then Friday I had both girls A honor roll awards.  Jordan's was fine and I even left a bit early because I was not feeling well.  By the time Alexa's had come around I was full blown sick.  I have about 1 to 2 bad days a week and Friday happened to be my day.  I feel weak and light headed and like I have the flu.  So as I am sitting trying to pay attention and act normal all I can think about it 1.  Am I going to faint.  2.  Should I go to the ER for dialysis  3.  My feet are so swollen they look like miss piggy!!  Everytime I get sick I need to decide if it is bad enough to start dialysis or if I think it will pass.  It was so hard to sit there and try to be myself when I was dying inside.

So...after school we went shopping and then to dinner with the besties (that is what the girls call ava, rumi and izzy)  by the time we got home I could not walk and was so sick with my stomach.  It feels like you have the flu extremely bad without ever throwing up.

I went to bed thinking this is it...I am going on dialysis tomorrow.  Well what do you know???....I woke up Saturday feeling great!  By 9am I had already been shopping and by 10am we were laying at the pool with good friends.  Stayed all day long and then went out at night until 130am.  I was so thankful to have passed that phase again without dialysis.

Let's just see how my bad day is this week.....

Ignore my bad grammar...on my cell phone and trying to type fast before the nurse calls my name!!

Love the weekend!!

Sara is moving on to next round of tests...ekg...chest xray.etc.

It has been a busy but great weekend!!  Perfect weather and laying at the pool all day with good friends.  The girls are pooped out but I still have energy so a trip to rounders sounds good.

Here is jo after a long day of swimming.