Thursday, December 31, 2015

Wednesday December 30

Woke up and got ready for the day.  I went to CVS to pick up a prescription.  

I got home and started trying to tackle my insurance information.  It's changing the first which is tomorrow but no one seems to have any info on what it's changing to, how much, if my transplant is covered etc.  It's a real mess.  I'll stress over it more next week. Im going to keep calling until someone can help me.

I spent over two hours on the phone.  I am so exhausted.  I'm really tired and can't sleep at night.   Colin still isn't feeling well so he keeps me up and my alarms on my pump are constantly going off.  

I put on my fluids later in the afternoon.  While they were running I cleaned out the cupboards in the kitchen and organized them.  I got dinner ready and put it in the crock pot.  I made beef tips with mashed potatoes and broccoli.   The beef tips were so easy and Colin really liked them.  It was one of my new Pinterest pins for something easy and different.

After dinner we continued watching episodes of The Wire.  My osteomy bag started leaking while I was watching tv so I changed my bag, cleaned up and got ready for bed.  I put on my tpn, drank my tea and went to bed.  I hope you have a good day.  I will post more later.

Wednesday, December 30, 2015

Tuesday December 29

Woke up at 5.  Got showered and ready for the day.  We left before 6 to head to the hospital for my appointment.  

They did the standard blood work and gave me a bag of fluids because I was feeling dry.  While we were waiting I watched a movie on my iPad.  Dr. Cruz came in after my labs got back and said everything looks good.  He's not anticipating it taking long at all to get a donor.  

My thrush is back pretty bad so they are putting me on antibiotics via iv every day for two weeks.  Hopefully it will help because my tongue and throat are really sore.   It doesn't effect anything as far as the list goes.  I'm still active and actively waiting.

We left the hospital and headed home.  I ran to the grocery store to get some food since the fridge is empty.   After the store I put on another fluid.  I was completely exhausted so I didn't do much of anything. We had a lazy evening.  I think I even dozed off on the couch for a little bit. 

Around 7:30 Kelly face timed me and we chatted for a little bit.  I got my tpn ready, drank my sleepy time tea and went to bed.  

Today is a new day.  Sorry I'm a little behind on updates.  I will try to be better about it.  Have a good day!

Monday December 28 (a couple days late)

Woke up early Monday.  Got ready for the day.  Finished packing all my stuff.  Got in the car and went over to Cyndee's to say goodbye to the dogs.  I had some toys to give them that Jamie bought when she took Aubrey to look at the kittens.  I gave them their toys and went back to my parents to drop off the car.

Courtney was there when we got there.  She wanted to say goodbye and she had to clean out the rabbit pen and feed her.  Colin loaded up the Jeep and we hit the road.

We left around 10.  I fell asleep for part of the ride.  We stopped once for a bathroom break.

As we got closer to Pittsburgh there were signs everywhere that 376 was closed both directions and to take a different turnpike exit.  We followed the detour and it ended up taking us about 45 minutes longer to get home.  Apparently the highway is going to be closed all week this week while they are working on the bridge.

We got home, unpacked and got ready for bed.  I called it an early night because I had my clinic appointment at 7. 

Sunday, December 27, 2015

Sunday December 27

Woke up pretty early around 5am.  Put on my fluids to get ahead for the day.  

Got up and took off my tpn.  Changed my osteomy bag, showered and got dressed.   Ran to the grocery store and got ginger ale and orange juice.  Went back to the house and did some laundry.  Organized my suitcase and everything I have to pack to go home.  

I left the house around noon to head to Colin's Dad's for lunch.  I got there and stayed and hung out about an hour and a half.  I got to see all the kids again and Tom and Terri.  It was a nice little visit and I'm glad I was able to go for a little.

I left there and headed to my friend Patty's house so I could meet her baby granddaughter.   She was beautiful!!  It was so good to see Patty and to meet Kassandra.   She's the happiest little baby!!!   


She was so sweet.  I stayed and hung out with her for about an hour and headed home.  I finished packing and getting my stuff together.   Then I hung out with Mom and Dad.  I'm waiting for Amber to get home from Phoenixville.   When she gets home I'm going to her house to watch a movie with her and the boys.  Then I'm going to come home and go to bed.

It should be a pretty early night for me.   Colin and I will leave in the morning.  Probably a little later so we don't hit all of the morning Harrisburg traffic.  

Have a great night!!   Sweet dreams!

Saturday December 26

Woke up.  Took off my tpn. Got showered and dressed and left with my parents for breakfast.  We met Amber and Bobby and the twins at IHOP.





After IHOP my parents took me to Sports Authority to use my gift card since there isn't one in Pittsburgh.  I got a nice sweatshirt.  We went to Walmart and I got a temporal thermometer so it's easier to take my temperature every day.

We went home and I went over to Kelly's to visit for a little bit.  I left there and went over to see Jamie, Sean and the girls.  Aubrey got kittens for Christmas so I wanted to see how everything was going.  After that I was exhausted so I came back home and put on my pajamas and got ready for bed.  I hung out and watched a movie, put on my tpn and went to sleep.  I'm going to Tom and Terri's today for brunch to see everyone for a little longer before we leave to go home tomorrow.  Have a good day today!  I will update later!

Saturday, December 26, 2015

Friday December 25

Merry Christmas!!!!

I hope everyone had a wonderful day!!!  I know I did! It was great spending time with my family!!  I woke up early as usual and took off my tpn, showered and got dressed.

My Dad dropped me off at Amber's.  I stayed and hung out with the boys and helped Amber get dinner ready.  Everyone came over around noon.   We sat down around 12:30 and had dinner.  We cleared off the table and sat down to open presents.   It was nice because everyone was patient and it wasn't crazy chaotic like it usually is.  We all stayed and hung out as a family for a while.  The kids went out and played with their toys for a little bit.  Including Shawn ;). He got a drone for Christmas and was in kid land.  

They came in and we had dessert.   Then everyone packed up and left to go home.  I went over to Cynder's to give her her gifts and to see Colin for his birthday.  He was watching episodes of The Wire so I sat on the couch and we watched a few episodes.  I started falling asleep so he had me go home.  I went home and chilled out for a little bit.  I put on my pajamas, got my tpn ready and helped my mom figure out the sewing machine.  I put on my tpn, made my sleepy time tea and went to bed.

I was up a lot last night because I'm having issues with my pump but today is a new day.  I hope everyone enjoyed their Christmas as much as I did!   Have a wonderful day today!! 

Friday, December 25, 2015

Thursday December 24

Woke up, unhooked my tpn, changed my osteomy bag, showered and got dressed.

I ran to The Fish Place and got bones for the dogs.   Then I ran to the dollar store and got them toys.  After that I went to Mom's work to pick up chairs and drop them off at Amber's for Christmas dinner.  There were two accidents on route 30.  I sat in traffic for about an hour.  It was annoying.  Once I got there mom loaded up the car and I left to go to Kelly's.  I went over to her house and put my fluids on.  I played with Thomas and helped Kelly get ready for her Christmas dinner.  I stayed for a few hours.

I left there and went back to my parents to get ready for Cyndee's party.  I ran the chairs to Amber's house and drove to Mount Joy to see Amanda and her family.  I stayed there for a little over an hour to see the kids and catch up.  It was a nice afternoon.   I went over to Cyndee's around 4:30 and helped her get ready for her big Christmas Eve party.  We were there until about 11.   After the party we met Jeremy, Janel, Brynn and Rob out at the Arts Hotel for a drink for Colin's birthday.  


 We were there til about 12:30.  We left.  I dropped Colin off and drove back to mom's to go to bed.  I got home around 1.  I went straight to bed.  It was a long day but I got a lot done.   Merry Christmas!!  Have a wonderful day!!!

Thursday, December 24, 2015

Wednesday December 23

Woke up and took off my tpn.  Showered and got dressed.   Went to Turkey Hill and got a coffee and Big Trxas sandwich for Kelly.   I went to Clipper and surprised her for a visit.  I went around the building and visited for a couple of hours.  It was so nice to see everyone.  There were a lot of people off for the holiday so I missed a lot of people but I got to see some people that I missed the last time I was there as well.

After that Amber picked me up.  The twins had a half day so we picked them up at the bus stop and went to the York mall to see Santa.  The boys were adorable getting their picture taken with Santa.  You weren't allowed to use your cell phone to take pictures.  You could only buy the ones they had.  It was actually pretty ridiculous.  They told Sqnta all they wanted was Pokemon cards.   How cute are they?    Santa  gave them elf hats and we headed out.




We went over to Five Below because the boys each had $5.00 to spend.  They bought Skylanders to go with their video game.   We left there and Amber ran in to Dollar Tree with Caden to grab a couple things.  Carter was tired so I sat in the car with him.  We went back home and she dropped me off at my parents.

Mom and Dad had dinner and then Mom and I ran to the mall to look for a couple last minute things she wanted to get.   We weren't there very long and she got some really good deals.   We got home.  I made some tea, put on my tpn and went to bed.

I have a pretty full day today of visiting different people.  I will post more later.  I'm so glad to be home!!!   Have a good day!!  Merry Christmas Eve!!

Wednesday, December 23, 2015

Tuesday December 22

Woke up and put on my fluids.  Got showered and dressed.   Colin had a hair cut appointment so he got showered and left for his appointment.   While he was gone I finished packing up the car.

Colin got home and we got in the car to head home.  We left around 11:30.   The ride was smooth and there wasn't much traffic.   We took our time.  We got home around 3:30.   We stopped once on the way to empty my osteomy.  

I dropped Colin off at his mom's and headed to my parents.  I surprised my mom.   She didn't know I was coming.   I unloaded the car and dropped it back off to Colin.   After that I went over to Amber's to see the twins.   We played for a little bit and then Amber and I went to the grocery store so she could get what she needed for Christmas dinner.  She dropped me back off at mom's.  I made some tea, put on my tpn and went to bed.  I was exhausted from the traveling.  

I'm going to stop in to work this morning.  I will post more later!!  Have a good day!!!

Tuesday, December 22, 2015

Monday December 21

Woke up at 5.  Unhooked my tpn, showered and got dressed.   We left for my doctor's appointment at 6.  We went into clinic.  They did a lot of blood work.  Two bottles for blood cultures and 12 tubes to test different vitamin levels etc.  While I was there they gave me a bag of fluids.  I figured I might as well stay ahead of it.  

We waited until about 9:30 for the blood work to come back and then the team came around.  Dr. Cruz is on vacation back to Brazil for the holidays so Dr. Gonoza was making the rounds.  He is really happy with my labs and my progress.  He said that they have already received multiple organ offers for me but it just hasn't been the perfect match.  Because of my size and weight I need a smaller organ and they don't want to give me an organ unless it's absolutely perfect.  That being said....we are still going back to Lancaster for Christmas but Dr. Gonoza is going to be on call in case an organ is a match and we would have to drive back to Pittsburgh.  All in all the appointment was full of promise.  

After my appointment we went home.  I cleaned the house top to bottom so it's spotless when we get home.  After I cleaned I put on my fluids and watched a little tv.  When I was done I ran over to the gas station and filled up my car.  I had $1.20 off with my fuel rewards so it only cost me $13.00 to fill up my tank!   

I ran to the mailbox and grabbed the mail.  We are definitely feeling the love this year!!  We have gotten so many Christmas cards from people we know and people that are friends or aquaintences of people we know.  We have made a card wall out of them.  Thank you to everyone who has sent cards and notes.  We have enjoyed every single one!


After I got back Colin and I got ready for The Waterfront's Christmas party.  It was a party for all the residents.  We met some new people and hung out for about an hour.  

We went home, I put on my pajamas, hooked up my tpn and went to bed.  Today is a new day.  I'm not sure what it holds for us but I will post more later.  Have a great day!

Monday, December 21, 2015

Sunday December 20

Woke up early and put on a fluid while my tpn was finishing up.  When they were both done I got showered and dressed.  It was 23 degrees in the morning.  Freezing cold!  Colin wanted to go down to the strip district so we bundled up and headed out.  It was cold, but the cold didn't stop the crowds at all.  It was really busy.  We walked around for a while and then headed home.  This is a terrible picture of me but it shows you how cold it was.  Ignore my puffy face :( 




When we got home I put on another fluid.  I started packing up some of my stuff and organizing everything I need to make the trip home this week.  I made a couple of lists and packed my clothes.  I started cleaning up the clutter around the house so that today I can take the time to give it a good cleaning.  I organized the Christmas presents and Colin and I started to take some things out to the car to see how much room we were going to have. We have to take the big cooler for my tpn and fluids.  

Once we were done with that, Colin watched football and I went into the bedroom to watch tv.  I had to put on my tpn at 5 because we have my clinic appointment this morning instead of tomorrow.  I got ready for bed, put on my tpn and watched tv til I fell asleep.  

Hopefully everything looks good for my appointment today.  I will update later.  Have a good day!  

Sunday, December 20, 2015

Saturday December 19

Woke up and put on a fluid.  After it was done I got showered and dressed.  

We woke up to 28 degrees and a light dusting of snow on the cars.  It's extremely cold this weekend.   We heated up the truck and went to Cvs to pick up my prescriptions.  

After that we ran to a couple different breweries to get local beer for Bobby that he wants us to bring home with us.  We ran around for about 2 hours but were able to get everything he wanted.  

We went home and watched tv for about an hour.  Then it was time for Colin's eye exam.  We went to Visionworks and he got that done.  I spent some time speaking to the manager who was extremely pleasant and we discussed my transplant and everything I've been going through.  She got the information from me on the transplant website and this blog and is going to add us to our prayer list.  She was so sweet and understanding.

We left there without glasses because apparently Colin has 20/20 vision and he has a slight stigmatism which is why it's hard for him to see in dim light.  We stopped at the Redbox on the way home and grabbed two movies.  Went home and put our pajamas on.  

We watched the new Mission Impossible.  It was ok.  A little hard to follow.   We also watched Mississippi Grind which was about gambling.  Not recommended. It was all over the place and didn't make much sense.  

When the movies were over I put on my tpn and went to bed.  Today is a new day.  I'm not sure what we are doing.  I have a feeling it's going to be a lazy day.

Saturday, December 19, 2015

Friday December 18

I was up early.  I got out of bed and put on a fluid.  We watched tv while it was going.  After it was done I changed my osteomy bag, showered, and got dressed. 

I ran to the grocery store to get soda and a couple things Colin needed.

I came home and put on another fluid.  I was feeling extra dry so I wanted to make sure I was staying ahead of it.  While it was going I attempted to fix the couch cushions.  They slide off the couch and it drives me nuts.  I bought Velcro a couple of weeks ago so I carefully velcro'd each cushion in place.  I'm really hoping it works.  We will see.

When I was done with my fluids, I took out the trash, and went down to get the mail.  I had a package so I went into the office to grab it.  It was a beautiful guardian angel bracelet from my Aunt Peg and Uncle Frank.  It was a nice surprise.  I called to thank them and talked to her for a little while.  It was nice.

I went home and got dinner ready.  I made brown sugar garlic chicken with mixed veggies.   Colin ate it and we put on The Wire.  I got my tpn together, hooked up and got ready for bed.  I went in and laid down around 8:30.  I was asleep by 9.  I had a rough night because Colin isn't feeling well so he kept me up all night.  We are going to have to go get him some medicine today so he can kick it and so I don't get sick.

Today is a new day.  Enjoy!!

Friday, December 18, 2015

Thursday December 17

Woke up early.  Went to the couch to lay down and watch tv.  Unhooked my tpn, showered and got dressed.  Put on my fluids early because I had an eye appointment at 12:15.  

I know how much you all love these:  here's an only me story for you....

I made the eye appointment because they were running a special of $19 for an eye exam.  I made Colin an appointment as well but his is on Saturday.  Around 10 I received a phone call from Visionworks.  The lady on the phone tells me that they are no longer honoring the 19.00 eye exam and that it is going to be 49.00.  I told her that that was unacceptable and that we made the appointment because they were running the special.  She told me she was sorry but there was nothing she could do.  I told her to keep my appointment and got off the phone.  

I looked up the corporate number and called.  This process was just as frustrating.  I went through the automated system four times but kept getting disconnected.  I was finally able to get through to a receptionist.  She kept putting me back into the automated system.  I finally called back and asked her to please just find me an actual person in customer service to speak with.  I explained why I was calling and that I was going to hold until she found someone.  She put me on hold and came back on the line.  She gave me the name and number of the director of customer service.  I thanked her for her help, hung up and called the number.  It went into voicemail so I left a brief message.

In the meantime it was time for my appointment.  I went into the store and the first thing I did was ask who I spoke to on the phone.  The woman walked over and I apologized for yelling at her.  While I was apologizing, the manager walked over, apologized for the inconvenience and said she was going to honor the $19 eye exam for Colin and I.  I thanked her and she explained that corporate didn't give them notice and they were basically doing what was asked of them.  I told her I was trying to reach them and that I think they should know that their handling of it is not professional.  She agreed and told me to call the number on the receipt and take the survey to voice my opinion.  After my eye exam, I left and my phone rang.  It was the woman from corporate!!  I thanked her for returning my call and explained everything to her.  She assured me she would look into it and asked if I wanted a follow up call.  I told her I trusted her to follow up, thanked her for her time and got off the phone.

After that, I went home and made dinner.  After dinner I went shopping with Matt.  I got home around 8, put on my tpn, face timed with Amber and the boys and went to bed.  

Today is a new day.  I will post later!  Enjoy your day!

Wednesday, December 16, 2015

Wednesday December 16

Woke up around 6 today.  Went into the living room to watch tv so I didn't wake Colin up.  He woke up around 7:30.  I took off my tpn and got showered and dressed.  I made Colin a ham, egg and cheese sandwich.  

I put on my fluids earlier than normal because I thought I had an eye exam today.   Turns out it's actually tomorrow.  I'm glad I called to confirm my appointment.  After my fluids were done I ran a couple of errands.  I straightened up the Christmas gift pile.  I started organizing stuff so we can pack to go home next week.

I had my therapy today at 4.  I left the house around 3:15 because even though it's only 4 miles away, it takes a half hour to get there.  The therapist was 15 minutes late for my appointment.  She had to stop at Starbucks for a chai latte.  Hopefully I don't get billed for the full hour :).

My therapy session went ok.  She's teaching me some coping methods.  I'm pretty open to trying certain things but she has asked me to try some things that I don't think I can do because my brain just doesn't function that way.  I said I will try them and I have an appointment with her on Monday so we will see if it works.  I'm not sure.

It took me an hour to get home from my appointment with the traffic.  I got home and made some tea.  I'm watching HBO.  The Fault In Our Stars is on again so I'm watching the end of it.  I got everything ready for my tpn so I can put it on at 8 and lay down.  I'm pretty tired today.  I had a good day and was feeling really well.  I'm just a little more exhausted today than usual so I want to make sure I get my rest.

Tomorrow is another day!  Until then.  Have a good night!

Tuesday, December 15, 2015

Tuesday December 15

Woke up at 5 this morning so we could go to my appointment.  I unhooked my tpn, got showered and dressed.  We left the house around 6.  Got to the hospital around 6:15.  They did my blood work right away.  Then the nurse did my dressing change.  When she was cleaning the picc line she noticed a crack in it.  A crack in the picc could lead to major infection.  

The nurse called the doctor and he put an order in to have it replaced.   They came and got me and took me to iv radiology.  Luckily they weren't too busy.  They were able to do the procedure quickly.  They did what they call a wire exchange where they use the same entry point but they take a new wire and slide it over the old one.  Then they pull the old one out.  They numb they area before they do it so you don't feel anything.  It was done before I knew it.  

We went back to the room in the hospital and waited for the doctors to make their rounds.  They came around and said everything on my labs look great and they are pleased with my progress.  They discharged us and we headed home.

I needed a prescription refilled and for some reason it had to be at cvs.  I found the closest cvs and dropped off my prescription.  They didn't have enough in stock so I have to go back tomorrow to pick it up after 1.  

I got home and put on my fluids.  It took about 2.5 hours to do them.  For some reason it was dripping really slow.  

When my fluids were done I left to get glue for a project with the couch.  Colin was pulling in as I was getting ready to leave.  He came with me to target.  We got home and I made dinner.  Mini meatloaf cupcakes. It's little meatloaf cupcakes with mashed potatoes baked on top after the loaves are cooked.  Looked pretty good to me.  

It's about 6:30.  I'm really tired so I'm laying down on the couch and we are watching The Wire.  It's an HBO series.  We just started season one.  I'm hoping it's worth it.  I guess we will see.  I'm tired so I'll be going to bed early.  So for now...good night.  Sweet dreams!!

Monday December 14

I woke up early and put on a fluid because I was feeling a little dry.  After my fluid I took off my tpn, showered and got dressed.  

I ran to American Eagle to pick up something for Cyndee.  I was really proud of myself because I didn't need the gps.  I got there and home all on my own.  I'm terrible with direction so that was a huge accomplishment for me.

I stopped at the grocery store on my way home.  When I got home I put on my regular fluids.  I baked a carrot cake and got stuff together to make dinner.  I made turkey vegetable soup and cheeseburger wraps.  I did laundry and straightened up a little bit.  It was a pretty good day.  I felt like I accomplished a lot.  

I'm feeling the love this week too!  Mom and Dad sent me flowers last week.  It's a beautiful Christmas arrangement.

Yesterday when I got home from the store there was another arrangement of flowers outside my door.  They were just as beautiful.   They were from Shawn and Courtney.   It's nice to get gifts and cards.  It really helps me get through the days and puts a smile on my face.  


After dinner I put on my tpn early because I have my appointment today and we have to get up extra early.  I went to bed around 8.  Kelly and Thomas called last night and we face timed.  It was a nice surprise as well.  It's always nice when you can see who you are talking to.  It doesn't make it feel like I am so far away.  

Well...today is a new day.  I will post more later.  Have a good day.

Monday, December 14, 2015

Sunday December 13

Woke up around 6.  Took off my tpn around 7:30.   Got dressed and showered.  Went to the store with Colin to get stuff to make a pot roast.  We got everything we needed, went to the meat counter to get the roast and they didn't have any.   We walked back around the store, put everything back and left.  It was really odd.

After the store we went downtown to explore and see what all was there.   We drove around about an hour.  We left town and went to a new shopping center we found and we walked around a little bit.  We didn't buy anything, we were just seeing what was out there.

We left and came home.  I put on my fluids and Colin watched football while I did some last minute Christmas cards.  When my fluids were done I went downstairs and cleaned out my car from my Altoona trip.  

Around dinner I realized there was nothing in the house so we went to a hole in the wall bar down the street called Blue Dust.  Colin grabbed something to eat and then we went to The Burgatory and sat at the bar to watch a game.   We went home around 7.  I got my tpn stuff together, put on my pjs, hooked myself up for the night and went to bed.

Today is a new day!  It's supposed to be in the 50's all week.  I'm looking forward to hopefully enjoying the nice weather.  I will post later.  Have a great day!

Sunday, December 13, 2015

Saturday December 12

I got up at 6, took off my tpn, showered and got dressed.  I got in my car and headed to Altoona to see Honey.

On my way I stopped at Dean's Diner.  It's this diner my pap used to take Honey to years ago.   I ordered a pie to surprise her so I had to stop and pick it up.  It took me about an hour and 40 minutes to get there with having to stop.   On my way there my Mom called to tell me that my great uncle Jack passed away early in the morning.   She wanted to prepare me for the commotion I was probably going to be walking into.

Mom and Dad decided to make the trip as well because they wanted to support Honey.  I got there a little before 9 and mom and dad were already there.  I stayed and hung out around the house and put my fluids on.   Honey was really quiet.   She wasn't saying much of anything.   The telephone was ringing off the hook.  It was non-stop.  My uncle Rick was there all morning as well.   

At one point my dad and uncle Rick went to the basement and it was flooded.   The sewer system was backed up.   They called a plumber and we had to wait around for them to come and fix it.  My uncle Rick went out and grabbed lunch for everyone (Texas Hot Dogs) one of my favorites but I can't eat them.....

They had hot dogs and some pie for lunch.   After they were done with lunch and the plumber left we went out to my Grandma and Pap's.   My cousin Jill met us out there with her kids.  It was good to see her and to catch up.  Grandma and Pap seem to be doing really well.  He's feeling much better after being pretty sick a couple of weeks ago.   We stayed for a couple of hours and visited.  I wanted to try and get on the road before dark so we left and went back to Honey's so I could get ready to leave.

I said my goodbyes and hopped in the car.  I left around 4:30.  I was making really good time until I got on 376 in Pittsburgh.   Traffic was at a dead stop.   There was no one moving.   The highway was closed to blow up a bridge and the exit was still 2 miles ahead but everyone was being forced to get off it so it wasn't moving at all.  When I was finally able to get off, I had to find my way home without going the highway which wasn't easy because the gps kept trying to have me do a u-turn to get back on the highway.  I just kept driving straight until it finally took me somewhere I was slightly familiar with.  I finally made it home.  It was 7:40.   Talk about a long drive.

I was exhausted.  I put on my pjs when I walked in the door.   Drank some sleepy time tea, put on my tpn and went to bed.   I had a long day but it was worth it.  I got to spend time with my parents, Honey and my grandparents.  It made the 3.5 hour drive home worth it.  Hopefully today will be a good day.  I will post later. 

Friday, December 11, 2015

Friday December 11

I was up around 6 this morning.  I went into the living room to watch tv so I didn't wake Colin up.  I took off my tpn around 8 and got showered, dressed and had to change my osteomy bag.  

I straightened up the bedroom and cleaned.  Nothing too exciting.  I put on my fluids around 10:30.   They got done around 12:30.  After they were done I went to get my oil changed.  It was pretty quick and painless.   After that I ran to the grocery store to grab a couple of things.  

I came home and Matt (a friend we met at the leasing office) came over for lunch.   We watched tv for a little bit and then he headed back to work.  Colin and I watched more tv and I made dinner for him.  We are hanging out now and watching Julia Julia.  It's an ok movie.  Not really something I'm into but Colin likes watching stuff about cooking.  

I'm going to put on my tpn early tonight so that I can head to Altoona tomorrow to visit Honey.  My great uncle Jack isn't doing well.  He stopped his dialysis and is preparing himself to move on.  Honey is pretty upset so I'm hoping to cheer her up a little.  I'll leave in the morning once I'm up and dressed.  I will update tomorrow.  Have a good night!

Thursday December 10

Today was an emotional day for me.  It marks 1 year from my abdominal disaster that landed me in a coma. Or I could say it's been exactly a year since Dr. Johnston and Dr. Chory saved my life.  Either way, I'm full of mixed emotions.  

My morning started out ok.  Got up, took off my tpn.  Colin and I went to Starbucks so he could get coffee.  I ran some errands and finished wrapping the kids Christmas presents.  

I did some laundry and cleaned.  I just wanted to keep my mind busy.  I got stuff together for dinner.  I made taco pasta bake.  It looked and smelled really good and Colin seemed to like it.  After dinner we watched tv.  I did some more laundry.  Around 7, I made some tea and got together my tpn.  I hooked myself up and went in to bed.  

Today is a new day.  I'm not sure what I'm going to do but I will post more later.  Have a good day :)

Thursday, December 10, 2015

Wednesday December 9

I woke up early and took off my tpn.  I showered and got dressed.  We were researching something to do for the day and decided to go to the Ross Park Mall.  It was about a 15 minute drive from the apartment.  The mall was pretty large.  It had a LOT of high end stores.  Armani, Tiffany's, Louis Vuitton, Bebe, and so many more.   They also had a good mix of affordable stores like H&M, Forever 21, Aeropostale, JC Penney etc.  They even had an LL Bean which I've never been in before.  We did a lot of window shopping.  

We were at the mall for a couple of hours walking.  We got our exercise in for the day.  We left the mall and went home so I could put my fluids on.  We watched the movie Max while my fluids were going.   It was about a military dog on the front lines.  It was a pretty good movie.   I would recommend watching it.  After that I had therapy.

It was my second session.   It went pretty well.  It was a later appointment and I had to drive in the dark and the rain to get there but I made it.  I'm slowly learning my way around.   Eventually I'll figure things out.  I got home from therapy around 8:30.  I put on my tpn, took my medicine and went to bed.  I fell asleep around 10.   Was up a couple of times for different reasons but was able to fall back asleep in between for the most part.  

Today is a new day!  I will post more later! Have a good day!!

Wednesday, December 9, 2015

Tuesday Dec 8 cont'd

After my appointment my phone was ringing off the hook.  Everyone wanted an update on what was going on and they wanted details.  

Here is what we found out.  Because it's an isolated small bowel and because of my blood type they will be putting at the top of the list.

Once they have a donor they will call and tell me and tell me when I need to be at the hospital.  Once I'm there it could take them anywhere from 4-12 hours to get the organ out of the donor and to get it to Pittsburgh.  At this point, they determine whether or not the organ is viable.  He said I'm young, strong and healthy so he wants to give me the perfect organ.  With the small bowel they can't tell if it's healthy until they go in to remove it.  There's a good chance that we could get called several times until they find the perfect organ.  

If everything looks good with the organ they will prep me for surgery.  Surgery will take 7-10 hours.  They will cut me from my breast bone straight down to my groin.  They will close up my current illeostomy and move it to the bottom left of my abdomen.  I will have a feeding tube as well as three drains coming out of my abdomen.  The feeding tube and drains are temporary.  I will only have them for a few months up to six months.  Dr. Cruz is fairly confident that he can re-attach everything and possibly transplant a portion of colon as well.  If he can, he will close up the illeostomy and I will have normal bowel function and the use of my rectum again.  We are praying that this is the case.  It would be wonderful to be able to get rid of the bag.  That has been the hardest thing for me to get used to through all of this.

Recovery from surgery is going to take months but it's all going to be worth it!  

I am nervous and excited to move forward with the transplant.  It's going to be a lot but I know I can do it with the love, support and prayers of my family and friends.  We can do this together!!  

After my appointment yesterday I ran to Target to get my medicine refills because they were finally ready.  I stopped at the Redbox and grabbed two movies.  I went home and put on my fluids.  I actually fell asleep on the couch for a half hour.  Then Colin and I watched Trainwreck.  It had some pretty funny parts in it.  It was worth checking out.  After the movie I got ready for bed and put on my tpn.  I went to bed.  I fell asleep around 10 and was up at 4.  I will post more later today.  Have a great day!!

Monday, December 7, 2015

Tuesday December 8

Woke up this morning, unhooked my tpn and got showered.  I put on a fluid first thing this morning because I was feeling a little dehydrated.   After my fluid was done I went to Target to pick up my prescriptions.   They still weren't there yet so she asked me to come back tomorrow.  A little frustrating.

I left Target and did a little Christmas shopping.  I was running around for about an hour at the outlets and then I went into downtown Pittsburgh and picked up a couple of gift certificates.  It was cold but felt good to walk around.

I got home around 2 and put on my daily fluids.  I wrapped some Christmas gifts and did some laundry.  I took out the trash and started dinner for Colin.   I made beef stroganoff for dinner.  He was out and didn't get home until around 4:30.  As soon as he got home dinner was ready.  

I am feeling frustrated today.  I was told that I would get a phone call today with an update on what's going on with my being listed as active and no one called.  I feel like they should call if they say they are going to call.   It's unprofessional in my opinion to not follow through like you say you are going to.  Now we have to wait until my appointment tomorrow.   Not sure how that's going to go.

I am hooked up to my tpn and ready for bed.  I have to get up early for my appointment.  Wish me luck for tomorrow.   Have a good night.   Sweet dreams!

Sunday December 6

Today was a good day.  We woke up, got dressed and ready and walked to Eat N Park with Jeremy and Janel.  Rob and Brynn stayed at the apartment.  

We came back and they started getting their things together to head home.  Janel helped me hang some picture frames in the hallway.  We packed up some snacks for the road and they left around 10:30.  It was a nice visit.  I can't wait for them to come back!!

After they left I went to Target to get some of my prescriptions refilled.  I got there around 11 but they didn't open until 11:30 so I left and went to the grocery store.  I grabbed a couple of things for Colin for dinners this week.  I went back to target but they didn't have my meds in stock so I'm going to have to make another trip at some point today.

I got home and edited some pictures on the computer to put in the frames we hung.   I sent them to Target to be printed since I have to go back there today anyway. Colin wasn't in the mood to do anything and I was bored so I decided to go find the nearest Dollar Tree.  I was out of thank you cards and had a couple of little things to pick up.  I found it!  It was super easy to get to and was pretty much two roads.  

I got home and filled out a couple last minute Christmas cards and a couple thank you cards.  Colin was watching football so I was in the bedroom watching tv.   He ordered pizza for dinner.  I got all my meds ready and put my tpn on and was in bed by 8 watching tv.   

I'm still feeling pretty good!  I haven't been sick.   Haven't needed my nausea or pain meds.  I am starting to gain some energy.  My sleeping is getting a little better (I don't want to jinx it!).  All in all everything is on track!  Wish me luck today!  I will post more later.  Have a good day!

Sunday, December 6, 2015

Saturday December 5

Woke up and took off my tpn.   Colin and I went to Eat N Park so he could get breakfast.  I had a hot chocolate.  

We went home and I put on my fluids.  Our company came at 10!   It was exciting!!   We hung out for a little bit and then went to The Strip District to walk around. We went to lunch at Fatheads.   After lunch we went shopping.   We walked around the outlets and stopped at a couple bars.

We went to Dave and Busters for dinner and played games.   We had a lot of fun.   Around 8, we went back to the apartment so I could put on my tpn.   Everyone hung out for a little bit and then the guys decided to go to Voodoo.   The girls hung out at the apartment and watched I'll be Home for Christmas.  We all three fell asleep on the couch.  When the guys got home I went to bed.   Not sure what they did after but we had a really good day and it was nice to hang out with everyone and have company.   We had a really good time!!   

Saturday, December 5, 2015

Friday December 4

The day started ok.  Got up and got dressed.   Ran to McDonalds and grabbed breakfast for Colin.  Started cleaning the apartment.    Spent about an hour cleaning.

I made a lot of white chocolate Chex mix so I took some of the extra over to the guys in the leasing  office since I made so much.   They were setting up their huge Christmas tree.   I offered to help decorate after I ran some errands.

I went to the car wash and cleaned Colin's truck.   Then I went to the grocery store for milk and carpet cleaner.  After that, I hooked myself up to my iv fluids and took them with me to the leasing office,  I did my iv fluids while decorating the Christmas tree.  I helped decorate for about two hours.

I went home and watched The Fault in our Stars.   Great movie.  Sad but a good one.   After that I put on my tpn and went to bed.   Pretty uneventful.  I had something to break up the monotony of my day which was really nice.  

Today is a new day and we are getting company!!  I can't wait!!  I'll post more later!

Thursday, December 3, 2015

Thursday December 3

Got out of bed around 6 this morning.  I woke up today feeling better.  I wasn't nauseous at all so that was a plus.  I sat on the couch and filled out some Christmas cards.  When my tpn was done I unhooked myself from the iv and got a shower.  I went back to the couch and did more Christmas cards.  It took me a little while to do them but I got them all done.  

I put on my fluids around 11 and I made a Chex mix for when company comes on Saturday.  I also made taco dip.  It took me about an hour.   When my fluids were done I took my car to the car wash and did the auto wash and vacuumed it out really well.  

I ran home quick to get the cooler out of my car and to get the address for my therapy appointment.  I brought the cooler in the house and put everything away and left for my appointment.

I really like my therapist so far.  I went in to the session telling myself I wouldn't cry but having to re-tell the story and essentially re-live everything caused me to break down.  I wasn't sobbing but I was teary-eyed.  I have another appointment with her next week. I am going to see her once a week until the transplant and then I can see her post transplant if necessary.  

After that I headed home.   We are currently watching The Purge.   For those of you who haven't seen it, it's pretty good.  It has a lot of violence and the message is kind of messed up but there's a lot of suspense.  It's definitely worth watching.

On another note.....today is my Mom and Brooke's birthdays!!   So wish them a Happy Birthday!!  I hope they both have a good day and have a lot of fun.  I'm sorry we couldn't be there to celebrate with them.

It's about 6:30.  I'm going to make some tea and settle down for the evening.  Tomorrow is going to be my day for cleaning.  I want the apartment to be nice and clean for our company coming Saturday.   I'm really excited to see them!!

On that note, have a good night.  I will update tomorrow.

Wednesday, December 2, 2015

Wednesday December 2

I wasn't feeling well when I woke up this morning so I put on a bag of fluids right away to see if it helped.  After my fluids and I got showered and dressed for the day.  

Colin and I went to the post office.  There are still issues with our mail.   We haven't been getting everything and we are still getting mail for Cyndee and now we are getting mail for Quinn.  It's a huge mess.   The supervisor at the post office here has been super friendly and helpful.  I am supposed to call him on Friday to follow up and make sure everything is taken care of.  

We ran to the grocery store and got some things for our company this weekend.   I'm so excited for them to come!!  We got home from the store and I put my fluids on while Colin watched a movie.  The rest of the day was a lazy day.  We didn't do much of anything.  Colin put on another movie.  I'm not sure what the name of it was but it was about NFL football drafts.   It was pretty good.   Then we watched The Secret Life of Walter Mitty.   That was ok.   I wasn't too impressed with it.

That was our day in a nutshell.   I'm feeling better.  I'm just really tired.  Tomorrow is a new day!!  I'll update you then.   Have a good night.

Tuesday, December 1, 2015

Tuesday December 1

Woke up extra early this morning to be at the hospital at 6:30 for my appointment.  

All of my labs look good and they are happy with my progress.   Dr. Dimartini the psych Doctor came to see me around 9.  She's adjusting my meds slightly to see if it will help me sleep.  She also had me sign a release form so that the therapist I'm seeing on Thursday will release all records to her so that she can track my progress.  

Dr. Cruz, Mary Roberts and the team came in a little after 10.   They are very happy with my progress and will be presenting me this week to review my case.  They will make a decision and call me on Monday to let me know if I am officially listed.  Keep me in your prayers that they list me.  Once I'm listed, it could take anywhere from two months to six months to get an organ.  He said that he's not going to give me an organ unless it's perfect.  I'm healthy enough that they want to make sure my organ is as well.  He seems pretty positive about everything and I felt really good about my appointment today.   He also said he would be ok with me going home for Christmas!!!   I'm super excited about that.  

We got home from my appointment and I did laundry.  We are getting company this weekend so I washed all the bed clothes and comforters.  I did laundry for about four hours.  I had my fluids on part of the time.  I straightened up the house and made dinner for Colin.  I made bbq chicken, au gratin potatoes and carrots.  Something other than fast food.  

After dinner we watched the new Planet of the Apes.  I'm not a big fan of this type of movie but I watched it.  It was surprisingly pretty good.  I wouldn't necessarily watch it again but I wouldn't say it was horrible either. Now I'm laying in bed.  Hoping to get a good nights sleep so I have energy tomorrow.  I will update you then.  Have a good night.  Sweet dreams!