Sunday February 28

Had an ok nights sleep.   I was in and out / off and on throughout the night.   Woke up and waited for the rest of the house to rise.  Once everyone was up we walked to Eat N Park for breakfast.  

We got home from breakfast and Amber and Bobby started packing up the car.  It was great having them for a visit and spending time with the boys and the dogs.  I was really sad to have them leave.  

After they left we watched a movie on tv.  After lunch we decided to go to a movie for something to do.   We went to see Deadpool.  For those of you who know me....I'm not big into comics and that sort of thing.  I was able to find humor and laugh at some of the jokes but there were a lot of references I didn't get.   All in all the movie was pretty good.

After the movie we just came back home and had a lazy evening.  

My day was a little better.  I was pretty clear headed most of the day.  It hit me more at the movie theater then anywhere.  I'm not sure if it's all the stimulation or what triggers it.  I Got ready for bed around 7:30 and put on my tpn.   Went in and laid down in bed a little after 8.  Not too much else to report.

Saturday February 27

Woke up early to two hungry dogs.  Colin got up and took the dogs out for a walk to go to the bathroom.   He got back and fed them and started breakfast for everyone.   He made a nice little feast of pancakes, eggs and bacon.   Everyone ate breakfast, got showered and ready for the day.

We took them to the Monogohelia incline and did the lookout of Pittsburgh.  After that we went down to The Strip District to look around.   The boys had fun going to the different shops and seeing all the little trinkets.   They ended up coming home with balloon animals and flutes.

We came back to the house and had lunch.   Colin and Bobby went out to check out some different restaurants and breweries.   Amber and I hung out at the house with the boys.  We ended up meeting up with Colin and Bobby at Dave and Busters to run some energy off the boys.   We were there for about two hours.   They had a great time.   Caden even won the jackpot on one of the games for 1000 points!   They had a blast!!  They went in to the prize shop and each got a big pekachoo stuffed animal.  And we still have a bunch of points left on the cards for next time.

We got home around 9:30.   Amber went and grabbed something to eat and Colin and Bobby went out to get something too.   Amber, the twins and I watched a movie and went to bed.  

We had a fun day and it was really nice having company.  They are going home today and I'm going to be sad to see them go.   It was nice having them and fun having the dogs too.   I miss my puppies.   It was nice being able to cuddle with them and have them around.   

Friday February 26

Update....my levels are all going down and they are happy with the bloodwork and labs.   They are discharging me this morning.   The docs are happy with how everything looks and are going to adjust my meds accordingly.

I will update later.  I just wanted to let everyone know.  

Amber and Bobby came to visit with Carter and Caden today!!!   They brought Wyatt and Lilly with them!!  They got to the house around 7.  We went over to Rock Fish Grill and got something to eat for dinner.  When we were done with dinner Colin, Bobby and the twins took the dogs for a walk down to the candy store.   Amber and I met them in the car and picked them up and drove them home.  We got home and watched The Good Dinosaur.

I put on my tpn and went to bed.  It is so nice having them here and having the company.  We don't really have too much planned for Saturday but we will see what the day holds.

Thursday February 25

Went in to clinic first thing in the morning.  They did my bloodwork right away and took vitals.  My blood pressure was a little elevated but not too bad.  

We waited for the doctors to make their rounds.  When Dr. Gonoza came he said that my ammonia levels were elevated and he thought that may be the cause of the foggy feeling I've been having.   They decided to admit me to the hospital overnight for observation to be safe.   High ammonia levels can cause cognitive issues.  

They also decided to stop some of my medications so my liver isn't working so hard to process them.  Hopefully this will give us some answers.  The doctors make their rounds in the morning so I will post more when I know what is going on this morning.  

Wednesday February 24

Slept on the couch last night so I could watch tv and wouldn't keep Colin up.  

Took off my tpn, showered and Colin and i watched the other Redbox movie we rented.   Rock the Kasbah.  It was ok.  I wouldn't rent it again but I wouldn't say not to rent it either.  

I started the morning not feeling well and being all out of sorts.  My whole day was foggy.  I don't really remember anything I did.  Around lunchtime I put on my overnight bag and tried to take a nap.  I was unsuccessful.   I just laid on the couch in a complete zone.  At some point Chartwell delivered my supplies. I don't really remember when or even who delivered them.  

It was just a really odd day.  I'm still having issues.  I talked to Mary and let her know what was going on.  She talked to Dr. Cruz and they want to see me in clinic tomorrow.  I put on my tpn around 5 and I'm laying in bed.  I have to get up at 5 so we can be at the hospital at 6.  I hope to get some sleep and hopefully will feel a little better tomorrow.  I will update at some point after I'm home from clinic tomorrow.  Have a good night.

Tuesday February 23

Got up early and showered.  We left around 5:30 for my appointment.  Got to the hospital at 6.  They did the usual bloodwork, gave me fluids and we waited for the doctors.

The doctors made their rounds around 10.  Everything on my bloodwork is good.  They are adjusting my steroid dosage because my thrush is back and it's down my throat.  They put me back on antibiotics.  I'll be on them for 14 days this time.  Hopefully I don't have too many side effects from them this time.  I'm taking them at night to hopefully contribute to my sleep a little.  The new sleep medicine doesn't seem to be working either so I need to try to get in touch with Dr. DiMartini to see if there's something else we can do.

My blood pressure is still high which is another reason they are adjusting the steroids.  I have to touch base with Mary the end of the week to give her all the numbers and see if they want to adjust my blood pressure medicine at all.  

All in all that was the overview of my appointment.

We got home and rented some movies from the Redbox.  I fell asleep during the first one.  It was Bridge of Spies.  Not very good.  While the movie was on I got a phone call from the rental office.   They said they had our replacement fridge and asked if I would clear out the old one before they got there.  I emptied the fridge.   They came and brought us a new one and we swapped it out.  Hopefully this one won't freeze everything on the top shelf like the other one did.

They left and Colin took a nap.  I played a new game on my phone and hung out until it was time to get my tpn together.  I put on my tpn and face timed with Amber and the boys.   They were making rainbow spaghetti and wanted to show me how to do it.

After that I laid down and went to bed.  I got up about midnight and went to the couch.  I couldn't sleep.  I finally fell asleep around 3 and alept til about 4:30 and then fell back asleep from around 5 to 6:30.  Not a good night but I got a little sleep at least.  

Today is going to be cold and rainy.  Not sure what I'm going to do.  I will update later.   Have a great day!!

Monday February 22

Had an ok nights sleep.  Woke up got dressed and put on a bag of fluids.   When it was done I ran to target to get blades for Colin's razor.

I got home and started to watch a movie.  All of a sudden I felt a dripping on my stomach.  The wax seal had broken and my ostomy bag started leaking.  I went into the bathroom to change my bag.  In the middle of changing it there was a knock at the door.  I hurried and tried to put myself together no answered the door.   It was the maintenance guy.  Our refrigerator is freezing stuff so we put a maintenance request in because we can't risk my tpn freezing.  

He was there for a couple of minutes and left.  I went and sat on the couch to finish sealing my bag.  I usually hold the seal for about a half hour.   About 20 mins into it there was a huge surge of wet.   The entire seal popped off and it was everywhere!!  I ran to the bathroom, cleaned myself up and started all over again.  It was so frustrating.  It took me another half hour to clean up the mess.  My afternoon was completely shot after that.  I spent extra time sealing my bag and did a load of laundry which I dirtied between the leaking on my clothes and what I had to clean up.  Not a good afternoon.

Mary called to tell me they were putting me back on the antibiotic Diflucan and that I would be on it 14 days this time for the thrush.   She also said that Dr. Gonoza and Dr. Cruz are going to talk about adjusting my steroids and we would discuss it in clinic Tuesday. 

Chartwell ended up delivering my antibiotics right after Mary called.

After that I just sat on the couch and watched the Kids Baking Championship.   Colin grabbed dinner on his way home so I didn't have to make something.   By 5:30 I had to get my tpn on since we have to be at the hospital at 6 on Tuesday.  I put on my tpn, ran my antibiotics and went to bed around 8.  I was up all night.  I maybe fell asleep for an hour.   Needless to say I am exhausted today.  Hopefully I can nap or get some sleep tonight.  I'm at clinic this morning so I'll update a little later.   Have a good day. 

Sunday February 21

Slept pretty good last night.  I was completely exhausted from a long day.

Colin, Max and I walked over to the grocery store and got redbox movies for their ride home.

We got back and everyone got breakfast.  We all kind of lounged around and hung out for the morning.  The crew took turns showering and then they started packing up their stuff to get ready to hit the road.  

They left around 11.  It was really nice having them visit and having the company.   We had a lot of fun.  I was sad to see them go.  It's always nice to have company but I get sad when they leave.  

After they left, Colin started tackling the massive pile of laundry.  I just relaxed because I'm exhausted.  We watched tv for a little bit then put on a movie.  I think I fell asleep for about an hour.  Hopefully my little cat nap doesn't ruin my sleep tonight.  

I took a break in between watching tv to fold the laundry and put it away.  It's about 7:00 now.  I'm getting ready to get out my tpn and get ready for bed.  I'm exhausted still and haven't really been with it today.  My blood pressure and heart rate are still a little high.  I'm keeping the log so I'll just have to take it to my appointment with me on Tuesday.   I'm hoping my thrush clears up before Tuesday so they don't put me back on the antibiotics.  I really don't want the side effects from them on top of everything else.

Time will tell.  I hope you have a good night!  Sweet Dreams! 

Saturday February 20

Was up at 5 to be at the hospital at 6.  Got to the hospital.   They drew my blood work and gave me iv fluids.   Dr. Cruz wasn't on call so I saw Dr. Gonoza.  I really like him.  Everything was good with my blood work.  My blood pressure was a little better.  My heart rate was high but he didn't seem to concerned.  My thrush is back pretty bad so they gave me a dose of antibiotics while I was there and are going to put me on them for a week again.

I was at the hospital until about noon and then I went over to the Carnegie Science center to meet up with Colin and the family.  The Science center was awesome!!   You could spend all day there.   There was so much to do and see.  It was definitely worth checking out.  We were there almost the whole day.  We left there around 6, went home and ordered pizza for dinner.   We just had a lazy evening.  I put on my tpn and went to bed.  The kids were exhausted and fell asleep early as well.  It was a fun filled day and awesome to have company.   

I am a little out of it already today.  Just feeling the effects of walking so much yesterday.    Good thing is I kind of wore myself out and I actually slept a little bit last night which was nice.

I am going to watch a movie, I will post more later.   Have a good day!!

Friday February 19

I was up all night again.   Crushing my medicine didn't work.

I woke up and put on a fluid, changed my ostomy bag, showered and got ready for the day.   Colin and I went to the car wash to get the salt off our cars.   Then we went to the grocery store to grab a couple of things for our company coming.

We got home and I ran to the dollar store to get some toothbrushes.   They want me to change put my toothbrush every other day to hopefully keep the thrush at bay.   It seems to be coming back again.  

When I got home, I dusted and straightened up the house.   Colin was in the kitchen baking cookies.   He sat down and watched tv when he was done and the got tired. So he took a nap.   While he was napping I swept and mopped the tile floors.  

In the meantime I got a call from Mary, my transplant coordinator following up on my blood pressures.   She still isn't happy with where they stand so she told me to go in to clinic first thing in the morning.  She also told me to put on an extra bag of fluids to get them into my system.    They will do blood work and pressures and see where I stand at that point.   She told me to get there at 6 am.

I got my tpn ready and put everything on so that I would be prepared to take it off early and make sure I got it all.  We got a text from Brooke that their ETA was 10:00.  They left after work and stopped for the kids to eat dinner.  I went in to bed to lay down.  I was falling asleep on the couch.   Of course as soon as I laid in bed I was wide awake.

Brooke got there around 10 and I went out to help get everyone ready for bed and situated.  After that I went back to bed.  I was up most of the night.  It's a little after 6 and I'm sitting in clinic just waiting.  Hopefully it will be a quick day.   Have a good one.  I will post more later.

Thursday February 18

The new medicine didn't work at all last night.  I'm going to try crushing it up tonight and putting it under my tongue.  Hopefully it will dissolve and I'll get some restful sleep.  We shall see.....

Today I didn't do much just because I was so exhausted.  I ran to Redbox and got a movie.  I got a couple things to make Colin's dinner.  I came home and made white chocolate puppy chow for our company coming this weekend.  I also cooked sausage and bacon for the breakfast casserole I'm going to make for Saturday morning.  That way it's already done.  I'll just have to add the eggs and start the crock pot because it cooks overnight.  

I washed some more comforters and straightened up the desk.  Colin and I watched the movie.  I fell asleep for about a half hour while the movie was playing.  We watched Straight Outta Compton about how the different rap groups started in the 80's and 90's.  It was more a movie for Colin then for me but it wasn't bad.  

After the movie I made dinner and we have been watching flip or flop.  I'm getting ready to put on my tpn and then I'm going to go to bed.  Wish me luck on getting some sleep.  I will post more tomorrow.  Have a good night!

Wednesday February 17

Went out to the couch last night around 1 in the morning because I couldn't sleep.  I was up all night.  I fell asleep for maybe a total of two hours all night.

I put on my fluids early.  I watched tv and read a little bit of my book.  Nothing really made me tired enough to sleep though.  

I took off my tpn, showered and got dressed.   Colin was up so we watched the other Redbox movie we rented called Our Brand is Crisis.   It was a movie about a Bolivian political race.  I wasn't too impressed with it.  Maybe it's because there were a lot of sub titles but I just couldn't get into it.   

I returned the movies and went to Target to pick up my new sleep prescription because they called to tell me it was ready.   It's amazing how prescriptions work.   For the brand name it would have been over $1300.00 for 30 days worth.   The generic of it was only $2.18.  SERIOUSLY!!!   The doctor wanted me to have the brand name because it's a desolvable tab that goes under the tongue and can be absorbed that way where the generic is a pill.  My intestines can't always break down the pills which is why I need the desolvable.  Needless to say, I left with the generic pill and I'm just going to crush it up and dissolve it under my tongue on my own.  These drug companies really know how to make money!!  

I got home and was motivated to organize my meds and the bathroom stuff.  We have boxes full of stuff and they are just thrown together with no rhyme or reason.  I took everything to the living room and organized it and labeled the boxes so we aren't digging for things and they are easy to find.  It felt good to accomplish that and Colin was happy too.  He was getting tired of going through five boxes just to find Tylenol.

I also started some laundry.  I am washing all the comforters for our company this weekend.   We are excited for visitors again!!!  

I'm going to tackle the house tomorrow including scrubbing out the fridge if I can muster up the energy.

I've been taking my blood pressure all day today and it's still high.  I was feeling a little better today but my fog started around 2 or so and I'm still in it.  I'm really thinking it's all related to my blood pressure.  I have to call Mary on Friday with an update.  

Well...I'm getting ready to put on my tpn and lay down.   Colin went out to have a drink with Matt and Pete so I'm going to bed early.  I will update you tomorrow.   Hopefully I can get some sleep tonight with my new medicine.   Wish me luck!!  Sweet dreams!!

Tuesday February 16

Woke up at 5 to be at the hospital by 6.   The weather was terrible.  It was raining when we left.   We gave ourselves about 30 mins to get there because the news said the roads were icy in spots.

It took us the full half hour to get there.  We got there and they took my blood and gave me a bag of fluids.  They changed my PICC dressing.  Dr. DiMartini stopped to see me and changed my night time meds.  I will start them tonight so hopefully they will work.

When the doctors made their rounds I gave them my blood pressure log and my blood sugar log.  My diastolic blood pressure is pretty high.   They are a little concerned with it so they put me on a patch to help lower it,   There's a good chance that my blood pressure is causing all of my foggy issues.  I have to continue taking my blood pressure throughout the day and logging it.   They are going to try and monitor it closely.  

Hopefully that's the problem and things settle down and I start to feel better.   They sad the first couple of days on the patch may be a little hard for me to get used to.  We left the hospital and were home by 11.  The roads were getting worse as we drove.   We got home and I ran to Target to check into the diabetic supplies that I've been dealing with.  Insurance is becoming a joke again.

I ended up leaving Target with no resolution except that they had to call my insurance because they couldn't get it to go through even though I called ahead of time to straighten everything out.  It still is not resolved so I'll be making calls all day today too.  Fun fun!!!

We were lazy the rest of the evening.  I made Colin baked ravioli and garlic bread for dinner and we watched The Intern.  It's a really good movie.   We saw it in the theater and he wanted to see it again so I got it at the Redbox.   After the movie I got ready for bed and put on my tpn.  I was up all night.  I made my way put to the couch around 1 and stayed there for the night so Colin could get some sleep.   He's been sleeping on the couch for the past week off and on.   We have been taking turns.

Well....hopefully today will be a good day.   I will post more later.  

Monday February 15

Had another sleepless night.   Put on a fluid early to get it in my system.  

Took off my tpn and got showered and dressed.  Ran to the grocery store to grab a couple of things.  Went home and laid down.  

I was feeling crappy pretty early so I didn't do anything all day.  Colin and I watched a bunch of episodes of Chopped.   We both took a short nap.  I got my tpn and everything ready early since I have clinic on Tuesdays.  I have to put it on around 5.  

I got ready for bed and went in to the bedroom to lay down and get some sleep.

I watched the Grammys for a while and fell asleep around 10 or so.   Then I woke up my typical every 2 hours as usual.   My fog was so bad that I don't really remember much of the day.  It started around 10 in the morning and never let up.  

Today is clinic day so hopefully they have some answers for me.  I will post more later.   Have a good day!

Sunday February 14 Happy Valentine's Day!!

Happy Valentine's Day!!!!  10 years ago today Colin proposed to me.  I can't believe that it has been 10 years!!  Time really flies!

I had a sleepless night last night so I went to the living room around midnight and stayed on the couch for the night so I wouldn't keep Colin up.

I watched Chopped on Netflix all night.  Episode after episode starting with season one.  I still have a long way to go but I love that show!!  

Colin slept in this morning so I waited on the couch for him to wake up.  Once he was up I got showered and dressed.   We got ready and went to the Convention Center to the Pittsburgh Auto Show.  It was a car show with some exotic cars and all the different 2016/2017 vehicles.  It was something different to do and we had fun.  I was really hoping they would have had more classic type cars but no such luck.  Here's just a few of the exotic cars they had.

After the car show we stopped and grabbed lunch at Steak and Shake and then went home.  We laid on the couch and watched tv.  I actually took a little nap which was much needed.  I slept for about an hour.  We were going to go to a movie but I just don't have the energy.

I ordered Colin pizza for dinner and we are watching Oceans 11.  I'm feeling a little better today so I'm hoping that tomorrow will be even better.  I'm really hoping to get some sleep tonight and to get some rest but time will tell.

I hope you had a Happy Valentine's Day!!!  I will touch base tomorrow.  Goodnight!

Saturday February 13

Had another completely sleepless night.  Taking away my night time medicine has definitely effected my sleep.  Unfortunately I'm still in a fog.  It starts around lunchtime and lasts the rest of the day, the evening and throughout the night.  It has been awful and I'm really hoping they can figure things out.

It was so cold that the news was telling you not to go outside unless you absolutely had to.  We had a high of 7 degrees all day plus the wind chill.  I had to run out to return the movie so I bundled myself up and ran over to the redbox.   There wasn't anything else to rent so I came back home.  

I cleaned the house.   Vacuumed, mopped the floors, dusted.  I just felt like I needed to accomplish something for the day.   I paid some bills which is always fun!!  

After that I watched a little tv.  I had no motivation to make dinner so when he got home we ran and grabbed dinner quick.   After dinner we watched Pawn Stars.  I got together my tpn and went to the bedroom to lay down.  Bride Wars the movie was on so I watched that and laid in bed hoping to fall asleep.  I had no such luck but today is a new day.   Hopefully I will feel a little better today.  I hope you have a good day! 

Friday February 12

I didn't sleep at all.  My day was a lazy day.  I went to the Redbox and got a movie.  Other than that I just laid around. 

I really wasn't feeling well and I definitely wasn't in the mood to do anything.   I tried napping but was unsuccessful.  It was just all in all a bad day.  

I couldn't muster up the energy to make dinner or straighten up or anything.  I just felt awful all around.

We watched the movie - Truth about politics and George Bush.  It wasn't a very good movie.  I'm really not in to politics so I may not be the best judge of it.  I tried watching it but just couldn't get interested.

Last night was a busy night for phone calls.  Shawn called and I was on the phone with him for about an hour.  Then mom and dad called to see if I was feeling any better.  While I was on the phone with them Amber called. 

When I was done talking to everyone I got together my tpn and went in to bed to lay down.  I didn't sleep at all.  Hopefully I can catch a nap today.  We will see.  I hope you have a good day. 

Thursday February 11

Had a pretty lazy day again because I wasn't feeling well.   Spent the majority of the day laying on the couch.   

I really didn't accomplish much.  I took out the trash and ran to Target to look for the test strips for my blood glucose monitor.  I did not buy them.   They were $185.00 for 100 test strips.  The pharmacist said to try to get a prescription for them so I emailed Mary and asked if that was somethings she could do.  She's going to send in a script today.   Fingers crossed my insurance covers part of it or we can at least put it towards my deductible.  We will see.....I'll have to call the pharmacy today and find out if it goes through.

Around 4, Dr. DiMartini called.   She is stopping one of my nighttime meds to see if it helps with my "fog".  She's going to meet me at my appointment on Tuesday and discuss it.  Hopefully it helps and I have a better day today.  It's a terrible feeling not being coherent.  

I chilled out the rest of the evening, put on my tpn and went to bed.  I fell asleep for a little bit but was up at midnight so I went to the couch so I wouldn't keep Colin up.  I slept maybe a total of two hours last night. Hopefully I can possibly nap today.   We will see.   Have a good day.  I will post more later.

Wednesday February 10

Woke up and felt really nauseous.  Took off my tpn, showered and laid on the couch and watched a movie.  We watched Love the Coopers.  It was pretty good.  

I hung out and did nothing for a couple of hours and then I ran to the store to get a couple of things that I forgot when I went the other day.

I stopped at Target and got a couple of bath towels because we had some that were ripping at the edges.  I got home and did laundry.  My favorite thing to do......

In the afternoon I watched tv and hung out.  I started dinner around 3.  I was supposed to have therapy at 4 but talked to Rebecca around 11 and we rescheduled it for next week.  

Max, my nephew is doing a report on me for school.   They were assigned to pick a cause and do a report on it and what it means to them.  He called and asked if we could make him a video of what I do every night with my tpn in order to show it to his class as part of his report.  Colin video taped me getting my tpn ready and we sent it to him.  I'm excited to see how it turns out.  I'm sure he will do a great job!!  He's a very intelligent child.  

After we sent that over to him I went in to bed.  It was a typical night for me.  Not sure what today is going to hold for me.  Time will tell.  I hope you have a great day!!

Tuesday February 9

Went in to clinic this morning at 6.  They did my blood work, gave me some fluids and changed my PICC dressing.  We waited for the doctors to make their rounds.  Everything looked good on my blood work.  I talked to the doctors about my foggy feeling.   They are going to reevaluate some of my nighttime meds and see if that could possibly be causing some of the issues.  They want me to take things slow and not over exert myself.  They also got the blood test results back for the CMV virus and I'm still negative and have never been exposed.   Apparently there was an organ on Friday that would have been perfect but it was CMV positive so they couldn't give it to me.  It's a little disappointing but I understand why they don't want to put me at risk.

I also have to start taking my blood pressure three times a day and log it.  I have to take my blood sugar three times a day and log it and I have to measure my output each time I empty my bag and log it.  They are trying to see if there is any sort of pattern to my feeling crappy.  My heart rate has been good but my blood pressure has been a little on the high side.  I started that today at noon and will have to keep a log of everything and take it with me to clinic each week.

We got home from the hospital around 11:30.  I showered and chilled out for a little bit.  It was snowing all morning so it was a nice chill day.   Around 1 I decided to go for a walk.  I went over to target to get Colin a couple of things they didn't have at the grocery store yesterday.  I also stopped at Marshalls to look for bath towels.  

I headed home.  Once home I started dinner for Colin. We had dinner and watched The Martian.  It was a long movie but was actually pretty good.  It's a little after 7.  I'm getting tired and am probably going to put on my tpn a little early and lay down.  Hopefully I will get some sleep tonight and will feel better in the morning.  I hope you have a good night.  I will touch base tomorrow.   Sweet dreams!

Fundraiser - Check it out!!!

My friend Kelly is hosting a fundraiser.  Unfortunately I won't be able to make it but please join her for a day of crafting and fun!!!    They are also looking for donations of gift baskets for giveaways if you would be willing to contribute.   You can contact me via Facebook or email me and I can make arrangements for her to contact you and coordinate.  Have a good day!!   Hope you can make it!!!

Monday February 8

Today was a lazy day.  Got up and showered.  Put on a fluid.  Made a grocery list.  Went to the store like the rest of the town anticipating snow.  Probably not the smartest thing but I needed to get some things for dinner.

After the store I cleaned up the apartment and took out the trash.   I started dinner because there was a lot of prep to it.  After I got everything ready I sat and watched tv for a little bit.  

Around 4 I got dinner finished and Colin ate.  I started to get my tpn ready early because we have clinic on Tuesday at 6.  I put on my tpn around 5:30.   Changed my ostomy bag and got ready for bed.  I went in around 7 to lay down.  

I had a pretty uneventful day.  By 1:00 or so I was feeling really worn out and was in a fog.  I'm going to talk to them about it again at my clinic appointment.  Hopefully they can give me some insight on what's going on.  I will update after my appointment.   I hope you have a good day!!

Sunday February 7

Got up and ready for the day.  Everyone had leftover bagels from yesterday for breakfast today.  After breakfast we took turns showering and getting ready for the day.  

Once everyone was ready we got in the car and went down to the strip district to walk around and so Kelly and Matt could see the different markets etc.  We stopped in a couple of stores and picked up a couple of things.  We were there for about two hours.   When we were done we headed back to the Waterfront to check out the new candy store they put in.  It is a pretty cool place.  It has all kinds of nostalgic candies and sodas.   They have some really odd things like maple bacon soda, peanut butter and jelly soda, and normal sodas like root beer etc.  I got some hard candies and Colin grabbed a soda to try.  It is a pretty cool place.

After that we went to Burgatory for lunch then headed back to the apartment.   When we got back Kelly and Matt packed up their stuff and loaded up their car.   We said our goodbyes my they left.   I was sad to see them go.  I enjoyed having their company.  

When they left I put on a bag of fluids and we watched a movie.   After the movie I got Colin some dinner.   It's about 6:30 now, we are watching golf and getting ready to watch the Super Bowl.  It's going to be a pretty uneventful night for us but I'm ok with that.   

I've been feeling a little better.  I'm in a fog but it's nowhere near as bad as it has been so that's good.  Hopefully the antibiotics are out of my system at this point.   

Have fun tonight and be safe if you are going out to watch the game.

Goodnight!!

Thursday February 4

Was up early as usual.  Got everything together for the day and put on a fluid.

Around 9 I got a call from Mary my transplant coordinator.   She made me an appointment to get my PICC line exchanged.   She said to be at the hospital at 10:30 for the procedure.  I unhooked my fluid and got ready to go over.  I got to the hospital around 10:15.  I sat and waited until about 11:30 when they finally called me to go back.  The surgeon looked over the line and made some measurements.  He decided to keep it in the same arm and move it slightly to the right.  They prepped me and removed the old one.   Then they put the new one in.  It was pretty quick and painless.  

It took about an hour to have the procedure but as soon as I was done we were allowed to leave.  We came home and I put on another fluid since I couldn't finish the first bag in the morning.   While the fluid was running I made taco dip and cut up some cubed cheese for cheese and crackers.  I also got together Colin's dinner.  I made sausage and potatoes.  

Around dinner I got another call from Mary telling me I had to go to the hospital tomorrow to get additional blood work done and to be there at 7am.  I got my tpn on early and got ready for bed.  I went to bed around 8.  I was feeling a little better today.  My fog didn't start until a little later in the afternoon which was good.   And I wasn't aHopefully today will be even better.  

Saturday February 6

Woke up and got ready for the day.  Colin went to Panera and got bagels for breakfast for everyone.  They had breakfast and we all got showered dressed and ready for the day.

We got in the car and went to the Pittsburgh Aviary.   It was a pretty cool place.   There were so many cool exhibits.   The Penguins were really cool.   They would come right up to the glass.  Then there were exhibits where all the birds are loose just flying all around and coming right up to you.   There were really cool birds of prey in cages that you never realized how absolutely huge they really are.  It was a neat experience.  We were there for about two hours.

We left there and went home to eat lunch and for Thomas to take a nap.  Colin and Matt left to go check out REI.   Kelly and I hung at the apartment to try and get Thomas to sleep.   After about an hour and a half of him fighting and Kelly finally just taking him outside in his stroller for a walk he finally fell asleep for a little bit.

After his nap we went to the incline.   Thomas loved it.  We went on the Monogahela incline this time to try something different.  It was nicer than the Dusquense incline and wasn't as old and rickety.  We got to the top and went on the lookout.  

After that we walked around the river and then went to Joe's Crab Shack for dinner.  After dinner we went back to the house and just chilled out for the evening.   Thomas was tired and fell asleep as soon as they laid him down.  We watched tv for a little bit and then went to bed.   It was an eventful day and took a lot out of me but I was happy to be occupied and have the company.  

Friday February 5

Woke up early and went in to the hospital at 7 for my blood work.  We were only there for about an hour.  We came home and showered, changed my ostomy bag and showered.  Then I put on my fluids for the day.  

Around 9:30 Mary called and asked if I could go back to the hospital because they had some immunization a they wanted to give me.  I told her I could do that.  She said she would call me back with a time.  She called around 10:45 and asked if I could be there at 11:30.  I headed back to the hospital.  They gave me three vaccines.  One was a pneumonia vaccine, the second was a menengitis vaccine and I'm not sure what the third was.   They actually had to give me one in jettison in my arm and the other two were given one in each butt cheek.   Lots of fun for the day!!

I got home from the hospital at a little after one.  I made Colin lunch and then we started cleaning because we were getting company.   We cleaned up the house and then ran to the grocery store for some last minute items.  After the store we watched tv until our company got there.

Kelly, Matt and Thomas got here around 6.  When they got here we unloaded their car and got ready to go get something to eat.   Thomas was in rare form from sitting in the car for 4 hours so we took them to Dave and Busters so he could run off energy.   We ate dinner and played games til about 9.   Then we headed home to go to bed.  I put on my tpn.  Colin got everyone settled in and got all the bed clothes out etc and then we all went to bed.

It was a nice day and nice to spend time with them.   We are doing a couple of things today but I'm not 100% sure what.  I'm just excited to have them here :)

Have a good day!!  I will post more later.

Wednesday February 3

I put on my fluids early.  First thing in the morning because I wasn't feeling well.  I relaxed while they were running.

I got showered and dressed.  After I was up and moving I ran to Michaels and got some paint.  Mom sent me an art set in the mail a couple of weeks ago for something to do so I'm going to start some painting.  Then I ran to TJ Maxx to get Colin some socks.  When I was done I ran to the grocery store to grab a couple of things that we needed.  

I got home and my tpn delivery had come so I had to organize and put everything away.  

I was feeling a little better in the morning but as the day progressed I started to feel worse.  By the afternoon I was in my fog and all out of sorts.  I couldn't focus and was really nauseous.

I got ready for my therapy appointment at 4.  I left the house a little after 3.  I got there just in time.  Traffic is horrible that time of day.  When therapy was done I headed home.  When I got home we got company.  Matt and Pete stopped with their dog Jazzy.  They stayed and hung out for a little while.  When they left it was time for me to put on my tpn.  I put it on and got everything together to go to bed.  I went to bed around 8 and watched tv until I fell asleep.  

I was up every 2 hours last night but hopefully today will be better.

Tuesday February 2

Was up a little after 5am to get ready for my appointment.  We left the house and went in to the hospital.

They did my blood work, gave me a bag of fluids and changed my dressing.  The doctors made their rounds and said all my lab work was good and that they were going to make a few changes to my tpn.  Instead of doing 3000ml a day they are increasing it to 3500.  They are hoping this will make it so that I only have to do one fluid a day.  They are also going to add vitamin D to my daily regimen.  

I talked to them about how awful I've been feeling and they said its side effects from the antibiotics and that it will take up to 72 hours after I'm done with them for me to get them out of my system and start to feel better.  My last dose was Monday so hopefully I will feel better today.  I was very nauseous last night.  It kept me up most of the night.  

After we got home, I showered and put on comfy clothes.  I did laundry all day and just relaxed.  I didn't want to over-do it.  I did my tpn around 7:40 and got ready for bed.  A pretty uneventful day.  

Maybe I'll have a little more motivation today.  I will post more later.  Have a good day!

Monday February 1

February did not start off on a good note for me.  I woke up feeling awful.   As the day went on I just felt worse and worse.  I spent most of the day laying on the couch resting.

I was extremely nauseous.  My head was spinning.  I was so weak it took a lot of energy just to walk to the bathroom.  I was very shaky and unsteady on my feet.  

I ended up going to bed around 6.  The day was just not a good one for me.

The night was worse.  My ostomy bag started leaking so I had to change it.  That happened around 10.  We got up, changed the sheets and cleaned it up.Then at 3 in the morning it broke all through the bed and we had to get up and change the sheets again.  It leaked down to the mattress so I had to scrub that really well.  It was a mess and a completely sleepless night.

On another note.   There was an article on Pennlive in Harrisburg on me.  It was a pretty good article.  I'll post the link here.  I hope you have a good day.  I have clinic today so hopefully we will have some answers on what's going on.

http://www.pennlive.com/news/2016/02/lancaster_woman_awaits_new_nor.html#incart_river_home

Sunday January 31

Woke up at 4 and couldn't go back to sleep.  I stayed on the couch and watched tv for a little while.  Around 5 I put on a fluid.  When it was done my tpn was done as well so I unhooked everything and got showered and dressed.  

My parents were still sleeping so I sat on the couch and distributed the bracelets into envelopes for those who are going to sell them for me.  

When mom and dad got up I helped them gather their stuff together to go home.  They left around 10.  I called Colin and he was on his way home.  I stripped the bed clothes and washed everything.  I did my laundry as well.  I cleaned out the fridge and cupboard again and took out the trash.  I make a lot of trash with all of my iv stuff.  

Colin got home around 12:30.  We watched tv and he took a nap for a little bit.  After his nap he met up with a friend and went to dinner.  I put on my pajamas and chilled out on the couch.  

I had a really bad day today.  I cried for the first time in months.  I'm not even 100% sure why I cried.  I was really nauseous all day and feeling so run down.  My whole body aches and feels extremely weak.  I walked down to get the mail and by the time I got to the top of the steps I was shaking.  Depending on how I feel tomorrow I may call Mary and talk to her and see if I need to go in a day early.  I will keep you posted.  Hopefully it's just the antibiotic.  

Have a good day!