Wednesday June 29

Woke up, got dressed.  We got ready and went to Eat N Park for breakfast.  I had an egg and cheese burrito.  It was ok.  I haven't been too impressed with my breakfasts lately.  I think my tastebuds are all out of whack from the meds.  I don't get the full tastes anymore.  

We ran to the car wash and Colin vacuumed the car, cleaned the inside of the windshield and ran it through the brush wash.  It looked really good when it was done.  We went back to the apartment.  I took my book and say at the bistro table so Colin could vacuum and dust.   The house is spick and span clean.  

Mom came to visit and got to the apartment around 10.  We hung out a little bit and then went to Arby's for lunch.  I couldn't really taste anything but ate anyway.  We stopped at target so I could exchange a game.  Then we stopped at the grocery store to grab a couple things.  We also got two movies from the Redbox.

We got to the apartment and put away the groceries.  We watched tv for a little bit and I helped mom with some things on the computer.  The maintenance guy came to exchange one of the blinds in the living room in the midst of all this.  The blind has been stuck in the same place since we moved in.  Now they move up and down and open and close smoothly.  He left after about 20 minutes. We got done on the computer around 4:30 so I put our frozen pizza we got for dinner in the oven.   

We ate dinner and put in one of the movies.  We spent the rest of the evening lounging.  I drank some tea, took my night time meds and laid down.  I haven't fallen asleep yet so I'm hoping to fall asleep until I have to get ready for clinic in the am.  So....have a good night.  Sweet dreams!

Tuesday June 28

Woke up and took my 6am med cocktail.  I got up, showered, changed my ostomy bag and got dressed for the day.  My stomach was feeling a little better this morning and because I have to eat when I take my meds we decided to go to Panera for bagels.   We got in the car and decided against it.  There's a place called Waffles Inc that we have been seeing commercials for and everyone raves about.   We decided to go there.  They didn't open until 8 and we got there around 7:30 so we just drove around and checked out the area a little bit.  

We've been down there before but never really took the time to see what small stores they have. One of these days when I'm feeling better and have the energy I may go down during the week and walk around and check them out.   Some of them look pretty interesting.

We went back to the breakfast place and sat outside since it was a gorgeous morning.  I had waffle crepes and Colin had some sort of waffle with eggs on it.  It was pretty good.   The place was small but really cute.  

After breakfast we headed to Target to get my prescription refills.  While we were there we grabbed a camping chair so that I can sit outside in the grass along the river and read my books.   It will get me out of the house and the pool at the complex is always crazy busy and I can't get in the water so I don't want to just lay there by myself and I don't have a bathing suit here so I'd have to go out and get one.   I'm not sure I want to get into all that mess but it's early in the season so I may change my mind.  You never know!!  We also went down the game aisle and grabbed a couple of board games.  I stink at Monopoly and that's the only real board game we have here.  We have chess and checkers too but I don't know how to play chess and checkers is pretty boring.  We got boggle, battleship, sorry and a game called snap.   Something different to do to occupy our time.  

We left Target and headed home.  I went through all the mail, paid bills and organized everything.  Colin spent the afternoon cleaning the house, scrubbing the floors, doing laundry, cleaning out the fridge etc.    he was definitely on a mission.  I stayed on the couch and watched.  I wasn't much help.  

Lunch came around and I had tuna noodle casserole for lunch and Colin heated up leftover chicken.   We ate and then played Boggle for a little bit.   We relaxed and watched tv until dinner time.  We ended up going to Cheesecake Factory since I still have a bunch of gift cards for there.  I had chicken with rigatoni and Colin got a club sandwich.  We ate and ordered dessert to go.  We got home, I took my meds and put on my pjs.  We watched tv for a little bit and then got out our desserts. I debated forever on which one to get and I was disappointed.  It wasn't horrible, it was just not what I expected.   I ate about half and put the other half in the fridge.  I figured I'll eat a little at a time since it's so unbelievably rich.  

As the day went on I was feeling a little better.   Towards bedtime, I started to get shaky again and my blood pressure was getting higher.  I went in to bed around 7 and just chilled out.   I took my 8 meds and fell asleep by 9:30.  Of course I was watching Chopped when I fell asleep.  My favorite show ever.  I kept waking up off and on and got to see boys and pieces of it because they played the same three episodes over and over again all night.   It was pretty funny.  

It was a restless night but I did sleep better than the previous so I'm making some progress.  I've been up since 3am so I'm hoping to not nap today and make myself tired enough that I'll get a good night's sleep tonight.   We have to be in clinic tomorrow at 6 so I'll have to get up around 5.  

Well....here's to another day.  Hopefully an uneventful one.   Until tomorrow!   Have a good day!

Monday June 27

Woke up at 5 so we could go to clinic.  Got to clinic.  They did my blood work and took labs.   I had my scope and biopsy scheduled for 8 so they prepped me and got me ready for that.

The Gastro Doctor came in and started the procedure.  It was extremely painful.   Probably the worst biopsy I've had pain-wise yet.  He put the scope in twice as far as they usually do and he put in a lot of air as well.   I was in tears clenching the poor nurse's hands the whole procedure.   It was only about 15 minutes long but it felt like an hour.   

Once it was over they gave me some iv fluids and some pain medicine to try and calm

Me down and get the pain under control.   The good news was that everything looked good on the scan.  The biopsy results take about 24 hours to come back so I wont have them yet.   My potassium was low so they gave me an iv of that as well.  We hung out at the hospital until it was done.   Once it was done we left and got into the parking garage.   All of a sudden I felt like I was going to pass out.   My head started spinning and I felt flush.   Colin grabbed ahold of me and there just happened to be a nurse walking by.   She put me in her car while Colin went and grabbed a wheelchair.   We got in the wheelchair and he took me back in to the clinic.

They wheeled me back to the room and called the doctor.   They gave me some more pain medicine, checked my blood pressure and vitals and decided to send me for a ct scan.  There was a decent amount of blood coming out of my ostomy so they wanted to rule out any kind of perforation or tear from them scoping me.  We waited about an hour.   They took me for the ct scan and then back up to my room.  

We waited about a half hour and Dr. Cruz came in and said everything was good on the ct scan.  They checked my vitals again and said to keep an eye on everything and if it gets worse call my coordinator.  Colin wheeled me out and got the car.   We headed home.  I put on my pjs and laid on the couch.  I headed to bed around 8 and just chilled out.  My stomach pain wasn't subsiding.   I tossed and turned all night to try to stay comfortable.  That was my fun day!   I hope yours was better.  

Sunday June 26

Woke up, took my 6am meds.   Got showered and dressed for the day.

Organized my medical cabinet and got rid of things we will no longer be needing since I'm done with the tpn and am eating and drinking real food and beverages.   It's so crazy how far I've come.    I had some cereal for breakfast and watched tv for a little.  After a little bit I went to the bedroom to pack up some winter stuff for Colin to take home with him this weekend when he goes to visit the dogs.  I got a bunch of medical supplies for Cyndee to drop off at hospice.   They are always so grateful for things like that.

After that we went to the bakery.  We grabbed a couple little mini desserts.  We headed home, returned the movies and stopped at Marshalls.  I got a gift card for my birthday for there and I wanted to get some ice cube trays.  I got ice cube trays and a banana holder and still have $15 left on my gift card.  

I chilled out til dinner.   Colin made teriyaki chicken with veggies for dinner on the new foreman.  It was delicious!!!   While we were eating....my phone was blowing up from the event.  See below!!  Sorry I missed it!

 

 

 

 

 

 

 

 

 

 

 

 

 Thank you to each and every one of you who attended Heather's Rock for Health at Tellus 360.   I am so sorry that I was unable to attend.  I heard the turnout was unbelievable and that the bands and dj were amazing!   This past year and a half has been so difficult and I couldn't have gotten through it without your love and support.  I am completely overwhelmed and touched by each and every one of you.   I have met so many new people along this journey as well.   I can't wait for the day that I can see each and every one of you face to face and hug and thank you for your love, support and prayers.  I have a long road of recovery ahead of me still but know I can do it with your support.

I hope you all had a great time and I look forward to seeing pics!   Have a great night!!   Miss you and love you!!    Thanks again for everything!!!!   ❤️😘💜❌⭕️❌⭕️💚😘💗

Saturday June 25

Woke up this morning after a horrible sleepless night.  Took my medicine and had cereal for breakfast.

Around 9 we went to the grocery store to grab a couple things we forgot yesterday.  We stopped at Michaels too to get a basket for a gift we are making.  We got home around 10.  I put my pjs back on.  I laid on the couch and we watched tv.  

I wasn't feeling well.  I was really weak and shaky.  I took my lunch meds and Colin put on my iv antibiotic.  It ran for an hour.  I got up and got lunch together once my iv was done.  We had the tuna casserole I made yesterday.   Colin didn't like it and threw his away.   He's not really big into hot tuna.  I love tuna casserole which is weird since I hate seafood.  

After lunch I went into the bedroom and laid down for a little bit.  I fell asleep for about a half hour.  I got up and put my laundry away.  Colin has been doing all the laundry but I've been letting mine pile up.  Just doing that took a lot out of me.  I went to the living room and laid on the couch.   We put in a movie and chilled out for a little.

We decided to order pizza for dinner since Colin wasn't too happy with his lunch.  They delivered it around 5.  It was ok.  A little too cheesy for my liking if that's even possible!!!  But Colin enjoyed it.  After dinner I chilled out on the couch.  I'm still not feeling well and my blood pressure is high so I decided to go to bed.  I'm laying in my bed watching Cruel Intentions.  

I'm staying here for the rest of the night.  Hopefully I'll feel better in the morning.  Colin is checking on me every 2 minutes.  He's afraid he's going to come into the room and I'm going to be passed out again or something.   He's really stressed out.  

Well...I hope you have a good night.  I'm going to try and get some rest and hopefully I'll get some sleep tonight.  Have a good night.  Sweet dreams!

Friday June 24

Slept ok last night.  I was tossing and turning a lot.   I got up and out of bed.   I had fruit loops for breakfast.   After breakfast I got showered and changed my osteomy bag.  It's so nice to be able to actually take time to shower.  I was even able to shave my legs!!!   Amazing feeling!   I wore shorts today because I could.

It's really hot here today.  Humid and 89.  We left the house once today.  We went to target and got a George Foreman grill.  Then we went to Rocket Fizz, this really cool candy store in the waterfront.  They have all kinds of candies and exotic sodas.  I needed a sugar fix.   Colin wasn't too happy bc he thinks it's too much but I keep telling him I deserve it.  

We stopped at Friday's and grabbed a quick lunch.  We returned the movies from yesterday and rented three more.  We were home by 1:30.  Once we got home we watched Ride Along 2.  I fell asleep but Colin said it was pretty good.   I got up and made tuna noodle casserole so I have it for the week and I made captures pasta salad to have with dinner.   Colin is going to try the foreman and make burgers.   

I am feeling shaky and weak today.  I still have the body aches and headache but haven't taken any pain meds.  I don't like the way they make me feel so I am trying to work through on my own.  It could be a long day.  

I finished making my stuff and went back to the couch to chill out.  It took a lot of energy out of me doing that so I didn't leave the couch.  Colin got up and cleaned my mess.  He started dinner too.  Dinner was ready at a little after 5.  It was a delicious burger and the foreman got a lot of the fat out of it.   He was really happy with it and how it cooked.  We also had fries and the caprese salad.  It was a good dinner.  

He cleaned up dinner, gave me my 6:00 meds and took my blood pressure.  He put in a movie and we laid down to watch it.   Around 7, I decided to go to the bedroom to lay down and be more comfy.   He came in and got me settled then went back to finish his movie.   He checked on me every 10 minutes.   After the seizure last week he doesn't want to leave me alone.  Hopefully he will get over it in time but I'm sure it was scary for him to find me the way he did.  

At 8 I took all my night meds and now I'm in bed for the night.  Colin is laying beside me and we are watching Say Yes to the Dress.  Not his choice obviously ;).  Hopefully we will get some sleep tonight.  I will post more tomorrow.  Sweet Dreams!!

Thursday June 23

Woke up feeling a little better.   Got about 3 hours of sleep.  

The docs made their rounds around 6:30.  I ordered breakfast and waited for Colin to get there.  We went downstairs and grabbed hot chocolate.  The docs had some iv replacements to give me but said once they are done I could go home.   They gave me a lecture about not doing too much and taking it easy.   They said I'm going to feel awful for at least another week.  

We grabbed lunch from the cafe.  After lunch around 2 or so my iv's were all done so we got ready to go.  We packed up and headed home.

When we got home I changed my clothes and we ran to the grocery store because we had absolutely no food in the house.  We stopped and grabbed dinner and headed back home.   We rented movies so we are and watched Dirty Grandpa and Hateful Eight.  They were both pretty good.  It was an uneventful eve.   I went in to bed around 8.  I fell asleep around 10 or so.   Had an ok evening.   Today is going to be uneventful as well.  I'm working on the golf stuff.  I will post more later.   Have a good day!

Wednesday June 22

Woke up today feeling terrible.   It was not a good day today.

I sent Colin home before lunch.   Things are just too much right now.  I feel terrible and just want to be left alone.   I needed a break.   The nurses put me on a bed alarm and wouldn't let me out of bed by myself.  It really sucks but I understand why they did it.  They don't want me falling or passing out.   Good news is, my blood pressure has been pretty good all day.  

I've done absolutely nothing today.  I'm really dizzy and weak.   It's hard for me to even get to the bathroom.   I've been spending the day laying in bed.  

I started working on more stuff for the golf tournament.  We are cutting it close and it's going to be here before we know it.  We are really far behind.   If there's anyone out there who knows someone who can sponsor a hole or donate prizes let me know.  Any help would be greatly appreciated.  We make the most money on hole sponsorships.   We are also looking for foursomes.   We are looking for items to put in our 100 gift bags going to each golfer such as golf balls, divot tools, sunscreen, Chapstick, etc.   we are also looking for gift cards as giveaways and raffle, door and contest prizes.   We are looking for things like men's jewelry, golf items (clubs, practice tools, hats, clothes), watches, sunglasses, beer baskets, wine baskets, snack baskets, two night stays in hotels or at B&B etc.

Any donations or help would be appreciated and are tax exempt.   If you send me your email I can send you all the proper paperwork.   It would mean more to me than you know if you could pass this on to anyone you think may be able to or want to help.

I'd better lay down and try to get some sleep.  I'll post more tomorrow.   Thank you in advance for considering to help.  I really appreciate it!   Have a good night!!

Tuesday June 21

Am still in the hospital and really weak from the seizure.  I was up early this morning for my scope.   They took me down before 7. 

I had the scope and biopsy at 8.   They are going to hopefully have the biopsy results themselves by the morning but everything on the actual scan looks good.  

We got back to the room and I ordered lunch.  I'm still waiting on it.  I've been waiting for over an hour and a half which is highly unusual.   I'll have to give them a call and follow up.

I'm still having a lot of pain and weakness.  They don't want me getting out of bed by myself because of the seizures so I have to have someone with me at all times, even to go to the bathroom.  It's about 2 so I have a feeling it's going to be a long day today.   I'm going to spend some time emailing for the golf tournament and also some time catching up on Orange is the New Black.

For the golf tournament.....if you know anyone who can sponsor a hole or who can donate items for raffles, etc.  please reach out to them or have them reach out to me.  It's been difficult this year getting sponsors because we are so far away.   Any local help we can get would be greatly appreciated.  Anything from hole sponsorship to gift cards for restaurants, stores, etc.  we are cutting it close and need all the help we can get.  

I'll reach out via email to some companies but wanted to see if there's anything you can do to help as well. 

On another note....today is my sister's 40th Birthday!!! Happy Birthday Dana!!   I hope you have a good day!!!

Have a good evening everyone!  I will post more tomorrow.

June 17

The man that we have entrusted with Heather's life told me when we started this whole thing "the first six months are rough, but she'll be ok." I believe him. 

Wednesday a little after 12:00 Heather had a seizure. Followed by another one in route to the ER. To date one of the scariest times in my life. 85 miles an hour, on the phone with the hospital all while leaning her forward in her seat  (so she didn't choke)...I made it in record time. Neurologists, MRI's, cat scans, the gambit.  Her transplant team was on sight leading the charge,  they are truly awesome. Brain stuff is new to me and quite frankly way out of my league. I'll break it down the best I can. From what I gather (amongst all the medical jargon) it was an isolated incident(s) caused by high blood pressure or medication possibly a combination of the two. With her blood pressure under control, it looks like our stay in the ICU is over. Back to the transplant floor today. Heather has all her wits, and aside from some sore muscles and a swollen tongue she should be no worse for wear. The next few days she's expected to be tired, weak and have a bit of a headache. Bumps in the road are expected, in and out of the hospital...we can do that. One things for sure nothing can break her spirit.

-C

June 17

The man that we have entrusted with Heather's life told me when we started this whole thing "the first six months are rough, but she'll be ok." I believe him. 

Wednesday a little after 12:00 Heather had a seizure. Followed by another one in route to the ER. To date one of the scariest times in my life. 85 miles an hour, on the phone with the hospital all while leaning her forward in her seat  (so she didn't choke)...I made it in record time. Neurologists, MRI's, cat scans, the gambit.  Her transplant team was on sight leading the charge,  they are truly awesome. Brain stuff is new to me and quite frankly way out of my league. I'll break it down the best I can. From what I gather (amongst all the medical jargon) it was an isolated incident(s) caused by high blood pressure or medication possibly a combination of the two. With her blood pressure under control, it looks like our stay in the ICU is over. Back to the transplant floor today. Heather has all her wits, and aside from some sore muscles and a swollen tongue she should be no worse for wear. The next few days she's expected to be tired, weak and have a bit of a headache. Bumps in the road are expected, in and out of the hospital...we can do that. One things for sure nothing can break her spirit.

-C

Monday June 13

Woke up early to get ready for my scope.   They took me down to have it done around 8.  The doc came around 8:30 and they did it fairly painless and quick.  That doesn't happen too often.   I always have a lot of pain afterward because they blow up my intestine with so much air.

The doctor said everything on the scope looked good from what they could actually see and that they would have the actual biopsy results by the next day.

We went back to my room and I laid down for a little bit.  I got breakfast and chilled out.   We went for a little walk and went back to the room.  I worked on the golf stuff a little more.

For lunch we walked to the cafeteria.   I had some pasta and ice cream.   Colin had another salad which again looked delicious.  We went back to the room and Dr. Cruz stopped in to tell us that my EBV level came down significantly and that I wouldn't need another treatment of the antibiotics!!   That was great news.

Colin and I went outside for a walk.   When we got back we laid down.   He fell asleep, I just hung out relaxing and watching tv.  Dr. Cruz came back a few hours later and said everything on the biopsy was great and that we could go home tomorrow!!!   It was a pretty good day filled with good news so I was really excited!!!  

I am still having a lot of pain and I'm really weak but I'm hoping to regain my strength back.   They said it's going to take a while because it's kind of like having the flu.

Colin left the hospital around 3:30.  He went to check out a golf course/driving range he found to see if he liked it.

I walked downstairs to the cafe and grabbed a taco for

Dinner.  The hospital menu has been getting old.  I had dinner, worked on the golf stuff and went to bed.  I liked forward to hopefully being discharged tomorrow.  I will post more later.   Wish me luck!!

Sunday June 12

Another uneventful day.   I was up in pain most of the night.

Woke up and showered.   Ordered breakfast and went for a walk.  The docs came in and said everything was good on the labs.  I didn't need any replacements and my prograf levels were good.

Everyone on the floor was ordering lunch so Colin and I ordered as well.    We split a Stromboli and he had a salad as well:   His salad looked delicious.  That's one thing I'm still craving but am not allowed to have.   Eventually I will get there I'm sure.

After lunch I got on the computer and worked on golf stuff.   I feel like all I'm doing is sending out emails and getting no response.  I'm just going to keep pounding away.   Colin left around 4 to run errands and clean up the house.

I ordered noodles for dinner and ate light since I had so much for lunch.  I continued sending emails and went to bed around 9.   I couldn't eat or drink anything after midnight because I have a scope and biopsy in the morning.  

Saturday June 11

Was up all night again.  I felt a little better when I woke up this morning.   Colin came in bright and early.   He brought me a donut for breakfast and it was delicious!!!!   

After breakfast we walked.  Dr. Cruz came in to make his rounds.  Colin brought him his favorite pecan coffee cake.  The doctor stayed and ate breakfast and hung out for a while.  He was telling us stories about other transplants and about Brazil.  He also came in with a little surprise for me....he got me a bed on the 11tj floor because I told him how uncomfortable I was the night before.  I was so happy!!!  After Dr. Cruz left we went for a walk.   We went back to the room and worked on some more golf tournament stuff.  

Around 11 transport came to move me to my new room.   So I'm back on my favorite floor!  I'm super happy about it.

We walked over to the cafe for lunch.  I had chicken tenders and French fries.  Colin had a wrap.  We are lunch and went back to the room.  I worked on the golf stuff some more.  Colin took another cat nap.  He got up and we tweaked the golf documentation a little more.   We sent out a bunch of emails.   

Before we knew it, it was dinner time.  I ordered my dinner and Colin went home.  I continued working on the golf stuff and actually just stopped sending stuff out around 10:30.  

I'm waiting on the iv team because there's no blood return on my picc line.  Hopefully they come soon and we can get the medicine in my lines to open them up.   It takes about 2 hours.  On another note, I'm feeling a little better today.   Everything aches and is sore but it's getting a little better.

Hopefully tomorrow will be a better day.  I will talk to you tomorrow.   Have a good night. 

Friday June 10

I hardly slept at all.  I still feel like I have the flu.  My labs were good and I only needed a couple of replacements.  

My day was uneventful.  I had breakfast.   We went for a walk.  I worked on the golf outing stuff and emailed a bunch of people for donations and sponsorships.  

I was craving Chinese so Colin ran out and grabbed Chinese for us for lunch.   It was actually pretty good.  We had lunch, went outside and sat for a little bit and emailed some people.   

We went back to my room.  Colin took a cat nap and I continued working on the golf stuff.  Colin left around 5.  I heated up my leftover Chinese and finished it for my dinner.  I took a walk and settled in for the night.  They had me on the 12th floor because when I was admitted they didn't have any beds on the 11th floor.   There is definitely a huge difference in the nursing care between the two floors.  They were giving me my meds super late and all through the night so I didn't sleep at all.

Should be interesting.....ugh!!!

Thursday June 9

Well....still feeling like crap today.   They did all my labs early this morning and then took me for a ct scan. Everything was good on the labs and the ct scan was the best one I had yet according to the doctor.  

Basically what is happening is that I have the Barr Epstein virus.  My body is fighting the virus but they have to keep a good balance so it doesn't start fighting my intestine.  They have me on some pretty strong antibiotics and are going to keep me until at least Monday for observation just to be sure.  They are going to do another scope on Monday too and depending on how that looks I'll be able to go home.

I'm just going to spend the evening chilling out and hopefully I can get comfortable enough to get some sleep.  I will update tomorrow.   Have a good night.

Wednesday June 8

Woke up early and went in to clinic.   Had my bloodwork and labs done.   Ate some cereal for breakfast and a banana.  Everything on my bloodwork was good except low magnesium.   They gave me a bag of iv mag for a replacement.

The doctors made their rounds and said everything looked good and when the meds were done we could go home.   We got out of there around 10:30.  We made plans to go to lunch with our friends Matt and Pete.   We headed to their apartment which is about a half hour away.  We hung out in the apartment for a little bit to catch up.   They took us to a local restaurant for lunch.  It was really good.  We had discussed going to a movie but as we sat there I was starting to not feel well.  We left the restaurant and Colin and I headed home.  As we were driving I started to feel worse.  We had the heat on in the car but I was freezing and shivering.

We got home and I put on my pjs and got comfy.  I took my afternoon meds and laid on the couch.  Colin took my blood pressure and it was high.   I got out the thermometer and took my temp.   It was 101.5.  We waited about a half hour and did my blood pressure again and took my temp and both were still high so we called the transplant coordinator.   She checked with the doctor and told us to take Tylenol and call back in an hour with an update.   Colin gave me a cool wash cloth and we waited for an hour.   My temp had gone up to 102.1.   We called back and were told they were going to direct admit me.   She said they would call us to come in when a bed was ready.   We waited about two hours and they called to tell us to head to the hospital.  

We were taken to a room right away and the doctors had orders in the system for more bloodwork.   The fellow stopped in the room and told us they were going to do tests in the am and were just going to monitor me for the night.   We were all settled in the room and hooked up to all my meds by 8:30.   Colin stayed til about 9:30 and went home.   The nurse was in and out of my room until about 11 giving me meds and changing the iv's etc.  I slept off and on.  I was really uncomfortable.   I have a horrible headache, my whole body aches and I'm having a lot of abdominal pain.  It feels like I've been hit by a truck.  I'm just uncomfortable all around.  

I had some tests this am so I will post more after I know what's going on.  

Tuesday June 7

Was up early because my scope was at 7.  They came and got me around 7 to do the procedure.  There was a different Doctor that I haven't had in a while.  He was fairly gentle and pretty quick.   Don't get me wrong....these are not the most pleasant thing to get done.   I was happy when it was over.

When it was done, Carlito took me back to my room so I didn't have to wait on transport.  Once we got back to the room I was exhausted.  I laid down and chilled out while I waited on the doctors to make their rounds.  I held off on eating after the scope because I was in a lot of pain.  Around 11:30 we walked to the cafeteria and I got some sort of pasta.  We took it back to the room and I ate.

The docs made their rounds and said the scope looked good and that the bloodwork was good as well.  They gave me a bag of fluids because I was feeling dry and my stomach was too upset to drink too much.  

They also gave me my afternoon meds and said to hold off on the prograf for the day because my levels were high which could be causing my headaches.   They gave me iv Tylenol to see if it would help.  I took all the meds and laid back down again.  I slept a little off and on.   Dr. Cruz stopped in and told us that we could be discharged for the day when the iv meds were done and that he would just have to go to clinic tomorrow for more labs and go from there.   

We were discharged in about an hour.  On our way home I decided I needed a hair cut.  My hair has been falling out like crazy so I wanted to chop off the dead and hopefully it will start to come back.  I got it cut really short.  I'll post pics tomorrow.  I think it makes my face look fatter than it already does.   These steroids really wreak havoc on a body.  

After my haircut we came home and I chilled out on the couch for a couple of hours.  We had a gift card for uno so we decided to run out to grab dinner.   Before that we stopped at ulta so I could get my eyebrows done.  They did an awesome job!!  They have a full service salon which I didn't realize at all.  I think I'll go there from now on.  After pampering we went to Uno. Colin had a salad and I got pasta and chicken.  It was pretty good.  We headed home after.  I did all my evening meds and laid down until it was time for my night meds.  I hopped in the shower to get all the hair off me, finished all my meds and went to bed.  I'm watching chopped right now and hoping I can fall asleep.  We have to get up bright and early again tomorrow so have a good night.  I'll post more tomorrow.  Sweet dreams!

Monday June 6

Woke up early and went to clinic.  Had my labs done and waited for them to come back.  I took a small nap while waiting.  They still hadn't gotten my medicine approved so they admitted me.  It was a good thing.   They started the medicine around 2 and I started having reactions within an hour of them starting it.

 

I was really weak, had a horrible headache, got a rash. My throat felt like it was closing.!!otnwas pretty scary.   They gave me more Benadryl and after about a half hour it kicked in.  It wore off about 3 hours later and started all over again.  Needless to say it made for an extemly long afternoon.  I stayed in bed the majority of the afternoon/evening.   I took two short walks a nd stayed in bed.

The med was finally done around 9:30.  They gave me some more Benadryl and some pain meds. No was able to fall asleep but was up early for my scope this morning.  I'll let you know how I make out.  Have a good day!

Sunday June 5

Woke up, showered and got dressed.   Went to IHOP for breakfast.   After breakfast we went back to the apartment and Mom and Dad got packed up and headed home.

Colin got home around 10.   We both layed on the couch and took a little nap.   We ate lunch and then watched a movie.   

Around 4 we decided to go to dinner.   We went to PF Changs because I got a gift card from Amber for my birthday.   It was pretty good.   I know a lot of people swear by it and travel from all over to go there but I can take it or leave it.   Colin got Mongolian beef and I got some sort of chicken.   We shared and had a little bit of each other's.   

We went back to the apartment and I had a small slice of my cake with milk.   We chilled out until it was time to take my medicine and then I put on my pjs and went to bed.   I got up four times through the night to go to the bathroom.  I was pretty restless and had a headache.  We had to get up early this morning for clinic.  We are waiting to get the med I need approved so wish me luck.  Hopefully everything works out.  I will post later to let you know how we make out.   Have a good day!!!

Saturday June 4

Woke up early to head in to clinic.  I slept ok last night.  I was having pain so I was up and down a lot.  

Mom took me in to clinic.   We stopped at Panera on the way in and I got a hot chocolate and a bagel.  We got in to clinic and they did my bloodwork right away. I fell asleep for a little bit.  We were the only ones there with one other patient so it was pretty quiet.  

The nurses checked on my bloodwork and said everything looked ok but we had to wait on the doctors to make their rounds.   It's Saturday so unfortunately they take their time.   The doctors showed up around 10.   We waited from 6:30 to 10.   But when they got there it was pretty good news.   They said that all my bloodwork was good.  I didn't need any supplements.   They want me to increase my prograf again because it was a little low but that's all the changes.  He even said I could have a break tomorrow and don't need to go in.  

I have to go back on Monday.   They told me it's probably going to be a long day.   There's a medication they need to give me but they are still trying to get insurance approval.   The medication is $12,000 for one dose and it's something that I need.  It's a potent medication that has a lot of side effects so there's a chance I could be admitted back in the hospital for monitoring.  So Monday could be a pretty interesting day.   We will see!!   Hopefully everything works out.  I'm sure it will.   Mom and I left the hospital and headed back to the apartment.  Mike and Linda met us at the apartment and hung out for a little bit.   They spent the morning at the Strip District shopping and then they went to the casino for a little bit.

They took us to lunch.   We went to Rock Bottom which is a local brewery so Mike could try out some of their microbrews.  I had a small chicken quesadilla for lunch.  It was pretty good.   Their food is ok there.  Nothing really stands out too much.   They serve such a variety and their menu is huge.   You can get anything from Mexican to burgers, Italian, club sandwiches and seafood.  We sat there and hung out for a while.   It was nice catching up and listening to their stories from when they were younger.

After lunch we came back to the apartment and had cake for dessert.   The delicious cake from Oakmont Bakery that Jimmy and his wife Sarah got me for my birthday.  Mike and Linda stayed a couple of hours and left around 2:30.   It was so nice of them to travel so far just to visit me.   It made me feel really good and special.

After they left we rented a movie.   We rented Joy.  It was a pretty good movie about a struggling young woman with a crazy family.  I would recommend watching it.  I don't know if it's something I would watch again but it wasn't bad.

After the movie I heated up some leftover pasta from Cheesecake Factory for dinner and had half an orange. I am exhausted from the day so I'm just going to chill out the rest of the evening until it's bedtime and then I'm going to put on my pjs and hopefully get some sleep.  My pain is a little better today so I'm hoping it doesn't act up before I go to bed or while I'm sleeping.  

All in all I've had a great weekend so far!!  I'm exhausted but I had a lot of fun!!  Tomorrow is a new day and I can sleep in!!!  I'm looking toward to it!   Have a good night tonight!   Sweet dreams!!! 

Friday June 3

Woke up early to head to clinic.   Had a pretty decent night sleep.  Colin slept in bed with me so I think it helped a lot.  We got ready and headed to the hospital. We took donuts and pastries to the nurses and got Dr. Cruz his favorite coffee cake. 

The amazing nurses at 7 west decorated my room for my birthday, came in and sang happy birthday, gave me a card and a gift card.   It was wonderful!!   I am blessed to have such a great team of caregivers!   I love you guys!!!  

After that, I got home and Mom and Dad were at the apartment.  They decorated it with balloons and banners and brought me my favorite cupcakes!   Thank you Dianne Halfpenny and Chuck Halfpenny!!   I love you guys!!!  You made my birthday extra special!!  

 

 

 

I had another special birthday present.  My cousin Mike Garman and his beautiful wife Linda Garman came from Ohio to Pittsburgh to visit for my birthday and we went to Cheesecake Factory for dinner.  It was an awesome birthday.   Thank you Mike and Linda for making the trip and for the birthday gifts.  It means more to me than you know.

 

 

I had one more special birthday surprise!!!  A cake from Oakmont Bakery.   The best, most amazing cake ever!!!   Thank you James Cataldi and Sarah Cataldi!   The birthday cake was the first piece of cake I've been able to eat on my birthday in two years!!!   It was amazing!!!

 

I had a wonderful birthday!!  Thank you everyone for the gifts, birthday wishes and the outpouring of love and birthday wishes!!!   

Thank you Colin for being there for me through my appointment and for always being my rock.   This year has been difficult on both of us and I know I am not the easiest person to handle but you somehow manage

To put up with me and are always supportive no matter how nasty I am.  I love you!  On my birthday and every day!   You lean the world to me.

Thursday June 2

Woke up early and went in to clinic.  I did not sleep at all the night before.   I fell asleep around 8:30 and was up at 11pm.   I wasn't able to fall back asleep after.   Needless to say it made for a long, exhausting day.

I had my bloodwork done and was low on some replacements so they hooked me up to some iv's for a couple of hours which sucked.   We were at clinic until about 3pm.

After clinic we stopped at the bakery and bought donuts to take to the nurses today.   Then we ran to the grocery store for some things since the fridge was empty.   We are leftovers for dinner, hung out and watched tv and then went to bed.  It was a long day but we made it through and I slept in my own bed!!!   I'm off to clinic again this morning for a scope and biopsy!!!   Lucky me!!!   I'll post more later.   Have a good day

Thursday June 2

Woke up early and went in to clinic.  I did not sleep at all the night before.   I fell asleep around 8:30 and was up at 11pm.   I wasn't able to fall back asleep after.   Needless to say it made for a long, exhausting day.

I had my bloodwork done and was low on some replacements so they hooked me up to some iv's for a couple of hours which sucked.   We were at clinic until about 3pm.

After clinic we stopped at the bakery and bought donuts to take to the nurses today.   Then we ran to the grocery store for some things since the fridge was empty.   We are leftovers for dinner, hung out and watched tv and then went to bed.  It was a long day but we made it through and I slept in my own bed!!!   I'm off to clinic again this morning for a scope and biopsy!!!   Lucky me!!!   I'll post more later.   Have a good day!

Wednesday June 1

I can't believe it's June already!!!

I had a pretty decent night.   We were able to keep the dilaudid in my system orally and were pretty consistent with it so the pain stayed at bay pretty well. I only needed the iv dilaudid once through the night.

When I woke up, I ordered breakfast.  While I was waiting for breakfast I took a shower.   I had half an omelette, home fries and a banana for breakfast.  After breakfast Colin and I went for a walk and waited for the doctors to make their rounds.   They came around and said that everything on my labs for the morning looked good.   There were a couple of electrolytes that needed replaced so they ordered them via iv.  They still didn't have the biopsy results back yet but said that they would let us know as soon as they did.

Bill came in to my room around 11:30 and said that the biopsy was good and that once I was done with the antibiotics and the anti-rejection meds (which take 3-4 hours) we could go home!!!   Colin packed up a bunch of stuff and ran home for a couple of hours while we were waiting on my iv so he wouldn't have to worry about helping me into the house and carrying all of our stuff from living in the hospital for the past two weeks.  

While he was gone I ate my leftover spaghetti from the night before.  He got back to the hospital around 2:30. We waited for my meds to get done.   We were discharged around 4 and headed home!!  Boy was it nice walking in the house!   We have no food and need to go to the grocery store so we ran out and grabbed dinner quick at a place called Gran Agave.  It's a cute little Mexican restaurant in the shopping center.  I had some rice and a beef enchilada.  It was amazing.   I was given clearance to have a regular diet!!  I'm just not allowed to have hard fruits and veggies that are raw and no lettuce just yet.  I'm going to be able to eat my tomatoes though so I'm super excited!!!   I love tomatoes!!  

We got home from dinner and set all my medications aside so that I would be ready for clinic tomorrow.   We have to be there at 6am for labs which means that we have to get up at 5.  The plan is to go back Friday morning too for another biopsy.  Wish me luck tomorrow.  Hopefully everything looks good and I can go back home after my lab work!!   Have a good evening!!   Sweet dreams!!!

Tuesday May 31

Was up early and watched tv.   I had a rough night with pain but was able to sleep a little bit at least.

Colin came in and we went for a walk while we waited for my scope and endoscopy.   They took us down around 8:30.  I was done and back to my room by 10.  Everything looked good on both.   We are just waiting on the actual biopsy results to come back.  They told us they would be back in the afternoon.

We took a walk outside and sat.   The weather was gorgeous.  We went back to the room.   Colin watched a movie and I played on the computer a little bit.  I had grilled cheese and tomato soup for lunch.   I didn't want anything too heavy since I had the scope.

After lunch we went for another walk.  For dinner we ordered out and had it delivered to the hospital.  I got spaghetti (which I was craving like you wouldn't beleive) and Colin got a Greek salad.   It was pretty good.  Colin hung out because we were waiting on the biopsy results.   We still hadn't heard anything by 6:30 so he went home to clean and I messed around on Pinterest some more to keep myself busy.   The nurse kept checking for the results all evening but no luck.  I finally settled in for bed around 9:30.   I had a pretty decent night.  We should have the biopsy results back today and if everything is good we can go home!!!   Fingers crossed!!!   I will post more later!   Have a good day!

Monday May 30

Not too much to report for today.   I slept a little better.   Still having a lot of pain but they are trying to manage it the best they can.

The doctors made their rounds and I was low on a bunch of replacements so they had to hang some additional iv's to catch me up.  I was hooked up to iv's most of the day.  

At lunchtime I walked with Colin over to the other building and we went to the cafeteria.  We sat there for a little bit and went back to the room.   I ordered lunch and we hung out for a little bit.  

Colin left to go home around 4.   I ordered noodles for dinner and played on Pinterest.   I'm a recipe pinning maniac now that I can eat!   It's kind of funny.