Saturday July 30

Today was a good day.  Kelly was feeling much better. I'm having pain still but have been doing my best to suck it up and deal with it.

We woke up and ate breakfast.   After breakfast we watched tv for a little bit.  I straightened up the house, did some laundry and cleaned out the fridge.  

We got dressed and went to Oakmont Bakery.  I wanted to show it to Kelly and we got a couple of things for Matt and Thomas while we were there.  It poured the whole day and it was still a long wait when we got there.  It's definitely an experience and I'm glad she got to go.  We ordered 2 mini cakes, 3 Danishes, a scone, a blueberry muffin, two dozen cookies and two special Elmo cookies and it was only $30!!!!  Ridiculous!!!

We took everything back to the apartment and put it in the fridge.  We left again and headed to ikea.  Kelly wanted to get some ideas for Thomas's bedroom.  While we were there I got new bathroom rugs because ours was washed and it shrunk.  I wasn't able to shut the bathroom door because the corners are all folded up and it gets stuck.  I put down the new rugs and they work perfectly.  I also got a couple silicone ice cube trays so I can use the sterile water to make my ice.  The other thing I got was a small trash can.  I take a lot of medication and have a lot of expenses regarding my medication.  I fill up the trash very quickly and have to dump it out either every day or every other day.  Hopefully this will.work.  We stopped at Abu

We left IKEA and stopped at Rocket Fizz on our way home.  We got some candies but Max and Gray didn't want anything.  They had an exhausting day.  I got a couple of things for Thomas to put in his stocking.  

After Rocket Fizz we ran to the store.  We went home and I made dinner.   We had spaghetti, mushrooms and meatballs with garlic bread.   After dinner we waited a little bit and then got out our desert.  We watched a movie and I came to  bed around 10.  I'm still up but hoping I'll get some sleep.   Wish me luck!   Sweet dreams?

Friday July 29

Woke up at 6 to take my first set of meds.  After that I laid back down and fell asleep.  I woke up and got my meds ready. Kelly and I got ready and headed out to breakfast.  We went to IHOP since it was close.  We hung out for a while and chatted.  Then we went home and headed to Macy's so I could look for a sports bra and some tshirts.  We ran to Walmart and I found a couple that would work except only one of them.  I grabbed a couple of groceries while we were there too.  

  We went back to the apartment, put on our pjs, laid down and took a cat nap.  Colin left everything as far as my meds were concerned, organized and ready for me to take.  I napped about an hour.  I woke up and got dressed again.  We decided to go to a movie.   We went to the 3:30 showing of Bad Mom's.   It was a good movie!   I would highly recommend it if you want a good laugh.  After the movie We went and grabbed a quick dinner at Gran Agave.  Dinner was delicious!!

  We went back to the apartment,  watched tv and got ready for bed.  I fell asleep right away and was up off/on all night.  Kelly was feeling pretty good most of the day so I was happy about that. Tomorrow is a new day.   We will see what it brings.  

Thursday July 28

Got up around 4:30.  Showered, got dressed, packed my bag for clinic and got ready.  Colin and I left around 5:30.  He stayed with me until the Drew my labs.  He went and got me breakfast and then he left to head back to Lancaster to take Max and Gray to the mountains for a guy's weekend.  

I had to wait in clinic for four hours after they drew my blood to check my heparin levels to make sure that the lovonox shots they are giving me should stay at the same dose or if they should be adjusted.  Kelly is coming to stay with me a few days while Colin is gone and was going to meet me at clinic to pick me up.  They were able to re-draw my labs at 12:30.  As they were drawing them, Kelly called to say she was outside.  I told her to park and I would be out in five minutes.   They drew my labs quickly and said they would call me if I needed to change anything.  

I went out to the car and met Kelly.  We headed to the apartment to have lunch.  She wasn't feeling well and had horrible back pain.  We got back to the apartment and she was hunched over in pain.  I talked her in to going to the urgent care down the street.  They couldn't do anything for her and sent us to the ER.  We all know I'm no stranger to the ER.  We were seen by the doctor right away.  They sent her for tests. The outcome was that she either possibly passed a kidney stone or her bladder seized up and wasn't contracting properly.  She was feeling better by the time we left to head back home.  

She was hungry and we hadn't eaten dinner so we went through the drive through at Steak n a Shake and took it back to the house.  We ate and went to bed.  

Wednesday July 27

Got up and showered.  Colin showered and ran a couple of errands.  While he was gone I sat down, organized the mail and paid the bills.  

Colin came back home and noticed the apartment was really stuffy.   The thermostat said it was 85.  The air wasn't working.   I was uncomfortable temperature-wise all night but thought it was just me.  Colin went and talked to the leasing office.   They said they would send someone to look at it.  

I needed to go pick up a prescription at target so we headed over there.   Colin had a few things to grab too.  We left target and headed to Ulta.  I had them wax my eyebrows, lip and chin.  We stopped at McDonald's and grabbed a quick lunch.  We went back home.  I put on my pjs and laid down.  Colin cleaned the house and made sure heb

Tuesday July 26

I had a different nurse last night.   He was so much better than the one the night before.  He had me on an every 4 hour schedule for pain medicine to try and keep it at bay.  It helped a little.  I was just extremely bloated, distended and uncomfortable.  

Bill came in around 7 and said everything looked good on my labs and my biopsy was good as well.  He said they would be back around 9:30 to make their rounds and would go over everything with me.

When the doctors made their rounds they told me that the blood clot in my lung is tiny and that the discomfort/pain I'm having from that is from inflammation.  They want me to take it extra easy the next couple of weeks.  He said it takes about 4-6 weeks to recover from a clot.  They changed the dosage of the lovonox and said that I was free to go!!!

We left the hospital around 11.  We stopped at Cosco on the way home so Colin could get hotdogs and water for his trip to the mountains this weekend.  Then we went home.  I put my pajamas on as soon as we got home and laid down.  I ended up falling asleep for two hours.  It was a good sleep too.  Colin said he checked on me a couple of times and I didn't budge.  After my nap, I got dressed and we went to red robin and grabbed a quick dinner.  I had a cup of chili and half a chicken wrap.  It was really good.

After dinner we came back home.  I put my pjs back on and laid in bed watching tv. I fell asleep a little after 10.  It was an ok night.  I was having pain so it was hard for me to get comfortable.  It's still nice to be in my own bed!!  Hopefully tomorrow will be better.  I'm excited for Kelly to visit on Thursday.  Colin needs a break so it will be good for him to get away and I need a change of scenery too!!  

Monday July 25

Was abruptly awaken at 4:30 in the morning by my rude nurse.  He barged in, turned on all the lights and started speaking loudly.  He came in to draw my labs and woke me out of a dead sleep.

After that I couldn't go back to sleep so I just laid there and tried to go back to sleep.   Around 6:30, the transport team came and got me so that they could do my scope and biopsy.  They did the test around 7.  It was really painful because they hit a kink in the intestine again but said everything on the scope looks great.  They would have the biopsy results back on Tuesday.   I didn't do much the rest of the day because I was in so much pain.  Colin left around 4.  I ordered dinner and got myself ready for bed.  When they brought my lunch tray they brought the completely wrong meal.  All I had was plain rice.  It gave my stomach a break though.

I fell asleep around 8:30.  I was up off/on all night because I was in so much pain.  

Sunday July 24

Woke up around 4 because the nurse came in to draw my labs.  When she was done I couldn't fall back asleep.

Colin called around 6:30 to see if he should go golfing or if he should come in.  I told him to go golfing because I was going to try and fall back asleep.  Around 7, he sent me a text and said they were going to go grab breakfast and then they we're coming in to the hospital to hang out with me.  Colin wanted to be here when Dr. Cruz came in.

I ordered my breakfast and ate when it came.  I had some Frosted Flakes, blueberry yogurt and a banana.  Colin, Brynn and Rob got to the hospital a little before 9.  Dr. Cruz made his rounds around 9:30.   He was with Dr. Vyas.  They said they weren't going to do a ct scan and that my lungs are inflamed from having the blood clot previously and they don't think there's anything new to be worried about.    They want to keep me on the heparin today yet and they rescheduled my biopsy and scan for Monday instead of Tuesday.   They said they would decide from there whether or not I would go home Monday or possibly Tuesday.  

They adjusted a couple of my meds and said they would see me in the morning.  We hung out for a little longer and then Brynn and Rob decided they were going to head home.  I said my goodbyes and Colin walked with them to their car.   I felt really bad that I ended up in the hospital in the middle of their visit.   They understood, but it still sucked.  

I spent the rest of the afternoon watching Flea Market Swap or something like that on HGTV.  Colin took a nap.   I ordered lunch and ate it.  Colin had half my sandwich.   He was exhausted from the night before so he left around 2 to run a couple errands and head home.  I took a nap after he left and watched a Lifetime movie.   I'm just hanging out now watching another Lifetime movie and waiting for my dinner.  Hopefully this pain will start to subside and I can get back on track with my pain meds and start to feel better.  I hope you have a good night.  I will post tomorrow after my scan.   My biopsy will take a few days to get the results back.  

Have a good night.  

Saturday July 23

Colin and Rob got up early and went golfing.   Brynn and I laid around for a little bit and then decided to go to breakfast.  We went to IHOP.   I had strawberry pancakes, scrambled eggs and hash browns.  It was delicious.   I could hardly even eat half of it.  

I had a list of errands to run so we sat and planned out the errands.  We did a little running around but we were on a mission so it was nice because we weren't wandering around.  

After our errands we went back to the apartment and waited for the boys to get done golfing.  They got back to the apartment around noon.  We decided where we were going for lunch.   We went to Spoonwood Brewery.   It was pretty good.  I had some chili and a little bit of a pulled pork sandwich.  After lunch we stopped at Paige's and got some ice cream.  We went back to the apartment and ate the ice cream.  Then we all laid down to chill out for a little bit.  I laid in the bedroom and Brynn, Rob and Colin were in the living room watching tv.  Before I knew it Brynn and Rob were sleeping and Colin came into the bedroom to lay with me.  He ended up falling asleep.  I couldn't sleep so I just laid there in a daze.  My chest started hurting again when I would breathe in deep.   It had been bugging me a little bit all day but as the day went on it started getting worse and worse and my legs/body were getting pretty weak.  

Everyone was awake and moving around 5:30,  none of us were hungry yet so we sat and watched tv for a little bit.  Rob hopped in the shower and the rest of us got dressed and ready to go to dinner.  Once we were all ready we stopped at Dick's so the guys could get golf balls to go golfing in the morning.  After Dick's we drove around the shopping center to figure out where we wanted to eat. 

We let Rob pick.  We ended up going to Bar Louie.  Colin and I had never been there so it was a new experience for all of us.  As we sat there, the pain in my chest was worsening.   Colin started to get worried so after we ordered dinner he called the on call nurse.  Mary called back and asked me a few questions about what I was experiencing.   She said she was going to call Dr. Cruz and call me back.   She called back a few minutes later and said to go to the ER.  I finished my dinner and had Colin stop at the house so I could change into something comfortable.  I put on pajamas, said goodbye to Brynn and Rob and we headed to the hospital.   They took us back right away because Mary called and told them we were coming.   They did an X-ray and decided to hold off on a ct scan because I have had so many.  They gave me pain medicine and said that my transplant doctors were called and someone would be down to see me.   About a half hour later Dr. Vyes came to my room and said they were going to give me fluids and put me on a heparin drip to treat me for a blood clot.  He said they were keeping me at least overnight for observation.  Colin left around midnight and I was moved to a room on the 10th floor by 12:30. I was exhausted so once they got me settled in my bed and gave me my meds I fell asleep.

Friday July 22

Woke up at 5 to get ready to go to clinic.   Got out of bed, took my meds and got dressed.   We left around 5:30 and headed to the hospital.  They drew my labs almost right away when we got there and sent them off to be processed.

I laid in bed with my eyes closed to try and get some rest and Colin watched a movie.  The docs made their rounds unusually early.  They were going over my labs with me around 8:15.  They said everything looked good.  I didn't need any supplements and my blood levels were good.  They were just waiting on my prograf level to come back and it doesn't come back until the afternoon.  They went over all my meds and told me that they would call later with my prograf levels and that we were free to go!!!

That's the first time that we ever got done in clinic that early.  They did my vitals, went over my discharge paperwork and said that we were free to go.  We were home by 9:30.   I went straight to my room, put on my pajamas and laid down.  I was feeling really exhausted from not sleeping.  I think it's starting to take a toll on my body.  

While I was laying down Colin cleaned the house.   He scrubbed the bathroom and kitchen with bleach.  He did loads and loads of laundry.  He basically cleaned everything in sight.  He couldn't vacuum though because I was in the house.   Around 11:30, I got out of bed and Colin set me up outside with my coloring book and pencils to occupy me so that he could vacuum.  I sat outside for about 20 minutes and colored while he vacuumed the house.  He came and got me when he was done.

I went inside and heated up some leftover casserole for lunch.  I ate my lunch and went back into the bedroom and laid down to watch tv.  I decided to make it a lazy day so that I could catch up and hopefully have some energy for company on Saturday.  I watched Flip or Flop and Love it or List it and finally got the motivation to get out of bed around 5.  I heated up more leftover casserole for dinner.  I ate dinner and hung out on the couch for a little bit.  I made some tea around 8 and went back into the bedroom to lay down. Colin brought in my meds and took my blood pressure.  

Brynn and Rob got to the house around 9.  I got out of bed and greeted them.   They brought all of their stuff in and got settled.   They hadn't eaten dinner so Colin took them out to grab something to eat.  I said goodnight and went in to bed.  They left and went to eat.  I was still awake when they got home but they all got ready for bed and laid down.   Colin came in to bed and we watched tv and fell asleep.

Thursday July 21

Did not sleep at all last night.   Woke up, took my 6am meds and ate some cereal.  Laid down in bed for a little bit longer.  

Got out of bed around 7:30.  Got showered and dressed.  Sat down and attempted to organize the mail and pay some bills.  I worked on that for about an hour.  

Colin got showered and dressed and we went out to run some errands.   We went to Dollar Tree (my favorite store) to get some cards and a couple odds and ends things.  Then we went to TJ Maxx to look for sundresses for me and shorts for Colin.  They didn't have anything so we ran to Marshalls.   Marshalls had a couple things on clearance so I got two sundresses there and Colin found a pair of shorts. 

We stopped at Chick Fil A for lunch.  I am not a fan of this restaurant (if that's what you want to call it).  I don't get the hype and why everyone loves it so much. I've eaten there twice and both times the food was horrible.  I feel like it is hard to mess up chicken tenders but they somehow managed to do it.  They were soggy and wet.  Disgusting!  

After lunch we went to the grocery store to pick up some odds and ends that we needed.  We got home and I was done.   I was so exhausted.  I had a couple things I wanted to do before I laid down so I mustered up the little energy I had left and baked a cake.   Then I made some pasta salad and got everything out and ready for the casserole I was making for dinner.  When I was done, I took my 2:00 meds and went in to the bedroom to lay down.  I was so exhausted I fell asleep right away.   Before I knew it, it was 4:30 and I was up.  I didn't budge in that 2.5 hours of sleep.  That's really unusual for me.  Colin said he even checked on me a couple of times and I didn't stir at all.   Usually I hear the door or his footsteps and wake up.  It was definitely a much needed nap. 

I got out of bed and mixed the casserole together.   We had chicken, broccoli and rice casserole.   It was really good.   Now I'm laying on the couch watching a movie.   Hail Caesar.   So far I'm not too interested in the movie.  It's a little slow.  I'll be going to bed soon.  We have to be to clinic at 6 tomorrow so I'm hoping I'll fall asleep early and be able to get some more rest before our company comes this weekend.

Well....have a good night!!   Sweet dreams!!!  

Wednesday July 20

Woke up and waited for the docs to make their rounds.  They said everything looked good on my bloodwork but my hemoglobin was low so before I could go home they gave me a unit of blood.   We waited for about 4 hours, got the bloodwork and chilled out watching tv while it went in.  

We left the hospital, went home and changed.   Then we ran to Cosco to grab a couple of things.   After Cosco we stopped at Steak N Shake and grabbed a quick easy dinner.   We came home, did my meds and I laid down.   I went in to bed around 8.  I was up all night and did not sleep at all.  I was so exhausted this morning when I woke up.   I'll post more later.   Have a good day.

Tuesday July 19

Was up bright and early 4:30ish because the nurse had to draw labs.  I couldn't go back to sleep after that.   Colin came in around 6.  We got a call around 7 that we were going downstairs for a scope.

They took us down to 7 West right at 7:00 and prepped me for the scope.  The doctors came down and watched the procedure.   They did not do the biopsy because of the risk of bleeding but everything with the scope looked good and they were really pleased with their findings.  I was happy too because the doctor who did it was extremely gentle and didn't put in much air so I wasn't as uncomfortable as I usually am afterwards.  As soon as he was done with the scope they took me back to my room.  

Colin double checked with the nurses on the 11th floor and they were getting a room cleaned for me.   Colin got me breakfast and we watched tv.  The room still wasn't done at lunchtime so I ordered lunch and ate and we waited some more.  I even slid a little cat nap in there and got about a half hour of sleep.  The docs came in and told me I needed more blood.  I had to sign another consent and they gave me another liter of blood.  It took about two hours to get in.  After the blood was in, Colin and I went for a walk.   We went to see if my bed was ready yet.   It was so they let us move out stuff down to the 11th floor.   We moved our stuff and then went for a walk outside to get out a little bit.  We didn't stay out too long because it was really hot but it was nice to get some fresh air.

After that we went back to my new room and I ordered dinner.   Colin went home to clean and vacuum because we are hoping I'll be going home tomorrow.  I ate my dinner, colored in my coloring book and talked on the phone to a new friend I just crossed paths with who had a transplant as well.   We chatted for about a half hour and I'm definitely going to keep in contact with her.   She has been through a lot of what I've been through and I think it is the start of a new relationship.  

I'm feeling a little better now but I'm heading to bed.   Hopefully I'll get some sleep tonight.  I will post more tomorrow.   Have a good night

Monday July 18

Woke up with blood all over the sheets and my shirt.   Colin had given me my lovonox shot in my right arm before I went to bed.  Apparently it started bleeding in the middle of the night and I didn't know it.  It was still bleeding when I woke up.  He came in and checked everything.  We noticed some red in my ostomy bag as well.   

I took off the bag and showered and cleaned it really well.  I put on a new bag so we could monitor it a little better.   The shower took everything out of me.  I had no energy and couldn't get dressed.   Colin had to help me.   He ended up calling the transplant coordinator who told us to go straight to the ER.  So....we packed a bag and headed to the hospital.

We got to the ER and they took us back right away.  They did labs and paged Dr. Cruz who was in surgery. They gave me medicine for the nausea and pain and cleaned up my arm where I was bleeding.  They told me that the docs would be down to see me as soon as they were done in surgery.   About an hour later Dr Cruz and Dr Vias came down to the ER to see me.  They said there is definitely blood in the ostomy but it's from the lovonox and they are going to hold off on giving it to me for a day or two until they decide what to adjust the dosage to.   They also told me my hemoglobin is low and I needed a unit of blood.   They said I was going to have to stay overnight to be monitored since I was getting the blood so they put in for me to get a room.  

I was given the blood in the ER and finally got a room about 3 hours later which isn't too bad for this hospital.   They put me on the 12th floor instead of the 11th because that's the only place where beds were available.  Dr Cruz put a note in to have me moved to the 11th floor because they are doing construction on the 12th and he doesn't want to take the risk of me getting anything else.  I ended up staying on the 12th floor overnight.  I didn't sleep well.   The nurse barged in to my room several times and wasn't very quiet about it.  It was pretty frustrating.

Sunday July 17

Got up, took my meds, ate breakfast and showered.   Shawn and Courtney got up and started packing to go home.  

Made some coffee for them and hung out for a little bit.   They got ready and left around 10.

It was really nice having them visit for the weekend.  We had a good time and it was nice to catch up.   

After they left I went in to the bedroom and laid down.  I was feeling pretty exhausted from our day Saturday.   I literally spent the entire day in bed on Sunday.  I got up to eat lunch and dinner and that was it.  Colin kept checking on me and was starting to get worried.  I was just really exhausted.  My muscles hurt.  I was having stomach pain and I was uneasy on my feet.  I took my meds for the night and went to bed.  I was up most of the night.   

Saturday July 16

Woke up early and took my medicine.  By the time I had done that, Colin left to go to the driving range. Courtney woke up and we ran to McDonald's and grabbed breakfast.

After breakfast I laid down for a little bit because I wasn't feeling well.   Colin got home and the three of them watched tv for a little bit and then Shawn and Courtney went out to run errands and check out a few places.   I woke up around 1 and Shawn and Courtney came back.  We went and grabbed a quick lunch then headed back to the apartment.   

I was on groupon earlier in the day and got us a sightseeing tour along the river.  It's departure was at 5:30 so we hung out at the house and watched tv until it was time to go.  We got there and boarded the boat.  It was a pretty cool tour.  They explained the three rivers, different bridges, memorials, inclines, stadiums etc.  it was something different to do and we had fun.  

Afterwards we walked through Station Square to find somewhere to eat.   We ended up going to Houlihans.  I got meatloaf and mashed potatoes.  It was delicious!  Everyone enjoyed their food.  

After dinner we stopped and got ice cream on our way home.  We got home around 9.  I put on my pjs, took my meds and went to bed.  It was a pretty exhausting day even though it might not seem like much to a "normal" person, it really took a toll on me.  Today is going to be a day of relaxing.  I'm looking forward to it!  I might try to catch a nap in there somewhere.  I hope you have a good day.  I will post more later!

Friday July 15

Woke up feeling awful.  My head was fuzzy, I couldn't focus, I was shaky, I was having a hard time breathing.   So....I stayed in my pajamas and stayed in bed the majority of the day.  I didn't get up and motivated until after 2.  

I got out of bed, showered, changed and tried to motivate myself.  We were going to have chicken for dinner but it still wasn't thawed so we decided to go to eat-n park.  We walked down from the house to see if I could tire myself out enough to hopefully get some sleep.   We got home and I was exhausted.  I laid on the couch and watched tv.  Shawn and Courtney were coming to visit so I waited up for them.   They got to the apartment around 10.  I hung out with them for about an hour and went to bed.  I didn't have much luck in the sleep department last night either.  Hopefully today/tonight will be better.  We will see.  I hope you have a good day.  I will post more later.

Thursday July 14

Got my bloodwork done early.  The docs made their rounds before 7.   They said I needed calcium replacements but other than that everything looks good and I can go home.  

The calcium took until about 1.  Then we had to wait on discharge instructions.  We were there until about 3.  We headed home but stopped at the grocery store because we didn't have any food.  We headed home after the store and started dinner.  We had hamburgers, rice, vegetables and baked beans.  It was a pretty good dinner and it was quick and easy on the foreman.  After dinner, we watched tv, I took my meds and headed in to bed.  It was an ok night.  I was up off and on all night because I was in pain and couldn't get comfortable.  

Wednesday July 13

Today was a little better.  I actually got some sleep last night.  I slept for about 5 hours straight.  I was feeling pretty well rested this morning when I woke up.

I had Raisin Bran, fruit and yogurt for breakfast.  I also had a Starbucks hot chocolate.  After breakfast I took all my meds.   The doctors made their rounds.  They still didn't have the biopsy results back yet.  They said as long as they are good I can probably go home tomorrow.  They said they would let us know when the results are back.  

I got hooked up to some meds via iv.   I just watched tv while they were running.   They scheduled a med that I haven't had in a while that takes some time to do and they have to pre-medicate me and do my vitals every half hour while it's running.   They started it around 10.  I can't leave the floor while it's running so I was pretty much bed-ridden for 4 hours.   I heated up and ate my lunch around 12:30.  I just had leftover Stromboli from last night's dinner.  

I started to not feel well from the medicine they had me on.  I felt like I had a fever and had chills, sweats and aches.  They gave me Benadryl to see if it would help.  It helped a little but I still wasn't feeling well.  I just couldn't get comfortable.  I couldn't even nap.  

Bill came in around 2:30 with the biopsy results.  Everything looks good.  There is nothing to worry about.  He said I can go home tomorrow.  He went over the med changes and said he would be by in the morning to get all my discharge paperwork and everything together.   

After he came in, Colin went home.   He had some errands to run and wanted to vacuum and clean up the house again.  

While he was gone I read my magazines that came in the mail and I took a small walk to the cafeteria.   I ordered my dinner - I had noodles with butter and a small blueberry yogurt.  Nothing special.  I wanted to eat light for dinner since I had such a heavy lunch.  

After dinner I laid down and watched tv.   I still wasn't feeling any better but I needed to try and get my mind off it.  The nurse brought all my meds in around 8:30.  She also gave me another dose of Benadryl.  It helped a little.   Now I'm laying here exhausted but unable to fall asleep.  Hopefully I will fall asleep and get some rest.  I guess we will see.  I will let you know tomorrow.   Have a good night.

Tuesday July 12

Woke up early on an empty stomach because I have a scope and biopsy.  They came and got me pretty early around 8:30.   They did the scope and biopsy as well as an endoscopy.  It took about an hour.   I was in recovery for about a half hour and then I was taken back to my room. 

I was really tired afterward.   My friend Matt came in to visit.   He stayed for about an hour and then took Colin to lunch to get him out of the hospital for a little bit.  While they were at lunch I went outside and sat for a little bit in the sun to get out.   I came back to the room and laid down.  Colin and Matt came back and hung out for a little bit.   Then Matt left.   After

He left I took a nap.  I fell asleep for about two hours.  I ordered a late lunch and chilled out the rest of the evening.

I ordered Stromboli for dinner and had a small piece of it.   Afterwards I went to bed.  I slept ok last night.  I got a little more sleep than previous nights.  Today is a new day.   Hopefully we get the biopsy results and we can go home tomorrow.   Keeping my fingers crossed.

Have a good day.

Monday July 11

Started my day bright and early with a procedure to have my picc line replaced.   They came and got me around 7:30am.  It took about two hours and they brought me back to my room.  I ate my breakfast and layed down for a little bit.   Around 1 they came to get me

To do the Doppler scan of my arms and legs to determine if that's where the blood clot came from.

The doctor doing the Doppler found some superficial blood clots in my right arm around my picc line but said the heparin drip should dissolve them.  That's probably where the clot in my lung came from.

They brought me back to my room after the procedure and I waited for my echo cardio gram that was scheduled for 3:30.   They came and got me about 3:15.  The echo went ok.   There is a little fluid around my heart but nothing they are too concerned with.   She said it has been there for a while so they will just keep an eye on it.   After all the testing I was completely exhausted and in excruciating pain again.  Once I got back to my room I stayed in bed and didn't move.   I had a rough night so I just went to bed.

Sunday July 10

Still in excruciating pain today.  I can't get out of bed on my own.  I even need help going to the restroom which is only about ten steps from my bed.  I am not sleeping because I'm in too much pain and can't get comfortable.  I don't feel like the doctors are listening to me.   They basically have me on bed rest until they can send me for tests tomorrow because they don't know where the blood clot came from and they don't want to take any chances.  

I am in a foul mood and don't really want to talk to anyone or explain what's going on.   It's so frustrating because everything that has been going wrong had nothing to even do with the transplant.   Everything with the transplant is great.   It's the side effects of the different meds and just freak occurances.   

Monday is going to be a day full of testing but hopefully we will get some answers.

Have a good night.

Saturday July 9

So sorry for not updating.   It has been a rough couple of days.   Saturday we found out I was having trouble breathing because I have a pulmonary embolism in my lung (blood clot).  It is what was causing all the pain when I'm breathing.  

In the meantime, the nurse was giving me iv meds and I felt something funny in my neck.   I told her right away.   They sent me for an X-ray.   They came back and told me that my picc line inverted and was no longer in my vein.   They had to call the iv team to come in and try and place it so that we could use it to get us through the weekend because the iv radiology team isn't in on the weekends and with me now needing the heparin drip for the blood clot they need the central line because the heparin is constant. 

That was my fun Saturday.   

Friday July 8

Woke up in my hospital bed.   Didn't get much sleep.  I was in a lot of pain and couldn't get comfortable enough to sleep.

The doctors came in and made their rounds.  Once again they said everything mechanically is fine.  It's probably medicine related.  I was still really unsteady on my feet.  I couldn't go to the bathroom on my own.   They are thinking about giving me b vitamins to hopefully help with the weakness and fatigue.  

I stayed in bed most of the day because I could hardly move.  I was on the 10th floor which is a med surge floor so they put in for me to get a bed on the transplant floor.   Around 7pm they moved me.  I just chilled out the rest of the evening and watched tv.   Nothing too exciting.   I was up until around 11 and finally fell asleep.  I was up off and on all night because of the pain.  Hopefully today will be a better day.  I will post more later.   Have a good day.

Thursday July 7

Colin brought my meds in at 6.  I took them and lounged in bed for a little bit.  Once I got motivated I got up and showered.   My driver's license photo was expired so Colin and I went to the DMV so I could get my picture taken.  We were in and out in about 15 minutes.  They have a pretty good system going.

We headed back home and I put my pjs back on and laid down because I wasn't feeling well.   As the day went on, the crappier i felt.  I got up and we went to uno because we had coupons.  I got a cheeseburger and Colin got ribs bc they were all you can eat and half price.  We ate and went back to the apartment.  I made some tea, took my medicine and went to bed.   

As I was laying there I started to get pressure in my chest.   The pressure started to turn into pain.  I called for Colin and told him what was going on.  He got up and dressed and took me to the ER.   We were taken straight back to a room.   They did a chest X-ray and everything looked good.  The small bowel doc came in and said they were going to do a ct scan in the morning.   They moved me to a room.   I didn't sleep well at all.   As the night went on the pain was getting worse.   The deeper I would breathe in the more it hurts.  

We waited for the docs to make their rounds.  The good news is that it's nothing mechanically wrong. They think it's a side effect to the kepra.  They are going to look into things a little more tomorrow.   I'll post more later.   Have a good night.

Wednesday July 6

Woke up bright and early and went in to clinic.  I woke up feeling pretty shaky, weak and in pain.  

On our way to clinic we stopped at dunkin donuts to feed the nurses.  I got a bagel for myself and one for Colin.  We headed in to the hospital. 

they did the standard bloodwork when we got there and we waited for the doctors to make their rounds.   They came around 9.  Everything looked good on my bloodwork.  They are just trying to figure out why I'm having the pain, fatigue, achiness, shakes and weakness.   They think it couple be medicine related from the Kepra which they put me on for the seizures.  They are going to have the renal doctor and the neurologist clear me but they didn't have time to stop and see me.  They are hoping to be able to schedule them to stop next clinic appointment.

When we were discharged from clinic we stopped at Panera for lunch.  It was terrible and it wasn't cheap either.   It was close to $30 and Colin got a bowl of soup and a half sandwich.   I got a bowl of soup and tuna salad.   The soup was cold and the sandwich was bland.   No taste to it whatsoever.

We went home and watched tv for a while.  Colin got up and made chicken for dinner.   We ate, watched tv and I went in to lay down around 7:30.  He brought my 8:00 meds in to me and I went to bed.   

Tuesday July 5

We got up bright and early.  Had to be in clinic at 6 for my scope/biopsy.  Before the biopsy they did my bloodwork.  I only needed one replacement.  The whole time I was feeling like crap.  I had a lot of abdominal pain, nausea, anxiety, lightheaded, uneasy and dizzy.  Just all around not feeling well.

Bill came in to check on me before the scope and gave me iv Ativan as well as pain meds.  The nurse got everything together and gave me the meds.  I got up to empty my bag so they wouldn't have issues while they were doing the scope.  

The doctor came in and started.  It was extremely painful.  Probably the worst one I had so far.  I cried the entire time he was doing it.  There is a kink of some sort in my intestine which makes it hard for them to get to where they need to go.  In order to get through the link they blow it up with air.  Not a comfortable feeling.   They also blast it with water to try and open it up.   After what felt like hours (even though it was only a half hour), he was able to cut out the biopsy pieces.  

Good news is....everything in the intestine looks great. We just have to wait on the biopsy results which won't be back until tomorrow.

They had to change a couple of meds around.  I'm back on iv steroids because the oral doesn't seem to be processing through my body like they should be.  We go back tomorrow for more bloodwork. And an iv med to prevent CMV.  It's a four hour infusion.  I'm going to take the laptop and work on some of the golf event stuff.  I'm going to try and make that a priority because we are running out of time.  Well....wish me luck tomorrow.  Have a good night!

Monday July 4

HAPPY FOURTH OF JULY!!!💥🔥🎉🇱🇷🇲🇾

We got up.  Had breakfast.  Colin was on his way home so Mom started packing up her stuff and loading up her car.  I had a good time with her.  It was nice to just spend time togethet her and I.  Even if we didn't run a marathon or shop all day/night.  She left around 9:30.  Colin got home at a little after 10.  He unpacked and we watched tv.  I was feeling really shaky and dizzy.  My blood pressure was really high again so that could be contributing to my symptoms.  They gave us off clinic on Monday because of the holiday so I have a scope and biopsy tomorrow.

Colin was hungry and we had a gift card so we went to Friday's for lunch/dinner.  It was raining so we didn't venture out to look for fireworks.  You could hear them but not see them. We played Boggle and watched tv.  I went in to bed around 7 because I wasn't feeling well and wanted to conserve some energy.  I hope that I'll be feeling better tomorrow!   Have a good night. I'll post more tomorrow!

Sunday July 3

Pretty uninteresting day.  Got up, took my meds.   Showered.  Mom woke up and we went to IHOP for breakfast.  I had hot chocolate and a cheesecake pancake.  It was yummy and just a perfect portion.  

After breakfast I took mom to Oakmont bakery so she could experience how amazing it is.  We got two mini pineapple upside down cakes, a small coconut cream pie because it's mom's favorite.  And we couldn't forget dad so we got a dozen cookies for mom to take home to him.  

We went back to the apartment and just hung out for the rest of the day.  I took a nap in bed and I'm pretty sure mom fell asleep on the couch for a little bit.  I was really sore most of the time there.  It was probably all the concert excitement from the night before.  

We were debating on dinner so we decided to order subs.  We actually found someone who would deliver.  We were able to stay in our pjs and watch movies that we rented.  Mom ordered a turkey sub and I had a cheesesteak sub.  We also got a fried basket with mushrooms, mozzarella sticks, chicken tenders and French fries.  The delivery driver was there in a half hour.  It was all really good.  The rolls for the subs were fresh baked at the restaurant.   They were amazing!  We will definitely order from there again.  We started another movie and then went to bed.  As the day progressed I slowly started to feel worse.  I took my meds and went to bed.  Hope you had a good night!  

Saturday July 2

Today is the day for the big concert!!!  I'm super excited.  

I took my blood pressure and it was through the roof so I took my bp meds to tried to chill and see if it would go down.  We straightened up the house and watched a movie.  I laid down for a little bit just to conserve my energy and kept an eye on my bp.  It slowly started to go down.  

I got up around 1:30 and started to get ready.  Had my face not been so puffy and fat from the steroids I may have actually looked cute 😓

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The crappy lighting in our bedroom doesn't give you a clear pic but that's my outfit in a nutshell.

We left around 2:30 to head to the concert.  The gates opened at 8.  When we bought the concert tickets we also bought a parking pass.  Well....thank goodness mom brought the transporter.  We had to walk a mile and a half to get to the stadium.  Well...I rode and mom pushed.   It was a horribly long walk.  People are rude, there were a lot of tailgaters who were completely trashed and running in to us everywhere.  After about an hour walk due to crowds etc we finally made it to Heinz Field.  We got there about 15 mins before the gates opened.  A gentleman was nice enough to put us at a separate gate for handicap persons so we didn't have to wait in line.  Once the gates opened, we found our seats.  Mom dropped the chair off at customer service which was right behind where we were sitting. We also lucked out because the restroom was right behind us as well.  

 

The concert lineup was Old Dominion (I knew a couple of their songs but not all of them), Sam Hunt - he was awesome!  He really amped up the crowd.  He put on a great show.  I would definitely go see him again.   

My absolute favorite was next....Miranda Lambert!!!!  I love her!!  She's got an amazing voice and puts on a great show.  She really engaged the crowd and sang old songs and new.  I had so much fun watching her!!!

Then of course you can't forget Kenny Chesney.   As always....awesome show.  Engages himself with the crowd really well.   Hardly stops in between songs.  He just keeps going and going.  I started to get tired after about his 5th song so we decided to head out.  We still had an hour walk back to the car.   (Well mom did anyway 😜.  I ran to the bathroom and mom went and grabbed the transporter.  After several wrong turns and asking police officers for directions we finally made it back to the car.  Needless to say it was a long evening!!!

Thank you Mom for taking me to the concert.  I had a blast and it really made my weekend.   I know it was torture for you because of how much you love country music!!   I love you for all you do!!   

Friday July 1

I'm slacking the past couple of days and I'm sorry.  I've had a pretty crappy set of days.  

Mom is here visiting and Colin went home to take care of the dogs because Cyndee is going on vacation.  Mom and I had breakfast, ran a couple of errands and went to the grocery store.  

Mom talked to Dr Cruz on Thursday at my appointment and asked if she could take me to the Kenny Chesney concert.  He said we could go as long as I didn't push myself too hard.  

After he gave approval we spent Friday getting an outfit to wear.  I was super excited !!!  We went to Marshalls and bought small purses.  They have stipulations on what kinds of bags and sizes you can take in and I had to take my meds with us so I had to be particular on what I bought.   Mom got me a really cute Michael Kors clutch and she bought one for herself too just a different color.  

Oh....let me tell you this too.  I didn't walk while we were doing the errands.  She brought a transport chair with her.  Kind of a mix between a wheelchair and a stroller.   She pushed me the whole time.   

After Marshalls we went to DSW just to see how expensive cowgirl boots were and if they had any.  They ranged in price from 69-199 a pair.  The sales lady said to check the clearance because they just moved some back there.  Boy did i score on that one.  I got the cutest cowgirl boots- brown w/teal throughout. They were gorgeous and fit perfect!!  They were originally $179.  Marked down to $79 and then there was another 25% off that.  We paid under $30.00!!!

We went in to old navy bc they were having a $2 tank top sale so mom got a few tank tops.  I bought a cute jean jacket for $15 and a cute navy and white plaid shirt to wear over my American flag tshirt so I could be patriotic.  I was super stoked and excited for my adventure.  

We went home, had dinner and chilled out until bed so that I wouldn't be too exhausted and so that I could prepare myself for a long evening.

I had a hard time sleeping because I was so excited!!!