Sunday July 12

Well....the doc came in to my room this morning.  Luckily they aren't going to put an NG tube in my nose.   They are just going to let me relax and let things settle.   I'll be here again overnight tonight.  They are trying to settle my guts down.   The vomiting has caused my stitches to seep because of all the wretching.  

I had some visitors today: Colin, mom, dad, amber and the twins. 

These two monkeys are always the best medicine :). I love them to death!

So....today we are trying to get control over the pain/nausea.   Then hopefully I can go home.   I've been running a fever all day so they are also trying to get a handle on that.  

So....time for bed.   I'll update tomorrow.

Friday

Well....got home from the ER last night.   I wasn't really feeling much better.   I woke up this morning to Colin moving stuff.   He had lots of help throughout the day.   My sister Amber and her husband Bobby, my brother Shawn, our friends Rob, Sean and Greg.   

I just stayed and laid around at the "old" house until the couch was gone.   The house is almost completely empty thanks to everyone who helped.  There's a few odds and ends things left but we should be able to grab them in like 3 boxes.  After all the moving I went with Colin to lowes.  He had to grab a couple things for the new living room.   While we were there I started to feel sick.  We got back to the house, and I started throwing up.  I couldn't stop.  Colin took me in to the ER again.  The ct scan they did show that my stomach is inflamed.  Needless to say...I was admitted.  It's close to 4am.   I haven't slept yet , I'm in a shared room and i

Friday July 10

Well....I was awakened this morning by my transplant coordinator in Pittsburgh.   The transplant doctors met yesterday and discussed my case.   It was determined that I need the transplant sooner rather than later.   What does this mean for me?   They are going to submit approval to the insurance company and once it's approved, I will be actively listed.   All that we do at that point is wait for a call that they have a match!   She said it could take a week or it could take a year.  It's just a matter of finding a match.  The donor for small bowels is always a deceased donor so you never know what is going to happen.

How do I feel about this?   I'm scared to death!!!   I have had an extremely emotional day today filled with happiness, sadness, anxiety, uneasiness, relief.  A wide array of emotions.  I sit and think back on everything that has happened.   I wonder if I'm ready for this step. If I'm strong enough to handle it.    I wonder whether or not I'm ready.  I think I was expecting them to call and tell me I have to wait longer.   I wonder if it's something I should do.  They are telling me it's my only option to a possible "normal" life.  This call took me by surprise.  I'm full of feelings I can't really explain.   I keep telling myself not to give up the fight.   I have so many people out there supporting me in so many ways.   I keep praying that God will help me through this.   I pray that he will sort out my emotions and come to a decision on what he wants for me.  Please keep me in your prayers and ask God to help me through this.   I know now why the transplant evaluation portion focuses a lot on your mental health. It's all starting to come together - a positive attitude is KEY to a transplant working and KEY to survival after.   I'm really trying to stay positive and look at all of the good in this.   At times it is extremely difficult.

So that was my morning.   Josh came over in the afternoon to help Colin move some things.   They took me to my osteomy appointment today at 2:30.   They fitted me for a special bag that of course is expensive and is also denied by most insurance companies.   So far the bag has been working today and I haven't had a leak.   That's a positive for the day.   

After my appointment Colin and Josh went to hang out and play golf.   My Mom called and said she would pick me up and bring me down to her house for a little bit until Colin got home.   At this point I was feeling extremely nauseous and having a lot of abdominal pain.  

Around 7:00 I asked my Mom to take me home.   She drove me home.   I got out of the car and started vomiting.  Not much was coming out except for foam. The spasms and pain were just getting worse.  I sent Dr. Harborson a text to see what I should do.  Colin wasn't home yet and my Mom didn't want to leave me home alone so she put me back in the car and took me back to her house.   I laid in her bed and put a cold washcloth on my head.   I started having a meltdown and was a sobbing mess.   (Probably NOT helping my case at ALL).  Mom brought Sparkles in to lay in bed with me and to try cheering me up :) 

Colin called to say he was on his way back home around 8.  He picked me up on his way home and I laid down on the couch.   Colin went upstairs and got all of my TPN supplies together to hook up my iv.  While he was hooking it up, Dr. Harborson sent a message telling us to go straight to the ER to make sure it's not an obstruction.   Once again....we grabbed a bag, and went on to the hospital.   The ER sent me back right away.   Once I was back they did bloodwork and an obstruction series of X-rays.  At this point the X-rays did not show an obstruction.   The bloodwork still hasn't come back yet but it's looking like I am severely dehydrated again.   While throwing up my guts inside are being jarred and spasming which is most likely the source of the pain.   It's now close to midnight and we are still here.   As you can see..Colin is exhausted.   

And now we wait.....

I hope to get home tonight.   I will try to update later this evening.   If not, I will do it in the morning.   So until then, sweet dreams!

6/29 12:30pm

So, (by her request) I've taken over the reigns for H while she's under knife.. I'll do my best to update and inform everyone. About 11:00 we were told the OR called for her, 45 minutes and a break in the chain of command later, she got to pre-op.We said our goodbyes and off she went. As they wheeled her away she shot me a smile and I realized once again, she has more fight in her little finger than I do in my whole body. One of the many reasons I married that girl.They told us the surgery should take anywhere from 4 to 6 hours. Now we wait...I'll do my best to update this when she gets in her room and settled. 

I also discussed with her getting a new sign off line like  "good night America" or  "Heather out" we'll work on it...

-Colin 

Thursday July 9

Lovely day.....uh.....nope

I think I have to re-evaluate this whole osteomy thing. I need a new outlook on it or something.   My lovely day started bc Dana picked me up to take me to my osteomy nurse appointment.  We took my car to be safe bc she has been having issues with her new car.  

We went to my appointment.   Were there for about an hour and a half.  I had a nice surprise.   My nurse ended up being one of my favorite nurses from LGH on the 8th floor - Michael.   He was always awesome.   He lived to joke and motivate me.   He's a great nurse so I was happy to see him.   It was a nice surprise.  He 

Left the hospital and is now working full time at the wound center where the osteomy nurses are.  While I was there they changed the type of bag I'm using and gave me some pointers on how to help it last longer, etc.  We left the appointment.  Went out to the car, got in and it wouldn't start.  Tried a couple of times and it just wouldn't turn over.  I called Colin to come and get us.  When he got there he tried to start it without any luck.   As we are trying to start it again, the seal on my bag broke.   We were going back and forth on what to do.  Since I was still in the parking lot I decided to go back inside and see if they would help me.  Colin took Dana back to the house to get her car to go back to work.

The osteomy nurse was sweet and she sat with me for another hour trying to figure out what she should do.  She gave me a pair of scrubs to wear since it leaked through my osteomy belt, both shirts I had on and my pants and underwear.  She adjusted some things.  Colin came back to get me with a change of clothes and we went to Sean's shop to give him the keys so he can tow my car.   Such a mess.  By the time we got home it was Colin's bedtime.  He went up to bed.   Within about an hour, my bag started leaking AGAIN!  I cleaned myself up and put in a new bag the best I could.  Amber came over with the twins so I would help her with her hair.   We were doing her hair and the boys were watching a movie when my bag broke AGAIN!!  Talk about frustrating!  I cleaned myself up again with Amber's help and put on another bag.  Amber left.  I called the osteomy place and left a message for them letting them know what happened.  

I'm now in bed.  Hoping and praying this stupid thing lets me sleep through the night.   I guess we shall see.   Goodnight!  Sweet Dreams!!!

Wednesday July 8

I'm getting a new nurse today!!!!!!!!   So exciting!!!!  Hopefully this one will be much better than my last one.   Ugh!

More exciting news - my liver functions are doing better.   They got the biopsy results back and the transplant doctors are going to meet tomorrow and review my case again for the official listing.   Good news is that as long as I stay where I'm at health wise I shouldn't need a liver transplant as well.   We can probably get away with only the small bowel.   What does that mean?  It means that I may not have to wait as long for a match.   The list for small bowel transplants is fairly small compared to the list for a heart, kidney, liver, etc.

And EVEN MORE exciting news!!!!   My friend Herb McNally who I met over ten years ago at Clipper Magazine has been helping Colin with the Golf Scramble in August.   He is at the U.S. Women's Open today in Lancaster.  He has been telling everyone my story!   He was able to get a flag signed by Michelle Wie, Morgan Pressler, Suzann Petersen, Anna Nordqvist, Britney Lincicomb, Yani Tseng, Lydia Ko, Natalie Gulbis and Inbee Park.  They are auctioning off the signed flag online.   He has been so unbelievably selfless and a blessing when it comes to the golf outing and I can't thank him enough!  He just called a few minutes ago to let me know that he has a radio interview in a few minutes with a golf radio station out of Chicago.   He's going to share my story!!!

You know.....originally I wanted to keep this all to myself and didn't really want things getting out there but I'm glad that I've gone public.   The support of my husband, family and friends has been astronomical but the outpouring of support from complete strangers has been overwhelming!    Thank you to everyone for your love, support and prayers.  You are all amazing people and I don't know what I would do without you!   I hope that one day my story will help someone else who is going through this hell.  

So, today has been a good day so far.  I have Amber coming over after work to help me organize clothes and take some over to Cyndee's.  The move had been put on hold because of my latest surgery/hospitalization.  Then later this evening Greg and Kelsey are coming to visit.   Today has been one of the best days I've had in a while!!! 

DON'T FORGET!!!

I wanted to put a quick note out there.    Don't forget about the benefit gala being held in my honor by my amazing, beautiful, loving friends!!!    It's July 25 @ 7pm.  It's going to be a huge party and I'm going to be there as long as my body cooperates!!   I'd love to see you all there!!!!

Tickets are available on my website www.help4heather.org and they are only $30/person!   A night out that cheap is impossible to come by!   Check your calendars and reserve your place today!   It's filling up pretty quickly!   Hope to see you all there!!!