Monday 5/18

Last night was pretty bad.  I was in so much pain and was really nauseous.  I didn't sleep at all last night.  I was tossing and turning and kept Colin awake in the process.  I finally got out of bed this morning at 8.  I talked myself into getting a shower and starting my day.  As I was getting myself unhooked from my iv and emptying out my ostomy bag, I got extremely dizzy.  I sat down on the bathroom floor so I wouldn't fall and hit my head.  I laid on the floor and propped my legs on the bathtub.  I was always told when I'm feeling like that I should get my legs above my heart.  I was in that position for a few minutes and decided to get up and try again.  I slowly got back up, feeling a little better.  I finished unhooking my iv and got myself ready to shower.

You may think showering would be a great feeling.  Well, unfortunately for me it's a task.  I have to create a waterproof cover for my port.  It can't get wet at all.  Finding something that keeps it dry without any moisture at all has been difficult.  I also have to be cautious of my ostomy bag.  It can't get too hot or full while I'm showering because it would cause the seal to break.  Showering is a chore.  It sucks.  I have to rush to get showered.  I can't just stand in the water and relax.  It's honestly stressful.

After my shower, I sat on the couch for about an hour until the home nurse came.  She got to the house around 10 this morning.  She changed the needle in my port and took my blood.  Now my bloodwork consists of taking 2 small bottles of blood and 6 small tubes.  They take a lot of blood every Monday.  After taking my blood and flushing out my port with saline to make sure the line is open for when I need to use it, my nurse took my vitals.  My temp was good 98.8.  My heartrate was surprisingly low for me at 112.  My blood pressure was extremely low - it was 80/50.  The nurse put me on the couch.  Got my fluids and everything I needed to hook up my fluids in my iv and made sure I had my phone and everything.  She told me I wasn't allowed to leave the couch until Colin gets home.  She called Dr. Harborson's office but he was on vacation today.  She asked for another doctor I had seen several times in the hospital but he wasn't in today either.  I called my nurse case manager (Mary) from Pittsburgh to see what her thoughts were and to find out what my next step should be.

Mary took all the information and  said she would talk to Dr. Cruz and get back to me.   She called back within 5 minutes and told me that I needed to go to the emergency room.  She called in and talked to the charge nurse in the emergency room and let them know that my hemoglobin have been really low and they needed to check them and give me two units of blood.  I arrived in the emergency room and was taken back to triage right away.  My blood pressure was up slightly to 101/59 but my heartrate was high again at 136.  From triage we were taken right back to a room.  The nurse hooked me up to the monitors and got the basic information.  She read over the notes from Mary which were called in.  The doctor came in to the room and said he would take my bloodwork and they would see where the hemoglobin were sitting and we would go from there.  Normal hemoglobin for a healthy adult are at a range of 12.0-16.0.  Mine last week were 7.9 which is about when they decide to do the blood transfusions.  They did my bloodwork and came back in to the room.  My hemoglobin had actually gone up a little from last week and it was at 8.6 today.  He didn't feel comfortable doing the blood transfusion since it was headed in the right direction.  I called Mary to run everything by her and she was ok with not doing the transfusion today.  I have to go tomorrow for an iron infusion which should help to raise my hemoglobin but it keeps me from having to get someone else's blood.  It was not my favorite thing to do.  It was pretty creepy.

They gave me fluids in the ER and some nausea meds and sent me home.  Here's how lovely I looked this afternoon :)

I'm still having issues with being dizzy and lightheaded when I stand up.  I'm home now...laying on my couch.  Today was a bit emotional for me.  I feel like I'm in the hospital weekly.  It's hard and exhausting.  Emotionally and physically.  I could sit here and feel sorry for myself but it's not going to get me anywhere.  I'm tired of being strong.  There are days where I want to give up and throw in the towel, but I can't do that to my family, my husband and my friends.

Stepping back a little bit.  In my conversation with Mary today, she informed me that the doctors in Pittsburgh will be meeting on Thursday to discuss my case and decide when/if they are going to list me right away or not.  She said she would like to list me right away but they have to get approval from the insurance company before I actually placed as an active candidate on the transplant list.  I don't know how I feel about it all just yet.  I don't know if I'm ready one day and the next I just want it to be done and over with.  It's such a roller coaster.

So....no funny stories for the day.  I just don't have it in me today.  I'll pray that tomorrow is a better day and will touch base then.  Maybe I'll have a good story for you.  Until then....goodnight.