Hair...Who cares?

Most of you know by now that I am losing my hair due to one of my anti-rejection medications.....Prograf. At this point it doesn't show signs of stopping so it will probably get worse before it gets better. Some people probably think I'm being dramatic, but I've lost over half of the hair on my head already. Some say it will last 3 months, some say 6 months, and some say it will go back to normal after a year.

I'm not going to lie. I've struggled with this. To me it has been harder than my transplant. Maybe it's because I was so sick and wasn't really aware of what was going on around the time of my transplant. On the outside, I've remained strong, even making jokes about it, but as soon as Adam gets home, I fall apart to him. It's been hard. I just got engaged. I don't want to get married bald or with someone else's hair, but Adam has been my rock. He has given me a lot of comfort and strength since this started happening.

The first two and a half months, my recovery was going great. People continued to comment on how great I looked and how they couldn't believe how well I was doing only a couple of months post transplant. That felt really good.

Now I feel like I've stalled. I feel great, but I feel like I don't look great anymore and that's really affected my self esteem. I know that my new circumstances make me "different" from the average person, but I don't want to look different or sick when I'm not. I want to continue getting those words of encouragement from people.

I feel so selfish complaining about something that will eventually stop and be back to normal. I often think to myself there are some people that would LOVE to see the light at the end of the tunnel. There are some people who would love to be alive without hair. These thoughts quickly bring me back down to Earth.

Most people don't know what to say because they haven't been through it, so they say "You are beautiful with or without hair." The words mean a lot, but it still doesn't take away that losing your hair is very traumatic. Hair is a part of being girly and being a woman. Look all around you, women take care of their hair more than any other part of their body. That's why it's been so hard. For now I'm going to rock hats and scarves. I'm thinking about getting a wig, but I'm not totally sold on that idea yet.

I have decided today that I'm going to embrace my hair loss and not shed one more tear about it. This is either just one more test from God or a part of the test I already thought I completed. I'm going to ace this test and continue to thrive in my life. I will continue to thank God every single day for my health. I am alive and that's all that matters. One day this will be just a little blip on the radar and I will look back and hopefully think how silly it was for me to get so upset about something so vain.

The next time you start to get upset about something, please try to remember that someone always has it worse and would love to have what you have. Please remember to thank God daily for your blessings. He will never forsake his children.

XOXO

God Bless

My Dugan Family

Going back to work Tuesday was an exciting day for me. I was excited to be back into a routine, with my friends, and my students. The part I will NEVER enjoy though is waking up at 5:00 am. That's a big difference when you've been waking up at 9 or 10 for the past 2 months. I can't say longer than 2 months because you don't sleep at all in the hospital. Ugh.

My first day back, I decided I was going to get to school at 6:30 and try to figure out everything....the schedule, what they were doing, where all my stuff was...etc...I was the first one to arrive at school at 6:27 besides our custodian Mr. Emit. I asked him if he would go get my big comfy chair out of Adam's truck and he did. He also put it together for me. Bless him!!! This whole time, I never paid attention to the shirt he was wearing.

About 15 minutes later, Jessie came in with a gift basket from the school. In it were snacks, $100 Visa card, a Cracker Barrell card, and a Chik Fil A card. That was just so thoughtful!! I noticed her shirt said "Wishing Wilson Well." It was green...my favorite color. It still didn't register to me that I had seen Emit wearing the same shirt. One by one, my coworkers were coming into my classroom and giving me hugs. They ALL had on this same shirt. It was so heartwarming!! I'm not usually one to want to be the center of attention, but this was probably the nicest thing anyone has ever done for me.

That day, I had students bring in gifts, flowers, and welcome back cupcakes. Everyone was so welcoming!! By the time I got to the end of the day, the announcements came on and our principal called a staff meeting. I was SO oblivious of what was about to happen I kind of thought to myself "Really??? I just want to go home." I was so exhausted because I went from laying in bed all day to working 8 hours with a 2 hour commute.

Our school accountant, Penny had me holed up outside the library talking to me about this girl who was an awesome sub if I ever need one. I still didn't realize what was going on. I walked into the library and it was obvious I was the last one in there. It was a sea of green shirts and everyone clapped for me. I jokingly turned back around and started walking towards the door. Again, I get embarrassed when I am the center of attention.

I noticed 2 of my close school friends Lindsay and Jessie were standing up. Lindsay said: "First of all, thank you for your donations." I followed up with "Yeah thank you!" because I assumed they were talking about donations that were given to me back in the Summer. Lindsay said some more things and walked over with tears in her eyes and handed me an envelope. Jessie followed and hugged me as well. My Dugan family had made another substantial contribution to me. 

I addressed the staff with tears in my eyes and said "I didn't prepare a speech...(haha) but I told them that we are a family and that I had told my mom I don't think any other school (if I worked somewhere else) would have done as much as they have for me." I thanked them from the bottom of my heart. It was short and sweet because I was a hot mess and was embarrassed.

God continues to provide for me. This goes back way further than my transplant. God provided me with the perfect school to work at. He knew I would need their support later on. Words can not express how grateful I am to each and everyone of my coworkers. They are some of the sweetest people I've ever had the pleasure of working with in a school. There's not the typical

cliques or groups that you usually see in a school. Everyone just genuinely loves everyone. I am so grateful to be apart of my Dugan Family.

XOXO

God Bless

Hi ho Hi ho It's back to work I go.....

Well, tomorrow is the day I've longed for! Time to go back to work!!! (My 3 month liverversary is Friday!) Now that it's here, I must admit I'm a little apprehensive. I've been mentally ready to go back for a while, and I thought by now I'd be physically ready because I made such a remarkable recovery. One thing that hasn't been so remarkable is the side effects from my surgery and medicines I have to take for the rest of my life. I always follow up a complaint with how blessed I am to even be here. I hate complaining, especially when I almost wasn't even here to complain at all, but sometimes a girl just HAS to vent! :)

My back STILL hurts after about an hour on my feet. It scares me, because if it hurts after only an hour, I can't imagine what 8 hours is going to be like. With my birthday money I bought the most comfortable chair. It's called the Serta Big and Tall....the only way I can describe it is like a chair that feels like a bed. I'll call it my chair-bed. It is SO comfortable!!! Needless to say, I might be doing a lot of teaching in my big comfy chair. The doctor told me they would write me an excuse for sitting, but I hardly doubt anyone will give me a hard time. I have a wonderful support group at  work.

I've also been upset at my stomach a lot because of one of my anti rejection medications. Luckily, they changed it to something else today that is supposed to be gentle on the stomach. I won't get that by mail order for a few days so I'll pray I don't have to rush to he bathroom to throw up in the next couple of days. 

Another huge side effect I've had is my hair falling out. Today the doctor lowered my other anti rejection medication that causes this. She said hair loss is a side effect for less than 1% of people on Prograf. I guess I drew the short straw on that one.

Despite the challenges ahead, I think going back to work is only going to aid in my recovery. I'll be getting back into a routine and spending time 5 days a week with my friends and students who keep me laughing. (I already know about half of my class) I definitely think it's a good thing. I keep telling myself this week is only 4 days and I have the next week off for Fall Break. I think that's a good way to ease into things.

People say "well geez aren't you worried you are going to get sick?" I'd be lying if I said the thought didn't cross my mind, BUT God is in control. I trusted him the whole time I was in the hospital, so why shouldn't I do the same now? Even when I was pretty much on my deathbed, I was reassuring my family that everything was going to be ok. Right before my transplant, I told my Aunt Sonja "Don't cry for me Argentina, I'm going to be fine!" Apparently I lost my memory but never lost my sense of humor.

I know that even a common cold could linger for weeks and turn into something worse...the flu could cause hospitalization...You know what? I've made it through my darkest days with God on my side. When it comes to illness, I think I've already been the sickest I'll ever be! I will continue to pray every night for my health, however I never ever start a prayer by asking, but rather giving thanks.  If you think about it tonight or in the morning, please send up a prayer for me for my first day back to work and continue praying for my health. God continues to answers prayers. Thank you to everyone in my life-My family, friends, coworkers, Emory nurses and doctors! I LOVE YOU ALL!!!

P.S. I found it appropriate since this post was about work, to add a picture of me and my teaching soulmate and Dugan BFF Jessie. :)

Thankful

I am about to begin the process of writing my donor's family a thank you letter. The way it works, is you write your letter and send it to the chaplain at Emory (or whatever hospital you received your gift.) The chaplain proof reads the letter and takes things out that shouldn't be there. They have some pretty strict guidelines. From there, they send it to your donor's family. They can choose to respond or not. I really hope they write me back. I would love to learn more about my donor and eventually meet the family some day. According to my family, I was the recipient of a younger girl's liver. I'm not really sure how they know that, but that's what they said. I'm pretty young myself, so to think of someone even younger than me losing their life is so tragic and sad. Not a day goes by that I don't think about my donor or their family. I may make comments about what I should name my new liver or pulling the liver card, but that doesn't take away from me being VERY aware. Someone that lost their life gave ME a second chance and their family is probably still suffering.

 I'm struggling to write this letter, because one of the really strict guidelines is that you aren't supposed to mention religion or your faith in your letter to your donor's family. I suppose this is because your donor or donor's family could very well practice a different religion. This is difficult for me because  MY faith played such a huge part in the whole process from beginning to end. God was there. He's still here. How can I not bring Him up?

Also, how can you put into words the gratitude you feel when someone has given you the gift of life? To me, there's no words or material gift that can convey that. I thought about writing a poem to my donor's family, but then again, how do I do that without mentioning God?

More than anything (since I can't mention my religion) I want my donor's family to know about me. I want them to know that I will take great care of my precious new gift. I want them to know that I teach children and want to help people. Furthermore, I want them to know I want to make the world a better place and bring awareness to organ donation. Finally, they need to know that their loved one lives on, and through me will continue to help people.

Please pray that I can find the words to convey my gratitude to this precious family. 

XOXO

God Bless

My NEW Testamony

If I had a dime for every time I have told this story, I'd be a very rich woman and paying for medical bills would be no big deal. haha. I honestly don't mind telling my story though, because when you hear it, you can't say that God didn't OWN the situation.  Keep reading and you'll see why....For those few of you that I haven't told the story to, or have only heard bits and pieces through facebook get ready to hear it straight from the horse's mouth.  At one point there was a rumor on facebook that I was in a coma.  I was never in a coma, although I WAS in very bad shape.  To a lot of people I'm sure it seems like I had a "drive through transplant."  I mean 3 weeks is a very short time frame to get sick, have a transplant, and be discharged.  I'm sure that probably makes it seem to some like it really wasn't a big deal.  It WAS a big deal.  Those that saw me in the hospital saw how jaundice and sick I was.  They saw how important it was that I get a new liver AND FAST.  They saw me gain 60 lbs of fluid.  They saw me not recognizing people and not being able to answer simple questions  Some described me as looking like "the walking dead."  I would agree.  Without my transplant as soon as I got it, I wouldn't be sitting here typing this today.

Some of the details of this story are very blurry to me.  That's because I had very high ammonia levels.  Basically, my liver was 90% dead tissue and was not able to filter out ammonia (among other things.)  When your ammonia levels are high, you are not "with it."  There were times in the hospital before my transplant that I thought my sister was my 97 year old great grandmother.  There were times that I didn't know my fiance.  Most of the time I also thought I was at Redmond instead of Emory.  Let me start at the beginning and recall the details (the best I can.)

The last couple of weeks of school in May I was not feeling well.  I couldn't put my finger on what was wrong, but I knew I didn't feel right.  Come to think about it I wasn't feeling well for a while.  My parents begged me to go to Steeple Chase with them (in April) and I decided I would rather spend my Saturday laying in bed.  I was just fatigued.  The last couple of days of school, I told friends, my principal and Mrs. BJ that I wasn't feeling well.  I could only describe it as what I thought it felt like to have low blood sugar.  I just felt shaky. Three days after school got out, I went to my doctor and told him "I'm terrified of needles, but I think I need blood work.  He listened to my heart and thought I needed an EKG since my heart rate was high.  The EKG was normal so basically he felt like I had anxiety and prescribed me anti-anxiety medication.  No urinalysis, no blood work.....needless to say he really dropped the ball and he's not my doctor anymore.

That was on a Friday.  The following Tuesday I decided to go to the doctor's office where my sister worked for blood work.  I was so weak that  my mom had to come over to my house and dry my hair for me.  But thank God I listened to my gut and went.  By this point, my urine was the color of sweet tea.  My liver enzymes came back in the 2000's and 3000's when they are supposed to be between 40 and 50.  That night, my sister encouraged my parents to take me to the emergency room.  Apparently the doctor's where she worked were really concerned.  I remember my whole family came to my house and told me they were taking me to the hospital.  For some reason (ammonia levels probably) I kept talking about Britney Spears and how she was hospitalized against her will. hahaha.  Also, according to my mom and dad, I almost stepped off my front porch.  I don't remember that at all.

So, just to fast forward through some things, I went to Redmond and didn't stay the night.  I ended up getting a HIDA scan a few days later in which they inject you with something to check your liver.  I had already canceled one appointment because of my high ammonia levels.  I just wasn't in my right mind.  I was in such bad shape that they direct admitted me to Kennestone immediately after the scan.  Well they wanted me to go through the Emergency room, but my mom got me a direct admit and wouldn't settle for less.  I stayed there over night.  I had the worst roommate.  She kept complaining that I had guests after hours but this was after she heard us praying.  I think she was a non-believer.  She got transferred to another room thank goodness.

Kennestone was an important part of my journey and new testimony. Here's why:  My doctor at Kennestone told me he would feel more comfortable sending me to a more specialized hospital that is capable of handling liver issues.  Ok, I thought...I still didn't think it was that bad.  So...he says "I have done all the paperwork and I'm sending you to Piedmont."  "I don't want to go to Piedmont," I said.  When he asked me why, I told him that I personally knew someone that had a liver transplant at Emory.  Not that I thought I was going to have a transplant, but I knew they obviously knew their stuff when it came to livers.  I think the doctor thought my mom was trying to control the situation because when she left the room he asked me if I was sure I wanted to go to Emory.  He kept pushing Piedmont on me.  My mom had no idea which place was best.  She just wanted me to get well.  I really think God was telling me to go to Emory.  This is an important part of the story because later on, I would have to be put on a MARS machine (liver dialysis) that would keep me alive until they found a donor for me.  There are only 5 MARS machines in the U.S. and ONE in the South East.  That ONE machine was at Emory and I was the 19th person to ever use it.  God was definitely guiding my decisions despite the cloudiness in my head.

Once the room was ready at Emory, they took me by Ambulance.  I asked my Dad to ride with me and he did.  Once they pushed the gurney off the elevator onto 7G (7th Heaven) the first thing my dad and I saw was "Liver Transplant Floor."  I immediately freaked out.  I held my Dad's hand and said "Dad, do you know something I don't know?" With tears in his eyes, he told me that he knew as much as I knew.  We were both scared.

I settled into my room and we met the Physician's Assistant and he told me they would need 23 vials of blood.  WHAT?!?  I am, no I WAS terrified of needles.  My dad had the best idea though.  He got me a grape Fanta (because I was scared I was going to pass out) and he told me to put my sleeping mask on so I wouldn't have to watch. I was a BIG BABY when it came to needles.  Not anymore though.  He held my hand the whole time.  Honestly, the rest of my stint at Emory wont be in chronological order because it all runs together, but every morning at 4:30 a.m. I would get woken up by the sneak attack from the phlebotomist. That was the worse!

One day, a group of psychologists came in my room and were asking me all of these crazy questions.  One question that stands out was: "Do billboards talk to you when you pass them?"  Um, excuse me?  What???  They asked me questions like what my home life was like and if my parents make me feel inferior and if I have ever wanted to take my own life?  UM, NO, NO, and NO.  They then gave me this paper test that when I looked at I thought was easy.  There were a lot of 2nd grade standards I had taught like drawing the time on a clock....I thought I aced the test, but it turns out I didn't.  There again....high ammonia levels.

At one point they took me over to the eye doctor at Emory to check me for Wilson's disease which is a build up of copper in the blood and affects the liver.  I was praying that was what it was, because I REALLY didn't want to have a biopsy.  That was negative.  A few days later, I had a trans jugular biopsy.  The normal liver biopsy is a needle put through your side that takes a string size piece of liver out for testing.  This however would go down through my jugular to get a piece of my liver for testing.  I'm still not sure why they chose a trans jugular biopsy for me. I do know I was in bad shape and every news I got was "cushioned" so I didn't get worried or upset.  Apparently what was supposed to be a 2 hour biopsy lasted over 6 hours because I had a hard time waking  up from the anesthesia. 

We got the results a couple of days later.  The verdict was autoimmune hepatitis.  For those of you that don't know hepatitis means "OF THE LIVER."  I always tell people that I have autoimmune of the liver because people are not informed about the word hepatitis.  They think of it like Hepatitis A,B,C,D,E which it's not at all.  They also told us my liver was 90% dead tissue.  I will never forget my very pretty woman doctor saying "But that makes you an excellent candidate for a liver transplant!"  She said it with excitement.  All I remember doing is taking a big breath and gulp and letting it all sink in.  They had been telling me I might go home before my biopsy, so this was a drastic turn in the road.

The next few days were definitely a blur.  During one of the rounds my doctors and surgeons were making, I started throwing up.  It was then, that they sent me down to ICU.  I don't remember being in ICU before my transplant.  I only remember it afterwards.  During my stint in ICU, I was placed on the MARS machine which I mentioned earlier in this post.  When they were putting the lines in my neck, I remember screaming bloody murder.  I don't recall any pain, but I felt suffocated because they had to cover my face while they were putting in the lines on both sides of my neck.  Apparently I was on the MARS machine for 8 hours.  The only thing I remember of this 8 hours was them calling in the chaplain and me praying to God.  This was the first time I really felt like I was going to die.  When they call the chaplain in, that's usually not a good thing.  Every breath I took felt like it was going to be my last one.  I kept seeing the light so I felt like I was about to go.  I remember praying to God that if I was about to die, please let me not be so aware.  I felt very aware of every breath I took.  It felt and sounded like a machine was breathing for me.  I decided (or God decided) that I wasn't going to give up.  All I could think about was my mom and dad and how I didn't want to leave them like this.  It broke my heart that I was breaking theirs.

Either during the MARS machine or right after I got off the MARS machine, they found a match for me.  THANK GOD!  I was within days of passing.  Again, I don't remember getting the news of a match, but I'm sure it was an amazing moment for my family.  I'm not really sure how long it took for the liver to make it to Emory, because the last thing I remember before my operation was my parents waiting in Pre-Op with me.  It was very calming for me to have them there with me right up until the end.  I remember my mom kept asking where the liver was and at one time they said it had just landed at Hartsfield Jackson Airport and another time they said it was going down Memorial Drive.  How fitting.  It was like having a Santa tracker on that thing.

After my transplant, I woke up and they were still asking me the crazy questions like "What day is it?" "Where are you at?" etc....at first I think I was still getting them wrong, but I always knew my parents, I knew my cat's name, and Chipper Jones' baseball number.  Before my transplant I thought if I got the answers wrong that I would fail the test and not get the liver....no one told me otherwise.  So when I got the questions wrong again, I told my mom I was scared I wouldn't get a liver because of it.  She said "You already have your liver! You are good honey!"  What.a.relief.  The first thing I said to my dad when I woke up was "I didn't know someone could go this long without eating or drinking." It had been DAYS because I was at the top of the list and surgery could be at anytime! My cousins Josh and Katlyn made sure I had PLENTY of Chik Fil A sweet tea when I woke up since I could only have clear liquids.  That qualified!!

It wasn't even 2 whole days when I got moved back up to 7G from ICU.  I was so excited because quite honestly those were the best nurses in the hospital.  Some of those nurses I will keep in touch with for the rest of my life. (Nurse Susan and Nurse Lauren came to my birthday party that my aunt threw for me.)  That's when I'd say my recovery REALLY started.  I got moved back up on a Saturday I think, and by Wednesday I was being discharged.  I haven't looked back since.

Here are some ways that God had his hand on me before, during, and after my transplant:
-God waited for me to get out of school for the Summer before I got sick.
-A year ago from my transplant date, I didn't have health insurance.  If you don't have insurance or a way to pay for your VERY EXPENSIVE ($2000 a month without insurance) medicines to take care of your gift, you aren't getting a transplant.
-Last open enrollment (last year) I signed up for short term and long term disability not even sure why I was doing that.  God was guiding that decision all the way.
-God guided my decision to go to Emory where in my opinion THE BEST OF THE BEST work and save lives every day.  Also, they had the MARS machine that I needed to live.
-The surgeon told my parents that the liver immediately started working and they wished they had the liver that I was gifted for all of their patients.
-God has provided for me in little ways such as receiving an overpay check from escrow in the mail, and receiving a gift from some very special people in my life that told me God spoke to them and told them they needed to help me.

So in a nutshell, that's my story.  I'm sure I've left out a lot.  I know I've left out my donor and everyone that was there for me during this time, but I'm saving those for their own blog post. I think this will be very therapeutic for me being able to write about my experiences and bring organ donation awareness to everyone.  I pray every single night that God will show me my purpose.  He saved me for a reason.  He's got huge plans for me and I can't wait to find out what they are.

XOXO
God Bless

P.S.  I wrote this post in green, because that's the color of the organ donation awareness ribon. :)
P.S.S.  Bear with me while I make my blog cute.  It's been quite a long time since I've blogged.