Hiccups

There has been many hiccups along the way. In January we moved to an acreage. Well my stepdad, Mike moved us to the acreage as my mom and I were in Edmonton. Its a beautiful house, but when we came home there was still lots of unpacking and organizing to do. Thank god for my mom who did everything and was a huge help. I was want to give a huge shout out to my sister who came over before I got to come home and completely organized my room and had it right ready for me! THANKS SISTER!

 After I got home it took me a while to adjust to my new life. I was still a little bit weak. Oh I forgot to add that when I had a routine bronch on March 6 they found that I had influenza A, which was not good and my immune system is so compromised. I was immediately started on Tamiflu for 5 days. My lung function also plummeted during this time. I was up to 56% and I dropped into the 40's. I thought I was over the flu after a few weeks but apparently I was not. I ended back in hospital April 23-29 because I was feeling so awful and my lung function continued to drop into the 30's. I had had a nasal swab done a week before this and they again found that I still had the flu. I was also swollen up like a marshmallow. They figured I had about 5kg of extra fluid on me. I was once again put on Tamiflu for 2 weeks and Lasix to get rid of the fluid. When I got discharged I was feeling better and ready to go home and get in a new routine.

A routine that consists of pills, iv med, breakfast, rest, lunch, exercises, rest, supper, rest, pills, iv med, and then bed. It sounds worse than it is though. I still get out with my mom and go shopping and such.

Here are a few pictures of us getting out and having a good time!

Relaxing on my aunts couch, which is where we stayed when I was discharged

Mini golfing at West Edmonton Mall. Something I couldn't do before! And now I'm a champ!!

Out for lunch with my mom and sister at the Highlevel Diner!

Mom and Stacey at the Highlevel Diner for lunch!

.....To Be Continued

Well, the road to recovery continued and the hallucinations (from the narcotics) started. It was really not pretty. They were so bad I was awake for 72 hours just staring at the wall. I hallucinated that I was being given a million dollars and they were putting on a concert for me outside. I was convinced my whole family was hiding this from me and I even tried climbing out of my bed (with all my tubes attached) to go and see what they were doing in the hallways. Turns out they were never there. But I could hear them, it was so real. Mom finally got me calmed down and all washed up one night and as soon as she was done I looked at her and said "okay, I'm ready for the party now." Mom couldn't believe it. I was so out of it. I also saw my sister chasing a monkey/dog under the chair in my room. Turns out she was at home sleeping. Those narcotics really made me crazy and I was happy to get off of them!

I was moved out of the ICU after about 5 days. I made it to the step down unit. Because of all of the antibiotics and new medications I was on I suffered with severe nausea and vomiting for weeks. I couldn't keep anything down. Eventually they started TPN through my IV to give me some nutrition. This lasted a couple weeks until my liver and kidneys started going all out of whack and not working properly. Then they decided to try tube feeds. Just imagine that gross yellow tube hanging out of my nose. I was a piece of work! Tube feeds were okay for feeding me but I still had to try and eat to but that didn't work. Just more nausea and vomiting.

Here is a picture of my lovely yellow tube hanging out of my nose! GROSS!!

They were running out of ideas of how to control my nausea so one day a miracle happened....my doctor decided to take the tube out and see if it was irritating the back of my throat and that was why I couldn't eat. So we pulled it out and suddenly I wanted a basket of fries from downstairs. Mom went and got me some and I ate the whole basket!!! Its funny how one day I can't eat anything and the next I'm eating fries! The next day I even had Wendys!

It was so crazy that mom actually took a picture of me eating my Wendys!

The nausea was what was keeping me hospitalized (my lungs and physiotherapy was going great!). As soon as I had 4 good days of eating I was discharged. It had been 6 weeks in hospital.

I still had to continue going to the hospital daily for my physio, which consisted of strength exercises and occupational therapy. I also have to continue on one IV medication for a year so we had to go to the medical outpatients unit twice a day to get my infusion. Here is how our out of hospital schedule looked:

6:00am: Wake up
6:30am: Leave the house
7:00am: Be at medical outpatients to start the iv med
8:30am: transplant clinic (Tuesdays and Fridays)
                or
              physiotherapy (Monday - Friday) We went after clinic if it was a clinic day
10:30am: Occupational Therapy
11:00am: Head home for lunch. We then had the afternoon to ourselves to do what we wanted, but  
                most of the time I was too tired to do anything so we laid on the couch.
5:00pm: Make a quick supper and eat
6:30pm: Head back to the hospital
7:00pm: Be at medical outpatients to start the iv med
8:30pm: Head home and go to bed so we can be up bright and early for the next day.

Here is me at the gym one day working out hard! These machines are what the rehab program consisted of. Lots of strength exercises! But look at me, clearly I'm killing it! I even had time to pose for the picture!!!

All of this continued for 3 months total. We were discharged from the hospital and rehab program on April 2, 2015. It was nice to know I was going home!

More about the surgery!

6pm. New Year's Day. Off I go, wheeled down the long hallway to the operating room. I remember scooting over onto the ice cold operating table from the stretcher the moment I entered the room. There were people dressed in green gowns, masks, and hats everywhere. The anaethesiologist then began her prep. I hadn't even seen the surgeon yet.

She started placing lines and tubes everywhere. I was connected to heart monitors, blood pressure machines, and iv's were being shoved in me everywhere. The  large iv placed in my neck was the worst. It was very painful and I was still wide awake.

Finally the surgeon came and introduced himself. The last thing I said to him was "Take good care of me please."

After that I was given some high flow oxygen to breath in and then I was off to sleep. I knew when I woke up my life would be very different.

Waking Up!

I don't remember much about waking up, but this is what i've been told. My surgery lasted 7 hours and I was wheeled out of the OR at 1:00am. My family got to see me at 4:00am, but only for a few minutes. I was in ICU and had lines everywhere. Appparently I had about 15 different things running and my nurse was just back and forth on either side of my bed adjusting everything. I still had my breathing tube in. I started out communicating by writing on paper. My artistic skills weren't good and my mom had fun trying to interpret it. I did give her a thumbs up as soon as I saw her though. 

At one point I started getting sick with my breathing tube in and freaked my mom out. We were both afraid of aspiration into my new lungs. But we learned that would not happen. It was a scary moment. My breathing tube was removed by 8pm on Jan 2 and I was placed on high flow oxygen for 2 days and then there I was, breathing on my own with my fancy new pink lungs!!!! (Thank you donor)

Jan 3. First time sitting up with new lungs. I was up! Sitting in a chair. Next thing I know I'm up walking too. It took a crew of nurses and physiotherapists but I was walking! It took that many people to help me move with all my lines and push a wheelchair behind me just in case I needed it. 

I was now beginning my road to recovery.

To be continued.......

5 Weeks Post

5 week update.

Sorry its been so long since the last update but it has been a roller coaster ride since day 1.

After coming out of surgery I began to wake up and had the breathing tube out late that same day. I don't remember much about ICU but i do remember it was a busy place. I remember when I had the tube in I couldn't talk so i was writing everything on paper. They got me up sitting the day after surgery and not long after that I went for my first walk in ICU with no oxygen! Time to cut up that old tubing!

I was in ICU for about 5 days. Then I was moved to the transplant unit where I currently sit and heal. There have been lots of ups and downs with the meds though. I was fighting nausea and problems with my kidneys and liver though. Good news is my kidneys and liver and finally back to normal with a few changes in meds. The nausea is still present as they continue to change meds and try and figure it out. They had to put a tube feed down to keep me nourished though. That wasn't pleasant having a nurse and radiologist shove that huge thing down my nose. It is helping keep my eating though.

Good news through it all is that my new lungs are in perfect shape. My SATs have been between 92-100 the whole time!

I started going to the gym a couple weeks ago and i can tell i'm getting much stronger. No arm exercises yet due to the incision but lots of leg work. I'm also going to yoga everyday to help give me more strength as well. Any little thing helps.

I've had lots of gifts and many thoughtful cards and visitors. A friend of Mike's, Paul, even got me a curling broom signed by John Morris. That was a pretty awesome thing to get.

Some of my staples and sutures have come out but I cant really feel any difference. Mom has been here helping me a lot and so has my sister.  Thank you!

4 hours and 45 minutes into 2015 the call came!!

 GOOD NEWS!!  This update is not being posted by Melissa because the time has come!!

 It's kind of ironic that after Melissa's Facebook post from New Years Eve we're in Edmonton

"2012, 2013 and 2014 didn't deliver lungs, here's to hoping 2015 will be better!"

At 4:45 am January 1st the call from the transplant coordinator came in. They have suitable lungs for Melissa and we have 2 hours to travel to Edmonton to get the ball rolling.   Wow, what a moment!! The house lights came on and the packing began. This is what we have been waiting for 2 1/2 years!! Melissa dusted off her bag that she packed when she was first accept for a transplant and Joanne started throwing clothes from her closet. Wow!! Is this really happening?  Within 20 minutes the journey to Edmonton was under way. Time to chat about the future, no oxygen hose wrapped around the pets, no coughing fits in the middle of the night and best of all Melissa will be able to take a deep breath like the rest of us!! Something that she has never been able to do.  

Shortly before 7am we arrived at the hospital filled with excitement that this really might happen. Time to get admitted and get this game started. As we sat in Melissa's room she says "Mom, Am I dreaming? Is this really happening?"  Joanne laughed and said " I think so!"  Shortly there after the transplant coordinator entered the room and introduced herself and said that everything was a go. Time to start the tests and fill out some forms. Time to share the good news!! What better way to start a frenzy then to post it to Facebook!!   

 Well it worked!! The text messages, FB posts and best wishes started flooding the bandwidth. Over a 100 likes on Facebook and counting and Melissa says "Mom, look at all the likes I have!!"  All the communication from loved ones helped to pass the time away. First they said that things would start around 2 then it was pushed to between 4-5 and then 5:30.  At approximately 4pm it was time to shower and shave the inch long hair from her legs.  She said that, not me!! Into the shower she goes with her little care package that has been tucked away in here bag since the beginning. Then the call for help, "Mom I can't shave my arm hair!! " Joanne entered the bathroom to help with the process and the laughter began.  It sounded like two little kids in a splash park. Once that ordeal was over, Melissa  started to brush her teeth. Another laughter outbreak?? What the heck is going on in there?  Ha ha Melissa's tooth pasted was expired!! Who knew there was expired date on tooth paste??  As 5:30pm came closer and closer the time was not changed. Wow, this might be the time that we have been waiting for. As the room full of family paced and watched the clock, a stretcher arrived outside the door for a special pick up. It was time!!! 

 Like a trooper that she is she walked right over to the  stretcher and climb right on. As she was pushed down the hallway to the OR the family followed nervously behind. This is really going to happen!! Quietly we all entered the elevator and down we went. Slowly Melissa was wheeled into the prep room.  Time for another picture!!

A round of hugs and kisses and at 6:05pm and she was taken to the OR.  Time for us to get some rest. At 1:15am the surgeon talked to Melissa's dad and said that the surgery went really good. Finally at 4am we got the opportunity to see Melissa for the first time after the operation. Wow!! She looked great. Sure there's tubes coming from everywhere and medication being pumped from high tech machines but she looked great!! What a relief that everything went so good. 

Cold winter days = Long days inside!

Well, summer and fall have come and gone and I don't feel I am much further ahead in this lung transplant journey. It is turning into a never ending marathon. A marathon I feel I will complete and win eventually, but the miles along the way are very long.

With the cold months upon us, I find myself spending a lot more time at home, where it is warm and comfortable. The days seem to go by much slower, and I find myself thinking about things a lot more now.

Why me? That is one thing that has been on my mind lately. Why me? Why was I chosen to be the one to go through all of these struggles. Is it that I hit the unlucky jackpot with genetics or is it because everyone knows that I am strong and can deal with the battle at hand.

Don't get me wrong, I am not wishing my illnesses on anyone else, I just want to know why me? I don't want anyone to take this as I am feeling sorry for myself either. I am one of those people in the world who has big plans. Plans to finish University, start my teaching career, get married, and start a family. Even though I have all of these dreams and goals in life, I have been thrown a curve-ball. A curve-ball which I intend to hit out of the park, but still I ask myself, why me? Why did I have to be thrown this curve-ball. Why does anyone have to be dealt these cards in life?

I miss all of the things that I could do before. Simple things like laughing, showering, and walking have become chores now. I find myself thinking about all of the dreams I have for my future and that is what is fueling my fire. I tell myself that "one day I will get there, and I will accomplish all of my goals." All while knowing there is a chance I will not. I do not want these thoughts of failure clouding my "road to new lungs marathon." Instead I tell myself to push these thoughts aside and only focus on the positives. I will breathe easy again. I will laugh like crazy again. I will belt out horrible tunes in my car again. I will run around again, free of tubes and coughing fits.

Even though I am remaining relatively stable, it does not make this journey any easier. My life is on hold. I am 23 years old and my life is on hold. I would love to be going out and doing everything that I once did before my lungs turned on me, but instead I find myself consciously thinking about every breath I take and hoping to be able to keep taking many more!

I know this is starting to sound depressing, but I would consider myself the furthest thing from depressed. All of these thoughts have been encouraging me to fight. To fight harder and longer than I ever have before. To keep going. To keep marching forward. I will not let my disease win. I will not let these 23 year old nasty lungs destroy me.

I know that I am strong and capable of fighting this. I have an amazing support system behind me in terms of my family and health care professionals. They are all on my side and will not let me give up either. Giving up would prove that I was dealt a hand in life that I cannot handle. I CAN handle this and I WILL beat it!

So when I get back to thinking "why me," I have to tell myself, "yes" maybe I did lose out on the genetic lottery, but I would not have been dealt this hand if I could and would not handle it. I am a fighter and I WILL NEVER GIVE UP!!!!

Back to the Blogging World.....Again

Well, I'm back again for another not-very-exciting update. And not-very-exciting- only because I haven't received my new windbags yet!

I see the last time I posted was February so I guess I have a little bit to catch up on (if I can remember that far back).

It is the middle of June already.

I guess it wasn't a very exciting winter as I don't really have much to say. I made it through with no hospital admission and have been relatively stable. I'm still going to clinic in Calgary monthly. Those docs down there sure have me on a short leash! Although I must say, they are doing a great job!

I could babble on and on about how I've been feeling, but what's the fun in that. I'm fine.

My PFT's are stable.
My weight is stable.
Not diabetic yet.
Still taking lots of drugs.
Etc, etc.....

First I would like to start by complaining about how sick and tired I am of being on a leash 24/7. And no I don't mean the leash I mentioned earlier (you know, the short one my docs have me on). I mean this 55 foot hose that follows me everywhere and nearly rips my ears off about 2000000 times a day. I mean, I don't even know what it is like to get up off the couch and run to the fridge anymore without ensuring my hose is free of obstacles. Speaking of obstacles, my dog, Chance, is my biggest, most annoying obstacle that I have to overcome on a daily basis. I mean, I know he loves me a lot and wants to follow me around, but stepping/laying on my hose every time I want to go anywhere is just no longer acceptable. Note to self: Research online how to train your dog to stay OFF your oxygen tubing. Other people have this problem, I'm sure. There must be articles about it!

Oh, I do love my dog though. Here let me show you his beautiful before and after pictures of his haircut this year.



















Pretty cute eh?

Another thing I have been thinking about is how I don't even remember what I look like without oxygen on. It has been over 2 years now people! After my transplant I'm going to look in the mirror and not know who it is looking back at me. Also, I've established habits with my oxygen that are going to be hard to break. For example, getting dressed.

Step 1: Oxygen off
Step 2: Shirt off
Step 3: Oxygen back on
Step 4: New shirt on
Step 5: Oxygen off, feed under shirt until it comes out the bottom
Step 6: Oxygen back on, on top of shirt

I mean after transplant, how am I just going to cut out Steps 1, 3, 5, and 6. I am going to reaching for tubes that don't exist and people may look at me strange. Although, changing my shirt in public is not something I am planning on doing a lot of after transplant.

Another thing with this oxygen.....what's it going to be like to just put on a pair of shoes and walk out the front door. I mean right now its a 5-10 minutes ordeal.

Step 1: Walk downstairs
Step 2: Grab portable oxygen
Step 3: Disconnect oxygen tubing from home oxygen
Step 4: Reconnect oxygen to portable oxygen
Step 5: Find and put on shoes
Step 6: Grab a jacket
Step 7: Pick up 2000000 pound machine and lug to vehicle

Think about this one. After transplant I can say goodbye to steps 2, 3, 4 and 7. How exciting, what am I going to do with all my spare time?

Those are just a couple things that I can look forward too after transplant. There are going to be soo many other things that I'll be able to do without worrying about oxygen. Like showering, ooooh showering. That will be nice to do tube-free. I'm starting to realize how dogs feel when they're on a leash. But don't compare me to a dog, because I have much more self control and don't NEED this stupid leash for that reason.

Now that I've complained for a bit, let me tell you about a couple good things!!

1. I became an aunt again. My stepbrother and his wife Trina had another baby, Connor! (see below)
2. My nephew Kaden turned 2
3. Mom and I are going on a mini-vacay to Jasper in July (which I'm super stoked for!)
4. I went to see Luke Bryan in Edmonton (see pics below)
5. Pool ended, which is kind of a bummer, but I'm actually going to play on the team starting in Sept.
6. I volunteer once a week and the mall selling pull  tickets for the hospital
7. There is a big golf tournament hosted by Cheers Pub this weekend and I am volunteering there. They are having the tournament for Cystic Fibrosis. It's going to be awesome.
8. I survived the freezing winter and can now venture outside more!
9. Big Brother is coming back on in 2 weeks! (I can see numerous eye rollings going on right now)
10. I get to go camping again.
11. I got a sweet hammock to lounge in the backyard now!

I know there's more good stuff, I will think of more later!

Yes, that is beer and yes it was damn good!

Mom and I enjoying the show!

My new nephew, Connor, and I.

Kaden's 2nd Birthday!

Baby Connor! Isn't he the cutest?!

Ooh, I have also decided to try and grow another tomato plant on our deck! Wish me luck because I CANNOT wait for fried green tomatoes! 

Right now, I'm getting pretty comfortable with having time to just relax and hang out this summer. I mean work and school, what is that anyway? Don't get me wrong, I'm definitely ready to go back and finish my degree, move out, and start working but right now the sun is shining, I'm feeling good, and the beer is cold (don't worry people, 1 every now and again won't hurt a girl). 

Be back soon!