Sunday, May 17, 2015
New Look
I have redesigned the look of my blog! I hope you all like it and you still find it easy and enjoyable to read!!!
Monday, May 4, 2015
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!
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!
Wednesday, April 29, 2015
.....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.
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!
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.
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!
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!
Sunday, March 22, 2015
More about the surgery!
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.......
Friday, February 6, 2015
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!
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!
Friday, January 2, 2015
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!! 
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.
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!!
Monday, December 1, 2014
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!!!!
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!!!!
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