Monday, October 5, 2015

October Already?!?!

Well here it is October already and I haven't posted in ages! Things have been a little rocky, but I think I'm finally over the hump and ready to say that this whole process was worth it!

Summer did not come without hiccups though.

In May, they found that I had a fungus growing in my lungs so I was started on more IV antibiotics. I was on them for 3 months so the drug would work to kick the fungus out! And it did work!! Fungus is gone!

The other IV antibiotic I was on for 6 months ended up poisoning me and I spent part of June and all of July in the hospital. I went into kidney failure and my liver was also having issues. I ended up with 12 extra kilograms of fluid on board and was very weak. When I first got to the hospital I couldn't even lift my head off of the pillow. My nausea was so bad that I did not eat anything for 3 weeks. They kept my nutrition up through TPN feeds through my IVAD. They did a bronch on June 24 and 19 days later we found out that the micobacterium absessuss that I was growing before transplant was growing in my new lungs. It was a devastating blow, but I held it together and got through it.

Throughout all of that I ended up losing about 30 pounds. To help gain it back and help take the pressure off of eating, they put a feeding tube in my stomach and I started nightly feeds which gave me an extra 2400 calories a day. It worked great!

Here it is October 5 and I'm back up to 125 lbs and feeling great. My breathing is way better. And the best news of all...I had a bronch a couple weeks ago and nothing has grown. That bad bug that I had before hasn't grown. We can't get too excited yet though because it could still grow after some time. But so far, everything is looking very promising.

My right lung is looking good and mostly healed up, but my left airway and lung still have some healing to do. Time. Just more time.

Right now I'm just hanging out at home for the most part. I did join a gym though and I go about 3-4 times a week. It feels great to be able to do stuff again without becoming short of breath.

Jumping into my car and just going is something I lovvve now! It's much easier without all the oxygen and hoses everywhere! I can also sing in my car again. So watch out, you'll see me belting out the tunes!

So many things that people take for granted I don't anymore. Like jumping in the shower, getting dressed, cooking suppers, doing dishes and going out in the cold. These were all things that I had a really hard time doing before that just come so easy now.

My donor is truly an angel that saved my life! I look up everyday and thank them for the amazing gift that they have given me!

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!

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.

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!


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.......



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!

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!!   
 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.