Well, I'd say I'm a little behind!

Well it has definitely been a while since I have posted anything. Summer flew by and by the time I knew it, it was September. Not being able to go back to school with my friends was pretty bitter sweet but I know that I will be able to finish once I am healthy again. From August through to November I was very stable and doing great. I was able to get out and do the things I wanted to do by myself. In September I had to go for a test in Edmonton to check my esophagus and for any acid reflux as those can potentially cause problems after transplant. I had to get a tube inserted in my nose and come home with it for 24 hours. I was sure glad to get that thing out the next day. I also saw the doctors again in Edmonton for a checkup and they were happy with how everything was going.

The day before my 21st birthday was the day of another check up in Calgary at the Foothills. I knew I was doing well, but was also worried I would be admitted because I always seem to be in the hospital that time of year. Luck was on my side, and I was not admitted. I had a great birthday at home and felt pretty good.

At the beginning of November I went for another check up in Calgary and things were still looking good. My lung function was at 33% and was remaining stable. But all the good news had to end when I caught a cold the middle of November. It started with a head cold and moved right into my lungs. By the 3rd week in November I was having a really hard time breathing and was admitted to the Foothills Hospital in Calgary once again. The plan was to get a picc line put in and start iv antibiotics again. Nothing can be easy though, right? They used ultrasound on my arm to try and find a vein to put the picc line in and I didn't have any so we had to move on to plan B. They needed to start the antibiotics so the picc people were able to get a normal iv in my arm using ultrasound. The plan was to pump me full of fluids and hope my veins got better so the picc could be inserted the next day. But.....nope, didn't work. Still no veins. Now on to plan C. A port o cath insertion. This was planned for a week after I was admitted so I was hoping my iv would last so I wouldn't have to be poked over and over again. Luckily it lasted and the next Monday I went in for the port. The port is a small device implanted in my chest, where a catheter makes a tunnel up the muscle in my neck and back down in a large vein close to my heart. To use the port a small needle is poked through my skin and into a cork-like device under my skin. Then a small needle stays in the port while it is being used, but the needle needs to be changed once a week.I didn't really know what to expect with the insertion, but I thought they would give me some sedation, but boy was I wrong. I was wide awake the whole time. They gave me a tiny bit of meds to take the edge off and then some painkillers. It took about 45 minutes to put in and wow was it sore after it was all said and done. Hot compresses and fentanyl were my best friend for a couple days and then I switched to tylenol. After about 2 weeks it started feeling better and my neck and chest was no longer sore. I find the port a little more uncomfortable than a picc line but in the long run it will be good. My lung function dropped significantly after I got sick as well. In hospital they did more lung functions tests and found that they had dropped to 26% and it is really hard to get it back. I stayed in hospital for 2 weeks and am now home on all of the same antibiotics. My mom is great at home. Its nice to have a nurse here. She is able to give me all of my iv antibiotics and help me out a lot. She is a god send. The meds do make me quite nauseated and I am trying my best to keep my weight up. The doctor said at least 6 weeks of home iv therapy and then we will see how things are. I see him again January 9. I'm hoping he stops the iv's so I can get back to eating and gaining weight.

I find myself more short a breath now and even have a hard time climbing the stairs in my house. Going out in the cold weather is nearly impossible, but my mom helps me out a lot. It is nice to get out for a little bit, but I also get tired really quick. I have had a few down days wondering if lungs will ever come and wishing I could just be "normal" again. I'd love to get these lungs and get on with my life....finish school, get a job, etc.

Yesterday I had another appointment in Edmonton to see the transplant doctors again. After talking to the doctor even he told me I was ready for lungs. He made me feel like the next set of lungs that come in that are my size, blood group, and fit with my antibodies they are mine. I'm hoping it is not too much longer, but there needs to be more donors. My lung function is deteriorating quickly and it would be such a great Christmas gift to receive new lungs!!!

We are heading up to my auntie Lynn's house for Christmas Eve and morning. It should be a good time and hopefully I am feeling well.

I will post more updates as soon as anything changes!!!!

Finally another update!!

Well I see the last time I posted anything was week 4. The time just flew! I completed the 6 weeks and am listed as a number 2 on the list now which is highest priority. I could get the call any day now. My physical therapist also taught me a home program in week 5 so that I can continue doing all of the exercises at home. Now to get a treadmill. We met a lot of really nice people in Edmonton who are waiting for or who have already had transplants. I will miss a lot of them, but definitely keep in contact with them. Here it is August 9th now and I've been home for nearly 2 weeks. It is good to be home though! The week after I got home my family from Ontario all arrived so I have been keeping busy with them. My aunts and uncle flew home today, but my grandma and grandpa are still here. It is really nice to see them all again. I have a routine all set at home too. I get up and do all of my physio and then exercises and then I have the rest of the day to myself to go and do what I want. I've done lots of shopping! My dad had his 50th birthday so that was a busy weekend and things are just starting to settle down now. I also went to Calgary the Monday after we got home from Edmonton for a check up with the docs down there. Everything is looking good and they took my picc line out for now! It's sooo nice to have that thing out!! Hopefully I can stay this healthy and stable until I am called for my transplant.

Below are some pictures that we took at the gym.

Below are all of the parking passes that we had to take every time we went into the parkade. I think we were there enough. $23.00 a day is enough too!! Thank god for monthly passes.

Our Little Home

Week 4

Well here it is half way through week 4 and things are still going good. Monday was an exciting morning at clinic. They have finally activated me on the list as a level 1. The doctor said there isnt much difference between a 1 and a 2 because when lungs come in that match me, I will get the call. Now the waiting begins. We've talked to a lot of people that have already had lung transplants and the average wait time seemed to be between 9 months and a year. So I'm not getting to anxious yet. Now I just have to remember to keep my phone on me. Today we had a nutrition class. Still need to keep eating a lot a gaining weight as it will make the surgery and recovery that much easier. The funny part about nutrition is that the class was between 10:30 and 11:15, right after I finished my work out at the gym and I was starving. I had snacks with me in case my blood sugar dropped I'd have something to eat. Guess who ate my snack as we were sitting in nutrition and I was getting a low blood sugar.....MOM!!! Gee thanks! But we made it back to the hotel and I had my regualar, a grilled ham and cheese. Then I had my hour nap and we headed on to West Ed to get out for the day. We stopped for some wings and bought a few things and now we are back at the hotel settling in for our nightly routines. No more classes this week, but we have a couple next week. I will update the blog again then. SIGN YOUR DONOR CARDS!!!!!

Just an update From Last Week

Well the end of last week did not go as planned. Wednesday night I was feeling nauseated and Gravol was not working so I tried the new medicine that the doctor in Calgary gave me to try. I ended up having a terrible reaction to it and being sick for 6 days. I took it Wednesday night and by Thursday morning I hadnt slept at all and felt terrible with restlessness and and increased heart rate. I did not even think that I could even get to the car so mom called paramedics so they could come assess me. They came to the hotel room and checked me out and my vitals were all okay so they left and mom got me to the car and we headed to the hospital to see the doctors. He suggested I try taking Benedryl to see if that would help. I took 50mg of that and laid in bed at the hotel all day Thursday. I missed going to the gym and doing my exercises on Thursday and Friday. Friday I was still feeling bad. I did not want to take anything else so I loaded up on water and tried to flush the med out of my system. Mom and Mike took off Friday afternoon for the long weekend on the motorcycle and I was home to look after the pets. I still did not feel good Saturday, Sunday, or Monday. I had a pretty quiet weekend hoping that my anxiety from the med would go away and I would be back to normal. Now, here it is Tuesday and I'm beginning to feel normal again. If I can call myself "normal." HAHA!!! I'm still a little anxious and restless, but am 100% better than I was. I went to the gym this morning and did all of my exercises and even kicked it up a notch on the treadmill. We did not have an extra classes today. Tomorrow we have a family support meeting with our entire group. Then Thursday and Friday there are no classes and we will just being going to the gym to work out. I'm going to be buff by the time I get home. It takes me over an hour and a half to do all of my strengthing exercises now. I'm planning to continue to go to the gym in Penhold when I get home to keep my strength. It will make the recovery after transplant a lot easier. Big storm at home today. Stacey says the parking lot at her work is flooded and it has been hailing. It looks like the storm is heading our way too. Could be a loud night with thunder out there. Hopefully I get a full nights sleep tonight. More updates to come.....Stay tuned!

Muttart Conservatory Visit

Pictures from the Muttart Conservatory

Week 2

Well we are back in Edmonton for week 2 of bootcamp. It's actually going quite well. I already feel like I am getting stronger. I'm up to 30 minutes on the treadmill and about an hour of doing all the other weights and exercises. Mom gets to carry my clipboard around and mark off my exercises and clean my equipment. Today there is a patient only session. Tomorrow there is a wellness through activity course and Thursday Mom and Mike are going to a support group meeting. We have also been able to go out and see some of Edmonton when we are done at the hospital. Well, after I come back and nap! Yesterday we went to the Muttart Conservatory. It was okay. Not as big as we thought but lots of plants and flowers. We are also going to go to the zoo while we are here and we are meeting a friend of moms for lunch today.

And the week goes on...

Well Tuesday we met with our physiotherapist at 8:30am. She got me started on the physio program that I will be doing for the next 6 weeks. It consists of endurance, strength, balance, and stretching. I start off on the treadmill and then move through the weight machines. I am starting off slow, but we are going to add more exerciss as the weeks go on. Today, Wednesday, we went to the gym and got all of my physio and exercises done then came back to the hotel for lunch. At 1pm we had our first class. It was a relaxation class and guess what......?!?!?!?! MOM FELL ASLEEP IN IT!!! I guess she is rather relaxed and the techniques we learned really worked for her. Tomorrow we just have physio and then are heading to West Edmonton Mall for shopping and a movie. More updates to come....

Day 1 of Rehab

Today we had to be at the hospital at 8:30am to begin our 6 week rehab program. We met at the rehab department where I joined the group I will be with for the next 6 weeks. 4 other ladies needing lung transplants for multiple reasons. The first day was like an orientation day. I completed some surveys and questionaires about my health and did another 6 minute walk test. We got our schedule for the next 6 weeks and saw all of the classes we have to attend. There are even classes just for me and some just for mom. After the quick orientation we headed upstairs to clinic to see the transplant doctors. The doctor still talked about how high risk my surgery is, but did not make it sound discouraging. He talked about iv antibiotics long term before the transplant as well. He said we would talk next week about when they are going to list me. I am hoping it will be in the next week. The sooner the better. After seeing the doctor we were done for the day and headed back to the hotel to relax and check out the hotel. We we also did stop and get groceries so we could cook our own supper!!

Up to Edmonton We Go!

Tomorrow we start the 6 week rehabilitation program so we headed up to Edmonton tonight to check into our hotel. We are staying at the Coast Edmonton House. It is great. We have our own kitchen, living room, and bedroom. Just like having a small apartment. Tomorrow we will go get groceries but tonight we are just relaxing at the hotel.

Great News!

Well, after finishing up the pre-transplant assessment workup in Edmonton I was sent home to wait for the entire transplant team to make a decision on whether or not I would be a candidate for transplant at their center. I got a phone call last week and....I AM ACCEPTED!! Edmonton has decided that I am a good candidate for transplant at their center. This means we do not have to pack up and move to Toronto to have the transplant there. I will be able to stay at home and wait for my transplant rather than having to move somewhere else. 



I have now also been booked into the 6 week rehabilitation program at the University of Alberta Hospital from June 18 - July 27. This program helps prepare you for surgery and get you as strong as possible. I have not been officially listed as of yet (I am currently a category 0) because I had to get my immunizations up to date and that included a live vaccine. You can not be listed for 1 month following a live vaccine. The doctors also want me to complete the 6 week program before I go for transplant. I am hoping they will list me as a category 2 as soon as possible. Then the waiting game will begin! Hopefully it will not take too long to find me a good match!


I now have a couple more weeks at home just to relax and have some time to myself before going up to Edmonton 5 days a week. I have a wedding to go to coming up on June 15 and am also waiting to hear word of the arrival of my sister in laws baby boy any day now!


 We will be staying at a hotel with a full kitchen during the week and coming home on weekends. I do not think I could leave my poor kitty for 6 weeks and not see him at all. Mike would probably kill him before I got home! Glad I will be home weekends to look after him! 

Organ Donation

There is a severe organ shortage in this country. Despite continuing efforts at public education, misconceptions and inaccuracies about donation persist. It's a tragedy if even one person decides against donation because they don't know the truth. Following is a list of the most common myths along with the actual facts:


Myth: If emergency room doctors know you're an organ donor, they won't work as hard to save you.


Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ donation can only be considered after brain death has been declared by a physician. Many states have adopted legislation allowing individuals to legally designate their wish to be a donor should brain death occur, although in many states Organ Procurement Organizations also require consent from the donor's family.


Myth: When you're waiting for a transplant, your financial or celebrity status is as important as your medical status.

Fact: When you are on the transplant waiting list for a donor organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information.


Myth: Having "organ donor" noted on your driver's license or carrying a donor card is all you have to do to become a donor.


Fact: While a signed donor card and a driver's license with an "organ donor" designation are legal documents, organ and tissue donation is usually discussed with family members prior to the donation. To ensure that your family understands your wishes, it is important that you tell your family about your decision to donate LIFE.

Myth: Only hearts, livers, and kidneys can be transplanted.


Fact: Needed organs include the heart, kidneys, pancreas, lungs, liver, and intestines. Tissue that can be donated include the eyes, skin, bone, heart valves and tendons.


Myth: Your history of medical illness means your organs or tissues are unfit for donation.


Fact: At the time of death, the appropriate medical professionals will review your medical and social histories to determine whether or not you can be a donor. With recent advances in transplantation, many more people than ever before can be donors. It's best to tell your family your wishes and sign up to be an organ and tissue donor on your driver's license or an official donor document.


Myth: You are too old to be a donor.


Fact: People of all ages and medical histories should consider themselves potential donors. Your medical condition at the time of death will determine what organs and tissue can be donated.


Myth: If you agree to donate your organs, your family will be charged for the costs.

Fact: There is no cost to the donor's family or estate for organ and tissue donation. Funeral costs remain the responsibility of the family.


Myth: Organ donation disfigures the body and changes the way it looks in a casket.


Fact: Donated organs are removed surgically, in a routine operation similar to gallbladder or appendix removal. Donation does not change the appearance of the body for the funeral service.


Myth: Your religion prohibits organ donation.


Fact: All major organized religions approve of organ and tissue donation and consider it an act of charity.


Myth: There is real danger of being heavily drugged, then waking to find you have had one kidney (or both) removed for a black market transplant.


Fact: This tale has been widely circulated over the Internet. There is absolutely no evidence of such activity ever occurring in the U.S. While the tale may sound credible, it has no basis in the reality of organ transplantation. Many people who hear the myth probably dismiss it, but it is possible that some believe it and decide against organ donation out of needless fear

Workup Week - Day 4

We had no tests on Thursday, May 17 so we came home Wednesday night and headed back up to Edmonton Thursday night around 5pm.

Today my first test was at 8:00am at College Plaza, Medical Imaging Consultants, which is about 2 blocks from the hospital. So we paid $5.00 an hour for parking and heading off for my abdominal ultrasound and Echocardiogram. The ultrasound was first at 8am and was completely finished by 9am. Then they sent me back to the change rooms to wait for the echocardiogram. The change rooms were all full, so I had to stand in the hallway with my oxygen on and wait for the next test. Not a very efficient system at all, but oh well. I`d never had an echocardiogram before, but it was next. I had no idea they took as long as they do. It was over an hour for the echo, but we finished these tests with no problem and then went for a much needed breakfast! This fasting business is not very much fun at all! 11:00am came and mom and I moved on to our last appointment with the transplant dietitian, Grace. She assessed my eating habits and took my height and weight. She was quite impressed with my eating and weight. She said that I had a good BMI for transplant and she was not worried about my nutrition at all. My A1C was also close to normal so that was good from the diabetes stand point. This appointment was about 45 minutes and then we were finished workup week!

It was a long, exhausting week but I am one step closer to getting new lungs. Now the entire transplant team is going to get together and review my test results and make a decision on whether or not I am a good candidate for transplant at their center. They all seemed very positive so I don`t expect there will be a problem being accepted. In a couple of weeks I will get word of their decision and then keep moving forward. If I am accepted I will then have to go up to Edmonton for a 6 week rehabilitation program. This program includes tons of physio and teaching. If all goes well I am hoping to attend the June 18 - July 27, 2012 session so I can get it done and move on. Oh also the doctors talked about when I would be placed on the waiting list. Sounds like they want to put me on right away as a status 2. Status 0 means that you need a transplant eventually and are accepted, but not currently active on the list. Status 1 means that you need lungs and you are on the list but are managing fine at home. Status 2 means that you need lungs and have frequent hospitalizations. I have been in the hospital quite a bit in the last 2 years and just got out of the foothills the week before I was due in Edmonton for the workup. I am also home on iv`s right now and have been on them for a month now. 2 iv`s totally 4 hours a day. I am feeling better and able to be off my oxygen a bit more now so I think they are helping. I go back and see Dr. Parkins next Wednesday in Calgary and we will decide if I keep doing the home IV therapy or stop it and take a break.

Workup Week - Day 3

Its day three today, almost half done!

Today was another early morning and not being able to eat breakfast again. At 7:30am we were at Diagnostic Imaging for a CT scan, VQ scan, and many x-rays. Lots of confusion today as I was supposed to have the CT scan first because it was booked, but they took me for the chest x-rays first. After the chest x-rays they took me for the VQ scan. I had no idea what this was until I got there. It is a scan that takes about 45 minutes and it looks at the gas exchange in your lungs and also the air movement. First they get you to inhale some special gas that they watch in your lungs by taking several pictures. After that they injected a dye into my picc line and took more pictures. After the VQ scan they took me to CT scan, but since they messed up my appointment that was scheduled for earlier I was waiting an awfully long time. Finally, someone took me down to use the emergency departments CT scanner as I was going to miss my next appointment. 3 hours later and all of the scans are finally completed. At 10:30am we were back in the Mazankowski Heart Institute to meet with Dr. Mullen who is a cardiovascular surgeon. I am still a little worried about the surgery because of the bacteria that I have but Dr.Mullen said that he has transplanted a number of patients with rare, weird bacterias and most have done very well with little complications so that made me feel better. After we talked about that he discussed in length with us about the possibility of living donors. I am interested in living donors and will look into this soon as an option in case my health deteriorates quicker than they can find a donor.

This was all of the tests scheduled for today so at about noon we packed up and came home for the night, as I also have no appointments or tests until Friday morning. We are planning on coming back up to Edmonton Thursday night and stay in the hotel again to avoid having to get up so early and fight with traffic getting into the city.

Workup Week - Day 2

Well on to day two.

Today I was only able to have a light breakfast because I was scheduled for a bronchoscopy. Oh well, I was already nauseated when I woke up anyways. The tests began at 8:00am when we had to be back at the lab to return my lovely 24 hour urine specimen. At 8:30am we had to be at the Rehabilitation Department for a 6 minute walk test. They gave me a timer and told me to walk around this square and see how many laps I could do in 6 minutes. I managed to complete 4 3/4 laps before the time was up. My heart rate went up to 130, but my oxygen only dropped to 92% from 96%. That was another fairly quick appointment. Next, at 9:30am we had to go back to the Mazankowski Heart Institute to register to meet with the Heart Transplant Cardiologist. I am not having a heart transplant obviously, but I still had to meet with him just to have a consult and make sure my heart is strong enough for the transplant. Of course it is! At 10:30am we were back at the 2E Medicine Clinics to meet with Dr. Humar, an infectious disease doctor. He talked with us about the rare bacteria I have and how we will have to attack it before and after transplant to make sure it does not return to my transplanted lungs. IV antibiotics pre and post transplant is definitely something I will be doing to make sure I stay healthy. At 11:00am I had an appointment for Pulmonary Function Tests (PFTs) and for Arterial Blood Gases (ICK!). I was not used to the PFT machine and mouth piece at this hospital and was also not feeling the greatest because I was so hungry and nauseated from fasting so my FEV1 was only 35% today. Hopefully it will be better than that when I see Dr. Parkins in Calgary next week. I had the full run through of PFTs. After that was the dreaded blood gases. That large needle they stick in the artery in your wrist does not feel good at all, but I got through it and my oxygen and carbon dioxide levels were not too bad at all. After we were done there, I got the pleasure of watching mom and Mike have lunch. Woo! Thank guys! At 1:30pm I registered at Day Ward 1A2 for my bronchoscopy. The nurse took me back and got me all ready to go and then they took me into the procedure room to put the scope down my throat and look at my lungs. They drugged me up with some Fentanyl and Versed which completely knocked me out. I don`t remember anything else until I woke up and mom was standing there looking at me. The bronc went good though and the doctor was surprised at how little secretions were in my lungs. After the bronc I was unable to eat for 4 hours because my throat was frozen so it was just back to the hotel for a nap before supper. After I woke up we decided to just go to the hotel lounge for supper and it was really good. After that it was back to the room to turn in for the night. Mom, Mike, and Auntie Lynn were with me all day again today.

Workup Week - Day 1

We came up to Edmonton on Sunday, May 13, 2012 and checked into our hotel that we will be staying at for 3 nights while we are completing all of the tests at the University of Alberta Hospital. 

Today was the first day of the 5 day workup that I have to complete to be assessed for lung transplant. And it was a busy one!! Mom, Mike, Auntie Lynn, and my Dad were with me. Started off at 7:30am where we had to be at the Mazankowski Heart Institute to have all my blood work and start a 24 hour urine specimen. Let me tell you, I don't think they have ever taken that much blood out of someone just for blood work! After a hectic morning of mom trying to get the equipment to take the blood from my picc line because my veins are so bad, the picc line wouldn't draw blood! So I guess I had to let them poke me! I must have had a professional though....one guy, one big needle, one vein, and the 16 tubes of blood were drawn. The best part of the day....Mom and Mike have to carry my urine around in a brown paper bag all day....even when we stop by West Edmonton Mall after the day is over...HAHA!! After all of the blood was done we headed off to my ECG appointment at 8:15am. I was glad that this only took about 5 minutes. Lots of wires, but all looked good. By 9:00am we were across the hospital in the 2E Medicine Clinics to meet with Dr. Nador who is a Transplant Pulmonary Specialist. He talked with us about the risk of the transplant in my case because of the rare Mycobacterium abscessus that I have in my lungs. He was very positive though and answered many of our questions. At 10:00am we met with Mina Deol who is a social worker. She went over many things with us including the financial costs of having a transplant, health benefits, AISH, and options for where we can stay when I have to return to Edmonton for the 6 week rehab program this summer. This appointment was about an hour and a half. After meeting with Mina, we got about an hour lunch break. At 1:00pm we returned to the transplant office and met with an anesthesiologist. He talked about that part of the surgery and how they would put me to sleep and the different iv's I would be connected to when I woke up. He also answered many of our questions. After meeting with him, we met with Marianne Schafenacker, who is the Assessment Transplant Coordinator. She went through a powerpoint with us about transplant and what to expect from the very beginning (the workup) to the recovery. It was great information that I also have enclosed in a duotang at home. She also took measurements of my chest so they will know how big of lungs they will need to fill my chest cavity when it comes to finding a donor. We finished the day off at about 3:30pm and had the rest of the night to ourselves.

After that long day at the hospital Mike, Mom, Auntie Lynn, and I decided to go over to West Edmonton Mall for some drinks, food, and of course the candy store! We stopped in at Hooters and had some wings and drinks (non-alcoholic for me :( ). After that we went to the candy store, checked out a few other stores and decided to go to a casino closer to our hotel. We stopped at Casino Edmonton and tried our luck at blackjack, but didn't have any! Mom thought she was playing a penny machine and put $20.00 in and played 9 lines at 2 cents each for 18 cents a spin. To her dismay it was a loonie machine, so she got one play...haha! Anyways after all that we had a quick bite to eat in the casino restaurant and headed back to the hotel to rest for the night before a day full of tests tomorrow. 

The Beginning.....January 12, 2012

Today I had my first appointment up in Edmonton at the University of Alberta Hospital to meet with one of the transplant doctors after being referred for transplant by Dr. Parkins in Calgary. I met with Dr.Weinkauf for the first time today. He was a great doctor who gave us a lot of information about transplant and really got to know me. My FEV1 is still at 41 currently, but transplant is definitely in my future as I have been declining due to this rare bacteria that I have somehow caught. I guess catching this bug you can say was very bad luck. So after this appointment I will be coming back up to Edmonton for a 5 day transplant workup and assessment. During this week I will undergo many different tests that the doctors will then look at and decide if I am a good candidate for transplant at this center.