Getting The Call

This is the first part of the retelling of my transplant journey.

Let me set the stage...

My husband and I had just returned home from a stay in Edmonton on Saturday afternoon (July 24th). My husband mowed the grass which was out of control and then made dinner. I was exhausted, and despite the piles of laundry and things to unpack, I went to bed early. That's something I rarely do, but I thought, if anything happens, all I need is a little sleep. My husband stayed up to watch TV. At 2:50am the phone rang. I didn't get to it in time, but I saw the Edmonton area code and caught the tail end of the message that was being left by the transplant coordinator. Instantly my cell began ringing and my husband answered and then passed it to me. It was The Call. They had lungs for me.

I sat at the top of the staircase and was shaking during the phone call. We discussed all of the details and then the flight team phoned right afterwards. My husband was like a whirlwind running past me from floor to floor, pulling together our transplant must-haves. My bag has been packed for six months, but I had a list of last-minute things to grab like the camera, iTouch and pills. For himself, my husband just rezipped his bag of dirty clothes that just made it back from Edmonton. Once that was organized, my husband started making phone calls to our family.

We were expecting the paramedics in about half an hour, but they arrived in about 15 minutes. It felt like the roar of the diesel engine could be heard for miles as they approached! They were super friendly, and my husband had actually worked with one of them in the past. One took my vitals while the other helped my husband take our bags to the truck. They patiently waited while I updated my facebook status through tears. I could hardly remember what words I had strung together, but I did alright. My status read:

JUST GOT THE CALL! The ambulance is here and I am off to Edmonton to start my next amazing adventure!!! Lung transplant, here I come!
July 25 at 3:31am

One more hug for the dog, and we were off! I had an IV started before the ambulance started moving, first try. We got instructions to go hot, so it was lights and sirens to the airport! The flight team was ready and waiting outside a small hangar. It was a small plane, and my husband could have reached across to touch both sides at the same time. Again, the flight crew of four were super friendly and professional. I was allowed one picture before take-off.

It was a really fast trip! It was an amazing view- out of the window to my right was a gorgeous full moon. On my left, there was a lightning storm in some far off clouds that lit up the night. We had a super smooth flight and a perfect landing.

The Edmonton EMS crew was waiting for me on the tarmac. They were also super nice. I sat on the stretcher and was loaded into a brand new ambulance. We checked into the hospital and went straight to the transplant floor for a work up and to wait.

It was procedure to be put into full isolation until we ruled out the usual superbugs, so everyone coming into my room had to mask, gown and glove.

We were soon joined by most of my family. My mom and her husband, my sister and brother in law, my sister and my dad. My husband's parents were already on the road and made the 5am ferry to mainland. They would arrive while I was in ICU.

The waiting part went better than I thought. We had lots of time for talk, for tears, for laughter, and for getting ready. As the surgery time grew closer, the more excited and the more nervous I felt. My husband did a great job to comfort and hold me. We met the surgeon and one of my transplant doctors came for a chat. The nurses were so caring and competent. I had a couple of IV bags started. I had bloodwork and tests and my last shower with that special soap. The funniest thing was trying to get out my earring. It's one of those hoops that you need pliers to open, but the best tool we had were kelly clamps. Let me tell you, it was the surgery before the surgery! My mom tried her best to pry it open, but it wouldn't cooperate. We taped it up instead.

I was given my first dose of immuno-suppressants. I begged to drink the whole cup of water. It had been about 20 hours since I had last had anything to eat or drink, so I was thirsty!

Then the moment came. At 4pm, I was ready to be taken to surgery. I hugged everyone and then my husband escorted me to the doors outside the operating room. It was a loooooooooong walk. Lots of tears. We said our 'I love yous' and then I was ready. And then we noticed I still had my glasses on so my husband had to come back and we had to part all over again. Then I was pushed through the big double doors.

Through the doors I was greeted by the anesthesiologist who reviewed a few things with me. I reminded him that I had a port-a-cath in my chest that I'd like to keep. Then through the next set of doors into the OR.

I tried not to look around. I was still crying silent tears but I was happy. I was ready. I saw a few people in green off to the side counting supplies on a table. I saw the two giant OR lights turned off above me. I transferred onto the table and chatted with the anesthesiologists and ensured them I was an Edmonton Oilers hockey fan. I thanked them and asked them to thank everyone else for me.

And that's all I remember with my old lungs.

Called. Transplanted. Discharged.

It happened! I got my call on Sunday, July 25th at 2:50am. I can hardly believe it! The past two weeks have been the most amazing of my life, hands down. The transformation, the recovery, and all the love I felt. After spending about 14 hours in ICU, I was transferred to the transplant step-down unit where I could see huge improvements every single day. I feel so lucky to be on this side of life. It was such a positive experience- challenges and all.

Today I was discharged! It was emotional. It was perfect. My three support people (my husband, mom and sister-in-law) and I celebrated with pizza and cupcakes at our hotel! My first round of transplant meds are done! Just finishing up some Tobi before checking my bedtime blood sugar and consulting my new sliding scale. I hope I sleep okay tonight. I have been so excited the last two nights that I barely slept. My nurse kept laughing that I was like a little kid at Christmas. A little kid that got the best present ever!

My wonderful husband provided updates over facebook over the last two weeks, but I want to record my journey here as well. I will try to add a bit every day.

I also heard that Cystic Gal got her transplant. Sending lots of positive healing vibes and love your way CG!

Summer Fun

It's been a pretty good week. This time leaving the hospital (two weeks ago), I didn't feel nearly as well as the previous time. I am feeling decent now as the shakiness is gone and my appetite continues to improve.

I have worked my way back to my full exercise program (except for the treadmill part- only at 15 of 30 minutes). For the first time in over a year, my muscles are sore from exercising! I love saying that! Usually my muscles are sore from coughing, not working out. What a great feeling!

I finally gave in and returned my Evergo concentrator. It was very hard to part with my reliable, convenient little buddy. However, 6LPM on pulse doesn't cut it anymore. I have dreaded switching back to tanks, but it was necessary. I now have a continuous high flow regulator and size E tanks. Those are the big awkward ones that are barely stable sitting upright. I have both a single and double cart to pull the tanks. Ugh.

I have spent the last couple of days hanging out with my sister-in-law, nephews and niece. I had a wonderful time with them, and we even went to a couple of fun attractions. I haven't been to places like that for such a long time. Armed with a wheelchair rental (with single oxygen tank holder) and the double cart, I had O2 for about three hours at a time. That's right, one hour per tank... what a pain! Anyways, my sister-in-law pushed me in the chair while the kids took turns pulling the O2 cart. They were such great helpers and the novelty didn't wear off! I went through 30 tanks this week! What a hassle! My sister-in-law never complained about hauling the tanks and chair in and out of the car. Plus, she is one of the very few people who understands my needs and is thoughtful about how she can make things easier for me. That means I can relax and enjoy myself! I am happy to spend so much time with them and have a change of scenery! Now it feels like Summer!

A Special Day

Last week in hospital there was one day that stood out as special. That's the best way to describe it. It was out of the ordinary because of a couple of things that happened...

1. While I was eating my breakfast, one of my favorite nurses came in. He had recently brought his wife over to Canada after a two year long effort. It was a huge victory for him. That morning, he took the bracelet off his wrist and said that he wanted me to have it. He explained that it's made of red coral and it absorbs bad karma so only the good karma gets to you. In his hometown, these bracelets are often given at important times in one's life. It touched my heart that he gave it to me.

2. One of my favorite physios did my evening treatment. We had a heart to heart and talked about how things like transplant really show you who your friends are. She had a health crisis in university and could relate to some of the things I'm going through. It meant a lot to have that conversation with her.

3. One of my friends and his mom came to visit me. My friend is one year post-transplant (with CF) and is doing fabulous! He has been a huge source of encouragement, information and support for both myself and my husband. We got to know each other within the last year but it feels like we've been friends forever. Because of our CF and attitude towards it, we have so much in common. We talked a lot about transplant and talked about my friend who had the dry run a couple of weeks ago. At one point in the evening, I looked out the window and there was the most brilliant rainbow. It was stunning. We talked about how that could be a sign.

It turns out the rainbow was a sign, but not for me. My friend who had the dry run got her call that evening. She was flown to Edmonton and had her surgery the next morning. She's doing well! I am so happy that she had her transplant. I haven't mentioned this yet, but I have a feeling that she was ahead of me on the list. I think we're the same blood type and height. Which means that I am now closer to the top of the list. It's exciting and scary at the same time!

Six Month Follow Up Appointment

It's been six months since I was listed for transplant and time for a routine visit. I saw the doctors and did a six-minute walk test. The doctors seemed surprised that I haven't had my call yet. They have experienced a bit of a drought and things have recently picked up again with three surgeries last week. That brings the year-to-date total up to 21. The doctors seem to think that I will get my call before my next follow-up appointment in three months.

I was looking forward to hearing the results from the GI tests that I did in May. It showed that I have above average acid reflux and my motility is about 50%. This won't delay my transplant, but it may lead to complications post. It wasn't fabulous news, but it wasn't a surprise either. I knew things weren't normal.

In the hotel elevator, a woman slipped in right before the doors were closing. She looked at me and my oxygen, and asked if I was in the physio program. I replied that I had already completed it and was here for a check up. She said her husband had just gotten a double lung transplant on Wednesday and then got off at her floor. What are the chances?!?

Heading Home

Dreams of an early discharge didn't happen this week. I should be going home tomorrow though. It feels like it's been a long week because the hospital Internet has been down for a couple of days and it made me feel isolated!

Basic hospital admission... things have been pretty smooth except for my port care. It was determined that I had to get the nurses on the floor to access and change my port needle, as opposed to the nurses in the home IV clinic who I know and trust. Sure enough, between my two port needles, I had seven pokes, no flushes, no heparin and one problem port. After my port refused to give blood return and would hardly flush, we called in the experts and had to use TPA for the first time. I was nervous, not to mention annoyed that this happened in the first place! I'm glad that the TPA worked and cleaned out the junk in my port. It's working like a charm now!

It's interesting that after the last two years, my view of the hospital has changed. I still feel a bit defeated when I get admitted, but I now feel safe here. I know I am going to get better. It's actually comforting. How much has changed in two years!

Happy Canada Day!

I spent my Canada Day in the hospital. I was admitted yesterday because I was short of breath, and doing more choking than coughing. I definitely need some IVs and lots of physio. It's been exactly one month since I was last discharged. This is getting very predictable! It's too bad because I had two very good weeks after I left the hospital last. And then I had two terrible weeks, and I blame the bowel obstructions for setting me back! I couldn't do physio or even cough properly while I had so much abdominal pain. Hopefully I will leave on home IVs early next week.

I thought I'd have an awesome view of the fireworks tonight, because I have a very nice view of the downtown skyline from my room. No such luck! The fireworks were so low, I could hardly see them. Oh well. Happy Canada Day!

My thoughts are also with Pam today, who got her call this afternoon. I look forward to hearing more about how she's doing. Pam, you'll do great!