And life keeps moving on. Things are going well, and I feel like I'm back to living real life. The only thing different is the work aspect. I used to work full-time, until July 2009 when I had to go on disability. I have another nine months off before my tentative return to work date, which makes it two years post-transplant and three years total away from work. Today I was invited to my annual work retreat to talk about my journey. My co-workers were so welcoming and excited that I was coming. Lots of people said I look great... which I always appreciate! It does make me wonder how lousy I looked pre-transplant though! I miss my co-workers. But in other ways, it's hard to imagine going back to work. The long stressful days with little time left for work-outs would be tiring. And the germ factor totally creeps me out. Everyone comes to work sick at times, but with no immune system that would be a losing battle.
I am happy about life in general, my health, and the future. I know how lucky I am where I am now. I still have so many things that I want to experience and accomplish. I still mull over what my purpose is... to share my story? To speak to groups? To volunteer and spread the word for CF and Organ Donation? I already promised myself that when I had my transplant, I wouldn't jump off the CF train. That's the whole reason I needed a transplant in the first place! I see some inspiring other CFers through their blogs, like Piper, and I think that's an incredible gift. I see others starting families, which is a miracle in itself. I see others surviving all kinds of odds and winning the fight to stay alive. I just wonder what my contribution will be.
One of the things I'm looking forward to is the next Canadian Transplant Games. They will be in Calgary in July 2012 and I'm pumped. I have no idea what I want to compete in, besides badminton. My friend and I agreed to compete in doubles before she even got her new lungs. That leaves four more sports to choose. Good thing I have lots of time to decide still!
Nova Scotia has started talking about new legislation around organ donation. They will be allowing donor families and recipients to legally meet, once certain conditions are met. There have been lots of articles and news stories surfacing because of this, which is great awareness. Although I wrote my donor family a letter exactly a year ago, I haven't received one back. Of course, I have to respect their privacy and grieving process... but a part of me will always wonder who was the original owner of these amazing lungs. Either way, I am forever grateful for this wonderful gift of life.
Showing posts with label lung transplant. Show all posts
Showing posts with label lung transplant. Show all posts
Wednesday, October 26
Saturday, July 23
Long Overdue Update
This update is long overdue - sorry to keep you hanging. I've been busy these last five months, and my one-year transplantiversary is in two days. I have often thought about blogging... but I usually write the post in my head and that's where it ends.
Last night, my husband and I ended up taking a trip down memory lane. We looked at pictures of my hospital stay post-transplant and I started to think about my blog. I started to read through it... and I'm glad to have it as a record. It was an emotional night though... it has been quite the journey to get to this point!!!
Let's start with the most important, I've been healthy! My check-ups have been about two months apart now and there have been no new issues. My diabetes is still annoying, with high sugars every evening, no matter what I do. My insulin injections sites still bruise, swell and cause scar tissue easily. The ring of tissue around my one anastomosis site is better, but still makes my breathing noisy when I exercise. I think it's because it didn't heal perfectly smooth, so the air bumps around when I breathe heavily. Both things are very minor and I'm feeling great!
I figure that I've been in a rebuilding phase since I last posted. I have spent time focusing on a couple of things: rebuilding myself physically, rebuilding relationships and rebuilding my surroundings.
So, I have been keeping up my daily workout. I do a walk/run every day. Lately, I've been doing it outside with my dog, which is the best. This week I actually doubled up my run! I also do weights daily, alternating between upper and lower body exercises. In March, I started going to field hockey practices. I was extremely cautious at first, letting the others players know to watch out for me. Games started outdoors in May, and I have been playing hard! I love being back! The other night, a player from the opposite team said I was too fast! I totally thought she was talking about someone else... I was so confused!
I have also spent a lot of time visiting with my friends and family. I love being the Auntie I want to be again. I have done all sorts of things with my nephews and niece, including babysit them (which I couldn't do alone before). I have been seeing a couple of friends on a regular basis, and they both have young children. So, as long as they're all healthy, we get together for lunch and outings. I have visited my old office a couple of times and lunched with my co-workers too! My husband and I have spent so much quality time together. It is absolutely priceless!
I have also devoted some time to the house. After two years of having no time or energy for it, things weren't the way I wanted them. You know, clutter, unfinished (or yet to be started) projects, and things lost their function. Continuing our renos will wait until the fall, but lots has been taken care of in the meantime. I have decluttered, organized, cleaned, donated clothes and household items (to Diabetes), had the house interior painted, had a garage sale for CF (our first and probably last... ugh... ) and more.
Other important things to note include our CF fundraisers. Again, we had a team of our favorite people participate in Great Strides. About 30 of us walked and raised $8700 for CF! Even more exciting... my husband participated in GearUp4CF! If you remember, last year, a woman by the name of Kitty rode her bike from Vancouver to Banff (for me) to raise money for CF. This year, my husband decided to do it. Since we overhauled our lifestyle post-transplant, we have been eating well and exercising. He is no exception! He purchased a road bike and started training. He is not a cyclist by any means, so riding a bike 1200km in nine days wasn't going to be easy! There were three mountain ranges to climb on the way, and the longest day was 190km. Plus the wind, rain, heat and exhaustion...
This year, the ride went in the opposite direction for the first time, from Banff to Vancouver. There were 14 riders along with four volunteers that drove the support vehicles and prepared lunch and snack breaks. My husband took his training seriously, and lost 50 pounds in the process. He also took the fundraising portion seriously. Each rider was expected to raise $5000 to participate. My husband won the Top Fundraiser Award, raising over $17,100 for CF! Along with personal donations from friends and family, we held a Beer & Burger Night at a local pub. With ticket sales and the silent auction, we raised $10,000! People were so generous and the night was a huge success!
The awareness created for CF (and transplant) was also a big success. Our story appeared in the local paper, complete with pictures! We were also asked to appear on a local breakfast show. We were interviewed about the ride, CF and lung transplant. Despite being nervous, it went very, very well!
The ride was a life-changing experience for my husband. Every rider had a connection to CF - whether they were riding for a loved one or in someone's memory. It was as much of emotional journey as a physical one. I couldn't be prouder of my husband. He set a goal to take on a huge challenge, and he did an amazing job. For the first time in years, I got to see him do something for himself. Sure, CF ultimately benefited (and therefore me), but he has a new hobby and sport, and it's all his!
I drove out to Banff to see him off. Some of our family joined us, and we provided the entire cheerleading section for the riders. All of the other riders had flown from their hometowns, so they didn't have any loved ones to see them off. I followed the riders to the first pit stop, cheering and taking pictures. The ride ended with a celebration at BC's Children's Hospital in Vancouver. I flew there with a couple of friends for the weekend. It was incredible to watch my husband, and the other riders I'd come to know vicariously, cross the finish line. It was an emotional reunion, and a truly inspiring day. I was asked to speak at the event, and I had the opportunity to thank all of the riders in my speech, plus share my story. I also met some very important people in the CF community, including Eva Markvoort's parents (Eva was in the documentary 65 Red Roses). It was a very special day.
In addition to the bike ride, which was one of the highlights for sure, we did a few other fun things. We went camping for the first time since 2008! It was awesome! The weather was hot, the mountains were beautiful and we loved being outside all day. Of course, I used ridiculous amounts of sunscreen, which is still so weird to me. I never used to burn! I also mowed the lawn a couple of times. My husband was out of town, so I figured why not? I had never mowed the lawn at our house before! I also went on my first hike in the mountains. It was harder than I thought, and I was frustrated that I was breathing heavier than everyone else. I still did it though! I also rode a bike for the first time, played baseball, flew on a plane, and painted the fence. My husband laughed when I asked him how to do it... but I had never painted before! I used to cough as soon as the paint can was opened, so I didn't even watch. It's totally different now!
So that's what I've been up to for the last few months. More thoughts on my one year anniversary coming up!
Last night, my husband and I ended up taking a trip down memory lane. We looked at pictures of my hospital stay post-transplant and I started to think about my blog. I started to read through it... and I'm glad to have it as a record. It was an emotional night though... it has been quite the journey to get to this point!!!
Let's start with the most important, I've been healthy! My check-ups have been about two months apart now and there have been no new issues. My diabetes is still annoying, with high sugars every evening, no matter what I do. My insulin injections sites still bruise, swell and cause scar tissue easily. The ring of tissue around my one anastomosis site is better, but still makes my breathing noisy when I exercise. I think it's because it didn't heal perfectly smooth, so the air bumps around when I breathe heavily. Both things are very minor and I'm feeling great!
I figure that I've been in a rebuilding phase since I last posted. I have spent time focusing on a couple of things: rebuilding myself physically, rebuilding relationships and rebuilding my surroundings.
So, I have been keeping up my daily workout. I do a walk/run every day. Lately, I've been doing it outside with my dog, which is the best. This week I actually doubled up my run! I also do weights daily, alternating between upper and lower body exercises. In March, I started going to field hockey practices. I was extremely cautious at first, letting the others players know to watch out for me. Games started outdoors in May, and I have been playing hard! I love being back! The other night, a player from the opposite team said I was too fast! I totally thought she was talking about someone else... I was so confused!
I have also spent a lot of time visiting with my friends and family. I love being the Auntie I want to be again. I have done all sorts of things with my nephews and niece, including babysit them (which I couldn't do alone before). I have been seeing a couple of friends on a regular basis, and they both have young children. So, as long as they're all healthy, we get together for lunch and outings. I have visited my old office a couple of times and lunched with my co-workers too! My husband and I have spent so much quality time together. It is absolutely priceless!
I have also devoted some time to the house. After two years of having no time or energy for it, things weren't the way I wanted them. You know, clutter, unfinished (or yet to be started) projects, and things lost their function. Continuing our renos will wait until the fall, but lots has been taken care of in the meantime. I have decluttered, organized, cleaned, donated clothes and household items (to Diabetes), had the house interior painted, had a garage sale for CF (our first and probably last... ugh... ) and more.
Other important things to note include our CF fundraisers. Again, we had a team of our favorite people participate in Great Strides. About 30 of us walked and raised $8700 for CF! Even more exciting... my husband participated in GearUp4CF! If you remember, last year, a woman by the name of Kitty rode her bike from Vancouver to Banff (for me) to raise money for CF. This year, my husband decided to do it. Since we overhauled our lifestyle post-transplant, we have been eating well and exercising. He is no exception! He purchased a road bike and started training. He is not a cyclist by any means, so riding a bike 1200km in nine days wasn't going to be easy! There were three mountain ranges to climb on the way, and the longest day was 190km. Plus the wind, rain, heat and exhaustion...
This year, the ride went in the opposite direction for the first time, from Banff to Vancouver. There were 14 riders along with four volunteers that drove the support vehicles and prepared lunch and snack breaks. My husband took his training seriously, and lost 50 pounds in the process. He also took the fundraising portion seriously. Each rider was expected to raise $5000 to participate. My husband won the Top Fundraiser Award, raising over $17,100 for CF! Along with personal donations from friends and family, we held a Beer & Burger Night at a local pub. With ticket sales and the silent auction, we raised $10,000! People were so generous and the night was a huge success!
The awareness created for CF (and transplant) was also a big success. Our story appeared in the local paper, complete with pictures! We were also asked to appear on a local breakfast show. We were interviewed about the ride, CF and lung transplant. Despite being nervous, it went very, very well!
The ride was a life-changing experience for my husband. Every rider had a connection to CF - whether they were riding for a loved one or in someone's memory. It was as much of emotional journey as a physical one. I couldn't be prouder of my husband. He set a goal to take on a huge challenge, and he did an amazing job. For the first time in years, I got to see him do something for himself. Sure, CF ultimately benefited (and therefore me), but he has a new hobby and sport, and it's all his!
I drove out to Banff to see him off. Some of our family joined us, and we provided the entire cheerleading section for the riders. All of the other riders had flown from their hometowns, so they didn't have any loved ones to see them off. I followed the riders to the first pit stop, cheering and taking pictures. The ride ended with a celebration at BC's Children's Hospital in Vancouver. I flew there with a couple of friends for the weekend. It was incredible to watch my husband, and the other riders I'd come to know vicariously, cross the finish line. It was an emotional reunion, and a truly inspiring day. I was asked to speak at the event, and I had the opportunity to thank all of the riders in my speech, plus share my story. I also met some very important people in the CF community, including Eva Markvoort's parents (Eva was in the documentary 65 Red Roses). It was a very special day.
In addition to the bike ride, which was one of the highlights for sure, we did a few other fun things. We went camping for the first time since 2008! It was awesome! The weather was hot, the mountains were beautiful and we loved being outside all day. Of course, I used ridiculous amounts of sunscreen, which is still so weird to me. I never used to burn! I also mowed the lawn a couple of times. My husband was out of town, so I figured why not? I had never mowed the lawn at our house before! I also went on my first hike in the mountains. It was harder than I thought, and I was frustrated that I was breathing heavier than everyone else. I still did it though! I also rode a bike for the first time, played baseball, flew on a plane, and painted the fence. My husband laughed when I asked him how to do it... but I had never painted before! I used to cough as soon as the paint can was opened, so I didn't even watch. It's totally different now!
So that's what I've been up to for the last few months. More thoughts on my one year anniversary coming up!
Tuesday, September 21
IV Room Happenings
Today turned out to be an interesting day. I started off the morning with my last IV dose of Meropenem (yay!) and then headed to lung transplant clinic. There my meds were adjusted to lower my immuno-suppressants. Another yay! I am especially pleased about my prednisone dose being lowered to 15mg. I really hope that'll help with my blood sugar control. Perhaps it'll help with my current food obsession! I want to eat all the time, even of I'm full! It's getting out of control!
It was also arranged that I would receive another Magnesium IV this afternoon. My Mag is still really low since transplant but I've been experiencing more muscle cramps lately. It was in the IV Room that I heard some good news- one of the CFers on the wait list got the call today and was waiting for surgery. I even got to talk to her mom this afternoon, which was really nice. I had originally met her during my six week program as our sessions overlapped. I know she's already had one dry run, so I'm hoping these lungs are right for her! My thoughts are with her tonight!!!
Last night on facebook, my status was:
Sandy knows seven CFers that are waiting for their double lung transplants at U of A. Seven! All under the age of 31. I hope they get their calls soon.
How cool is that?
Isn't it incredible the amount of CFers on the list? I imagine other centres are similar. I am taking a guess here, but based on the amount of transplants last year, CFers make up a fair percentage of the wait list and surgeries. Maybe up to 15-20%. Of course, those seven are only the ones I've met and there could be more. I had no idea how many of us are out there, looking for lungs!
I came across this article about a personal story of CF and transplant. You may have already seen Surviving Cystic Fibrosis in Maclean's, but if not, I found it very interesting. I totally remember this girl as a poster child for CF.
I am so hopeful for a cure for CF. I want others to experience something so profound. On the other hand, it didn't come in time for me. I can't deny that I crossed the line where my lungs were so damaged that a miracle cure wouldn't be enough. I needed a transplant. A different kind of miracle. One of love and hope on my side, and sorrow and loss on the other. I hope my donor family can take comfort in the fact that they chose to donate their loved one's organs. There are lives that they are responsible for saving and changing, including mine!
Here in Alberta, there is no registry. There are no websites to sign up as an organ donor. Sure, you can sign the back of your health care card. But it is ultimately up to your loved ones, your next of kin. They can veto anything you've signed regarding your organ donation wishes. It is so important for them to know and understand your wishes so they fulfill them. I can't stress that enough! I've seen several sources saying that Alberta has the lowest donor rate in Canada, yet the U of A Hospital does the second-most lung transplants in the the country. Interesting food for thought...
It was also arranged that I would receive another Magnesium IV this afternoon. My Mag is still really low since transplant but I've been experiencing more muscle cramps lately. It was in the IV Room that I heard some good news- one of the CFers on the wait list got the call today and was waiting for surgery. I even got to talk to her mom this afternoon, which was really nice. I had originally met her during my six week program as our sessions overlapped. I know she's already had one dry run, so I'm hoping these lungs are right for her! My thoughts are with her tonight!!!
Last night on facebook, my status was:
Sandy knows seven CFers that are waiting for their double lung transplants at U of A. Seven! All under the age of 31. I hope they get their calls soon.
How cool is that?
Isn't it incredible the amount of CFers on the list? I imagine other centres are similar. I am taking a guess here, but based on the amount of transplants last year, CFers make up a fair percentage of the wait list and surgeries. Maybe up to 15-20%. Of course, those seven are only the ones I've met and there could be more. I had no idea how many of us are out there, looking for lungs!
I came across this article about a personal story of CF and transplant. You may have already seen Surviving Cystic Fibrosis in Maclean's, but if not, I found it very interesting. I totally remember this girl as a poster child for CF.
I am so hopeful for a cure for CF. I want others to experience something so profound. On the other hand, it didn't come in time for me. I can't deny that I crossed the line where my lungs were so damaged that a miracle cure wouldn't be enough. I needed a transplant. A different kind of miracle. One of love and hope on my side, and sorrow and loss on the other. I hope my donor family can take comfort in the fact that they chose to donate their loved one's organs. There are lives that they are responsible for saving and changing, including mine!
Here in Alberta, there is no registry. There are no websites to sign up as an organ donor. Sure, you can sign the back of your health care card. But it is ultimately up to your loved ones, your next of kin. They can veto anything you've signed regarding your organ donation wishes. It is so important for them to know and understand your wishes so they fulfill them. I can't stress that enough! I've seen several sources saying that Alberta has the lowest donor rate in Canada, yet the U of A Hospital does the second-most lung transplants in the the country. Interesting food for thought...
Sunday, August 22
Milestones
Today is my one month transplantiversary already! I can't believe how quickly the time has gone by and how much has changed!
One month ago I was living my old life. Spending hours on treatments. Too tired to do the things I wanted to. Spending all of my energy on breathing. Trying my best to maintain my health, despite the monthly decline and IVs. It was exhausting, and I can clearly see that now.
Now...
I can walk fast and far
I can walk and talk at the same time
I can talk and talk and talk
I can breathe without thinking about it
I can hold my breath when I walk past a smoker
I can stand while waiting for something
I can go into the grocery store and follow my husband up every aisle
I can kiss my husband again
I can take the stairs
I can shower without exhausting myself
I can think about the things I enjoy, like traveling again, finishing our house renovations, and going out to do stuff!
If I didn't have the scar to prove it, I wouldn't believe it! My life has changed so much. It's incredible. My PFTs are in the mid-nineties. It is a miracle.
My husband and I also celebrated our sixth wedding anniversary on Saturday. Big weekend, I know! We usually travel somewhere different every year, and my husband always does the planning. Except for this year! Looks like I 'arranged' our trip this year! And we honestly wouldn't want to be anywhere else.
We got tickets to Cirque du Soleil Alegria which was in town. That was our first time going to one of their shows. We also had dinner at a nice restaurant with excellent food. My husband surprised me with a gift- a beautiful watch that has lots of meaning behind it. I am so lucky!
What a weekend!
One month ago I was living my old life. Spending hours on treatments. Too tired to do the things I wanted to. Spending all of my energy on breathing. Trying my best to maintain my health, despite the monthly decline and IVs. It was exhausting, and I can clearly see that now.
Now...
I can walk fast and far
I can walk and talk at the same time
I can talk and talk and talk
I can breathe without thinking about it
I can hold my breath when I walk past a smoker
I can stand while waiting for something
I can go into the grocery store and follow my husband up every aisle
I can kiss my husband again
I can take the stairs
I can shower without exhausting myself
I can think about the things I enjoy, like traveling again, finishing our house renovations, and going out to do stuff!
If I didn't have the scar to prove it, I wouldn't believe it! My life has changed so much. It's incredible. My PFTs are in the mid-nineties. It is a miracle.
My husband and I also celebrated our sixth wedding anniversary on Saturday. Big weekend, I know! We usually travel somewhere different every year, and my husband always does the planning. Except for this year! Looks like I 'arranged' our trip this year! And we honestly wouldn't want to be anywhere else.
We got tickets to Cirque du Soleil Alegria which was in town. That was our first time going to one of their shows. We also had dinner at a nice restaurant with excellent food. My husband surprised me with a gift- a beautiful watch that has lots of meaning behind it. I am so lucky!
What a weekend!
Wednesday, August 18
Week Two on the Outside
My second week as an outpatient has gone pretty smoothly. It helped to have a quiet weekend to rest. All of my other support people had gone home by Thursday so it was just my husband and I. We enjoyed our long walks, long chats and some TV time. We had my friend and sister visit on Sunday. I also enjoyed my first post-transplant diet coke, slurpee and piece of candy. Not all at once of course. But all in moderation!
The performance anxiety I had been experiencing subsided as I practiced my new routine. I have the hang of all the meds and now that I have my new phone, I feel less stressed about knowing what time it is.
My back and shoulders loosened up over the weekend and I am much more comfortable. The heating pad is still something I look forward to every day. I am taking one extra dose of Tylenol 3 to help as well.
The hospital routine is still challenging everyday because it isn't a routine. On Monday, I waiting and hour and 15 minutes after my appointment time to get my port accessed again and my bloodwork drawn. Luckily we had a bit of a buffer before my next dose of Tac was due. Then it was off to the PFT Lab, where the computers were down. So, there was another unexpected wait. But it was all worth it when I rocked my PFTs! I was positively beaming all day. I was so proud of my numbers. I have never seen anything like it. I think I am a bit ahead of the curve, with a FVC of 87% and an FEV1 of 91%! I still can't believe it. Only three weeks out of transplant!
Tuesday was also a long wait at the clinic. It was another positive visit. My magnesium levels have come up a touch and I also had the sutures from my six chest tubes removed. Progress!
I have been improving every single day. I feel stronger. I have more energy. I can walk faster and further. I can climb stairs. I can think about the things I enjoy again. I am excited about life!
The only downer all week has been hearing other lung transplant patients talk about my progress like I'm not even there. It happened twice in two days. We each need to walk our own path and we all came from different places. This transplant journey is an individual and unique one. I worked hard before my transplant to be in the best shape possible. I exercised and ate as much as I could! I prepared myself mentally and emotionally. I did my research. And now, after transplant, I continue to try my best. I want to excel and honor these amazing new lungs. I want to start my new life on the right foot. I have been lucky, I feel blessed, I have worked hard, and I feel like everything is falling into place after such a challenging last year and a half. It's frustrating that other people openly express their jealousy. I guess I wasn't expecting it out loud.
I want to be an inspiration and help motivate others.
The performance anxiety I had been experiencing subsided as I practiced my new routine. I have the hang of all the meds and now that I have my new phone, I feel less stressed about knowing what time it is.
My back and shoulders loosened up over the weekend and I am much more comfortable. The heating pad is still something I look forward to every day. I am taking one extra dose of Tylenol 3 to help as well.
The hospital routine is still challenging everyday because it isn't a routine. On Monday, I waiting and hour and 15 minutes after my appointment time to get my port accessed again and my bloodwork drawn. Luckily we had a bit of a buffer before my next dose of Tac was due. Then it was off to the PFT Lab, where the computers were down. So, there was another unexpected wait. But it was all worth it when I rocked my PFTs! I was positively beaming all day. I was so proud of my numbers. I have never seen anything like it. I think I am a bit ahead of the curve, with a FVC of 87% and an FEV1 of 91%! I still can't believe it. Only three weeks out of transplant!
Tuesday was also a long wait at the clinic. It was another positive visit. My magnesium levels have come up a touch and I also had the sutures from my six chest tubes removed. Progress!
I have been improving every single day. I feel stronger. I have more energy. I can walk faster and further. I can climb stairs. I can think about the things I enjoy again. I am excited about life!
The only downer all week has been hearing other lung transplant patients talk about my progress like I'm not even there. It happened twice in two days. We each need to walk our own path and we all came from different places. This transplant journey is an individual and unique one. I worked hard before my transplant to be in the best shape possible. I exercised and ate as much as I could! I prepared myself mentally and emotionally. I did my research. And now, after transplant, I continue to try my best. I want to excel and honor these amazing new lungs. I want to start my new life on the right foot. I have been lucky, I feel blessed, I have worked hard, and I feel like everything is falling into place after such a challenging last year and a half. It's frustrating that other people openly express their jealousy. I guess I wasn't expecting it out loud.
I want to be an inspiration and help motivate others.
Friday, August 13
Discharge & My First Week as an Outpatient
I was discharged on Monday, August 9th after two weeks in the hospital. It was probably the most exciting day for me since our wedding. There was similar anticipation and significance. I hardly slept the previous two nights because I was so excited. Every time my night nurse would look into my room, I was wide awake. She said I was like a little kid at Christmas. A little kid with the best present ever!
Discharge Day is always a crazy busy day and I spent most of the day on my feet. It was my busiest day yet! It felt glorious to walk out of the hospital to our new digs. We took lots of pictures because I want to remember this milestone. Or maybe I needed proof!
My new outpatient routine is:
Mondays & Thursdays: Bloodwork, PFTs, Physio & OT
Tuesdays & Fridays: Lung Tx Clinic, Physio & OT
Wednesday: Physio & OT
This week everything went fairly smoothly. I spent a lot of time worrying about it though. I am totally obsessed with the time now, which is pretty much a 180. I am paranoid about missing my immuno-suppressants. I was overwhelmed with everything new, and it made for a hard day on Tuesday. I'm going to call it performance anxiety. I was so good at my old routine, with my old body, and now we've changed it all up. I want to be good at this too.
My blood sugar has a huge spike in the late afternoon when the long-acting insulin wears off and the prednisone effect hasn't. I had an appointment with the Diabetes Clinic and they adjusted my sliding scale once again. This time, we are going to increase the short-acting insulin scale at lunch to combat that prednisone high.
Highlights this week:
- My best friend drove up to have lunch with me. It was the first time we saw each other since my transplant. It was also the first time she's been away from her baby for the whole day. Best lunch ever! There were lots of happy tears and great talk about this whole journey. Her support means so much to me.
- Going for a long walk with my husband. We walked about 10 blocks tube-free. I could walk and talk at the same time!!! And I could keep up! And no rests or breaks!
- Alone time, just my husband and I. All of my other fantastic support have gone home for now, so it's just the two of us. It feels great to talk about everything that's happened and start our new life together.
-I got a blackberry and all of my meds and appointments are already programmed in. I was considering the iPhone, but I already have an iTouch and I really like that instant messenger feature on the blackberry. Now my husband and I can connect anytime for free!
Discharge Day is always a crazy busy day and I spent most of the day on my feet. It was my busiest day yet! It felt glorious to walk out of the hospital to our new digs. We took lots of pictures because I want to remember this milestone. Or maybe I needed proof!
My new outpatient routine is:
Mondays & Thursdays: Bloodwork, PFTs, Physio & OT
Tuesdays & Fridays: Lung Tx Clinic, Physio & OT
Wednesday: Physio & OT
This week everything went fairly smoothly. I spent a lot of time worrying about it though. I am totally obsessed with the time now, which is pretty much a 180. I am paranoid about missing my immuno-suppressants. I was overwhelmed with everything new, and it made for a hard day on Tuesday. I'm going to call it performance anxiety. I was so good at my old routine, with my old body, and now we've changed it all up. I want to be good at this too.
My blood sugar has a huge spike in the late afternoon when the long-acting insulin wears off and the prednisone effect hasn't. I had an appointment with the Diabetes Clinic and they adjusted my sliding scale once again. This time, we are going to increase the short-acting insulin scale at lunch to combat that prednisone high.
Highlights this week:
- My best friend drove up to have lunch with me. It was the first time we saw each other since my transplant. It was also the first time she's been away from her baby for the whole day. Best lunch ever! There were lots of happy tears and great talk about this whole journey. Her support means so much to me.
- Going for a long walk with my husband. We walked about 10 blocks tube-free. I could walk and talk at the same time!!! And I could keep up! And no rests or breaks!
- Alone time, just my husband and I. All of my other fantastic support have gone home for now, so it's just the two of us. It feels great to talk about everything that's happened and start our new life together.
-I got a blackberry and all of my meds and appointments are already programmed in. I was considering the iPhone, but I already have an iTouch and I really like that instant messenger feature on the blackberry. Now my husband and I can connect anytime for free!
Step-Down Unit
I arrived on the transplant floor Tuesday afternoon, about a day and a half after surgery. I had a private room because I was still in isolation. The first thing I did was sit in one of the chairs. Ah, a change of position felt good.
I went on my first walk soon after. I still can't believe that the body can get up and go with all of those chest tubes, drugs, lines, and the trauma of major surgery.
It was a challenge to learn how to breathe normally. It was very irregular at first, and the more I thought about it, the harder it got. After a couple of days I didn't need to think about it anymore, it was natural. Coughing was also a challenge. I couldn't figure it out! Coughing used to be my signature! I had to ask my husband to demonstrate so I could copy him. It took a whole week before I could get out one little secretion! And so much effort!
I spent a lot of time with my family. Everyone took turns hanging out with me, which is what passes the time for me. As I became more independent they abided by the visitor hours so that I could push myself to do more things on my own.
We had to quickly create some strict rules around eating for me:
1. No sleeping while eating
2. Sit up while eating (feet on the floor)
3, Stay sitting up for at least half an hour after eating
4. No eating alone
5. No swimming before eating. (Yes that's backwards... but it was my contribution while I was on morphine!)
The nursing staff were amazing. They were so caring, professional, experienced and knowledgeable. A lot of the staff were around my age, so we had lots in common. It was like I was surrounded by old friends. The truly are a special group that work together very well. I haven't seen anything like that in a hospital before. I felt so lucky to be in their care.
One of my nurses and nursing attendants washed my hair for me in bed. It was better than the spa! I felt so pampered, and I know that they don't do that for everybody. My mom redid my braids afterwards and I felt so good.
One day during lunch I tried to catch the rainbows I was seeing. I reached to the right of my tray and over to the left. I didn't think anything of it until I saw everyone staring at me! It must have looked pretty crazy. One of the drugs made me see rainbows in my peripheral vision, and I had the urge to catch them!
I was able to go for more walks every day. I could walk further and faster.
Mentally, turning off my oxygen was a huge challenge. I knew it would be. My husband had already been trying to prepare me. It was my lifeline for years. I was nervous at first when the oxygen was turned down I couldn't hear the oxygen hissing anymore. I was nervous again when I would check the cannula and not be able to feel the oxygen because it had been turned down even more. Finally, one of my nurses came in and said that I had been on room air for the last hour and half! I couldn't believe it! My oxygen had been turned off! I was okay! I took off my cannula for a few minutes to celebrate. Then I put it back on. For security. I wore it all night, just in case my sats went down and they had to turn it back on at night. I was fine overnight, so the next morning I took it off and threw it away. Freedom.
Over these 12 days there were many more firsts: OT, physio in the gym, walk outside, time being line-free, shower, day pass for date night, and germ freak out in a crowd.
I found this to be such a positive experience. I can't explain it, but I woke up with a very positive, let's-get-this-done attitude. I could see improvements every single day. It was so encouraging and so incredible.
That's what I remember from my time on the step-down unit.
I went on my first walk soon after. I still can't believe that the body can get up and go with all of those chest tubes, drugs, lines, and the trauma of major surgery.
It was a challenge to learn how to breathe normally. It was very irregular at first, and the more I thought about it, the harder it got. After a couple of days I didn't need to think about it anymore, it was natural. Coughing was also a challenge. I couldn't figure it out! Coughing used to be my signature! I had to ask my husband to demonstrate so I could copy him. It took a whole week before I could get out one little secretion! And so much effort!
I spent a lot of time with my family. Everyone took turns hanging out with me, which is what passes the time for me. As I became more independent they abided by the visitor hours so that I could push myself to do more things on my own.
We had to quickly create some strict rules around eating for me:
1. No sleeping while eating
2. Sit up while eating (feet on the floor)
3, Stay sitting up for at least half an hour after eating
4. No eating alone
5. No swimming before eating. (Yes that's backwards... but it was my contribution while I was on morphine!)
The nursing staff were amazing. They were so caring, professional, experienced and knowledgeable. A lot of the staff were around my age, so we had lots in common. It was like I was surrounded by old friends. The truly are a special group that work together very well. I haven't seen anything like that in a hospital before. I felt so lucky to be in their care.
One of my nurses and nursing attendants washed my hair for me in bed. It was better than the spa! I felt so pampered, and I know that they don't do that for everybody. My mom redid my braids afterwards and I felt so good.
One day during lunch I tried to catch the rainbows I was seeing. I reached to the right of my tray and over to the left. I didn't think anything of it until I saw everyone staring at me! It must have looked pretty crazy. One of the drugs made me see rainbows in my peripheral vision, and I had the urge to catch them!
I was able to go for more walks every day. I could walk further and faster.
Mentally, turning off my oxygen was a huge challenge. I knew it would be. My husband had already been trying to prepare me. It was my lifeline for years. I was nervous at first when the oxygen was turned down I couldn't hear the oxygen hissing anymore. I was nervous again when I would check the cannula and not be able to feel the oxygen because it had been turned down even more. Finally, one of my nurses came in and said that I had been on room air for the last hour and half! I couldn't believe it! My oxygen had been turned off! I was okay! I took off my cannula for a few minutes to celebrate. Then I put it back on. For security. I wore it all night, just in case my sats went down and they had to turn it back on at night. I was fine overnight, so the next morning I took it off and threw it away. Freedom.
Over these 12 days there were many more firsts: OT, physio in the gym, walk outside, time being line-free, shower, day pass for date night, and germ freak out in a crowd.
I found this to be such a positive experience. I can't explain it, but I woke up with a very positive, let's-get-this-done attitude. I could see improvements every single day. It was so encouraging and so incredible.
That's what I remember from my time on the step-down unit.
The Signs
Leading up to the call and surgery, my family, friends and I had noticed quite a few signs of things to come. I have always believed that the right lungs would come at the right time. I think all of the signs are pretty cool and I want to note them before I forget.
1. The Bracelet
Already explained in a past post, my favorite nurse had given me the bracelet off his own wrist. The bracelet absorbs the bad karma so only good karma reaches you. This was two weeks before the call during my last hospitalization.
2. Week in Edmonton
I had just had the best week all year. I was up in Edmonton with my husband and my sister-in-law, nephews and niece came up to take me places. I had so much fun and it renewed my spirit. It was so special to have that time with those I love.
3. I Am Ready
During that awesome visit with my sister-in-law, I finally admitted that I was ready for the call. I felt like I had put in my time with my end-stage CF and the quality of life that I could tolerate was slipping away. I needed things to change.
4. Full Workout Routine
During the last two weeks since my discharge, I felt good enough to build back up to my full workout routine. During that week in Edmonton I diligently went to the awesome hotel gym and went hard. It was worth every last lunge to get in good shape for surgery!
5. The Facebook Post
My husband had updated his status to read:
Blair is tired, bored of working so much and hopes that next week brings good things!
July 17 at 11:46pm
I was wheeled out of surgery exactly one week after this post, almost to the minute.
6. The Twins
My husband and I met 11 years ago at a house party hosted by two twins. He worked with one twin and I worked with the other. One night, we both ended up at their party and totally hit it off. Over time, we drifted apart from these girls but recently reconnected on facebook. July 25th was their 30th birthday.
7. Rainbows
I thought a rainbow would be my sign, and my best friend and I were just emailing each other about rainbows we had been seeing during my week stay in Edmonton. I happened to catch one, although it wasn't very impressive- not my sign. On the morning of my call, my sister-in-law saw a beautiful rainbow as she drove to Edmonton. That was my rainbow!
8. Famous Last Words
During dinner the night of the call, my husband said that he needed until Tuesday to get things organized at work. I couldn't believe he said that. I remember thinking, oh boy, don't make a big deal out of it...
9. Air Ambulance
Despite all of the time we had been spending in Edmonton, I had a feeling that I'd go by plane.
10. The Psalm
The morning of my call, my best friend was singing the psalm at church. It was all about faith and waiting for things to come and my friend thought of me the entire time she sang. By the time she got home from church, there was a message from me saying that I had gotten the call and was in Edmonton.
11. The Eagle
When my husband's Aunt heard news of my call, she was sitting on a patio on Vancouver Island and a bald eagle majestically flew right over top of them. Freedom!
12. 65_Red Roses
The documentary of Eva's lung transplant journey was shown on TV again. I knew it was scheduled for Monday night, but it also ran on Sunday night. I had lots of nurses come in and tell me they had just watched it and admired both Eva and I. I can relate to Eva and her transplant journey in so many ways.
Most Importantly:
I am not one to talk a lot about my relationship with God, but I can see how His plan was meant for me. Everything worked out perfectly. I was surrounded by those I love during my time of need. Somewhere, another family was saying their goodbyes and providing me with the most amazing gift I could ever receive. I am truly blessed.
1. The Bracelet
Already explained in a past post, my favorite nurse had given me the bracelet off his own wrist. The bracelet absorbs the bad karma so only good karma reaches you. This was two weeks before the call during my last hospitalization.
2. Week in Edmonton
I had just had the best week all year. I was up in Edmonton with my husband and my sister-in-law, nephews and niece came up to take me places. I had so much fun and it renewed my spirit. It was so special to have that time with those I love.
3. I Am Ready
During that awesome visit with my sister-in-law, I finally admitted that I was ready for the call. I felt like I had put in my time with my end-stage CF and the quality of life that I could tolerate was slipping away. I needed things to change.
4. Full Workout Routine
During the last two weeks since my discharge, I felt good enough to build back up to my full workout routine. During that week in Edmonton I diligently went to the awesome hotel gym and went hard. It was worth every last lunge to get in good shape for surgery!
5. The Facebook Post
My husband had updated his status to read:
Blair is tired, bored of working so much and hopes that next week brings good things!
July 17 at 11:46pm
I was wheeled out of surgery exactly one week after this post, almost to the minute.
6. The Twins
My husband and I met 11 years ago at a house party hosted by two twins. He worked with one twin and I worked with the other. One night, we both ended up at their party and totally hit it off. Over time, we drifted apart from these girls but recently reconnected on facebook. July 25th was their 30th birthday.
7. Rainbows
I thought a rainbow would be my sign, and my best friend and I were just emailing each other about rainbows we had been seeing during my week stay in Edmonton. I happened to catch one, although it wasn't very impressive- not my sign. On the morning of my call, my sister-in-law saw a beautiful rainbow as she drove to Edmonton. That was my rainbow!
8. Famous Last Words
During dinner the night of the call, my husband said that he needed until Tuesday to get things organized at work. I couldn't believe he said that. I remember thinking, oh boy, don't make a big deal out of it...
9. Air Ambulance
Despite all of the time we had been spending in Edmonton, I had a feeling that I'd go by plane.
10. The Psalm
The morning of my call, my best friend was singing the psalm at church. It was all about faith and waiting for things to come and my friend thought of me the entire time she sang. By the time she got home from church, there was a message from me saying that I had gotten the call and was in Edmonton.
11. The Eagle
When my husband's Aunt heard news of my call, she was sitting on a patio on Vancouver Island and a bald eagle majestically flew right over top of them. Freedom!
12. 65_Red Roses
The documentary of Eva's lung transplant journey was shown on TV again. I knew it was scheduled for Monday night, but it also ran on Sunday night. I had lots of nurses come in and tell me they had just watched it and admired both Eva and I. I can relate to Eva and her transplant journey in so many ways.
Most Importantly:
I am not one to talk a lot about my relationship with God, but I can see how His plan was meant for me. Everything worked out perfectly. I was surrounded by those I love during my time of need. Somewhere, another family was saying their goodbyes and providing me with the most amazing gift I could ever receive. I am truly blessed.
ICU Memories
My ICU memories are a bit fuzzy, but according to others I remember most of it. The surgery lasted 7.5 hours and I was wheeled into ICU around 11:30pm on Sunday, July 25th. The surgery went well, and the only unnerving part was that the lungs didn't arrive until much later than expected. From what I understand, they arrived around 7:30pm.
My husband was the only person that saw me in transit with a huge group of staff and even more IVs and lines. He said I looked dead. That must have been very scary for him. After about fifteen minutes, he and my family were allowed to visit me. I was on sedated and on the ventilator at first. Even though unconscious, I was still able to shake my head or nod to questions, particularly if my husband asked them.
My husband said the first thing I did was try to rip out the ventilator. Instantly my hands reached for it. I was restrained to prevent this. I still bucked off my blankets and tried my best to get at it!
I remember being quite comfortable in ICU. The most difficult part was coming off of the ventilator. Prior to this, I had a bronchoscopy that I don't remember at all. There had been some secretions in the right lung, but they couldn't tell if they were old or new, so they took some samples and cleaned it out. When they started to decrease the sedation and the ventilator settings to see how I was breathing with less assistance, I started gagging. I have such a sensitive gag reflex. Ugh. At one point I was rolled slightly on my side and I felt the tubes move and I couldn't get them in a comfortable place again. They kept suffocating me. I was so glad to get them out! I wasn't able to speak for a while because my throat was so sore, though I tried to whisper. I also used a laminated alphabet sheet to communicate, but I could hardly see it, let alone point to the correct letter. I relied on people guessing what I was trying to say and just confirming it. My sister in law was best at this game.
I remember bringing my hand to my face and looking and my nails. "My fingernails are pink!" Apparently I had done this several times before my sister-in-law told me that they already know!
I was soon eating jello and ice chips.
I really enjoyed having my family around me. I am a people person and am used to having company in the hospital. I dozed in and out of conversations which helped me through. One of my side effects was hearing conversations that didn't exist. I would hear something, want to respond, and then open my eyes to see that everyone in the room was asleep. Or else there were different people in the room that were supposedly talking. Weird. I also remember being really hot.
As I became more aware, I was already trying to figure out the routine tests that the nurses were doing. I was fascinated with the art tap, a line into the artery in my wrist that was used to check my blood gas on a regular basis. I was also really interested in the cardiac pressure test.
I was soon able to sit up, and later my physio came to stand me up for the first time. It was amazing how much fluid I gained in such a short time- almost 10 kg or 25 pounds!
Soon more IVs were discontinued and I was eating my first meal, soup and a roast beef sandwich. One of the fabulous nurses had braided my hair for me and tidied up all of my med lines down to only two IV poles.
I also remember my surgeon coming in to check on me. I couldn't thank him enough. I asked him what my old lungs looked like when he took them out. He said that they were really heavy and dense. They were full of infection. There was so much scarring that all of the airways were hard. Basically, he was surprised they were doing anything for me. He also said that my old lungs hadn't been adhered to my chest wall, which made removing them easier. He also said my new lungs were perfect!
I had two of my six chest tubes removed before I left ICU. Didn't feel a thing! I also had a PCA pump hooked up so I could press a button to get a morphine boost on demand.
I was so impressed with my care. Not only is the ICU facility state-of-the-art and only one year old, but the staff were incredible. The nurses were close to my age, but they were so experienced and professional. I was so lucky to be in their care.
On Tuesday afternoon at 3:30pm I left ICU to go to the transplant step-down unit. Another hurdle cleared!
My husband was the only person that saw me in transit with a huge group of staff and even more IVs and lines. He said I looked dead. That must have been very scary for him. After about fifteen minutes, he and my family were allowed to visit me. I was on sedated and on the ventilator at first. Even though unconscious, I was still able to shake my head or nod to questions, particularly if my husband asked them.
My husband said the first thing I did was try to rip out the ventilator. Instantly my hands reached for it. I was restrained to prevent this. I still bucked off my blankets and tried my best to get at it!
I remember being quite comfortable in ICU. The most difficult part was coming off of the ventilator. Prior to this, I had a bronchoscopy that I don't remember at all. There had been some secretions in the right lung, but they couldn't tell if they were old or new, so they took some samples and cleaned it out. When they started to decrease the sedation and the ventilator settings to see how I was breathing with less assistance, I started gagging. I have such a sensitive gag reflex. Ugh. At one point I was rolled slightly on my side and I felt the tubes move and I couldn't get them in a comfortable place again. They kept suffocating me. I was so glad to get them out! I wasn't able to speak for a while because my throat was so sore, though I tried to whisper. I also used a laminated alphabet sheet to communicate, but I could hardly see it, let alone point to the correct letter. I relied on people guessing what I was trying to say and just confirming it. My sister in law was best at this game.
I remember bringing my hand to my face and looking and my nails. "My fingernails are pink!" Apparently I had done this several times before my sister-in-law told me that they already know!
I was soon eating jello and ice chips.
I really enjoyed having my family around me. I am a people person and am used to having company in the hospital. I dozed in and out of conversations which helped me through. One of my side effects was hearing conversations that didn't exist. I would hear something, want to respond, and then open my eyes to see that everyone in the room was asleep. Or else there were different people in the room that were supposedly talking. Weird. I also remember being really hot.
As I became more aware, I was already trying to figure out the routine tests that the nurses were doing. I was fascinated with the art tap, a line into the artery in my wrist that was used to check my blood gas on a regular basis. I was also really interested in the cardiac pressure test.
I was soon able to sit up, and later my physio came to stand me up for the first time. It was amazing how much fluid I gained in such a short time- almost 10 kg or 25 pounds!
Soon more IVs were discontinued and I was eating my first meal, soup and a roast beef sandwich. One of the fabulous nurses had braided my hair for me and tidied up all of my med lines down to only two IV poles.
I also remember my surgeon coming in to check on me. I couldn't thank him enough. I asked him what my old lungs looked like when he took them out. He said that they were really heavy and dense. They were full of infection. There was so much scarring that all of the airways were hard. Basically, he was surprised they were doing anything for me. He also said that my old lungs hadn't been adhered to my chest wall, which made removing them easier. He also said my new lungs were perfect!
I had two of my six chest tubes removed before I left ICU. Didn't feel a thing! I also had a PCA pump hooked up so I could press a button to get a morphine boost on demand.
I was so impressed with my care. Not only is the ICU facility state-of-the-art and only one year old, but the staff were incredible. The nurses were close to my age, but they were so experienced and professional. I was so lucky to be in their care.
On Tuesday afternoon at 3:30pm I left ICU to go to the transplant step-down unit. Another hurdle cleared!
Wednesday, August 11
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.
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.
Monday, August 9
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!
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!
Monday, April 12
First Follow-Up Appointment
I had my first follow-up appointment with my transplant doctors today. It's hard to believe that my six-week program finished two months ago! We didn't think I'd need this appointment, but no lungs yet. It was nice to chat with the staff and visit some of the post-transplant people we know in the gym. Apparently my centre has done 11 lung transplants this year, so there were three that we didn't hear about. It sounds like I'm second or third in line for my blood type and size- so about the same as before.
All of last week I did my full workout routine, which felt great after being sick. I am already back up to 30 minutes on the treadmill. My motivation to exercise and stay fit for transplant has been really good. This is the most motivated I've ever been to work out!
I ended my IVs on Wednesday as planned at clinic. I also got to do this liver scan as part of a study, and my liver would be considered normal (not hard and damaged). That was good news.
Now that I have more energy than usual, I think I'm going to try to meet up with some friends this week. I would love to go for a sushi lunch (before it's forbidden) downtown with a friend , plus catch up with some friends on mat leave and lunch with my sister-in-law. That sounds ambitious but I'll try!
All of last week I did my full workout routine, which felt great after being sick. I am already back up to 30 minutes on the treadmill. My motivation to exercise and stay fit for transplant has been really good. This is the most motivated I've ever been to work out!
I ended my IVs on Wednesday as planned at clinic. I also got to do this liver scan as part of a study, and my liver would be considered normal (not hard and damaged). That was good news.
Now that I have more energy than usual, I think I'm going to try to meet up with some friends this week. I would love to go for a sushi lunch (before it's forbidden) downtown with a friend , plus catch up with some friends on mat leave and lunch with my sister-in-law. That sounds ambitious but I'll try!
Monday, January 11
It's Official!
Big news... I am now active on the wait list. I have moved from Status 0 to Status 2 (high priority). That means that if lungs are available I can get THE CALL. Currently, there is one person ahead of me with the same blood type and approximate size.
I can't believe it. I did not expect this to happen today at transplant clinic. Yesterday I wrote about how I have five more weeks to get used to the idea... and bam! Today I'm on the list. There's been a lot of tears today and I can't say it out loud without crying yet. I also fully expect to freak out every time my cell phone rings. I know I'll get used to the idea quickly. After all, it's official!
I can't believe it. I did not expect this to happen today at transplant clinic. Yesterday I wrote about how I have five more weeks to get used to the idea... and bam! Today I'm on the list. There's been a lot of tears today and I can't say it out loud without crying yet. I also fully expect to freak out every time my cell phone rings. I know I'll get used to the idea quickly. After all, it's official!
Wednesday, December 9
Feelings
Alright, I admit that I'm not that good at writing about my feelings. I prefer to talk about them. I've never kept a journal or diary before. I can see that most of my posts are about factual information, instead of how I feel. I'm working on that.
Yesterday was the first day I truly let myself get a glimpse of how my life will be post-transplant. I have been thinking about the waiting and the recovery, but rarely do I think about how good I will feel eventually. I was so excited about it last night that I couldn't fall asleep. I will be able to run again. I will be able to play my sports that I miss so much. I will be able to travel and work again. I will be able to walk and clean and go up stairs without needing breaks and feeling tired. I won't need to carry around my oxygen. I will feel like my old self again- with enough energy for myself and others.
I am starting to forget what that feels like. I feel like I can't be myself 100% because I don't have the energy. I really struggled with that earlier this year. I don't have the energy to be myself. I felt like a lame version of who I was. I have adapted now. I just have to prioritize and do the most important things. Eventually, I will be able to do it all.
I felt like I rejoined society again yesterday. After nine days in the hospital, and a few days at home before and after... I realized I hadn't been out in a while! I drove for the first time in winter conditions yesterday. I put on jeans and blow-dried my hair. I went to two stores to do a little shopping. It felt so good. I didn't notice how long I had been hidden away until I got out there!
Yesterday was the first day I truly let myself get a glimpse of how my life will be post-transplant. I have been thinking about the waiting and the recovery, but rarely do I think about how good I will feel eventually. I was so excited about it last night that I couldn't fall asleep. I will be able to run again. I will be able to play my sports that I miss so much. I will be able to travel and work again. I will be able to walk and clean and go up stairs without needing breaks and feeling tired. I won't need to carry around my oxygen. I will feel like my old self again- with enough energy for myself and others.
I am starting to forget what that feels like. I feel like I can't be myself 100% because I don't have the energy. I really struggled with that earlier this year. I don't have the energy to be myself. I felt like a lame version of who I was. I have adapted now. I just have to prioritize and do the most important things. Eventually, I will be able to do it all.
I felt like I rejoined society again yesterday. After nine days in the hospital, and a few days at home before and after... I realized I hadn't been out in a while! I drove for the first time in winter conditions yesterday. I put on jeans and blow-dried my hair. I went to two stores to do a little shopping. It felt so good. I didn't notice how long I had been hidden away until I got out there!
Friday, November 27
Good and Bad News
Good news first... I was accepted into the lung transplant program! I am going on the list with a 'Status 0' or 'not active.' I will hopefully be starting the six-week rehabilitation program in January. That will be confirmed at a later time, as the most sick people will be accommodated first. I am relieved to hear that I'm in and there's nothing wrong with me or my situation that prevents me from this opportunity.
Bad news now... I am back in the hospital. Six weeks after I finished my last course of IVs, I'm back. For the sixth time in the last year. I came in on Wednesday with shortness of breath (even at rest) and increased cough. It was a bit of a blow because I had been feeling well overall and I had been trying extra hard to exercise, etc. The last two days in hospital have been tough. I have been coughing up tons and exhausted from being SOB. This course of IVs only reinforces the decision to be in the transplant process. My lungs, as much as I like them, are doing their own thing and are beyond my control.
To end on a high note, more good news (ah, the sandwich technique)... I am so happy that Natalia in Toronto received a lung transplant. It sounds like she is well on the road to recovery already!
Bad news now... I am back in the hospital. Six weeks after I finished my last course of IVs, I'm back. For the sixth time in the last year. I came in on Wednesday with shortness of breath (even at rest) and increased cough. It was a bit of a blow because I had been feeling well overall and I had been trying extra hard to exercise, etc. The last two days in hospital have been tough. I have been coughing up tons and exhausted from being SOB. This course of IVs only reinforces the decision to be in the transplant process. My lungs, as much as I like them, are doing their own thing and are beyond my control.
To end on a high note, more good news (ah, the sandwich technique)... I am so happy that Natalia in Toronto received a lung transplant. It sounds like she is well on the road to recovery already!
Tuesday, November 17
The Big Issues
Well, I'm happy to report that procrastinating one day worked out well for me for getting the H1N1 vaccine. There was absolutely no line-up, so I was in and out in no time! I am also happy that 65_RedRoses was on tv last night. This version was well-edited, and had great impact while being very inspiring. I am so glad that my friends, family and co-workers watched it. I have appreciated every email, facebook post and phone call in response to the film. I think it really gave people an idea of what I'm going through.
Watching the film again made me examine where I am emotionally in the whole tx process. I think I have come a long way in the last few weeks since my last hospitalization. Going in last time was hands-down the worst I've ever felt. Being so short of breath scared me. My tx assessment appointment also helped me along. I think getting to see the hospital, meet the staff, and take the next step in the process was very beneficial. However, when I watch the film and see how excited Eva is to get the call and be wheeled into surgery, I realize I still have a little ways to go. I like to make lists, so here's a list of my hang-ups, in no particular order:
1. The pain. I have talked to others transplantees and most of them report that the pain was pretty well managed. It still freaks me out to think about the pain I might experience post-surgery. You'd think with all of the PICCs and IVs I've had that I'd get desensitized to the pain factor, but that's not the case. I think it's mostly psychological... but it's still there.
2. The anxiety of waiting and getting the call. I can't even imagine the tension of waiting and waiting and then getting the call. It's overwhelming to me. I try to imagine myself getting the call and being prepped for surgery, and the anxiety and significance of that time is almost too much.
3. How my family is and will be involved. I am lucky to have the most supportive husband ever. But some other family members worry me. I know everyone has to deal with this at their own pace, but I wonder about how much progress is happening. I have been very open and honest and have kept everyone up-to-date. But like I said, I don't know how far we're getting. For example, after convincing my dad to watch the film last night, he calls to ask if I have a pager and says he doesn't even know if I'm on the list or not. I also worry about how everyone will get along when we're living in Edmonton post-surgery and I don't have the capacity/energy to mediate between my support people. I still have some work to do here.
Alright, I think that's it, there's no #4. I am down to three issues. The first two are mine to get over as much as possible, but that third one will take some strategy. I am going have to think about it and make some decisions. I hate the stress of dealing with my family... it's hard to think how four people can be so... different? difficult? complicated? I don't even know how to describe it, but every family has their own issues and we're no exception.
Watching the film again made me examine where I am emotionally in the whole tx process. I think I have come a long way in the last few weeks since my last hospitalization. Going in last time was hands-down the worst I've ever felt. Being so short of breath scared me. My tx assessment appointment also helped me along. I think getting to see the hospital, meet the staff, and take the next step in the process was very beneficial. However, when I watch the film and see how excited Eva is to get the call and be wheeled into surgery, I realize I still have a little ways to go. I like to make lists, so here's a list of my hang-ups, in no particular order:
1. The pain. I have talked to others transplantees and most of them report that the pain was pretty well managed. It still freaks me out to think about the pain I might experience post-surgery. You'd think with all of the PICCs and IVs I've had that I'd get desensitized to the pain factor, but that's not the case. I think it's mostly psychological... but it's still there.
2. The anxiety of waiting and getting the call. I can't even imagine the tension of waiting and waiting and then getting the call. It's overwhelming to me. I try to imagine myself getting the call and being prepped for surgery, and the anxiety and significance of that time is almost too much.
3. How my family is and will be involved. I am lucky to have the most supportive husband ever. But some other family members worry me. I know everyone has to deal with this at their own pace, but I wonder about how much progress is happening. I have been very open and honest and have kept everyone up-to-date. But like I said, I don't know how far we're getting. For example, after convincing my dad to watch the film last night, he calls to ask if I have a pager and says he doesn't even know if I'm on the list or not. I also worry about how everyone will get along when we're living in Edmonton post-surgery and I don't have the capacity/energy to mediate between my support people. I still have some work to do here.
Alright, I think that's it, there's no #4. I am down to three issues. The first two are mine to get over as much as possible, but that third one will take some strategy. I am going have to think about it and make some decisions. I hate the stress of dealing with my family... it's hard to think how four people can be so... different? difficult? complicated? I don't even know how to describe it, but every family has their own issues and we're no exception.
Monday, November 9
Clinic Visit
I had my regular clinic visit today. Everything went well- both my PFTs and weight were stable. I have been feeling great overall since I got off of IVs mid-October, but this weekend I noticed a slight increase in SOB, cough and production. I'm keeping an eye on it. Everyone says how exhausting assessment week is... it often leads to a round of IVs. I'd rather be the exception and stay away from those!
All of the staff were excited to hear about my assessment. I had a few issues to take care of at clinic, including getting some referrals to see specialists before transplant. I also had to discuss what to take during my month off of Azli, the new antibiotic I'm on. It was decided that I'll take an oral antibiotic for the off month and see how that goes. I also had to get my monthly port flush today. It didn't flush well last time when I ended my IVs, but today it flushed easily. That was a relief! I even remembered to bring some emla to numb the skin over my port, and it worked like a charm. I didn't feel a thing!
Next visit is in one month!
All of the staff were excited to hear about my assessment. I had a few issues to take care of at clinic, including getting some referrals to see specialists before transplant. I also had to discuss what to take during my month off of Azli, the new antibiotic I'm on. It was decided that I'll take an oral antibiotic for the off month and see how that goes. I also had to get my monthly port flush today. It didn't flush well last time when I ended my IVs, but today it flushed easily. That was a relief! I even remembered to bring some emla to numb the skin over my port, and it worked like a charm. I didn't feel a thing!
Next visit is in one month!
Friday, November 6
Assessment Day 3
My third and final assessment day is done! Woo hoo! It was another early start. This time I spent the entire day in the Diagnostic Imaging department. First up was a chest x-ray. Simple stuff. Next I had an abdominal ultrasound. After that was a CT of my chest and abdomen (plus a cheesy informational video from the 80s). I have had a chest CT before, but this was different because they used contrast. It was such a weird sensation when they put the dye through the IV. Warm and fuzzy. My last test was a VQ (ventilation perfusion) scan. I've never had one of these before either. It involved two different steps. First, I inhaled the radioactive substance and then pictures of my lungs were taken, indicating where there was air flow. The second step took pictures of my lungs where the blood flow was, so the radioactive stuff was injected into my IV. This was an eye-opener... compared to normal healthy lungs, mine look awful. It was a cool visual! It's crazy that on the outside, there's hardly any evidence of anything wrong with me (especially if I'm not wearing O2), but a look inside shows a totally different story!
My husband took care of packing and loading up the car, and then we made the three-hour trip home. We picked up our dog from my Mom's house on the way. As soon as I got home, I had to nap for a couple of hours. I was exhausted.
I am so glad that my assessment is behind me. I was really concerned that it wouldn't happen until the new year. There are no guarantees how well I'd be or how many more times I'd be hospitalized by then. I am very thankful that there was a cancellation that was offered to me. I am thankful that everything fell into place and we could make it on such short notice. It was meant to be!
My husband took care of packing and loading up the car, and then we made the three-hour trip home. We picked up our dog from my Mom's house on the way. As soon as I got home, I had to nap for a couple of hours. I was exhausted.
I am so glad that my assessment is behind me. I was really concerned that it wouldn't happen until the new year. There are no guarantees how well I'd be or how many more times I'd be hospitalized by then. I am very thankful that there was a cancellation that was offered to me. I am thankful that everything fell into place and we could make it on such short notice. It was meant to be!
Wednesday, November 4
Assessment Day 2
Day 2 is also in the books. The day began early with another trip to lab and then we walked over to the gym. I had a six-minute walk test and I managed 382m. I don't know if that's good or not. As I am marching up the hallways, coughing here and there, some guy makes a comment about my bad cold. This happens a lot, but I expect to see it less in a hospital while I am obviously doing a test. Hey buddy, last time you got a cold, did your doctor give you oxygen?
After the walk test we were off to the PFT lab for an arterial blood gas. The RT did an excellent job and it wasn't even uncomfortable. I was really impressed. I will admit that I'm scared of ABGs because my first one was rather unpleasant. Anyways, our next appointment was with the dietitian. After that I saw a cardiologist who had no concerns with my heart. Which means that I get out of the heart catherization! I also got out of a bronchoscopy. I have never had one before, but it sounds like it wouldn't be worth the potential risk at this time.
My husband and I were both exhausted at the end of the day. It was another super early day and we were happy to have the afternoon off. Actually, we have today and tomorrow off as well. Since I have done a lot of these tests recently during my last two hospitalizations, I don't need to repeat them again. On Friday I am scheduled for my final ultrasound and x-ray. Unfortunately these tests couldn't be bumped up, so we have to stick it out until Friday.
After the walk test we were off to the PFT lab for an arterial blood gas. The RT did an excellent job and it wasn't even uncomfortable. I was really impressed. I will admit that I'm scared of ABGs because my first one was rather unpleasant. Anyways, our next appointment was with the dietitian. After that I saw a cardiologist who had no concerns with my heart. Which means that I get out of the heart catherization! I also got out of a bronchoscopy. I have never had one before, but it sounds like it wouldn't be worth the potential risk at this time.
My husband and I were both exhausted at the end of the day. It was another super early day and we were happy to have the afternoon off. Actually, we have today and tomorrow off as well. Since I have done a lot of these tests recently during my last two hospitalizations, I don't need to repeat them again. On Friday I am scheduled for my final ultrasound and x-ray. Unfortunately these tests couldn't be bumped up, so we have to stick it out until Friday.
Monday, November 2
Assessment Day 1
Assessment Day 1? Check!
Let me start by saying that today was a long day. My husband and I needed to be at the hospital for our first appointment at 7:30am. Before that I had to do my treatments and get ready, so it was a really early day! We were able to stay at a hotel across the street from the hospital, so that was a plus.
First on the schedule was bloodwork... 15 vials worth! There's nothing like fasting for 12 hours and then losing a bunch of blood. An ECG was next. Then I met with one of the transplant doctors (a different one from last time). Next we were off to meet the social worker and chat about everything from my support people to finances. We were allowed a lunch break -phew- and then met with the pre-transplant coordinator (nurse). We discussed more about the actual procedure and logistics. Last on the list was meeting the anesthesiologist.
By the end of the day I was pretty tired and hungry and perhaps a little grumpy. We walked back to the room where I relaxed for a little bit, ate a lot of snacks and then had a nice nap.
Everyone we met today was friendly and very knowledgeable. Today was good to start to figure out the hospital and all of its buildings and hallways... it's strange hanging out in a hospital where we don't know any staff or any shortcuts through the basement. One of the new hospital buildings is new and is super nice and bright- what a treat! I was also very proud of myself for walking all day. It was a lot of back and forth, but I did it. Luckily my husband carried the backpack full of O2 tanks for the day- I could hardly even lift it!
Another neat thing happened today- we bumped into someone from my clinic who had got new lungs two months ago. We had actually been in hospital together back in May. This person didn't even finish the six-week physical therapy program before they got the call. It's crazy to think that your new lungs could come that quickly!
Day 1 is a wrap! Time to get some sleep.
Let me start by saying that today was a long day. My husband and I needed to be at the hospital for our first appointment at 7:30am. Before that I had to do my treatments and get ready, so it was a really early day! We were able to stay at a hotel across the street from the hospital, so that was a plus.
First on the schedule was bloodwork... 15 vials worth! There's nothing like fasting for 12 hours and then losing a bunch of blood. An ECG was next. Then I met with one of the transplant doctors (a different one from last time). Next we were off to meet the social worker and chat about everything from my support people to finances. We were allowed a lunch break -phew- and then met with the pre-transplant coordinator (nurse). We discussed more about the actual procedure and logistics. Last on the list was meeting the anesthesiologist.
By the end of the day I was pretty tired and hungry and perhaps a little grumpy. We walked back to the room where I relaxed for a little bit, ate a lot of snacks and then had a nice nap.
Everyone we met today was friendly and very knowledgeable. Today was good to start to figure out the hospital and all of its buildings and hallways... it's strange hanging out in a hospital where we don't know any staff or any shortcuts through the basement. One of the new hospital buildings is new and is super nice and bright- what a treat! I was also very proud of myself for walking all day. It was a lot of back and forth, but I did it. Luckily my husband carried the backpack full of O2 tanks for the day- I could hardly even lift it!
Another neat thing happened today- we bumped into someone from my clinic who had got new lungs two months ago. We had actually been in hospital together back in May. This person didn't even finish the six-week physical therapy program before they got the call. It's crazy to think that your new lungs could come that quickly!
Day 1 is a wrap! Time to get some sleep.
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