It was a busy weekend and I definitely felt it at the gym this morning! We had lots of visitors this weekend, which was lots of fun! My sister and brother in law and nephews and niece came. I haven't had a visit with the kids since before transplant. I did technically see them in the hospital, through my window to the courtyard. It was ideal at the time- I rolled the IV lines and chest tube stuff out of view and waved at them so they knew I was alright.
We went out with them for lunch and then checked out West Edmonton Mall. West Ed is one of the world's biggest malls and has lots to do. We wandered around for a while, including a stop at the pet store to look at puppies! My husband and brother in law stayed to mini-golf with the kids while my sister in law took me back home for some quiet time before we went out for dinner.
On Sunday there was a fundraiser for CF that we all attended called Run for the Lung. Three more of our friends came up for the day to join us. Three of the guys participated in the 5K run. They all did great! It was hosted by a local pub and they put on a nice BBQ afterwards. The only drawback was the weather! It was brisk, but at least it didn't rain. We went for coffee with our friends afterwards to warm up.
At some point during the event, someone had told someone else that I was one month post-transplant. As everyone was leaving, a mom of a young CFer came up to chat with me. She said she was amazed how good I looked and wanted to hear my story. The nicest part was she asked if there was anything she could do for us, like make us a meal. We declined, but it was so sweet!
It was a busy weekend but it was fun. I missed both my naps, but it felt so good to do normal stuff!
Monday, August 30
Wednesday, August 25
One Month & Counting
Things continue to go smoothly this week. I continue to feel better and have more energy. Technically, Wednesday the 25th was one month after my transplant. I still can't believe how much my life has changed in one month! It's incredible (my new favorite word!)
This week, I stopped three of the medications I was discharged on. This includes inhaled Tobi. That marks the end of my CF lung routine! It was nice to slowly transition away from the routine, and now it's nice that it's behind me! I still feel like I'm cheating in the mornings when I set the alarm for half an hour before I need to leave! I'm pretty sure I'll get used to it though!
My dose of prednisone was lowered to 20mg this week. This is a good thing. My cheeks are so puffy, particularly when I wake up. I don't really mind, but I do notice the difference. I'm also going to blame the prednisone for my crazy appetite! I think about food all the time. Even when I'm full. I can't wait until my next meal. Or snack. And I can't say no to treats. Particularly ice cream, gelato, and slurpees. And gummies. And dill pickle chips. Luckily, I am not grazing all day, but having regular meals so I can accurately track my blood sugars. My sliding scale was revised yesterday, so hopefully we can get my afternoon prednisone highs down to a reasonable level. Even though I knew my CFRD would get worse after transplant, I didn't anticipate taking ~60 units of insulin a day! It feels like so much compared to before. I understand why it happens and how important it is to manage healthy blood sugars... but I'm still surprised.
I'm happy everyday at the gym when I can increase my weights or my speed on the treadmill. I'm already walking for 30 minutes at 3.0, while talking. This is already a big improvement from before transplant. It's weird to have my legs feel sore before I'm breathing hard. I'm not used to this!
The other day my husband and I walked for an hour and 20 minutes. We went non-stop, just checking out the beautiful university campus. Again, it was more of a mental challenge than physical. Previously with my O2, I needed to know that I was going to go from Point A to Point B with a rest stop here and there. There had to be a purpose to the walk, otherwise it wasn't worth the energy. It really challenged me to wander and not know where I was headed or have a task associated with the trip. Once I got over that, I really enjoyed the walk and just being free!
This week I also got my home spirometer. After a brief training session, this little toy is now a part of my daily monitoring routine. Every morning I weigh myself, check my blood pressure and pulse, check my temperature, and do my PFTs. I still need some practice because my PFTs at home are all over the place. I expect to see a pattern soon.
I saw my post-transplant chest x-ray for the first time. Wow! Those are some good-looking lungs, if I say so myself! The difference between the pre- and post- is incredible! I love it!
I'm looking forward to a fun weekend with friends and family!
This week, I stopped three of the medications I was discharged on. This includes inhaled Tobi. That marks the end of my CF lung routine! It was nice to slowly transition away from the routine, and now it's nice that it's behind me! I still feel like I'm cheating in the mornings when I set the alarm for half an hour before I need to leave! I'm pretty sure I'll get used to it though!
My dose of prednisone was lowered to 20mg this week. This is a good thing. My cheeks are so puffy, particularly when I wake up. I don't really mind, but I do notice the difference. I'm also going to blame the prednisone for my crazy appetite! I think about food all the time. Even when I'm full. I can't wait until my next meal. Or snack. And I can't say no to treats. Particularly ice cream, gelato, and slurpees. And gummies. And dill pickle chips. Luckily, I am not grazing all day, but having regular meals so I can accurately track my blood sugars. My sliding scale was revised yesterday, so hopefully we can get my afternoon prednisone highs down to a reasonable level. Even though I knew my CFRD would get worse after transplant, I didn't anticipate taking ~60 units of insulin a day! It feels like so much compared to before. I understand why it happens and how important it is to manage healthy blood sugars... but I'm still surprised.
I'm happy everyday at the gym when I can increase my weights or my speed on the treadmill. I'm already walking for 30 minutes at 3.0, while talking. This is already a big improvement from before transplant. It's weird to have my legs feel sore before I'm breathing hard. I'm not used to this!
The other day my husband and I walked for an hour and 20 minutes. We went non-stop, just checking out the beautiful university campus. Again, it was more of a mental challenge than physical. Previously with my O2, I needed to know that I was going to go from Point A to Point B with a rest stop here and there. There had to be a purpose to the walk, otherwise it wasn't worth the energy. It really challenged me to wander and not know where I was headed or have a task associated with the trip. Once I got over that, I really enjoyed the walk and just being free!
This week I also got my home spirometer. After a brief training session, this little toy is now a part of my daily monitoring routine. Every morning I weigh myself, check my blood pressure and pulse, check my temperature, and do my PFTs. I still need some practice because my PFTs at home are all over the place. I expect to see a pattern soon.
I saw my post-transplant chest x-ray for the first time. Wow! Those are some good-looking lungs, if I say so myself! The difference between the pre- and post- is incredible! I love it!
I'm looking forward to a fun weekend with friends and family!
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!
Subscribe to:
Posts (Atom)