Awesome news!
I ran on the treadmill today in the gym! I only ran for one minute at a time, but it felt great. My legs even remembered how to do it!
It was a pretty cool experience. As I increased the speed on the treadmill and started to increase my pace to a jog, everybody in the gym stopped to watch and cheer me on. I think I impressed a few people, including myself!
Now that I know I can do it, I will add running to my workout schedule a couple of times a week. I don't want to go too hard and injure my feet or legs, but I'd like to slowly increase my endurance. I have to get back into field hockey shape somehow!
Wednesday, October 27
Tuesday, October 26
Three Months
It's been three months since my surgery, as of yesterday. I can't believe how quickly the time has gone! I guess the changing seasons help me to realize how long it's been. Summer and Fall have come and gone, and yesterday we woke up to snow. It looks like Winter has arrived! I don't think I'm ready for it yet!
I officially finished my physio program on Friday, but I'll be spending one extra week in the gym by choice. I did a six-minute walk test last week and I was able to walk twice as far as I could pre-transplant. It's amazing. I also had my last doctor's appointment, with my next one scheduled in two weeks. I will continue weekly bloodwork for a while to monitor my drug levels. Since stopping the VFend, my Tac levels have dropped so we've doubled my dose. My white blood cell count is also very low (for a second time) so I'm holding another immuno-suppressant for a couple of days to try and improve that.
I finally did it... and wrote my letter to my donor's family. I have thought about that letter every single day since transplant, but it was still hard to write. I wanted to make sure I said everything I wanted to and didn't leave anything out. I hope the family appreciates the letter and I hope it helps them have closure. I would love to receive a letter back from the family one day, but I have no idea if that will happen. Time will tell.
Over the weekend I noticed that my blood sugars started running low, which certainly hasn't happened in the last three months! I had been worried that I wouldn't feel the symptoms anymore, or that they'd be different, but I was able to identify the problem pretty quick. It looks like my body is slowly readjusting, and I have been able to scale back on my insulin. This is really encouraging! I was starting to worry that I'd be stuck on 80 units of insulin a day forever!
I have noticed a couple of other little things that make me happy, like my fingers becoming less clubbed. They weren't too bad before, but they are definitely reversing themselves!
I have noticed a couple of little things that bother me too- mostly minor side effects of the drugs. My blood pressure is high for the first time in my life, but I started a med to control that. I have had a harder time concentrating lately. I used to enjoy watching tv and being on the computer, but now I can only handle small doses, and I'm usually doing something else at the same time. I'm still always thinking about food, but I'm trying not to eat everything in sight! Time to learn how to like veggies for snacks! Since transplant, I have been obsessed with dill pickle chips. I liked them before, but they weren't my favorite and I only had them the odd time. Now I can't leave the grocery store without another bag- just in case I run out of chips at home. That would be a disaster! I also used to go to McDonald's at least once a week pre-transplant, and I haven't gone once since transplant. I haven't had the urge at all. Isn't that strange? I'm thinking it's my new lungs!
With the first three months gone by so quickly, I can't imagine how fast the next three will pass. It's hard to guess what's in store for me these next few months... all of the rules we've lived by no longer apply. I'm so excited for my new life!
I officially finished my physio program on Friday, but I'll be spending one extra week in the gym by choice. I did a six-minute walk test last week and I was able to walk twice as far as I could pre-transplant. It's amazing. I also had my last doctor's appointment, with my next one scheduled in two weeks. I will continue weekly bloodwork for a while to monitor my drug levels. Since stopping the VFend, my Tac levels have dropped so we've doubled my dose. My white blood cell count is also very low (for a second time) so I'm holding another immuno-suppressant for a couple of days to try and improve that.
I finally did it... and wrote my letter to my donor's family. I have thought about that letter every single day since transplant, but it was still hard to write. I wanted to make sure I said everything I wanted to and didn't leave anything out. I hope the family appreciates the letter and I hope it helps them have closure. I would love to receive a letter back from the family one day, but I have no idea if that will happen. Time will tell.
Over the weekend I noticed that my blood sugars started running low, which certainly hasn't happened in the last three months! I had been worried that I wouldn't feel the symptoms anymore, or that they'd be different, but I was able to identify the problem pretty quick. It looks like my body is slowly readjusting, and I have been able to scale back on my insulin. This is really encouraging! I was starting to worry that I'd be stuck on 80 units of insulin a day forever!
I have noticed a couple of other little things that make me happy, like my fingers becoming less clubbed. They weren't too bad before, but they are definitely reversing themselves!
I have noticed a couple of little things that bother me too- mostly minor side effects of the drugs. My blood pressure is high for the first time in my life, but I started a med to control that. I have had a harder time concentrating lately. I used to enjoy watching tv and being on the computer, but now I can only handle small doses, and I'm usually doing something else at the same time. I'm still always thinking about food, but I'm trying not to eat everything in sight! Time to learn how to like veggies for snacks! Since transplant, I have been obsessed with dill pickle chips. I liked them before, but they weren't my favorite and I only had them the odd time. Now I can't leave the grocery store without another bag- just in case I run out of chips at home. That would be a disaster! I also used to go to McDonald's at least once a week pre-transplant, and I haven't gone once since transplant. I haven't had the urge at all. Isn't that strange? I'm thinking it's my new lungs!
With the first three months gone by so quickly, I can't imagine how fast the next three will pass. It's hard to guess what's in store for me these next few months... all of the rules we've lived by no longer apply. I'm so excited for my new life!
Sunday, October 17
Another Bronch Down
It's been a very busy week. I had an sort-of unexpected bronch on Tuesday. It wasn't decided if I'd have a three-month bronch, but I started experiencing a couple of changes and we decided to go ahead with it. I'm glad that we had a little look. As it turns out, one of the anastomoses (sites where the new lungs are sewn onto the old airway) was growing some extra tissue. Since it was useless tissue, a balloon was used to stretch it out and break it up. Otherwise, everything else looked great. Yay! I got a couple of pretty cool pictures of my insides as a souvenir.
Of course, my two best friends had just arrived to visit with me, so we had to cut it short. It was too bad, but priorities I guess!
Although all of the cultures aren't back yet, I'm on oral Cipro and some IV Meropenem. It's made for some long days sitting in the IV Room, but it's worth it. I have also stopped some of the precautionary meds like the anti-fungal and the anti-viral. As a result, some of my immuno-suppressants needed to be adjusted as well.
It's my last week of physio starting tomorrow. I can't believe it's almost been three months already. I will be writing my donor letter this week. I have felt so much pressure to write the perfect letter. It always sounds good in my head, but it's another thing to put it on paper!
I know we shouldn't compare ourselves to others in recovery, but it's always so interesting! There were four others who had their lung transplants the same week as me (it comes in waves!) Of the five of us, I am by far the youngest. I wonder who else will be allowed to go home on schedule, after the three months of recovery. All of them are basically still using a wheelchair to get around the hospital. I know we all have our own paths to walk, but I wonder how much is effort and how much is luck. I have been fortunate for sure, but I have pushed myself. My husband has pushed me. My family and friends have expressed their support and it motivates me. I feel bad though, especially for those who have had complications. I hope they will be able to go home soon.
Another CFer got lungs last weekend! That's now three of the seven that are waiting. Good news!
Of course, my two best friends had just arrived to visit with me, so we had to cut it short. It was too bad, but priorities I guess!
Although all of the cultures aren't back yet, I'm on oral Cipro and some IV Meropenem. It's made for some long days sitting in the IV Room, but it's worth it. I have also stopped some of the precautionary meds like the anti-fungal and the anti-viral. As a result, some of my immuno-suppressants needed to be adjusted as well.
It's my last week of physio starting tomorrow. I can't believe it's almost been three months already. I will be writing my donor letter this week. I have felt so much pressure to write the perfect letter. It always sounds good in my head, but it's another thing to put it on paper!
I know we shouldn't compare ourselves to others in recovery, but it's always so interesting! There were four others who had their lung transplants the same week as me (it comes in waves!) Of the five of us, I am by far the youngest. I wonder who else will be allowed to go home on schedule, after the three months of recovery. All of them are basically still using a wheelchair to get around the hospital. I know we all have our own paths to walk, but I wonder how much is effort and how much is luck. I have been fortunate for sure, but I have pushed myself. My husband has pushed me. My family and friends have expressed their support and it motivates me. I feel bad though, especially for those who have had complications. I hope they will be able to go home soon.
Another CFer got lungs last weekend! That's now three of the seven that are waiting. Good news!
Monday, October 11
Thanksgiving
We had a great family dinner yesterday on Thanksgiving. It was nice to see everyone altogether. It was also nice to chat all I wanted, walk to the grocery store to pick things up, help carry stuff out, and the list goes on. My mother-in-law gave a fantastic toast about how strong I was through everything, and it brought tears to my eyes. I am so thankful to have such wonderful family, friends, puppy, and new lungs. Thank you donor and family. You have changed my life.
It was another busy week with those tests (which went well as far as I know). I am starting to feel a bit worn out, but there's only two weeks left of recovery in the gym. Although it's been great to have a routine to keep busy and get used to all this exercise, I am looking forward to some flexibility and a change of scenery!
It was another busy week with those tests (which went well as far as I know). I am starting to feel a bit worn out, but there's only two weeks left of recovery in the gym. Although it's been great to have a routine to keep busy and get used to all this exercise, I am looking forward to some flexibility and a change of scenery!
Sunday, October 3
This and That
Another week of recovery is in the books! I had some visitors this week which was nice. My meds were adjusted quite a bit this week, and now my white blood cell counts is in the target range. My insulin was also adjusted... up and up and up. I feel like no matter what I do, my blood sugar is ridiculous before dinner. It's frustrating but I can't control it, the drugs are in charge!
Another CFer I met had their transplant! If you're counting, that was two CFers within a week of each other! I'm excited for when I see them in the gym later, and I'm even more excited for my CF friends that are still waiting. All it takes is one donor, one match. Hopefully soon!
In the waiting room for lung transplant clinic, I met someone who was 16 years post-transplant. How amazing is that? He said he was one of the first lung transplants here.
I'm booked for some of my three-month assessment tests in the next couple of days. It's a little early, but I think I'm doing well enough. On Tuesday I have a VQ Scan and a Chest CT Scan. I also have a Chest X-Ray on Monday. This week I will start attending my appointments and the gym on my own. All by myself. My husband will be heading back to work full-time (although he'll come with me for the scans on Tuesday). I feel so independent and all grown up! No more babysitters! I am very appreciative of my husband and other family members that helped me out every day up to now, but it's nice to be able to do it on my own! It's an exciting step in my road to recovery!
I feel like real life is creeping up on me. Slowly, I seem to be doing more errands and making more phone calls, doing more housework and more 'normal stuff.' I can handle doing the laundry again. I am preparing the occasional meal- something I haven't done for at least a year. I never cooked much to begin with, but it's nice to be able to. I tried vacuuming for the first time in two years. I walk to the grocery store nearly everyday for this or that. I take the stairs. Now when I see someone else wearing oxygen, it nearly stops me in my tracks while I can remember how that used to be me. Wow. How things change.
Another CFer I met had their transplant! If you're counting, that was two CFers within a week of each other! I'm excited for when I see them in the gym later, and I'm even more excited for my CF friends that are still waiting. All it takes is one donor, one match. Hopefully soon!
In the waiting room for lung transplant clinic, I met someone who was 16 years post-transplant. How amazing is that? He said he was one of the first lung transplants here.
I'm booked for some of my three-month assessment tests in the next couple of days. It's a little early, but I think I'm doing well enough. On Tuesday I have a VQ Scan and a Chest CT Scan. I also have a Chest X-Ray on Monday. This week I will start attending my appointments and the gym on my own. All by myself. My husband will be heading back to work full-time (although he'll come with me for the scans on Tuesday). I feel so independent and all grown up! No more babysitters! I am very appreciative of my husband and other family members that helped me out every day up to now, but it's nice to be able to do it on my own! It's an exciting step in my road to recovery!
I feel like real life is creeping up on me. Slowly, I seem to be doing more errands and making more phone calls, doing more housework and more 'normal stuff.' I can handle doing the laundry again. I am preparing the occasional meal- something I haven't done for at least a year. I never cooked much to begin with, but it's nice to be able to. I tried vacuuming for the first time in two years. I walk to the grocery store nearly everyday for this or that. I take the stairs. Now when I see someone else wearing oxygen, it nearly stops me in my tracks while I can remember how that used to be me. Wow. How things change.
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