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!
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Monday, August 9
Friday, July 16
A Special Day
Last week in hospital there was one day that stood out as special. That's the best way to describe it. It was out of the ordinary because of a couple of things that happened...
1. While I was eating my breakfast, one of my favorite nurses came in. He had recently brought his wife over to Canada after a two year long effort. It was a huge victory for him. That morning, he took the bracelet off his wrist and said that he wanted me to have it. He explained that it's made of red coral and it absorbs bad karma so only the good karma gets to you. In his hometown, these bracelets are often given at important times in one's life. It touched my heart that he gave it to me.
2. One of my favorite physios did my evening treatment. We had a heart to heart and talked about how things like transplant really show you who your friends are. She had a health crisis in university and could relate to some of the things I'm going through. It meant a lot to have that conversation with her.
3. One of my friends and his mom came to visit me. My friend is one year post-transplant (with CF) and is doing fabulous! He has been a huge source of encouragement, information and support for both myself and my husband. We got to know each other within the last year but it feels like we've been friends forever. Because of our CF and attitude towards it, we have so much in common. We talked a lot about transplant and talked about my friend who had the dry run a couple of weeks ago. At one point in the evening, I looked out the window and there was the most brilliant rainbow. It was stunning. We talked about how that could be a sign.
It turns out the rainbow was a sign, but not for me. My friend who had the dry run got her call that evening. She was flown to Edmonton and had her surgery the next morning. She's doing well! I am so happy that she had her transplant. I haven't mentioned this yet, but I have a feeling that she was ahead of me on the list. I think we're the same blood type and height. Which means that I am now closer to the top of the list. It's exciting and scary at the same time!
1. While I was eating my breakfast, one of my favorite nurses came in. He had recently brought his wife over to Canada after a two year long effort. It was a huge victory for him. That morning, he took the bracelet off his wrist and said that he wanted me to have it. He explained that it's made of red coral and it absorbs bad karma so only the good karma gets to you. In his hometown, these bracelets are often given at important times in one's life. It touched my heart that he gave it to me.
2. One of my favorite physios did my evening treatment. We had a heart to heart and talked about how things like transplant really show you who your friends are. She had a health crisis in university and could relate to some of the things I'm going through. It meant a lot to have that conversation with her.
3. One of my friends and his mom came to visit me. My friend is one year post-transplant (with CF) and is doing fabulous! He has been a huge source of encouragement, information and support for both myself and my husband. We got to know each other within the last year but it feels like we've been friends forever. Because of our CF and attitude towards it, we have so much in common. We talked a lot about transplant and talked about my friend who had the dry run a couple of weeks ago. At one point in the evening, I looked out the window and there was the most brilliant rainbow. It was stunning. We talked about how that could be a sign.
It turns out the rainbow was a sign, but not for me. My friend who had the dry run got her call that evening. She was flown to Edmonton and had her surgery the next morning. She's doing well! I am so happy that she had her transplant. I haven't mentioned this yet, but I have a feeling that she was ahead of me on the list. I think we're the same blood type and height. Which means that I am now closer to the top of the list. It's exciting and scary at the same time!
Friday, July 9
Heading Home
Dreams of an early discharge didn't happen this week. I should be going home tomorrow though. It feels like it's been a long week because the hospital Internet has been down for a couple of days and it made me feel isolated!
Basic hospital admission... things have been pretty smooth except for my port care. It was determined that I had to get the nurses on the floor to access and change my port needle, as opposed to the nurses in the home IV clinic who I know and trust. Sure enough, between my two port needles, I had seven pokes, no flushes, no heparin and one problem port. After my port refused to give blood return and would hardly flush, we called in the experts and had to use TPA for the first time. I was nervous, not to mention annoyed that this happened in the first place! I'm glad that the TPA worked and cleaned out the junk in my port. It's working like a charm now!
It's interesting that after the last two years, my view of the hospital has changed. I still feel a bit defeated when I get admitted, but I now feel safe here. I know I am going to get better. It's actually comforting. How much has changed in two years!
Basic hospital admission... things have been pretty smooth except for my port care. It was determined that I had to get the nurses on the floor to access and change my port needle, as opposed to the nurses in the home IV clinic who I know and trust. Sure enough, between my two port needles, I had seven pokes, no flushes, no heparin and one problem port. After my port refused to give blood return and would hardly flush, we called in the experts and had to use TPA for the first time. I was nervous, not to mention annoyed that this happened in the first place! I'm glad that the TPA worked and cleaned out the junk in my port. It's working like a charm now!
It's interesting that after the last two years, my view of the hospital has changed. I still feel a bit defeated when I get admitted, but I now feel safe here. I know I am going to get better. It's actually comforting. How much has changed in two years!
Thursday, July 1
Happy Canada Day!
I spent my Canada Day in the hospital. I was admitted yesterday because I was short of breath, and doing more choking than coughing. I definitely need some IVs and lots of physio. It's been exactly one month since I was last discharged. This is getting very predictable! It's too bad because I had two very good weeks after I left the hospital last. And then I had two terrible weeks, and I blame the bowel obstructions for setting me back! I couldn't do physio or even cough properly while I had so much abdominal pain. Hopefully I will leave on home IVs early next week.
I thought I'd have an awesome view of the fireworks tonight, because I have a very nice view of the downtown skyline from my room. No such luck! The fireworks were so low, I could hardly see them. Oh well. Happy Canada Day!
My thoughts are also with Pam today, who got her call this afternoon. I look forward to hearing more about how she's doing. Pam, you'll do great!
I thought I'd have an awesome view of the fireworks tonight, because I have a very nice view of the downtown skyline from my room. No such luck! The fireworks were so low, I could hardly see them. Oh well. Happy Canada Day!
My thoughts are also with Pam today, who got her call this afternoon. I look forward to hearing more about how she's doing. Pam, you'll do great!
Tuesday, June 1
There's No Place Like Home!
I was discharged yesterday afternoon and it feels great to be back home. I must say that this was the smoothest hospitalization ever. No disasters and no roommates! Two weeks is still a long time to be away from home though. Home cooked meals have never tasted so good! I am happy to unpack, see my dog and get back into the swing of things!
My port was flushed and deaccessed before I left. That means I am IV-free! I am actually completely antibiotic-free as well. We have decided to discontinue the two oral antibiotics that I've been on opposite of Tobi. In two weeks I will start my Tobi rotation (two weeks on, two weeks off).
For my shortness of breath, we have come to a compromise. I have repeatedly turned down that "anti-anxiety medication," which I found out is actually an anti-depressant. That is still on the radar screen, but let's call it Plan B. What is Plan A you ask? A fentanyl patch. I tried a low dose patch, worn for 72 hours, in the hospital to check for side effects. The idea is that the patch will help me with those episodes of breathlessness. I think it's worth a try. My shortness of breath isn't like a panic attack or a sudden change, it's a gradual change in my breathing that persists for days.
I worked out for the first time in weeks this afternoon. I have been looking forward to returning to my workouts. My legs are shaky when I stand up, so I think I lost some muscle mass in hospital. I hope to get it back soon so I can be ready for surgery!
My port was flushed and deaccessed before I left. That means I am IV-free! I am actually completely antibiotic-free as well. We have decided to discontinue the two oral antibiotics that I've been on opposite of Tobi. In two weeks I will start my Tobi rotation (two weeks on, two weeks off).
For my shortness of breath, we have come to a compromise. I have repeatedly turned down that "anti-anxiety medication," which I found out is actually an anti-depressant. That is still on the radar screen, but let's call it Plan B. What is Plan A you ask? A fentanyl patch. I tried a low dose patch, worn for 72 hours, in the hospital to check for side effects. The idea is that the patch will help me with those episodes of breathlessness. I think it's worth a try. My shortness of breath isn't like a panic attack or a sudden change, it's a gradual change in my breathing that persists for days.
I worked out for the first time in weeks this afternoon. I have been looking forward to returning to my workouts. My legs are shaky when I stand up, so I think I lost some muscle mass in hospital. I hope to get it back soon so I can be ready for surgery!
Saturday, May 29
Sleep Study Results
Yay! I am feeling a lot better. It looks like I could go home on Monday after two weeks of antibiotics. I see lots of improvement- less cough, less production, less SOB and increased appetite.
I had that sleep study the other night. It was a snoresat, not true sleep study like they do in a sleep clinic. It was less invasive than I thought. I wore a nasal cannula to record each breath. I think the preference is to do the test with no supplemental O2, but that's a stretch for me, so we turned down my O2 to 3LPM instead. I ended up wearing two nasal cannulas, which is particularly attractive. I had a sat monitor taped to one of my fingers. I also had a disc with a ball in it taped to the front of my neck. The ball moved according to my position (sitting, laying on my back or side, etc.) and would vibrate with snoring. All of this information was recorded. As it turns out, no sleep problems were detected. I'm not surprised. My suspicion is that I stop breathing when I'm really congested at night. I think I cough up in my sleep and then choke a bit until I can clear it. At least it's not a problem with my sleep.
I have arranged a day pass for tomorrow morning. It's our Great Strides walk! In Canada, all the walks are coordinated across the country to take place on Sunday, May 30th (always the last Sunday in May). I am SO excited to see all of my friends! And I'm so proud of all of the fundraising my team has done. Once it's final, I'll reveal how we did! Now if only it would stop snowing...
I had that sleep study the other night. It was a snoresat, not true sleep study like they do in a sleep clinic. It was less invasive than I thought. I wore a nasal cannula to record each breath. I think the preference is to do the test with no supplemental O2, but that's a stretch for me, so we turned down my O2 to 3LPM instead. I ended up wearing two nasal cannulas, which is particularly attractive. I had a sat monitor taped to one of my fingers. I also had a disc with a ball in it taped to the front of my neck. The ball moved according to my position (sitting, laying on my back or side, etc.) and would vibrate with snoring. All of this information was recorded. As it turns out, no sleep problems were detected. I'm not surprised. My suspicion is that I stop breathing when I'm really congested at night. I think I cough up in my sleep and then choke a bit until I can clear it. At least it's not a problem with my sleep.
I have arranged a day pass for tomorrow morning. It's our Great Strides walk! In Canada, all the walks are coordinated across the country to take place on Sunday, May 30th (always the last Sunday in May). I am SO excited to see all of my friends! And I'm so proud of all of the fundraising my team has done. Once it's final, I'll reveal how we did! Now if only it would stop snowing...
Tuesday, May 25
More of the Same
This is a been a pretty routine hospital stay so far. I'm on Tobra and Ceftaz plus physio three times a day. I am feeling much better than I was last Monday when I was admitted. I'm no longer short of breath at rest, and my breathing is improving with exertion too. I am hoping to go to the gym soon and spend some time on the treadmill. Maybe I'll get out by the weekend or early next week.
My husband has been spending tons of time with me, which makes being stuck here much easier. It was the long weekend so he got to spend even more time with me! I've had a few other visitors too, which is great. Everyone had been making comments that maybe I would get The Call over the long weekend... but nothing. I think there's a common perception that holidays and special occasions are big transplant days, but I don't buy it.
I am having that sleep study done tonight. I don't know exactly what to expect, but a RT will come by and set things up. I'm just glad I'm getting it done as an inpatient. I'm sure it's saving me a few trips to the hospital!
My husband has been spending tons of time with me, which makes being stuck here much easier. It was the long weekend so he got to spend even more time with me! I've had a few other visitors too, which is great. Everyone had been making comments that maybe I would get The Call over the long weekend... but nothing. I think there's a common perception that holidays and special occasions are big transplant days, but I don't buy it.
I am having that sleep study done tonight. I don't know exactly what to expect, but a RT will come by and set things up. I'm just glad I'm getting it done as an inpatient. I'm sure it's saving me a few trips to the hospital!
Monday, May 17
Some Relief
I haven't been feeling good for weeks and it looks like today I will get some relief. I am being admitted once a bed becomes available this afternoon. I was wondering what it would take to get treated! Yesterday, I went to the hospital to have my routine port flush and the nurses were super concerned about me. A couple of phone calls later, the wheels were set in motion!
This past weekend was a tough one. I have been extremely short of breath even though I've bumped my concentrator up to 9.5 LPM. My resting heart rate is around 110 and I am constantly exhausted. I can't keep this up much longer. I need those IVs!
Here's hoping I get a private room!
This past weekend was a tough one. I have been extremely short of breath even though I've bumped my concentrator up to 9.5 LPM. My resting heart rate is around 110 and I am constantly exhausted. I can't keep this up much longer. I need those IVs!
Here's hoping I get a private room!
Thursday, March 25
Heading Home!
I am heading home tomorrow. I will finish off my IVs at home and head back to clinic on Wednesday for follow-up. It's always exciting to know that I'm going to be discharged. I can't wait to live with my husband again, see my dog and return to my routine at home. I never sleep much at the hospital either, so I need to catch up!
My sister left on a month-long trip yesterday. I've got to admit that I'm a little surprised that she decided to travel half-way across the world while I'm on the transplant list. I don't even know if that was much of a factor, but I wasn't about to interfere with her decision to travel. I think she didn't like leaving with me in the hospital, but I don't know if she's considered that I might have new lungs the next time I see her. She says she'll fly home if I get the call... but the logistics of that are overwhelming. No point worrying about it though.
My sister left on a month-long trip yesterday. I've got to admit that I'm a little surprised that she decided to travel half-way across the world while I'm on the transplant list. I don't even know if that was much of a factor, but I wasn't about to interfere with her decision to travel. I think she didn't like leaving with me in the hospital, but I don't know if she's considered that I might have new lungs the next time I see her. She says she'll fly home if I get the call... but the logistics of that are overwhelming. No point worrying about it though.
Monday, March 22
Here We Go Again
Over the last two weeks I have experienced a slow progression that's landed me back in the hospital. I have been very SOB and I've been having chest/lung pain. That's unusual for me, so I've been pretty concerned. We haven't figured it all out yet, but we've been crossing off possible causes. High Co2? Nope, my blood gas results are similar to last time. Collapsed lobe? Nope, my xray looks about the same. Heart problems? Nope, things are good in that department too. I am on IV Tobra and Cefepime and I hope it'll kick in soon.
In other hospital news, I was moved from my private room to a semi-private this afternoon. Ugh. Of course, my roommate is all kinds of crazy and I have NO sympathy for people who wreck their lungs by smoking. I'll save you the rant, but the smell of the cigarette smoke hanging in the air is an issue. I have no luck with roommates. Or with sharing bathrooms with five other people.
Enough about me already.
I am thrilled to hear all of the recent news in the CF blog community... CFers getting new lungs, CFers having dry runs that provide a new perspective and energy to continue waiting, CFers responding to anti-rejection meds, and CFers being listed at excellent tx centres with short wait lists. Every story is exciting and encouraging. I love all of the good news!
I also heard some good news from my exercise group at my tx centre. I heard that two of them have their new lungs! I am thrilled for them. Things are looking up!
In other hospital news, I was moved from my private room to a semi-private this afternoon. Ugh. Of course, my roommate is all kinds of crazy and I have NO sympathy for people who wreck their lungs by smoking. I'll save you the rant, but the smell of the cigarette smoke hanging in the air is an issue. I have no luck with roommates. Or with sharing bathrooms with five other people.
Enough about me already.
I am thrilled to hear all of the recent news in the CF blog community... CFers getting new lungs, CFers having dry runs that provide a new perspective and energy to continue waiting, CFers responding to anti-rejection meds, and CFers being listed at excellent tx centres with short wait lists. Every story is exciting and encouraging. I love all of the good news!
I also heard some good news from my exercise group at my tx centre. I heard that two of them have their new lungs! I am thrilled for them. Things are looking up!
Saturday, December 5
Home Sweet Home
I came home yesterday! This time I spent nine days in the hospital on IVs. I was surprised to go home IV-free, but I am feeling better and I think there's a concern about how much tobra I've been on lately. Realistically, it's only a matter of weeks before I'm back on it anyways.
It feels so good to be back at home. My husband hardly sleeps when I'm gone, so it's good we can get back to our routine. This time my hospital stay was a bit different. I usually have tons of visitors, but this time I didn't tell anyone I was in except family and a couple of friends. My family spent lots of time with me (maybe too much?) and two friends came to visit me. I didn't really hear much from my best friends though. Maybe this hospital stuff is getting old fast.
I know I hesitated coming into hospital, but I'm glad that I went in. It's hard to notice the slow decline when I'm occupied at home doing stuff. It's also hard to admit that it's happened already. In hospital, I could see that I started feeling like myself again around the one week mark. The difference was easy to notice because it happened so quickly. As much as I don't enjoy the hospital, it was the right place to be. I can't afford any more damage to my lungs.
I don't know why I can't have an uneventful hospital stay. I thought for a moment that this might be the first one, but I was wrong. I understand that little glitches are going to happen. I can get over that stuff. Luckily for me, I can speak for myself and ensure nothing crazy happens. But this week, a major mistake happened to me. My nurse gave me someone else's IV meds. I usually check the bag once it's hung, but this time I rushed into the shower and didn't see it until I came out. It was an awful feeling to know that something bad had happened, but I wasn't sure how bad. My stomach was in knots. In the end, after insisting that I page my doctor, I was reassured that I'll be alright. I still felt violated; someone had put something into my body that I didn't want.
Don't get me wrong, my CF team is fabulous and I wouldn't trade them for anything. I feel very lucky to be surrounded by staff that have known me for 11 years (since I transferred from the Children's) and care SO much. But the staff I see in hospital (nurses, etc.) aren't in the same category. Some are really nice and competent, and some don't get CF at all and can't even give me the right IV bag.
Glad I'm back at home, safe and sound.
It feels so good to be back at home. My husband hardly sleeps when I'm gone, so it's good we can get back to our routine. This time my hospital stay was a bit different. I usually have tons of visitors, but this time I didn't tell anyone I was in except family and a couple of friends. My family spent lots of time with me (maybe too much?) and two friends came to visit me. I didn't really hear much from my best friends though. Maybe this hospital stuff is getting old fast.
I know I hesitated coming into hospital, but I'm glad that I went in. It's hard to notice the slow decline when I'm occupied at home doing stuff. It's also hard to admit that it's happened already. In hospital, I could see that I started feeling like myself again around the one week mark. The difference was easy to notice because it happened so quickly. As much as I don't enjoy the hospital, it was the right place to be. I can't afford any more damage to my lungs.
I don't know why I can't have an uneventful hospital stay. I thought for a moment that this might be the first one, but I was wrong. I understand that little glitches are going to happen. I can get over that stuff. Luckily for me, I can speak for myself and ensure nothing crazy happens. But this week, a major mistake happened to me. My nurse gave me someone else's IV meds. I usually check the bag once it's hung, but this time I rushed into the shower and didn't see it until I came out. It was an awful feeling to know that something bad had happened, but I wasn't sure how bad. My stomach was in knots. In the end, after insisting that I page my doctor, I was reassured that I'll be alright. I still felt violated; someone had put something into my body that I didn't want.
Don't get me wrong, my CF team is fabulous and I wouldn't trade them for anything. I feel very lucky to be surrounded by staff that have known me for 11 years (since I transferred from the Children's) and care SO much. But the staff I see in hospital (nurses, etc.) aren't in the same category. Some are really nice and competent, and some don't get CF at all and can't even give me the right IV bag.
Glad I'm back at home, safe and sound.
Tuesday, December 1
My Top 10 Things to Bring to Hosptial
These are the things I don't come to the hospital without. They make me more comfortable and the time go by faster.
10. Pillow- those plastic, crinkly, hospital-issue ones suck.
9. Sweatpants & hoodies- comfy clothes are a must!
8. Books & magazines- I usually get a lot of reading done when I'm alone.
7. Post-it notes & pencil- I like to keep track of my own blood sugar numbers, weight etc. while I'm here. Easy reference!
6. Lotion, chapstick & eyedrops- one night in the hospital is enough to suck you dry of all moisture. I am constantly reapplying these things!
5. My insulin & blood sugar kit- My CFRD is fairly well controlled and I only test periodically at home. But in hospital, the expectation is that my blood sugar will be monitored closely. I always bring my own stuff so the nurses don't use theirs... it's more painful and needs a huge amount of blood to test!
4. My port- I don't leave home without it! Since I got it in August, it has made admissions much easier and less stressful. I am SO glad I don't need to get a PICC every single time.
3. Cell phone- an essential to schedule visitors and stay in touch with everyone! I am lucky to have lots of family and friends hang out with me!
2. Laptop- My husband gave me a laptop recently as a present, and I don't know what I did without it! Good for emails, facebook, blogging, itunes and movies!
1. Food & Drinks- I admit that I'm a bit of a hospital food snob. I don't understand how I'm expected to gain weight eating that stuff. Ever heard of a beef salad sandwich? Imagine tiny mushy pieces of roast beef covered in mayonnaise on bread. Did I mention it's a strange grey color?
Needless to say, I am looking forward to going home! One week down already!
10. Pillow- those plastic, crinkly, hospital-issue ones suck.
9. Sweatpants & hoodies- comfy clothes are a must!
8. Books & magazines- I usually get a lot of reading done when I'm alone.
7. Post-it notes & pencil- I like to keep track of my own blood sugar numbers, weight etc. while I'm here. Easy reference!
6. Lotion, chapstick & eyedrops- one night in the hospital is enough to suck you dry of all moisture. I am constantly reapplying these things!
5. My insulin & blood sugar kit- My CFRD is fairly well controlled and I only test periodically at home. But in hospital, the expectation is that my blood sugar will be monitored closely. I always bring my own stuff so the nurses don't use theirs... it's more painful and needs a huge amount of blood to test!
4. My port- I don't leave home without it! Since I got it in August, it has made admissions much easier and less stressful. I am SO glad I don't need to get a PICC every single time.
3. Cell phone- an essential to schedule visitors and stay in touch with everyone! I am lucky to have lots of family and friends hang out with me!
2. Laptop- My husband gave me a laptop recently as a present, and I don't know what I did without it! Good for emails, facebook, blogging, itunes and movies!
1. Food & Drinks- I admit that I'm a bit of a hospital food snob. I don't understand how I'm expected to gain weight eating that stuff. Ever heard of a beef salad sandwich? Imagine tiny mushy pieces of roast beef covered in mayonnaise on bread. Did I mention it's a strange grey color?
Needless to say, I am looking forward to going home! One week down already!
Sunday, November 29
Blue Light Thoughts
I don't know why the blue glow of my IV pump at the hospital late at night gets me thinking. It's hard enough to sleep at the hospital, but when I turn out the lights my mind fills up with thoughts about my CF life. Too much time for reflection I guess.
These couple of days in hospital have been tough. I am more tired than ever before, and coughing more than ever before. I don't even feel like myself until about 4pm when I get a bit of energy. I know things will improve soon when the antibiotics kick in. I have been lucky to be visited and entertained by friends and family, who come regularly with meals and stories to tell me.
There is no doubt that my visits here are getting closer together. In the last year: December, March (home IVs), May, August (home IVs), October, November. I have accepted that I will be here a lot as I wait for transplant. I am still thinking positively, but it's a reality that I understand. It's the nature of CF.
These couple of days in hospital have been tough. I am more tired than ever before, and coughing more than ever before. I don't even feel like myself until about 4pm when I get a bit of energy. I know things will improve soon when the antibiotics kick in. I have been lucky to be visited and entertained by friends and family, who come regularly with meals and stories to tell me.
There is no doubt that my visits here are getting closer together. In the last year: December, March (home IVs), May, August (home IVs), October, November. I have accepted that I will be here a lot as I wait for transplant. I am still thinking positively, but it's a reality that I understand. It's the nature of CF.
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!
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.
Thursday, October 29
Moving Right Along
Okay, I got a phone call this afternoon that there's a cancellation and I can be assessed next week for transplant. I spent the next hour wandering around the house, pumped full of adrenaline, trying to get used to the idea. See, I was originally told that the next available slot was mid-January. I told the pre-transplant coordinator that I was always available and this is my priority... and voila, here's a short-notice opportunity! It's great to be able to do the assessment while I am feeling good and recently off IVs, but I didn't imagine it would be so soon! I feel like I've been caught off guard, but this is good news and I'm happy about it!
Now to back up a little bit...
My transplant journey started on June 25th when my CF doctor sent a referral letter to the Transplant Centre closest to where I live. Three months later on September 24th was the next step… meeting one of the doctors for my initial appointment. This was an opportunity for my support person (my husband) and I to “discuss the possibility of lung transplantation.”
Before the meeting even started I had low blood sugar, so my husband went to find me a chocolate bar. Of course, that’s when we were called in. Wonderful first impression- me light-headed and my husband gone to find a vending machine.
The meeting started with a brief review of my history, then the doctor talked about the program, and then we had a chance to ask our questions. My CF history is rather boring until this year. Since Christmas I have been treated with IVs five times, went on oxygen, got a port, and saw my PFTs (FEV1) dip under 30%.
My husband and I left the meeting feeling pretty good about things. The doctor spoke highly of the program and their stats are well above the international average. They do 38-47 lung transplants per year, which is quite respectable. The most important tidbit we left with was that this IS the right time for me. I am in the window. My lungs are crappy enough but my body is still healthy enough. If your lungs aren’t bad enough, the surgery is hardly worth the risk. If your lungs are bad and your body is too weak, recovery can be compromised. It was reassuring that other doctors can review my medical records and confirm that this is it. There isn’t time to procrastinate and let more exacerbations take their toll.
Good thing I am moving right along!
Now to back up a little bit...
My transplant journey started on June 25th when my CF doctor sent a referral letter to the Transplant Centre closest to where I live. Three months later on September 24th was the next step… meeting one of the doctors for my initial appointment. This was an opportunity for my support person (my husband) and I to “discuss the possibility of lung transplantation.”
Before the meeting even started I had low blood sugar, so my husband went to find me a chocolate bar. Of course, that’s when we were called in. Wonderful first impression- me light-headed and my husband gone to find a vending machine.
The meeting started with a brief review of my history, then the doctor talked about the program, and then we had a chance to ask our questions. My CF history is rather boring until this year. Since Christmas I have been treated with IVs five times, went on oxygen, got a port, and saw my PFTs (FEV1) dip under 30%.
My husband and I left the meeting feeling pretty good about things. The doctor spoke highly of the program and their stats are well above the international average. They do 38-47 lung transplants per year, which is quite respectable. The most important tidbit we left with was that this IS the right time for me. I am in the window. My lungs are crappy enough but my body is still healthy enough. If your lungs aren’t bad enough, the surgery is hardly worth the risk. If your lungs are bad and your body is too weak, recovery can be compromised. It was reassuring that other doctors can review my medical records and confirm that this is it. There isn’t time to procrastinate and let more exacerbations take their toll.
Good thing I am moving right along!
Monday, October 26
Starting a New Routine
I am making a commitment to get back to my strength training routine. In terms of exercise, I always do two 20-minute walks with my dog each day. However, I haven't been doing my weights for a few months now... because I was working and didn't have the time/energy or I didn't feel well enough or various other excuses. I am officially getting back into it!
I believe that physical activity is a HUGE factor in keeping me well. I have played sports all of my life and I have been 'healthy' for the majority. Really, it's only been the past year where things got tough. I kept playing sports right until last Christmas. After that, it was too hard. I couldn't catch my breath after running, and I was so tired after that I immediately crashed once I got home. I even went as far as trying to umpire with an oxygen tank strapped to my back, but that led to other difficulties!
I have really noticed how weak my legs get when I'm sick, particularly in hospital. If I squat, my legs shake when I try to stand back up. I don't like that feeling. I know after transplant I'll be even less active for the first couple of months. I want to get my strength back now.
The RT from my oxygen company is coming over today to exchange my concentrator. The one I have now only goes up to 5 LPM. After my last hospital stay, I'm already sitting at 4. I will need more O2 if I'm going to get through my routine. Plus, I will also start using our treadmill again when the snow sticks around and I can't do a good 20-minute walk outside. If I am going to walk on the treadmill, I might as well try running. It'll take me a while to get there, but I am going to do it. It's funny- lately I don't even use expressions like 'running errands' or 'run over to the store' because it's obviously not true. I better do something about that!
I believe that physical activity is a HUGE factor in keeping me well. I have played sports all of my life and I have been 'healthy' for the majority. Really, it's only been the past year where things got tough. I kept playing sports right until last Christmas. After that, it was too hard. I couldn't catch my breath after running, and I was so tired after that I immediately crashed once I got home. I even went as far as trying to umpire with an oxygen tank strapped to my back, but that led to other difficulties!
I have really noticed how weak my legs get when I'm sick, particularly in hospital. If I squat, my legs shake when I try to stand back up. I don't like that feeling. I know after transplant I'll be even less active for the first couple of months. I want to get my strength back now.
The RT from my oxygen company is coming over today to exchange my concentrator. The one I have now only goes up to 5 LPM. After my last hospital stay, I'm already sitting at 4. I will need more O2 if I'm going to get through my routine. Plus, I will also start using our treadmill again when the snow sticks around and I can't do a good 20-minute walk outside. If I am going to walk on the treadmill, I might as well try running. It'll take me a while to get there, but I am going to do it. It's funny- lately I don't even use expressions like 'running errands' or 'run over to the store' because it's obviously not true. I better do something about that!
Friday, October 23
65_RedRoses
Have you heard about the documentary 65_RedRoses? It's a film is based on the lung transplant journey of Eva, a 23 year-old with CF from Vancouver. It starts with Eva on the transplant list, declining and spending lots of time in the hospital as the months drag on. The film also focuses on two relationships that Eva has made with other CFers online, and how these girls deal with their current CF lives plus support each other.
I was thrilled to finally see the film. I had to get a day pass to leave the hospital, but I wasn't about to miss it. I highly recommend watching it. It's a real look into life with CF and the wait for new lungs. The film does an amazing job of capturing that. I have been reading Eva’s blog for some time, and her zest for life and fun-loving personality jump out at you immediately. Two years after transplant, Eva’s story continues off-camera. My thoughts are with Eva as she continues her fight. She is amazing.
To check out the trailer and for more info, see 65redroses.com or http://www.youtube.com/watch?v=fMGUXOtFxjc. A shorter version of the film will air on CBC Newsworld’s Passionate Eye on November 16, 2009 at 10pm EST. I am looking forward to it- I want all of my friends and family to watch, plus it's great awareness for CF and organ donation!
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