Today was our Great Strides walk. I was so excited for the walk this year. I have been participating in the walk long before it was called Great Strides. My friends and family have been walking along with me, particularly these last few years. Last year, my husband as team captain stepped up the fundraising side of things. This year we continued to build on that. I'm SO proud to say that...
Team Smith raised over $23,000 for CF!!!
Team Smith was the #1 team in our city!!!
Of the top walkers, my sister & brother in law were #2 in our city!!!
Team Smith was the #10 top team in Canada!!!
38 people walked for me!!!
Team Smith had over 200 sponsors!!!
Despite the cold weather (yes, it was snowing early this morning) we had a wonderful turnout. Everyone went above and beyond to raise money and awareness for CF. I am moved to tears when I think about how many people care about me and are trying to help raise money to find a cure for CF. I don't know what I did to deserve so many wonderful people in my life. It makes me feel happy and loved! The walk always feels like my birthday- a special day just for me! I couldn't ask for more- all of my favorite people together in one place!
It's also special that we actually know some brilliant CF researchers who are making a difference in CF... and have personally helped me with their research. It is so exciting to hear what's happening firsthand and to see the "great strides" they have made, particularly in the microbiology area. It is fascinating!!!
Looking forward to the day when CF stands for Cure Found!
Sunday, May 30
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!
Wednesday, May 19
CF Friends
Great news- James got his lungs! It's so exciting to be part of the online CF community and hear about others getting transplants and starting a new life. I know I've benefited from the support of others going through the same stages, feelings and issues that I am. It means a lot to know that I'm not alone and that my current life isn't so strange!
I have been expanding my CF network at home too. Facebook has been a great tool to chat with others that I may only see once a year at clinic or at a fundraiser. Even though I'm a regular at clinic now, it's not a great place to chat and get to know people. Facebook works much better! There's even a couple of CFers that are going through the tx process too, but I am ahead of them all at this point. There are also CFers that are post-transplant that I am learning so much from. I know I'm lucky to have their guidance and encouragement.
I also have two childhood CFer friends that I don't see on a regular basis, but catch up with every now and then. I have been in touch with them both lately. Can't say the news was good though. One of them is also on the road to transplant after a rapid decline. The other has been diagnosed with cancer. I know both of them will do well and be healthy again, but it makes me mad. Isn't CF enough?!?
I have been expanding my CF network at home too. Facebook has been a great tool to chat with others that I may only see once a year at clinic or at a fundraiser. Even though I'm a regular at clinic now, it's not a great place to chat and get to know people. Facebook works much better! There's even a couple of CFers that are going through the tx process too, but I am ahead of them all at this point. There are also CFers that are post-transplant that I am learning so much from. I know I'm lucky to have their guidance and encouragement.
I also have two childhood CFer friends that I don't see on a regular basis, but catch up with every now and then. I have been in touch with them both lately. Can't say the news was good though. One of them is also on the road to transplant after a rapid decline. The other has been diagnosed with cancer. I know both of them will do well and be healthy again, but it makes me mad. Isn't CF enough?!?
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!
Saturday, May 15
Good News Story
I was thrilled to see this story make front page news! An eight year old with CF got his lung transplant at my tx centre! I have to admit that I had been pretty worried about him. Pediatric transplants are much less common and I know that donors are harder to come by. I am so happy that he's doing well.
To read the full story click here or here.
To watch a 2 minute video clip, click here.
To read the full story click here or here.
To watch a 2 minute video clip, click here.
Tuesday, May 11
GI Tests
I was booked for two tests today, a GI Motility Study and a GI Impedance Study. I prepared for the tests by not eating or drinking for six hours (so basically since bedtime). For the first test they thread a big tube down my nose to my stomach. It has lots of sensors and creates a picture of my esophagus and by swallowing sips of water they can see how well everything is working, including the two sphincters. Well, the nurse was a little cold and robotic. She rammed the tube (the size of my O2 tubing) quickly down. It was very uncomfortable, and I immediately begin gagging, crying and throwing up. I think she's used to people dry heaving on empty stomachs, so she had nothing ready for when I brought up loads of mucus that I must have coughed up and swallowed overnight. I threw up all over myself repeatedly until she finally gave me a towel. Ugh, it was awful and I couldn't help myself. After about 20 minutes I stopped coughing and could start settling down. I think the nurse panicked and the most experienced tech stepped in to continue. I did all of the swallows required, no problem. Pulling the tube was unpleasant, but it was out in a couple of seconds.
After a bit of recovery time, it was time for the next test. A thin tube was placed down my nose and positioned to sit above my stomach. The tech did a much better job inserting the tube, plus the tube was much smaller, so there were no issues. This tube will stay for 24 hours and is attached to a small computer that will record the pH, which determines if there's any reflux. I just need to press a button when I sit/lay down, start/stop eating, and if I cough, burp or have heartburn. It's a little uncomfortable because I can feel something stuck in the back of my throat every time I swallow. As long as I don't think about it too much, I'm okay with it. I had a wicked headache afterward and needed a nap. Looking forward to having the tube out tomorrow!!!
My clinic last week went much better and I left feeling like we had some solid possibilities to explore. First of all, I stopped the Spiriva. Secondly, I started an inhaled steriod, Symbicort. Thirdly, it looks like I have some form of sleep apnea. My husband has noticed that I stop breathing at night, which has developed in the last month or two. I will be booked for a sleep study at some point- I'm not breathing well to begin with, so sleep apnea is not a good thing! I continued to turn down the anti-anxiety meds, although we spent a lot of time talking about them. I did PFTs as well. My FEV1 was 27% and my FVC was 42%. No surprises there, that's what I expected to see!
After a bit of recovery time, it was time for the next test. A thin tube was placed down my nose and positioned to sit above my stomach. The tech did a much better job inserting the tube, plus the tube was much smaller, so there were no issues. This tube will stay for 24 hours and is attached to a small computer that will record the pH, which determines if there's any reflux. I just need to press a button when I sit/lay down, start/stop eating, and if I cough, burp or have heartburn. It's a little uncomfortable because I can feel something stuck in the back of my throat every time I swallow. As long as I don't think about it too much, I'm okay with it. I had a wicked headache afterward and needed a nap. Looking forward to having the tube out tomorrow!!!
My clinic last week went much better and I left feeling like we had some solid possibilities to explore. First of all, I stopped the Spiriva. Secondly, I started an inhaled steriod, Symbicort. Thirdly, it looks like I have some form of sleep apnea. My husband has noticed that I stop breathing at night, which has developed in the last month or two. I will be booked for a sleep study at some point- I'm not breathing well to begin with, so sleep apnea is not a good thing! I continued to turn down the anti-anxiety meds, although we spent a lot of time talking about them. I did PFTs as well. My FEV1 was 27% and my FVC was 42%. No surprises there, that's what I expected to see!
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