My cystic sister lindsay got her call. She is the lovely lady who updated my blog so faithfully during my transplant. I'm repaying the favour, and you can check out how awesome she is doing here http://laby-lol.blogspot.com. Click here for Lungs Out Loud.
It was a really emotional day yesterday.
I didn't know whether to be ecstatic for lindsay or sad or scared.
One of my friends who has CF passed away yesterday, Jessica. She was 24 and from orangeville. She went in to the hospital with a sinus infection I believe and just could not fight it. She had been sick and on IV antibiotics for 2 years due to catching the bacteria cepacia. The infection coupled with the bacteria was too much for her and she passed away. I never met Jessica in person, but we emailed each other back and forth. She loved her boyfriend and family and friends very much. I could tell from her emails what a great gal she was. She was always so inquisitive, and just seemed like such a sweet girl. I'm so so so sorry to her family, to james, and to her close friends. What a loss the world has had. Rest in peace dear Jess. I know what a struggle it is to breathe and you my friend struggled for so long. CF warrior you were my dear. We'll keep fighting the fight for you. CF is not fair. Not fair at all.
Showing posts with label new lungs. Show all posts
Showing posts with label new lungs. Show all posts
Thursday, November 24, 2011
Tuesday, July 6, 2010
First Day With New Lungs!
As promised, a more detailed account of H's first day of recovery!
Around 8 am H's parents arrived at the ICU. They had seen her the night before when she was sedated, but the nurse instructed them to go home to rest and come back refreshed in the morning. Fortunately, they were able to stay at a friend's condo downtown, which is only a 20 minute walk away. The visit did not start out smoothly...for H's mom, wouldn't you know the poor woman FAINTED? She later said it was a combination of the heat, stress (seeing H connected to countless tubes and wires) and lack of eating anything substantial--only some cheese and crackers the day before. The nurse sat her mom outside the room and told her to go get some breakfast. GET SOME FOOD IN THAT WOMAN, STAT!
H, meanwhile was currently busy learning to breath with the ventilator. She would later tell her parents that this was one of the hardest things to do--learn to breath. I've heard a few post-tx friends try to describe how difficult it is to me, because with CF you are so used to laboured, quickened and shallow breaths that breathing, really breathing, is a whole new realm--a whole new learning experience. I can't wait for H to come on here and give you her own account!
By mid-morning they were able to remove the breathing tube completely, which meant she no longer had to frantically scribble notes and questions to her family and nurse. She is now only on 3 L of 02, which is pretty close to what she was on pre-tx. BUT instead of sats at 89-90 (which she was before tx on about the same amount of 02) she is now resting at 100%. Top of the class!
So she is now able to talk freely, but her voice is reduced to a whisper still due to the pain and the feeding tube (aka NG tube). She has a pain pump, so while she still feels pain--she is significantly stoned, I'm sure.
Since they want you moving ASAP after tx, they had H sitting up in a chair this morning and then had her stand up and walk around with a special walker later on. Despite the chest tubes, IV pumps, catheters and NG tube, she apparently did very well! Understandably she was whipped after and needed a rest.
By noonish, H's dad said that she was "Hattie again". Her mom said as early as last night that her eyelids--for the first time in years--were not so dark, they were back to their normal colour, and her complexion is already pink. Talking to her today, she said she has her 'kick' back and has a sense of hope now. Hattie is back in the building, folks! WATCH OUT.
Of course, she still has a long way to go and everything is day-by-day. Dr. C, who is a Dr. at both St. Mikes and TGH (she serves as our 'bridge') came up to visit them today and said that she is not out of the woods just yet. She said it will be like a rollercoaster and there will be good days and bad days.
For now, Hattie remains in the ICU and has all her chest tubes, IV poles, 02, catheter and an NG tube to deal with. One by one as they are taken away, H will get closer to home. And eventually, sitting on that beach in Barbados!
Our girl is making great progress!
P.S. A sidenote I nearly forgot to include: Today Hattie decided to 'test' her new lungs out by holding her breath and then taking in a huge deep breath afterward. I know she has talked about doing this--getting the air deep down in her lungs--for a long time. And she was elated to finally give it a go.
- Lindsay
Around 8 am H's parents arrived at the ICU. They had seen her the night before when she was sedated, but the nurse instructed them to go home to rest and come back refreshed in the morning. Fortunately, they were able to stay at a friend's condo downtown, which is only a 20 minute walk away. The visit did not start out smoothly...for H's mom, wouldn't you know the poor woman FAINTED? She later said it was a combination of the heat, stress (seeing H connected to countless tubes and wires) and lack of eating anything substantial--only some cheese and crackers the day before. The nurse sat her mom outside the room and told her to go get some breakfast. GET SOME FOOD IN THAT WOMAN, STAT!
H, meanwhile was currently busy learning to breath with the ventilator. She would later tell her parents that this was one of the hardest things to do--learn to breath. I've heard a few post-tx friends try to describe how difficult it is to me, because with CF you are so used to laboured, quickened and shallow breaths that breathing, really breathing, is a whole new realm--a whole new learning experience. I can't wait for H to come on here and give you her own account!
By mid-morning they were able to remove the breathing tube completely, which meant she no longer had to frantically scribble notes and questions to her family and nurse. She is now only on 3 L of 02, which is pretty close to what she was on pre-tx. BUT instead of sats at 89-90 (which she was before tx on about the same amount of 02) she is now resting at 100%. Top of the class!
So she is now able to talk freely, but her voice is reduced to a whisper still due to the pain and the feeding tube (aka NG tube). She has a pain pump, so while she still feels pain--she is significantly stoned, I'm sure.
Since they want you moving ASAP after tx, they had H sitting up in a chair this morning and then had her stand up and walk around with a special walker later on. Despite the chest tubes, IV pumps, catheters and NG tube, she apparently did very well! Understandably she was whipped after and needed a rest.
By noonish, H's dad said that she was "Hattie again". Her mom said as early as last night that her eyelids--for the first time in years--were not so dark, they were back to their normal colour, and her complexion is already pink. Talking to her today, she said she has her 'kick' back and has a sense of hope now. Hattie is back in the building, folks! WATCH OUT.
Of course, she still has a long way to go and everything is day-by-day. Dr. C, who is a Dr. at both St. Mikes and TGH (she serves as our 'bridge') came up to visit them today and said that she is not out of the woods just yet. She said it will be like a rollercoaster and there will be good days and bad days.
For now, Hattie remains in the ICU and has all her chest tubes, IV poles, 02, catheter and an NG tube to deal with. One by one as they are taken away, H will get closer to home. And eventually, sitting on that beach in Barbados!
Our girl is making great progress!
P.S. A sidenote I nearly forgot to include: Today Hattie decided to 'test' her new lungs out by holding her breath and then taking in a huge deep breath afterward. I know she has talked about doing this--getting the air deep down in her lungs--for a long time. And she was elated to finally give it a go.
- Lindsay
Monday, June 28, 2010
at what point?
I'm getting scared.
Today I can't do anything. I went for a walk, if you want to call it that, around the property to stretch my legs with my mom, and I now look like a feeble crippled person. The type you see in physio who are just so fatigued, sick and old.
It's getting harder and harder. My white blood cell count has been rising all week...meaning infection and I've started coughing up a bit of blood again...I'm getting scared. At what point do your lungs stop working? I'm down to 17% lung function, and each week, it keeps going in the wrong direction.... Things are not keeping stable. This is a scary game to play.
I need some reassurance from the doctors tomorrow. I called them today, and we'll do all the regular tests tomorrow at clinic...Lungs, where are you? I really, really, really, need you now...
Old lungs, please keep breathing...please keep pumping, just a little bit longer, the new ones are coming, they are, they are. please come soon.
Today I can't do anything. I went for a walk, if you want to call it that, around the property to stretch my legs with my mom, and I now look like a feeble crippled person. The type you see in physio who are just so fatigued, sick and old.
It's getting harder and harder. My white blood cell count has been rising all week...meaning infection and I've started coughing up a bit of blood again...I'm getting scared. At what point do your lungs stop working? I'm down to 17% lung function, and each week, it keeps going in the wrong direction.... Things are not keeping stable. This is a scary game to play.
I need some reassurance from the doctors tomorrow. I called them today, and we'll do all the regular tests tomorrow at clinic...Lungs, where are you? I really, really, really, need you now...
Old lungs, please keep breathing...please keep pumping, just a little bit longer, the new ones are coming, they are, they are. please come soon.
Monday, May 17, 2010
tired.
Today was a bit of a harder day. I'm mentally a bit fatigued today. I'm hoping tomorrow will bring warm weather, less pain, and easier breathing.
Today my oxygen is quite low, now needing oxygen sometimes just sitting. It's also more difficult to hold a conversation as my voice is weaker from lack of air...
One of my favourite docs is on the ward this week. I cherish her dearly. She decided to try switching the drugs today, to see if we can get some more improvement, again the plan is to try to get me stable so I can go home and wait for this new gift, these new lungs.
It's scary not knowing when the new lungs will come, it's scary not knowing how much worse will I get. I just have to take each day one day at at time. I cannot think too far in the future, even a week, a month, that's too much, just tomorrow. We'll deal with tomorrow. I think that will be easier, less scary. Today is a tiring day. Which is why it was so nice to receive a bouquet of flowers, sun flowers because "I'm sunny" from one of my best friends N. Thanks girl. I love you. They came on the perfect day.
I think these new drugs will help me though. One of them I have never been on before, so that's good. My doctor also has some back up plans, so that is always nice to know they are not out of options for medicine yet, although it's getting down to the last grind. I hope these new drugs are able to clear up this pain in my lungs...sometimes it is so painful to even touch, it made me feel a bit nauseous when I put my hand on it, (I guess that's a sign I shouldn't be touching that spot right? ha)
Today I went out for a 45 minute walk around the hospital with my mom. I wore oxygen out today. I have to keep going out for walks and getting on the stationary bike as I can feel my muscles melting in here. I want to "walk in" to surgery, so I can "walk out". The better shape you are the less recovery time. It's interesting watching people's reactions, I ponder what they are thinking when they see a young 22 year old girl (dressed as a cool chic! haha) walking around with oxygen...I should wear a sign, I have a cystic fibrosis, and am waiting for a new gift of life, a double lung transplant. Organ Donation saves lives. "Don't take your organs to heaven, heaven knows we need them here", something to that effect. Then they wouldn't have to ponder anymore. They would know.
I used to dread whenever I would get sick in the past 6 months and require oxygen...now I don't really mind walking around with it, I guess I'm past that point...I just want these new lungs. I want to start living again. Today me and my mom were brainstorming for post tx when I will open up my own clothing store, where Hattitude jewellery will be sold as well. It's going to be so much fun. I really cannot wait, because it is something I was never going to be able to do prior to a lung transplant. Maybe that it something I will start to plan and write, a business plan for my new store. Any ideas for the store name? They say waiting is the worst part for new lungs, and writing a business plan might be a nice distraction. This Friday I will officially be listed.
Today my oxygen is quite low, now needing oxygen sometimes just sitting. It's also more difficult to hold a conversation as my voice is weaker from lack of air...
One of my favourite docs is on the ward this week. I cherish her dearly. She decided to try switching the drugs today, to see if we can get some more improvement, again the plan is to try to get me stable so I can go home and wait for this new gift, these new lungs.
It's scary not knowing when the new lungs will come, it's scary not knowing how much worse will I get. I just have to take each day one day at at time. I cannot think too far in the future, even a week, a month, that's too much, just tomorrow. We'll deal with tomorrow. I think that will be easier, less scary. Today is a tiring day. Which is why it was so nice to receive a bouquet of flowers, sun flowers because "I'm sunny" from one of my best friends N. Thanks girl. I love you. They came on the perfect day.
I think these new drugs will help me though. One of them I have never been on before, so that's good. My doctor also has some back up plans, so that is always nice to know they are not out of options for medicine yet, although it's getting down to the last grind. I hope these new drugs are able to clear up this pain in my lungs...sometimes it is so painful to even touch, it made me feel a bit nauseous when I put my hand on it, (I guess that's a sign I shouldn't be touching that spot right? ha)
Today I went out for a 45 minute walk around the hospital with my mom. I wore oxygen out today. I have to keep going out for walks and getting on the stationary bike as I can feel my muscles melting in here. I want to "walk in" to surgery, so I can "walk out". The better shape you are the less recovery time. It's interesting watching people's reactions, I ponder what they are thinking when they see a young 22 year old girl (dressed as a cool chic! haha) walking around with oxygen...I should wear a sign, I have a cystic fibrosis, and am waiting for a new gift of life, a double lung transplant. Organ Donation saves lives. "Don't take your organs to heaven, heaven knows we need them here", something to that effect. Then they wouldn't have to ponder anymore. They would know.
I used to dread whenever I would get sick in the past 6 months and require oxygen...now I don't really mind walking around with it, I guess I'm past that point...I just want these new lungs. I want to start living again. Today me and my mom were brainstorming for post tx when I will open up my own clothing store, where Hattitude jewellery will be sold as well. It's going to be so much fun. I really cannot wait, because it is something I was never going to be able to do prior to a lung transplant. Maybe that it something I will start to plan and write, a business plan for my new store. Any ideas for the store name? They say waiting is the worst part for new lungs, and writing a business plan might be a nice distraction. This Friday I will officially be listed.
Thursday, February 18, 2010
avatar
I wish that I could have my own Avatar. As I was watching this movie, and Jake Sully got to run with legs again and how much of a thrill and how amazing it was for him to get legs again, I just kept thinking about getting my own avatar. I kept thinking, ah wouldn't that be great if I had an Avatar and could have new lungs and be able to run too. I wish I had an avatar to give to Eva and all the other cystas and fibros out there waiting for new lungs...hang on guys, we may not have avatars....yet (maybe one day?)...but your lungs will come.
Wishing you a little less pain and a little easier to breathe today.
Saturday, November 21, 2009
Natalia gets the call!!!
Yay today is a good day. Natalia got the call for her lungs!!!! Thank you so much to the donor family who was able to give Natalia, Scarlett and Martin a second chance. Natalia I am thinking of you this afternoon as you get some new working lungs!
Thursday, November 12, 2009
Organ Donation
Please spread the word about organ donation...this woman who I have started following her blog via the internet is dying waiting for her double lung transplant. Natalia has a beautiful daughter Scarlett, and husband and family, and she recently took a turn for the worst, as her bottom lungs collapsed, she coughs up more blood every day, and now today she was put on a ventilator and transported to a different hospital to wait for her new lungs.
She was featured in a great article in the star the other week "blogging till the last breath".
She also is being feature in a three part series on CBC "On a mission" click on the link for the first installment http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs.html of the series.
Here is the second link to watch after your done the first video. http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1327354374. if this link doens't work for you you can try this one http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs-pt-two.html
Send out positive thoughts and vibes to Natalia please.....she needs these lungs so much.
She was featured in a great article in the star the other week "blogging till the last breath".
She also is being feature in a three part series on CBC "On a mission" click on the link for the first installment http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs.html of the series.
Here is the second link to watch after your done the first video. http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1327354374. if this link doens't work for you you can try this one http://www.cbc.ca/connect/2009/11/on-a-mission-new-lungs-pt-two.html
Send out positive thoughts and vibes to Natalia please.....she needs these lungs so much.
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