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.
Sunday, November 29
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!
Monday, November 23
PFT Fun
This morning I had an appointment for full PFTs. I don't think I've ever had such a hard time doing them. I have been coughing non-stop since 2:30am and I'm tired! The only reason I know that is because my husband told me... I didn't wake up until 6:30! I always wake him up when I cough at night but I usually sleep through it. Sorry about that. Anyways, despite the crazy coughing, my FEV1 was 27% pre-ventolin and 29% post.
The reason I needed to do PFTs outside of clinic was for my transplant centre. They called last week and said the PFTs they had weren't complete. I also needed to do them for my oxygen funding. In Alberta, the government pays 75% of my oxygen & supplies costs and I have only been approved until mid-December. I was surprised that PFTs were acceptable, because in the past they've done an arterial blood gas or a walk test.
I am getting anxious to hear back from my transplant centre. If everything goes according to plan, they will be reviewing my assessment results this week. I should hear back soon whether I'm a candidate or not for lung transplant. I am expecting good news, but I am still anxious!
The reason I needed to do PFTs outside of clinic was for my transplant centre. They called last week and said the PFTs they had weren't complete. I also needed to do them for my oxygen funding. In Alberta, the government pays 75% of my oxygen & supplies costs and I have only been approved until mid-December. I was surprised that PFTs were acceptable, because in the past they've done an arterial blood gas or a walk test.
I am getting anxious to hear back from my transplant centre. If everything goes according to plan, they will be reviewing my assessment results this week. I should hear back soon whether I'm a candidate or not for lung transplant. I am expecting good news, but I am still anxious!
Tuesday, November 17
The Big Issues
Well, I'm happy to report that procrastinating one day worked out well for me for getting the H1N1 vaccine. There was absolutely no line-up, so I was in and out in no time! I am also happy that 65_RedRoses was on tv last night. This version was well-edited, and had great impact while being very inspiring. I am so glad that my friends, family and co-workers watched it. I have appreciated every email, facebook post and phone call in response to the film. I think it really gave people an idea of what I'm going through.
Watching the film again made me examine where I am emotionally in the whole tx process. I think I have come a long way in the last few weeks since my last hospitalization. Going in last time was hands-down the worst I've ever felt. Being so short of breath scared me. My tx assessment appointment also helped me along. I think getting to see the hospital, meet the staff, and take the next step in the process was very beneficial. However, when I watch the film and see how excited Eva is to get the call and be wheeled into surgery, I realize I still have a little ways to go. I like to make lists, so here's a list of my hang-ups, in no particular order:
1. The pain. I have talked to others transplantees and most of them report that the pain was pretty well managed. It still freaks me out to think about the pain I might experience post-surgery. You'd think with all of the PICCs and IVs I've had that I'd get desensitized to the pain factor, but that's not the case. I think it's mostly psychological... but it's still there.
2. The anxiety of waiting and getting the call. I can't even imagine the tension of waiting and waiting and then getting the call. It's overwhelming to me. I try to imagine myself getting the call and being prepped for surgery, and the anxiety and significance of that time is almost too much.
3. How my family is and will be involved. I am lucky to have the most supportive husband ever. But some other family members worry me. I know everyone has to deal with this at their own pace, but I wonder about how much progress is happening. I have been very open and honest and have kept everyone up-to-date. But like I said, I don't know how far we're getting. For example, after convincing my dad to watch the film last night, he calls to ask if I have a pager and says he doesn't even know if I'm on the list or not. I also worry about how everyone will get along when we're living in Edmonton post-surgery and I don't have the capacity/energy to mediate between my support people. I still have some work to do here.
Alright, I think that's it, there's no #4. I am down to three issues. The first two are mine to get over as much as possible, but that third one will take some strategy. I am going have to think about it and make some decisions. I hate the stress of dealing with my family... it's hard to think how four people can be so... different? difficult? complicated? I don't even know how to describe it, but every family has their own issues and we're no exception.
Watching the film again made me examine where I am emotionally in the whole tx process. I think I have come a long way in the last few weeks since my last hospitalization. Going in last time was hands-down the worst I've ever felt. Being so short of breath scared me. My tx assessment appointment also helped me along. I think getting to see the hospital, meet the staff, and take the next step in the process was very beneficial. However, when I watch the film and see how excited Eva is to get the call and be wheeled into surgery, I realize I still have a little ways to go. I like to make lists, so here's a list of my hang-ups, in no particular order:
1. The pain. I have talked to others transplantees and most of them report that the pain was pretty well managed. It still freaks me out to think about the pain I might experience post-surgery. You'd think with all of the PICCs and IVs I've had that I'd get desensitized to the pain factor, but that's not the case. I think it's mostly psychological... but it's still there.
2. The anxiety of waiting and getting the call. I can't even imagine the tension of waiting and waiting and then getting the call. It's overwhelming to me. I try to imagine myself getting the call and being prepped for surgery, and the anxiety and significance of that time is almost too much.
3. How my family is and will be involved. I am lucky to have the most supportive husband ever. But some other family members worry me. I know everyone has to deal with this at their own pace, but I wonder about how much progress is happening. I have been very open and honest and have kept everyone up-to-date. But like I said, I don't know how far we're getting. For example, after convincing my dad to watch the film last night, he calls to ask if I have a pager and says he doesn't even know if I'm on the list or not. I also worry about how everyone will get along when we're living in Edmonton post-surgery and I don't have the capacity/energy to mediate between my support people. I still have some work to do here.
Alright, I think that's it, there's no #4. I am down to three issues. The first two are mine to get over as much as possible, but that third one will take some strategy. I am going have to think about it and make some decisions. I hate the stress of dealing with my family... it's hard to think how four people can be so... different? difficult? complicated? I don't even know how to describe it, but every family has their own issues and we're no exception.
Saturday, November 14
What's One More Day?
I feel like I'm the only one who hasn't gotten their H1N1 shot yet! Alberta has made a mess of getting the shot to those who need it most. When the vaccine first became available, the government allowed anyone and everyone to get it. This resulted in six-hour waits outside in freezing cold weather and crowds of hundreds of people. Plus, in my city, there were only four makeshift clinics where the vaccine would be distributed. I refused to join the line at that point and expose myself to who knows what. Not surprisingly, Alberta was identified as having the poorest response in all of Canada.
After the vaccine ran out, the provincial government had some time to restructure the process. When new stock came in, they decided to slowly add high risk groups to avoid major line-ups. Finally the last high risk group, 18-44 year-olds with chronic conditions, is allowed to get their shot today. Yay, that's me!
So, after all of this criticism, I think I'll wait another day to get the shot! Today is my birthday, and I'd like to stay clear of needles! I think that's a nice birthday present to myself. Hopefully the clinics will be less busy tomorrow so I won't have to stand for too long!
After the vaccine ran out, the provincial government had some time to restructure the process. When new stock came in, they decided to slowly add high risk groups to avoid major line-ups. Finally the last high risk group, 18-44 year-olds with chronic conditions, is allowed to get their shot today. Yay, that's me!
So, after all of this criticism, I think I'll wait another day to get the shot! Today is my birthday, and I'd like to stay clear of needles! I think that's a nice birthday present to myself. Hopefully the clinics will be less busy tomorrow so I won't have to stand for too long!
Wednesday, November 11
Canadian Girls
The lack of awareness about CF always amazes me. It seems that unless a person actually knows me or another CFer, they don't know what CF is. Health care professionals included. It's always fun when a nurse asks me when/how I got CF! Seriously. I could go on and on about CF awareness, but maybe I'll save that for another post. At any rate, I try to do my part.
I'd like to recognize the effort others have gone to for CF awareness. There are so many fabulous CFers who are doing wonderful things. This includes the CF bloggers who all do an amazing job for CF awareness. Their followers include not only CFers, their parents, friends and family, but people who had never heard of CF before. I think that's really special.
There are two other bloggers, interestingly the only two Canadian blogs I've found, who have done an unbelievable job about CF awareness lately. Both are on the transplant list and everyday is a struggle. Eva (65_RedRoses) has starred as herself in a documentary about lung transplant. It has opened across Canada in various film festivals, and has been winning awards left and right. It will be on prime time tv on Monday. See my previous post for all of the details. Natalia (Journey of a Lifetime) has recently been on the front page of a Toronto newspaper with her story of CF, surrogacy, and blogging. She has also been on tv, sharing her life and story with viewers everywhere.
Both of these Canadian girls are inspirations. It makes me wonder how I can do the same.
I'd like to recognize the effort others have gone to for CF awareness. There are so many fabulous CFers who are doing wonderful things. This includes the CF bloggers who all do an amazing job for CF awareness. Their followers include not only CFers, their parents, friends and family, but people who had never heard of CF before. I think that's really special.
There are two other bloggers, interestingly the only two Canadian blogs I've found, who have done an unbelievable job about CF awareness lately. Both are on the transplant list and everyday is a struggle. Eva (65_RedRoses) has starred as herself in a documentary about lung transplant. It has opened across Canada in various film festivals, and has been winning awards left and right. It will be on prime time tv on Monday. See my previous post for all of the details. Natalia (Journey of a Lifetime) has recently been on the front page of a Toronto newspaper with her story of CF, surrogacy, and blogging. She has also been on tv, sharing her life and story with viewers everywhere.
Both of these Canadian girls are inspirations. It makes me wonder how I can do the same.
Monday, November 9
Clinic Visit
I had my regular clinic visit today. Everything went well- both my PFTs and weight were stable. I have been feeling great overall since I got off of IVs mid-October, but this weekend I noticed a slight increase in SOB, cough and production. I'm keeping an eye on it. Everyone says how exhausting assessment week is... it often leads to a round of IVs. I'd rather be the exception and stay away from those!
All of the staff were excited to hear about my assessment. I had a few issues to take care of at clinic, including getting some referrals to see specialists before transplant. I also had to discuss what to take during my month off of Azli, the new antibiotic I'm on. It was decided that I'll take an oral antibiotic for the off month and see how that goes. I also had to get my monthly port flush today. It didn't flush well last time when I ended my IVs, but today it flushed easily. That was a relief! I even remembered to bring some emla to numb the skin over my port, and it worked like a charm. I didn't feel a thing!
Next visit is in one month!
All of the staff were excited to hear about my assessment. I had a few issues to take care of at clinic, including getting some referrals to see specialists before transplant. I also had to discuss what to take during my month off of Azli, the new antibiotic I'm on. It was decided that I'll take an oral antibiotic for the off month and see how that goes. I also had to get my monthly port flush today. It didn't flush well last time when I ended my IVs, but today it flushed easily. That was a relief! I even remembered to bring some emla to numb the skin over my port, and it worked like a charm. I didn't feel a thing!
Next visit is in one month!
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