Today has not been my day. I had a CF clinic appointment this morning that I entered feeling very hopeful and left feeling very opposite-of-hopeful. The good news is that I have not been admitted to the hospital. The bad news is that the only reason I have not been admitted is because I've previously had a reaction to the IV medication that they wanted to try.
I was hopeful going into this appointment because I'm no longer symptomatic of having an infection, I have more energy than a few weeks ago, and I have returned to exercising with success at physio. I figured that with all the meds I'm on, my lung function would at least be up 3-5%. Every other time I've been on IV medication or just really strong antibiotics, my lung function has always jumped up a significant amount. It has rarely ever stayed up there but at least I get a bit of a 'medication boost' for a few weeks.
Today, however, nothing. Zero improvement. I kept telling the respirology therapist that it should be higher and he kept tactfully saying,"well, it's not." The readout on the report actually said 'increased by 0%.' If I could have thrown something angrily across the room after I did my lung function test, I would have.
Not reacting to treatment is a terrifying horrible thing. Basically my lungs have defeated everything science has to offer. The doctors are running out of options for things to do. And while at this point, it's mostly all about maintaining what little lung function is left until a possible transplant, it would still be nice if my lungs could improve a little bit. Instead of remaining at the ever-so-scarily low at 21%, or .69 FEV1. Otherwise I'm going to have nothing left if I get a cold or worse, the flu or pneumonia. Ahhhh, I could really use that transplant about now.
Before I moved up here to be listed (when I was still imagining getting my lungs at the 8 month mark and moving back home after one year), I said that I wished it was possible for me to wait until my lungs were at their absolute last chance and get the transplant then when I knew 100% there was no chance of living much longer. I guess the saying is true that you should be careful what you wish for.
What a shitty day. I don't know if even a trashy chick-lit novel and bag of chips is going to fix this.
Tuesday, 30 September 2014
Saturday, 27 September 2014
Cooking: Pumpkin Spice Latte or Squash Spice Cappuccino
Yesterday while Jason was still here, I put him to good 'support person' use by asking him to cut up a squash for me (because cutting up squash is the worst). I'm sure that is exactly what he had in mind when he asked if there was anything I needed done.
While I had some of the squash for supper, I cooked up a bit of it early to try to make a pumpkin spice latte. Since I've seen it advertised everywhere, I figured I should see what the fuss is about. After 10 seconds of Internet research, I discovered that most of the 'pumpkin spice' items are basically just cinnamon and ginger with no actual pumpkin flavouring. It's basically the same as Gingerbread flavouring with slightly less ginger. They should really just call it 'Cinnamon and other yummy spices' flavouring.
I wanted an actual pumpkin flavor so I perused the Internet for recipes that used pumpkin and mixed what I thought sounded the best and then tweaked it as I went along.
Alley's Pumpkin Spice Latte or, realistically, Squash Spice Cappuccino (trademark! I'm sure that name will be just as popular as PSL) for 2:
Step 1: Stir squash, spices, and water over low-medium heat in a small pot until smooth. I added the water just so it wouldn't burn to the bottom. This may not be necessary if you used canned pumpkin or have runnier squash than I did. It should make a smooth mixture.
Step 2: Add sugar and stir for a few minutes until it's bubbling and thick. If you are like me and tasted it at this point and were slightly overwhelmed by the strong flavor, it's okay. It will be diluted with all the liquids.
Step 3: Add vanilla and milk, and stir until warm but not boiling. Basically, don't burn the milk. I now always take the pot off the burner for a second before adding the milk because I've ruined too many white sauces by adding it while the pot was too hot.
Step 4: Froth the milk. If you have a milk frother thing, it would be best to take out some of the milk mixture and froth it separately. I tried frothing the entire pot and it didn't work very well. A smaller portion would have worked better. If you don't have a frother thing, you can use a wire whisk and your muscles. Or one of the techniques here (I have not tried these, they may all be horrible).
Step 5: Pour espresso into mug, add milk and frothy bits, top with whip cream, and sprinkle with more pumpkin spice. Enjoy!
Note: If you're thinking "wait, where did the squash go, shouldn't you strain it out? I don't want to drink squash chunks." I had the same thought. There are some recipes that suggest straining out the squash which I was prepared to do initially. Until the entire thing seemed to just dissolve into the milk leaving no squash chunks to strain. The squash was clearly still there as there were a few squash bits at the bottom of my mug with the leftover cinnamon but it weirdly just dissolves into the liquid.
While I had some of the squash for supper, I cooked up a bit of it early to try to make a pumpkin spice latte. Since I've seen it advertised everywhere, I figured I should see what the fuss is about. After 10 seconds of Internet research, I discovered that most of the 'pumpkin spice' items are basically just cinnamon and ginger with no actual pumpkin flavouring. It's basically the same as Gingerbread flavouring with slightly less ginger. They should really just call it 'Cinnamon and other yummy spices' flavouring.
I wanted an actual pumpkin flavor so I perused the Internet for recipes that used pumpkin and mixed what I thought sounded the best and then tweaked it as I went along.
Alley's Pumpkin Spice Latte or, realistically, Squash Spice Cappuccino (trademark! I'm sure that name will be just as popular as PSL) for 2:
- 3 Tablespoons cooked squash (I guess you could use actual pumpkin but squash has way more flavour)
- 2-3 tsp of pumpkin spice, adjust to taste
- Pumpkin spice(makes more than necessary for 2 drinks): 4tsp cinnamon, 2 1/2 tsp ginger, 1 tsp all spice, 1 tsp nutmeg, 1/2 tsp ground cloves, adjust to taste
- 2-3 Tablespoons water
- 1 Tbsp sugar
- 1 tsp vanilla
- 2 cups milk
- 2 shots espresso
- Whip cream
Step 1: Stir squash, spices, and water over low-medium heat in a small pot until smooth. I added the water just so it wouldn't burn to the bottom. This may not be necessary if you used canned pumpkin or have runnier squash than I did. It should make a smooth mixture.
Step 2: Add sugar and stir for a few minutes until it's bubbling and thick. If you are like me and tasted it at this point and were slightly overwhelmed by the strong flavor, it's okay. It will be diluted with all the liquids.
Step 3: Add vanilla and milk, and stir until warm but not boiling. Basically, don't burn the milk. I now always take the pot off the burner for a second before adding the milk because I've ruined too many white sauces by adding it while the pot was too hot.
Step 4: Froth the milk. If you have a milk frother thing, it would be best to take out some of the milk mixture and froth it separately. I tried frothing the entire pot and it didn't work very well. A smaller portion would have worked better. If you don't have a frother thing, you can use a wire whisk and your muscles. Or one of the techniques here (I have not tried these, they may all be horrible).
Step 5: Pour espresso into mug, add milk and frothy bits, top with whip cream, and sprinkle with more pumpkin spice. Enjoy!
Note: If you're thinking "wait, where did the squash go, shouldn't you strain it out? I don't want to drink squash chunks." I had the same thought. There are some recipes that suggest straining out the squash which I was prepared to do initially. Until the entire thing seemed to just dissolve into the milk leaving no squash chunks to strain. The squash was clearly still there as there were a few squash bits at the bottom of my mug with the leftover cinnamon but it weirdly just dissolves into the liquid.
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| Pumpkin Spice Mix. I have enough for a weeks worth of drinks! |
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| Squash. |
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| Milk mixture. |
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| Espressos ready to go! |
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| Some lovely whipped cream courtesy of Jason. I make all my support people whip cream for me. |
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| And voila! Served with some toasted squash seeds. The seeds were a flop but the idea was good! Also, yes, we had Starbucks after physio an hour earlier. It was a two-fancy-coffee-drinks type day. |
Walk test #4
My cousin, Jason, volunteered to help me at physio today since Isaiah in NS. He had the oh so exciting task of fetching me water, cleaning weights, and swiping all the fans for me. I'm sure it was the highlight of the week for him and that now he will want to go all the time.
I was convenced to to the walk test I had been scheduled to do early Sept, right around the time I was hospitalised. I was hoping to put it off until next week when I'm sure I will magically be feeling better. However, the physiotherapist bluntly said that there was no point in 'waiting until I felt better' because maybe I will never feel back to my old self and that it's possible this is my new baseline. Oh the optimism.
So, I grudgingly agree, because honestly, if they make it up to me, I'll put it off for as long as possible. I might as well do it on a day where I was actually on time and they were having a slow day.
***Side note: I realise I complain about the walk test a lot considering it's just walking up and down the hall for 6 minutes. I walk on the treadmill for 20 minutes and complain way less about that (at least I do on here, Isaiah may disagree). There are several key differences that make the 6 minute test harder than my 20 min treadmill: 1) walking on a treadmill is way easier than walking in real life. In real life, your foot doesn't magically move back into the place it should be and requires energy for propulsion; 2) there is also no sudden stopping and starting on a treadmill unlike the constant 'get to the end, slow down, turn around' part that happens while pacing up and down a hallway, it's hard to get into a rhythm with the constant stopping; 3) There is an added emotional stress because it provides a objective reminder of my ever declining health (except that one time when it was high-fives all around); and 4) my oxygen levels usually drop to crazy lows from pushing myself which often gives me an oxygen-deprivation headache to enjoy for the rest of the day. In summation, I would rather 20 minutes on a treadmill any day.
All things considered with how I feel these days, the walk test went fairly well. I made it 548m which is slightly better than I expected. It is, not surprisingly, down significantly from the 584m I managed while I was on my pulmicort-steroid high. However, it's still a slight improvement from 6 months ago when I made it 535m.
I found the real difference this time was that I didn't feel that push to try my absolute hardest this time. While I didn't exactly stroll down the hall, I definitely didn't have that drive to push it until the end. I still pushed myself enough to tire out my legs and lungs but I was just missing that internal extra competitive something that I usually get around anything considered to be a 'test.' I kept waiting for it to kick in but it seems to have left the building. On the plus side, I didn't end up with a killer headache at the end so I may have inadvertently learnt that caring less is actually a good outcome.
If nothing else, at least the walk test is over for another three months. Next one scheduled in Dec. Urg Dec!
I was convenced to to the walk test I had been scheduled to do early Sept, right around the time I was hospitalised. I was hoping to put it off until next week when I'm sure I will magically be feeling better. However, the physiotherapist bluntly said that there was no point in 'waiting until I felt better' because maybe I will never feel back to my old self and that it's possible this is my new baseline. Oh the optimism.
So, I grudgingly agree, because honestly, if they make it up to me, I'll put it off for as long as possible. I might as well do it on a day where I was actually on time and they were having a slow day.
***Side note: I realise I complain about the walk test a lot considering it's just walking up and down the hall for 6 minutes. I walk on the treadmill for 20 minutes and complain way less about that (at least I do on here, Isaiah may disagree). There are several key differences that make the 6 minute test harder than my 20 min treadmill: 1) walking on a treadmill is way easier than walking in real life. In real life, your foot doesn't magically move back into the place it should be and requires energy for propulsion; 2) there is also no sudden stopping and starting on a treadmill unlike the constant 'get to the end, slow down, turn around' part that happens while pacing up and down a hallway, it's hard to get into a rhythm with the constant stopping; 3) There is an added emotional stress because it provides a objective reminder of my ever declining health (except that one time when it was high-fives all around); and 4) my oxygen levels usually drop to crazy lows from pushing myself which often gives me an oxygen-deprivation headache to enjoy for the rest of the day. In summation, I would rather 20 minutes on a treadmill any day.
All things considered with how I feel these days, the walk test went fairly well. I made it 548m which is slightly better than I expected. It is, not surprisingly, down significantly from the 584m I managed while I was on my pulmicort-steroid high. However, it's still a slight improvement from 6 months ago when I made it 535m.
I found the real difference this time was that I didn't feel that push to try my absolute hardest this time. While I didn't exactly stroll down the hall, I definitely didn't have that drive to push it until the end. I still pushed myself enough to tire out my legs and lungs but I was just missing that internal extra competitive something that I usually get around anything considered to be a 'test.' I kept waiting for it to kick in but it seems to have left the building. On the plus side, I didn't end up with a killer headache at the end so I may have inadvertently learnt that caring less is actually a good outcome.
If nothing else, at least the walk test is over for another three months. Next one scheduled in Dec. Urg Dec!
Thursday, 25 September 2014
Back to physio
Well, I returned to physio on Monday and managed to drag myself back on Wednesday too. As much as I don't like to admit that exercise is good for me, I'm feeling slightly more energetic. Although it may just be because I've spent a lot of time resting so my body is ready to do things. But it's most likely the exercise. And being back in a routine.
I like being in a routine and everything kind of falls apart when it goes away. Even though my routine is not very complex, I still feel better when it's there. I eat better, I sleep better, I just feel better all around. My motivational energy has improved somewhat. I gave myself a little pep talk of "even if the lung transplant doesn't happen for awhile or ever, there is no point spending what time you may or may not have feeling bad about the fact that you may or may not have that time to spend." It has helped somewhat but I still think there is something else dragging me down.
It's good though that I got some energy back as Isaiah is off to to NS today leaving me to my own devices for 6 days. He had a family emergency so has left the 'support person' role to whoever will answer their phone within a 2 hour radius of the hospital. But no, my cousin is on call for the 6 days except for one night when I have a friend visiting from NFLD (so excited!!!!!). Everyone was super thrilled when I told them, in the event of a call, they are responsible for tracking down my family members while I have a panic attack in the hospital bathroom.
I like being in a routine and everything kind of falls apart when it goes away. Even though my routine is not very complex, I still feel better when it's there. I eat better, I sleep better, I just feel better all around. My motivational energy has improved somewhat. I gave myself a little pep talk of "even if the lung transplant doesn't happen for awhile or ever, there is no point spending what time you may or may not have feeling bad about the fact that you may or may not have that time to spend." It has helped somewhat but I still think there is something else dragging me down.
It's good though that I got some energy back as Isaiah is off to to NS today leaving me to my own devices for 6 days. He had a family emergency so has left the 'support person' role to whoever will answer their phone within a 2 hour radius of the hospital. But no, my cousin is on call for the 6 days except for one night when I have a friend visiting from NFLD (so excited!!!!!). Everyone was super thrilled when I told them, in the event of a call, they are responsible for tracking down my family members while I have a panic attack in the hospital bathroom.
Tuesday, 23 September 2014
Stupid chlorohexidine
Well, I've learned the reason for the insane itchiness in my arm. After physio yestersay (yes, I returned grudgingly to physio), I went to St. Mikes to get my PICC line dressing changed. I figured it would only take 10 minutes, 20 at the most. Two hours later, I left with a new dressing and a newly discovered allergy.
It turns out that the red bumps on my arm that were itching so much were caused by the chlorohexidine sterilising agent used to clean the PICC line site. I had the dressing changed over a week ago while I was still hospitalized and it was two days after when the bumps appeared so I assumed it was a reaction to the tape. It had started to look a little better over the past few days and I thought it was from the few antihistamines I took.
However, as soon as the nurse started cleaning the site with the chlorohex wipes, it instantly all reappeared. She immediately removed it with saline but my skin was still super inflamed. They take allergic reactions way more seriously than I do, instead of applying my 'if I ignore it, it will probably get better' approach, she called in the IV specialist nurse and the doctor to check it out.
By the time, they were tracked down and the all clear was given to put new dressings back on my arm, it was nearing 2pm and I was ready to slap the thing on myself so I could leave and get some lunch. It was all a giant hassle, made worse by the fact that I wasn't scheduled for an appointment and then ended up taking up an hour and half of that nurse's time. Oops! Sorry everyone in the waiting room!
While the doctor was in to inspect my arm, he also asked how I was doing on the meds. I told him that I have no energy or motivation to do anything and wondered if was a medical side effect or a sign of depression. He responded that it's possible it's the meds but he would not say definitely one way or the other. The nurse later suggested that it may just be because my lungs are shit so my body has no energy to do anything else than try to breathe (I may have misquoted her slightly).
I return next week for an actual clinic appointment so hopefully they can get everything sorted out then. At least the itchiness has subsided.
It turns out that the red bumps on my arm that were itching so much were caused by the chlorohexidine sterilising agent used to clean the PICC line site. I had the dressing changed over a week ago while I was still hospitalized and it was two days after when the bumps appeared so I assumed it was a reaction to the tape. It had started to look a little better over the past few days and I thought it was from the few antihistamines I took.
However, as soon as the nurse started cleaning the site with the chlorohex wipes, it instantly all reappeared. She immediately removed it with saline but my skin was still super inflamed. They take allergic reactions way more seriously than I do, instead of applying my 'if I ignore it, it will probably get better' approach, she called in the IV specialist nurse and the doctor to check it out.
By the time, they were tracked down and the all clear was given to put new dressings back on my arm, it was nearing 2pm and I was ready to slap the thing on myself so I could leave and get some lunch. It was all a giant hassle, made worse by the fact that I wasn't scheduled for an appointment and then ended up taking up an hour and half of that nurse's time. Oops! Sorry everyone in the waiting room!
While the doctor was in to inspect my arm, he also asked how I was doing on the meds. I told him that I have no energy or motivation to do anything and wondered if was a medical side effect or a sign of depression. He responded that it's possible it's the meds but he would not say definitely one way or the other. The nurse later suggested that it may just be because my lungs are shit so my body has no energy to do anything else than try to breathe (I may have misquoted her slightly).
I return next week for an actual clinic appointment so hopefully they can get everything sorted out then. At least the itchiness has subsided.
Sunday, 21 September 2014
A slightly depressing post.
I'm still not feeling awesome. Ok, to be honest, I'm still feeling pretty crappy. The good thing is that all of my symptoms have pretty much gone. No more runny nose or coughing up gunk every 5 minutes. I'm just lacking all my energy to do anything. Good thing Isaiah is here to do laundry and dishes.
After laying around for 3 days, I forced myself to get out of bed yesterday to go to my cousins for the last swim of the summer. I felt better once I was there but once again crashed out once we returned home. I keep wondering if I'm finally now getting the depression that the social worker told me everyone who is listed ends up with and on anti-depressants. However, five days of feeling tired and lethargic does not count as actual depression.
I'm hoping it's just a side-effect of the meds and that I'll feel better when they are finished. Or maybe I'm trapped in a crazy cycle where the meds are making me tired and being tired all the time is making me depressed which is making me tired. I'm going to talk to the nurse about it tomorrow when I get my PICC line dressing changed.
I think part of the problem though, aside from the meds, is that I feel like my hope is slipping away. You know, that hope I once felt about how I was going to get a 'second chance' and feel awesome and then go travel madly around the world while feeling awesome. Instead, I've been slowly declining all summer and the meds aren't fixing me very much anymore. Eventually, I'm going to run out of room to decline and the shiny new lungs I was promised won't make it in time.
It isn't really even the length of wait that is super bumming me out (even though it slowly is). It's the fact that there is never any change. Apart from now being in the 'higher priority group', there is no indication that today is one day closer to the day I'm going to get my lungs. Because it isn't a 'first come, first serve' system, I have the same probability of getting lungs tonight as I do 3 months from now.
And honestly, when I was first listed, I didn't have full confidence that the transplant was going to happen or even that it would help that much if it did. Then, however, I started seeing how much it changed peoples lives and I started getting hopeful. I started to dream of all the things I would do once I got my lungs: hike, run, bike, travel, jump, walk up a flight of stairs, swim, etc... But now I just feel like it was all just a fantasy dream and that all my hope is gone forever.
Before you start freaking out, I''ll be ok. I'm confident I can figure this out. Either by changing meds or getting more meds or just giving myself time to be sad, I'll get through this. It's just a 'down' part of the ups and downs that happen while being chronically ill.
After laying around for 3 days, I forced myself to get out of bed yesterday to go to my cousins for the last swim of the summer. I felt better once I was there but once again crashed out once we returned home. I keep wondering if I'm finally now getting the depression that the social worker told me everyone who is listed ends up with and on anti-depressants. However, five days of feeling tired and lethargic does not count as actual depression.
I'm hoping it's just a side-effect of the meds and that I'll feel better when they are finished. Or maybe I'm trapped in a crazy cycle where the meds are making me tired and being tired all the time is making me depressed which is making me tired. I'm going to talk to the nurse about it tomorrow when I get my PICC line dressing changed.
I think part of the problem though, aside from the meds, is that I feel like my hope is slipping away. You know, that hope I once felt about how I was going to get a 'second chance' and feel awesome and then go travel madly around the world while feeling awesome. Instead, I've been slowly declining all summer and the meds aren't fixing me very much anymore. Eventually, I'm going to run out of room to decline and the shiny new lungs I was promised won't make it in time.
It isn't really even the length of wait that is super bumming me out (even though it slowly is). It's the fact that there is never any change. Apart from now being in the 'higher priority group', there is no indication that today is one day closer to the day I'm going to get my lungs. Because it isn't a 'first come, first serve' system, I have the same probability of getting lungs tonight as I do 3 months from now.
And honestly, when I was first listed, I didn't have full confidence that the transplant was going to happen or even that it would help that much if it did. Then, however, I started seeing how much it changed peoples lives and I started getting hopeful. I started to dream of all the things I would do once I got my lungs: hike, run, bike, travel, jump, walk up a flight of stairs, swim, etc... But now I just feel like it was all just a fantasy dream and that all my hope is gone forever.
Before you start freaking out, I''ll be ok. I'm confident I can figure this out. Either by changing meds or getting more meds or just giving myself time to be sad, I'll get through this. It's just a 'down' part of the ups and downs that happen while being chronically ill.
Friday, 19 September 2014
Cooking: Waffles
I made delicious 'get better' waffles. Ok, well honestly, Isaiah made them. They were fantastic. Fresh fruit, NB maple syrup, whipped cream. Yum!!
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Wednesday, 17 September 2014
Itchy Arm
Argh! My arm is so itchy! I still have my picc line in and the tape is driving me crazy. The doctor thought it would be best to keep it in on the off chance that the oral antibiotics don't work. If everything clears up in two weeks, than they'll take it out.
In the meantime, I have to try not to scratch my arm off. My skin does not react well to medical tape, it's all red and bumpy around the tape area. I took some ibuprofen last night and I think it helped a little bit but popping ibuprofen all the time is not a good long term solution.
Other than my arm itching, I'm feeling ok. The rest of David and Cindy's visit was low-key. We opted to play board games and relax instead of visiting the art galley or science centre. I also did nothing today (besides resisting the urge to scratch my arm) so I'm being good about the whole relaxing bit. I'll probably head back to physio on Fri or Mon just so my muscle mass doesn't completely disappear.
In the meantime, I have to try not to scratch my arm off. My skin does not react well to medical tape, it's all red and bumpy around the tape area. I took some ibuprofen last night and I think it helped a little bit but popping ibuprofen all the time is not a good long term solution.
Other than my arm itching, I'm feeling ok. The rest of David and Cindy's visit was low-key. We opted to play board games and relax instead of visiting the art galley or science centre. I also did nothing today (besides resisting the urge to scratch my arm) so I'm being good about the whole relaxing bit. I'll probably head back to physio on Fri or Mon just so my muscle mass doesn't completely disappear.
Monday, 15 September 2014
Home.
In an unexpected turn of events, I'm home to stay!
I guess it was kind of expected but not expected so early.
The doctor decided that since my IV medication targeted a bug that didn't show up on my last sputum culture, there was no point for me to continue on it as it wasn't doing anything. And since NS does cover the expensive antibiotic, it made much more sense for me to be home rather than stay in hospital on oral antibiotics. Since everything else is stable, I had no complaints about any of that so off I went.
It was definitely the shortest and most pleasant hospital stay I've ever had. That hospital wing was fantastic. The nurses were knowledgeable, gave me space, let me administer my own meds, let me sleep in, and just all around fantastic. The food, while not awesome, was as good, as I've come to realise, mass-produced food could be. The best part was the optional CF menu where they let me order chips and chocolate bars for snacks. I had just learned to ask for two bags of everything when I left. I'll know better if there is a next time.
While it's great to be home and I'll absolutely sleep better and relax more, it's the first time I've left the hospital feeling like I haven't been fixed. In the past, I've stayed at the hospital for at least two weeks, sometimes three, until the antibiotics had their a full run and I was feeling back to my baseline.
Now, however, they discharged me more because it was silly for me to stay while on oral medication and not because I'm doing that much better. I mean, I am doing better than when I first went in (I'm eating more than crackers and bread), but I'm certainly not back to my baseline energy-wise.
It's good that I'm home but I'm concerned that I'm going to overexert myself instantly which would put me right back in. It's easier to do when I'm home because I want to do other things than sit on the couch. Like fun things with David and Cindy or even boring things like clean the apartment. I need a shock collar that zaps me whenever I decide I'm going to do something too active. Me: "Let's go to the zoo tomorrow!!! *zapped* Ahhhh!! I guess I'll sit here and read instead."
I guess it was kind of expected but not expected so early.
The doctor decided that since my IV medication targeted a bug that didn't show up on my last sputum culture, there was no point for me to continue on it as it wasn't doing anything. And since NS does cover the expensive antibiotic, it made much more sense for me to be home rather than stay in hospital on oral antibiotics. Since everything else is stable, I had no complaints about any of that so off I went.
It was definitely the shortest and most pleasant hospital stay I've ever had. That hospital wing was fantastic. The nurses were knowledgeable, gave me space, let me administer my own meds, let me sleep in, and just all around fantastic. The food, while not awesome, was as good, as I've come to realise, mass-produced food could be. The best part was the optional CF menu where they let me order chips and chocolate bars for snacks. I had just learned to ask for two bags of everything when I left. I'll know better if there is a next time.
While it's great to be home and I'll absolutely sleep better and relax more, it's the first time I've left the hospital feeling like I haven't been fixed. In the past, I've stayed at the hospital for at least two weeks, sometimes three, until the antibiotics had their a full run and I was feeling back to my baseline.
Now, however, they discharged me more because it was silly for me to stay while on oral medication and not because I'm doing that much better. I mean, I am doing better than when I first went in (I'm eating more than crackers and bread), but I'm certainly not back to my baseline energy-wise.
It's good that I'm home but I'm concerned that I'm going to overexert myself instantly which would put me right back in. It's easier to do when I'm home because I want to do other things than sit on the couch. Like fun things with David and Cindy or even boring things like clean the apartment. I need a shock collar that zaps me whenever I decide I'm going to do something too active. Me: "Let's go to the zoo tomorrow!!! *zapped* Ahhhh!! I guess I'll sit here and read instead."
Saturday, 13 September 2014
Hospital Update #3
I have visitors for the weekend, yay! I'm sure they are thrilled that their vacation has turned into visiting me at the hospital. I've been given the clearance to leave for a few hours tomorrow afternoon which is excellent.
One of my IVs has also been switched to a pill which is great. It was the one that took two hours so it's nice to get rid of it. Although to be honest, it doesn't make a huge difference to me as at this hospital, they try to avoid disconnecting and reconnecting patients after every IV. They say it is to reduce infection rates as the less they touch the IV ends, the less risk for infection. My IV pump is pretty quiet compared to the ones I've had in Halifax so at least I'm able to sleep while it's on.
There is also talk about me getting out of here in less than two weeks. I don't want to get my hopes up, but since I've seem to have broken the "feeling too gross to eat which makes me tired which makes me feel too gross to eat..."cycle, and my last sputum culture showed that I was no longer growing one of the weird bugs that they had been targeting, I may be off my remaining IV med sooner rather than later.
It will all depend on whether or not I can get funding for the oral antibiotic for home. I know NB and Ontario doesn't cover it but I'm not sure about NS. If they don't cover it, than I'll have to pay for it out of pocket or stay in hospital to get covered. Can anyone explain to me why the hospital would rather pay for someone to be hospitalized to get their medications rather than just pay for the patient to take the medication home? Everyone I've talked to about it seems perplexed about it.
One of my IVs has also been switched to a pill which is great. It was the one that took two hours so it's nice to get rid of it. Although to be honest, it doesn't make a huge difference to me as at this hospital, they try to avoid disconnecting and reconnecting patients after every IV. They say it is to reduce infection rates as the less they touch the IV ends, the less risk for infection. My IV pump is pretty quiet compared to the ones I've had in Halifax so at least I'm able to sleep while it's on.
There is also talk about me getting out of here in less than two weeks. I don't want to get my hopes up, but since I've seem to have broken the "feeling too gross to eat which makes me tired which makes me feel too gross to eat..."cycle, and my last sputum culture showed that I was no longer growing one of the weird bugs that they had been targeting, I may be off my remaining IV med sooner rather than later.
It will all depend on whether or not I can get funding for the oral antibiotic for home. I know NB and Ontario doesn't cover it but I'm not sure about NS. If they don't cover it, than I'll have to pay for it out of pocket or stay in hospital to get covered. Can anyone explain to me why the hospital would rather pay for someone to be hospitalized to get their medications rather than just pay for the patient to take the medication home? Everyone I've talked to about it seems perplexed about it.
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| Fun/terrifying bathroom decal that a previous patient left. |
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| Playing cards with Isaiah. |
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| Tapeing up my PICC line so I can shower. |
Inspiring...the unplanned second part.
Today was pretty quiet. I guess everyone already learned all they needed to about me. I also slept better last night which was a bit of a relief.
My aunt suggested that I watch the TED talk by Stella Young as it is basically what I said in my “Inspiration” blog post. I had previously watched a clip of it but it’s definitely worth watching the entire thing. It’s basically my entire "Inspiration" rant only much better said.
One thing though, at the end of her talk, she talked for a minute about the whole “the only disability is a bad attitude” vibe that comes from a lot of places. People are told that they just need a positive attitude to get through. It sounds ridiculous to anyone who has ever struggled with anything that all they needed to do is ‘be positive and the problem will be solved!’
However, people do say it. Like yesterday, when a nurse who was taking my blood told me that I just needed a positive attitude to get my transplant. I wish I could say that it was the first time I’ve been told that. I didn’t feel comfortable getting into a debate with her as she was poking a needle in my arm so I simply said something about how it’s hard to have a positive attitude every day for 11 months.
To which she replied, that when she thinks she is going to have a bad day, she has a bad day. So the reverse must be true. Also, that when she is running late for work, she’ll send out positive universe vibes to get green lights and sometimes it works.
How do you respond to that? 1) Waiting for a lung transplant is not the same as the 50/50 chance that you’ll get a green light on your way to work. 2) What happens when I send out good vibes and the family of the person who is dying sends out good vibes? Do they cancel out? Does the person with the most people caring about them win? And 3) (and the one that I find most frustrating), if I just need to send out a positive attitude, than clearly I’m at fault for not having a lung transplant because if only I was more positive. And obviously anyone who has ever died from some horrible disease was just not being uplifting enough to please the cosmos.
It’s not my fault. Shit happens. Stop pushing your positive attitude theory on me.
Anyway…I wasn’t planning on spending much time on this post this evening but it seems my ranting got out of my control. If you have 10 minutes, check out this video. It’s well worth your time. You'll learn much more than that cat video you were going to watch afterward.
Thursday, 11 September 2014
Hospital Day #2
I got my PICC line in. Yay!! It's
always a good thing as it means that not only can the antibiotics be given
faster (my twice daily one took 3 hours with the IV line), blood can be drawn
from it, and it stays in the entire time so I don't have to get constantly
poked for IV lines. My IV line did last overnight thankfully but it was
starting to be problematic during my last antibiotic this morning so I don't
think it would have last much longer.
The PICC line seemed to take forever
to go in but it did eventually get done. It just took two tries by the doctor.
Basically what they do is put a tourniquet on the top of the arm, wash the arm
with iodine several times, and then use an ultrasound machine to find the best
vein. Once they are satisfied they have the perfect vein, the doctor (not sure
if the guy today was an actual doctor, I think radiologists and nurses can put
in lines too) freezes the area. Then a wire thing gets stuck into the vein up
until the shoulder which is used to guide the catheter line along the body.
Once it hits the shoulder, they turn on a live x-ray to help the doctor help
guide line the rest of the way.
That is my understanding of the
process anyway. They always have so many sheets on me that the only part I
actually get to watch is the live x-ray. And if the doctor isn’t telling me
what is happening, I have very little idea as my arm is usually completely numb
by that point from both the freezing agent and the tourniquet. It’s a very
strange feeling to watch the catheter snake its way toward your heart on the
screen while knowing that it’s your body you’re watching.
Today, the doctor person forgot to
put a lead vest on so they didn't do a live x-ray. Instead, he kept moving out
of the way while the nurse, wearing a vest (I assume), stood in front of him
when a picture was taken. I hope the nurse was wearing a vest otherwise it
seems like a jerk move to make the nurse take the radiation for you.
When I returned from my PICC line,
the respirology therapist came in to take some blood from my wrist for a blood
gas test which tests to make sure that right amount of CO2 is leaving my body. CO2
can build up if a person is on too much oxygen which I seriously doubt is my
problem. I guess it's good to double check and get a baseline. Although I hope
not to check it too often because it's a fairly painful needle. My right arm
has been through a lot today.
I also went for a chest x-ray (so
much radiation in one day!) today, met the physiotherapist, chatted with the
resident Dr again, and had regular blood work done. The first few days are
always pretty busy so I expect I'll run out of appointments by tomorrow.
Wednesday, 10 September 2014
Hospital update
I have a bed! I didn't even have to wait in emerg. They actually found me a bed on the respirology wing which is fantastic. I love it when the nurses know what their doing.
It's a private corner room at the end of a hall, hopefully that means I won't have to listen to nurses on shift change.
No IV yet but I just saw the Dr and she is getting all the meds lined up. She is also putting in a order for a PICC line which is fantastic.
There is wifi here and I'll be getting Isaiah to bring me my computer tomorrow so I'll be able to keep everyone in the loop.
It's a private corner room at the end of a hall, hopefully that means I won't have to listen to nurses on shift change.
No IV yet but I just saw the Dr and she is getting all the meds lined up. She is also putting in a order for a PICC line which is fantastic.
There is wifi here and I'll be getting Isaiah to bring me my computer tomorrow so I'll be able to keep everyone in the loop.
Tuesday, 9 September 2014
Off to St. Mikes I go.
I'm being admitted to St. Michael's Hospital. Booo!!!
Clearly my CF clinic visit today did not go very well. My lung function was down and the doctor said since I just finished a course of oral antibiotics two weeks ago, it was time to bring out the big guns (or meds, in this case).
They wanted to admit me immediately but since there were no beds available anywhere in the hospital, after waiting for 5 hours, they gave me the option to either go to the emergency room and be admitted through there (but the lack of beds means I would be in the general emerg section all night), or go home for the night and hope there is a bed in the AM. So obviously, I choose the second option.
If there is still no bed available in the morning, I'm off to emerg to wait it out there. The Dr said there is little chance of getting a room in the respirology wing as no one is leaving there soon but they would try to shuffle people around to put me in a good second option.
Fingers crossed on someone being discharged tonight because spending all day/night in emerg tomorrow sounds like a nightmare. Plus imagine the germs in that place *shudder*.
The doctor seemed quite panicked about letting me leave for the night but since I promised to rush to emerg if anything changed, she let me go. Her intensity made me feel like I should be more worried about my health but I'm not. I honestly still feel better than I did over the weekend and freaking out will do nothing to help my body. I'm just happy that I get one last home cooked meal and sleep in my bed before being admitted.
Surprisingly enough, I'm not feeling too bad emotionally about having to be admitted. Clearly, it's not my first choice and I would rather be at home but it makes sense treatment-wise. My lungs have been on a steady decline since June and strong oral antibiotics haven't helped on a long term basis. So, hopefully, the IV meds will help give my lungs a boost until I get my transplant.
The two major bummers are that David and Cindy are visiting this weekend so their Toronto vacation is going to be very hospital-oriented and that we have tickets to the Book of Mormon musical in two weeks and I doubt I'll be out by then. I can't do anything about David and Cindy's trip but hopefully my IV schedule can work around a 3 hour outing so I can see the show. However, there is nothing I can do about it right now as I'm not even at the hospital yet.
The one tiny silver lining in all of this is that once I'm admitted, I move from priority 1 to the priority 2 (weirdly, the higher) grouping. Better chance at getting lungs! Maybe the angry oxygen man that I met when I first arrived in Toronto was right about people only getting lungs after having a serious infection. Let's hope he is right about this one thing!
I guess I better start packing my bags for tomorrow. Urgh.
Clearly my CF clinic visit today did not go very well. My lung function was down and the doctor said since I just finished a course of oral antibiotics two weeks ago, it was time to bring out the big guns (or meds, in this case).
They wanted to admit me immediately but since there were no beds available anywhere in the hospital, after waiting for 5 hours, they gave me the option to either go to the emergency room and be admitted through there (but the lack of beds means I would be in the general emerg section all night), or go home for the night and hope there is a bed in the AM. So obviously, I choose the second option.
If there is still no bed available in the morning, I'm off to emerg to wait it out there. The Dr said there is little chance of getting a room in the respirology wing as no one is leaving there soon but they would try to shuffle people around to put me in a good second option.
Fingers crossed on someone being discharged tonight because spending all day/night in emerg tomorrow sounds like a nightmare. Plus imagine the germs in that place *shudder*.
The doctor seemed quite panicked about letting me leave for the night but since I promised to rush to emerg if anything changed, she let me go. Her intensity made me feel like I should be more worried about my health but I'm not. I honestly still feel better than I did over the weekend and freaking out will do nothing to help my body. I'm just happy that I get one last home cooked meal and sleep in my bed before being admitted.
Surprisingly enough, I'm not feeling too bad emotionally about having to be admitted. Clearly, it's not my first choice and I would rather be at home but it makes sense treatment-wise. My lungs have been on a steady decline since June and strong oral antibiotics haven't helped on a long term basis. So, hopefully, the IV meds will help give my lungs a boost until I get my transplant.
The two major bummers are that David and Cindy are visiting this weekend so their Toronto vacation is going to be very hospital-oriented and that we have tickets to the Book of Mormon musical in two weeks and I doubt I'll be out by then. I can't do anything about David and Cindy's trip but hopefully my IV schedule can work around a 3 hour outing so I can see the show. However, there is nothing I can do about it right now as I'm not even at the hospital yet.
The one tiny silver lining in all of this is that once I'm admitted, I move from priority 1 to the priority 2 (weirdly, the higher) grouping. Better chance at getting lungs! Maybe the angry oxygen man that I met when I first arrived in Toronto was right about people only getting lungs after having a serious infection. Let's hope he is right about this one thing!
I guess I better start packing my bags for tomorrow. Urgh.
Monday, 8 September 2014
Waiting Game: 11 Months
11 months waiting. Gah. I don't even know what to say anymore.
I spent the weekend fighting off a cold/infection which really cut into my weekend plans of stalking celebrities at TIFF and attending the Leafs FanFest. Instead I found myself napping, whining at Isaiah to bring me things (he is the best), and trying not to throw up noodle soup.
I'm feeling 5% better today as my 'feels-like-I-ate-glass' throat and 'never-ending-snot-producing' sinuses have calmed down a bit. I booked a CF clinic appointment tomorrow this morning after calling the CF nurse to tell her my woos. I'm, of course, paranoid that I've somehow contracted the enderovirus 68 that is going around the US right now. I have some of the symptoms! Vomiting (check), respiratory illness (check), irritability (check!).
So a quick recap of the past month:
- Physio remains ever the same. I'm now on my 12th yellow (green is for those who are post-transplant) work out card. Woohoo...? I'm suppose to do a walk test this week but I hope I can get it pushed back a few days to give me some recovery time. Seeing as I skipped physio today and will probably not make it on Wed either, I'm sure they will accommodate me.
- My health has been up and down this past month, this weekend has definitely been another down. I had a bit of an infection around the middle of the month so I took two weeks of antibiotics and besides the crazy side-effect headaches, it clearned right up and I felt awesome. Until Friday. While I was laying in bed yesterday, I realized how little it now takes to knock my energy level down to scary lows. When I'm feeling 'fine', I don't think about how sick I actually am or how little reservoir I have left. Then when I have to use it, it's a total shut down and now takes forever for me to recover. I use to be able to keep going at least a bit when I had a cold or infection but that has totally disappeared. It freaks me out a little as it's a reminder of how little my lungs and body can handle.
- I still have no shortage of visitors. Mom and Dad were here last month along with a few friends stopping by for meals. David and Cindy are next followed by some other friends. There is no time to miss the family!
That's all I can think of right now. It's time for me to drink some more tea and lay down.
I spent the weekend fighting off a cold/infection which really cut into my weekend plans of stalking celebrities at TIFF and attending the Leafs FanFest. Instead I found myself napping, whining at Isaiah to bring me things (he is the best), and trying not to throw up noodle soup.
I'm feeling 5% better today as my 'feels-like-I-ate-glass' throat and 'never-ending-snot-producing' sinuses have calmed down a bit. I booked a CF clinic appointment tomorrow this morning after calling the CF nurse to tell her my woos. I'm, of course, paranoid that I've somehow contracted the enderovirus 68 that is going around the US right now. I have some of the symptoms! Vomiting (check), respiratory illness (check), irritability (check!).
So a quick recap of the past month:
- Physio remains ever the same. I'm now on my 12th yellow (green is for those who are post-transplant) work out card. Woohoo...? I'm suppose to do a walk test this week but I hope I can get it pushed back a few days to give me some recovery time. Seeing as I skipped physio today and will probably not make it on Wed either, I'm sure they will accommodate me.
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- My health has been up and down this past month, this weekend has definitely been another down. I had a bit of an infection around the middle of the month so I took two weeks of antibiotics and besides the crazy side-effect headaches, it clearned right up and I felt awesome. Until Friday. While I was laying in bed yesterday, I realized how little it now takes to knock my energy level down to scary lows. When I'm feeling 'fine', I don't think about how sick I actually am or how little reservoir I have left. Then when I have to use it, it's a total shut down and now takes forever for me to recover. I use to be able to keep going at least a bit when I had a cold or infection but that has totally disappeared. It freaks me out a little as it's a reminder of how little my lungs and body can handle.
- I still have no shortage of visitors. Mom and Dad were here last month along with a few friends stopping by for meals. David and Cindy are next followed by some other friends. There is no time to miss the family!
That's all I can think of right now. It's time for me to drink some more tea and lay down.
Friday, 5 September 2014
Pottery!
I picked up my pottery today! I've had two dreams about it this week, where either I went to pick up the pottery and all the colours came out gross brown or I couldn't find it and the dream instructor had no idea what I was talking about. I had to pick it up so I would stop having pottery nightmares. I did manage to forget one piece though so I'll have to go back at some point to retrieve it. Oops!
Thankfully, it did not turn out gross brown and it was all there (except the one piece). All but two pieces turned out almost perfect. I think I'll go to a drop in class and throw another coat on them and they'll be great.
Family: If you want Christmas to be a 100% surprise, stop looking! I'm not going to show the entire piece but I really want to show the fun textures and colours I tried. You can probably figure out what the pieces are if you really try.
Thankfully, it did not turn out gross brown and it was all there (except the one piece). All but two pieces turned out almost perfect. I think I'll go to a drop in class and throw another coat on them and they'll be great.
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| This is the bottom part of the french butter dish that I failed at making. I guess it's a mug now? |
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| A cute little vase that I'm keeping for myself. I painted the blue underglaze and made the texture on the clay before it was fired. I love how it turned out and now I have a million ideas on how to apply that technique onto other things. |
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| These golbets are from my first session. I reglazed them as the underglaze was never completely covered the first time. Plus one of them leaked. I managed to fix both of those problems this time. I still don't really like them but their better than before. |
Family: If you want Christmas to be a 100% surprise, stop looking! I'm not going to show the entire piece but I really want to show the fun textures and colours I tried. You can probably figure out what the pieces are if you really try.
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| I'm going to reglaze this one. The red ended up being pink and the purple is streaky and doesn't work as well as I thought it would. |
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