We're off to a cabin in Yarmouth for the week! It's kind of like a real vacation. No internet and sporadic cell service, I may have some withdrawal for the first few days but I'm sure the s'mores will help.
Thursday, 7 July 2016
Garden!
Look at the garden grow!
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| Lettuce! |
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| The peas and beans are coming up nicely. |
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| The beets have exploded! |
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| Spinach at home is also doing well. |
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| Ground cherry! |
Wednesday, 6 July 2016
Bronch results!
I got bronch results back today!
Andddd....
*drumroll please*
...it's negative for rejection! Hurray!!
However, the cultures either from the biopsy or bronch wash (the fluid they push into the lungs and suck back out) showed that I'm growing one of the major superbugs that are quite popular around hospitals. The transplant coordinator called on behalf of the doctor to ask how I was feeling and if I was having any symptoms of an infection. I told her no, that apart from a sore throat from the bronch, a lingering dry cough and a slightly congested nose, I've been feeling great (that probably read like sarcasm but I, honestly, have been feeling quite healthy).
I honestly thought that I had already been growing this bug as the doctors told me I was during all my chemo-fever hospitalizations. So I'm not sure if Toronto just didn't get the memo or if it's now growing in my lungs versus before when it was maybe just in my nose? I called the Halifax CF coordinator to clarify as the Toronto woman wasn't my usual transplant coordinator and didn't really know anything.
The Toronto coordinator went off to talk to the doctors and I never heard from her again today as to whether or not they recommend treatment. Seeing as I don't feel infected and my lung function is doing well, I doubt they'll want to treat it. It's one of those bugs that they can treat a few times but after that, they don't have very many medication options available. It's better to wait unti necessary to use the 'big' antibiotics. I've been on them all before as I've had all this stuff pre-transplant so if I had to guess, I think they'll want to wait and just keep an eye on it for now.
In other health news, I can go back to only getting bloodwork done once a month! Hurray! Last time I said that, it lasted one week so we'll see if I can maybe get two weeks off this time.
Andddd....
*drumroll please*
...it's negative for rejection! Hurray!!
However, the cultures either from the biopsy or bronch wash (the fluid they push into the lungs and suck back out) showed that I'm growing one of the major superbugs that are quite popular around hospitals. The transplant coordinator called on behalf of the doctor to ask how I was feeling and if I was having any symptoms of an infection. I told her no, that apart from a sore throat from the bronch, a lingering dry cough and a slightly congested nose, I've been feeling great (that probably read like sarcasm but I, honestly, have been feeling quite healthy).
I honestly thought that I had already been growing this bug as the doctors told me I was during all my chemo-fever hospitalizations. So I'm not sure if Toronto just didn't get the memo or if it's now growing in my lungs versus before when it was maybe just in my nose? I called the Halifax CF coordinator to clarify as the Toronto woman wasn't my usual transplant coordinator and didn't really know anything.
The Toronto coordinator went off to talk to the doctors and I never heard from her again today as to whether or not they recommend treatment. Seeing as I don't feel infected and my lung function is doing well, I doubt they'll want to treat it. It's one of those bugs that they can treat a few times but after that, they don't have very many medication options available. It's better to wait unti necessary to use the 'big' antibiotics. I've been on them all before as I've had all this stuff pre-transplant so if I had to guess, I think they'll want to wait and just keep an eye on it for now.
In other health news, I can go back to only getting bloodwork done once a month! Hurray! Last time I said that, it lasted one week so we'll see if I can maybe get two weeks off this time.
Monday, 4 July 2016
Hope everyone had a good Canada Day!
We spent the holiday in Pugwash at the Highland Games watching people in kilts play instruments and then men in kilts lift heavy things. It was fun. But then I crashed out afterward. I think the Toronto trip had caught up with me and then spending all day in the sun was too much.
After spending a day napping and another day reading, I feel like I've almost recovered. My throat just needs to heal and then I'll be back in prime condition. The doctor really destroyed it during the bronch.
Anyway, no more bronch talk except to say that I don't have any results yet. I'm hoping to find out if/what they found sometime this week and if I can stop getting bloodwork done every week. I would like to reduce the weekly stabbing. I called the Halifax CF coordinator today and was told that they don't know anything yet. I'll start the harassment of my transplant coordinator tomorrow.
Once I get the clear on the bronch I can relax more and perhaps start planning a few small trips within Canada. Nothing out of the country for a bit (because no one is going to give me travel insurance right now) but it would be nice to leave the Maritimes for a few days for some non-medical travel. Maybe see some other parts of this wonderful country.
We spent the holiday in Pugwash at the Highland Games watching people in kilts play instruments and then men in kilts lift heavy things. It was fun. But then I crashed out afterward. I think the Toronto trip had caught up with me and then spending all day in the sun was too much.
After spending a day napping and another day reading, I feel like I've almost recovered. My throat just needs to heal and then I'll be back in prime condition. The doctor really destroyed it during the bronch.
Anyway, no more bronch talk except to say that I don't have any results yet. I'm hoping to find out if/what they found sometime this week and if I can stop getting bloodwork done every week. I would like to reduce the weekly stabbing. I called the Halifax CF coordinator today and was told that they don't know anything yet. I'll start the harassment of my transplant coordinator tomorrow.
Once I get the clear on the bronch I can relax more and perhaps start planning a few small trips within Canada. Nothing out of the country for a bit (because no one is going to give me travel insurance right now) but it would be nice to leave the Maritimes for a few days for some non-medical travel. Maybe see some other parts of this wonderful country.
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| Springhill fireworks! |
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| Boom! |
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| Very Nova Scotian. |
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| Men throwing things. |
Friday, 1 July 2016
Recap of the bronch
[Happy Canada Day!!]
So the bronch....I feel like I'm getting ptsd just thinking about it. The bronch wasn't until 11:45 on Tuesday which meant that I was very hungry (and, as Isaiah said, hanxious) when we got to the hospital at 10:30 for all the pre-op stuff. My hunger was made worse by the fact that I had to walk past everyone eating at the breakfast table to get to the bathroom in the morning.
The pre-op nurses were very nice and listened to me about where to put in the IV for which I was quite grateful. The nurse got it in the first attempt, although with quite a bit of painful digging. The other nurse was asking me about the medication at that time and asked me how I felt after the last bronch. My last bronch was in Halifax and went fantastic as the doctor super drugged me up. The last bronch in Toronto was not as pleasent. I told her that I needed more meds than the last time and she reminded me that I was suppose to be 'consciously sedated' and not 100% knocked out. I told her that I tend to panic if I'm not knocked out so just note that I need extra drugs. She didn't note it.
I felt okay because I had talked about it so much with the doctor in clinic that I still felt as though I would get enough meds. Then an inpatient person was rolled into the pre-op area with a different doctor (who I knew from all my time in the hospital). The nurses told me the new patient was being added to the schedule and going in for a bronch the same time as me. The doctor gave a play by play of what happens during a bronch to the in-patient woman and her family, which really freaked me out.
After a bit, I was taken to a freezing room where I was given the freezing stuff to gargle and the terrible mask.
After being sufficiently frozen, I was wheeled off to the procedure room. That's when I realized I was getting the floor doctor for my procedure, not the clinic doctor. The doctor I had during clinic was with the in-patient woman. This new doctor was nice but not prepped for me. I also had a resident who I had never met before and while she was nice, I hate when residents do procedures on me because I tend to panic and they don't have enough experience to know what to do when I panic.
I told the doctor that I needed extra meds and that I had woken up last procedure. He reassured me that I was going to be given the same amount as last time which was enough to "knock him out for three days." I said that I needed more and that if I was awake during the procedure, I would unconsciously be fighting against them.
The resident gave me more freezing spray, explained all the things that could go wrong, and had me sign the consent. Then I moved over to the procedure table, the nurse gave me the sedation, and I must've been knocked out for a bit but it felt like I was instantly opening my eyes only be able to see the towel they place over the face and was choking.
I felt like I couldn't breathe and started to panic. I started shaking and kept trying to cough and all I could hear was the doctor and nurse telling me in a panicked voice to stop trying to talk. I'm not sure why they thought I was trying to talk? Do people do that? I definitely wasn't, I was trying to get the 'I'm choking and dying' feeling to stop. The panic in their voices while they kept telling me that it was almost over, that I needed to stop trying to talk and to just relax, did not help me.
Besides, has telling someone that they need to calm down ever actually worked?
I did not calm down.
I continued to hyperventilate, shaking, and half-coughing until they were done. It was terrible. Once the scope was finally removed and I was able to breathe again, I couldn't stop crying for quite some time. It was traumatic. The doctor kept asking if I was okay and I had no answer because my throat hurt too much to talk and I was just focusing on breathing. I kept shaking my head.
They wheeled me into the recovery room where I laid until the x-ray man showed up with the x-ray-machine-on-wheels to make sure I had no air trapped in my lungs. After the x-ray was done and cleared by a doctor, I was free to go. I got dressed and a porter wheeled me to the front door and then Isaiah and I walked back to the B&B. It was a clear sign that I wasn't given enough sedation when I felt okay to walk around.
Back at the B&B, I did manage to nap for the afternoon before we went out for supper and gelato. My throat was super sore yesterday and still a bit sore today but I haven't had any of the other possible side-effects (temp, coughing up blood, collasped lung, etc...). I imagine my throat is raw from me trying to fight off the scope.
I'm still traumatized from Tuesday and I don't know how many more times I can tell these doctors that I need lots of sedation. I'm not sure how I don't convey my seriousness enough to these people.
Is it because I'm not freaking out externally so they don't believe me?
Is it because in my panic pre-procedure, I mostly just shut down externally instead of outwardly freaking out? Do I need to be actually crying for them to give me
extra meds?
The doctors always say they understand but then never give me enough meds. I understand why they couldn't when I was first post-transplant as my lungs weren't strong enough to handle that many drugs. But I can handle them now! I was given loads last Nov in Halifax and was out the entire time and it was wonderful. I really hope this doctor charted how terrible it went so the next one, in 6 months, will understand that I'm not joking when I say "I need to be out so give me all the drugs," otherwise I really will be crying.
So the bronch....I feel like I'm getting ptsd just thinking about it. The bronch wasn't until 11:45 on Tuesday which meant that I was very hungry (and, as Isaiah said, hanxious) when we got to the hospital at 10:30 for all the pre-op stuff. My hunger was made worse by the fact that I had to walk past everyone eating at the breakfast table to get to the bathroom in the morning.
The pre-op nurses were very nice and listened to me about where to put in the IV for which I was quite grateful. The nurse got it in the first attempt, although with quite a bit of painful digging. The other nurse was asking me about the medication at that time and asked me how I felt after the last bronch. My last bronch was in Halifax and went fantastic as the doctor super drugged me up. The last bronch in Toronto was not as pleasent. I told her that I needed more meds than the last time and she reminded me that I was suppose to be 'consciously sedated' and not 100% knocked out. I told her that I tend to panic if I'm not knocked out so just note that I need extra drugs. She didn't note it.
I felt okay because I had talked about it so much with the doctor in clinic that I still felt as though I would get enough meds. Then an inpatient person was rolled into the pre-op area with a different doctor (who I knew from all my time in the hospital). The nurses told me the new patient was being added to the schedule and going in for a bronch the same time as me. The doctor gave a play by play of what happens during a bronch to the in-patient woman and her family, which really freaked me out.
After a bit, I was taken to a freezing room where I was given the freezing stuff to gargle and the terrible mask.
 |
| The freezing mask |
I told the doctor that I needed extra meds and that I had woken up last procedure. He reassured me that I was going to be given the same amount as last time which was enough to "knock him out for three days." I said that I needed more and that if I was awake during the procedure, I would unconsciously be fighting against them.
The resident gave me more freezing spray, explained all the things that could go wrong, and had me sign the consent. Then I moved over to the procedure table, the nurse gave me the sedation, and I must've been knocked out for a bit but it felt like I was instantly opening my eyes only be able to see the towel they place over the face and was choking.
I felt like I couldn't breathe and started to panic. I started shaking and kept trying to cough and all I could hear was the doctor and nurse telling me in a panicked voice to stop trying to talk. I'm not sure why they thought I was trying to talk? Do people do that? I definitely wasn't, I was trying to get the 'I'm choking and dying' feeling to stop. The panic in their voices while they kept telling me that it was almost over, that I needed to stop trying to talk and to just relax, did not help me.
Besides, has telling someone that they need to calm down ever actually worked?
I did not calm down.
I continued to hyperventilate, shaking, and half-coughing until they were done. It was terrible. Once the scope was finally removed and I was able to breathe again, I couldn't stop crying for quite some time. It was traumatic. The doctor kept asking if I was okay and I had no answer because my throat hurt too much to talk and I was just focusing on breathing. I kept shaking my head.
They wheeled me into the recovery room where I laid until the x-ray man showed up with the x-ray-machine-on-wheels to make sure I had no air trapped in my lungs. After the x-ray was done and cleared by a doctor, I was free to go. I got dressed and a porter wheeled me to the front door and then Isaiah and I walked back to the B&B. It was a clear sign that I wasn't given enough sedation when I felt okay to walk around.
Back at the B&B, I did manage to nap for the afternoon before we went out for supper and gelato. My throat was super sore yesterday and still a bit sore today but I haven't had any of the other possible side-effects (temp, coughing up blood, collasped lung, etc...). I imagine my throat is raw from me trying to fight off the scope.
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| Mmmm gelato to try and erase the trauma. |
The doctors always say they understand but then never give me enough meds. I understand why they couldn't when I was first post-transplant as my lungs weren't strong enough to handle that many drugs. But I can handle them now! I was given loads last Nov in Halifax and was out the entire time and it was wonderful. I really hope this doctor charted how terrible it went so the next one, in 6 months, will understand that I'm not joking when I say "I need to be out so give me all the drugs," otherwise I really will be crying.
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